Care4autism

noreply@blogger.com (viji) — Wed, 03 Jan 2024 09:28:00 +0000

Sending everyone wishes for a fantastic year ahead! Due to personal commitments, I've taken a break from blog posting lately. Looking ahead, my consistency might fluctuate, but I'll certainly share anything related to autism when inspired. Thank you for your support and understanding.

Happy New Year again!

noreply@blogger.com (viji) — Tue, 17 Oct 2023 07:38:00 +0000

Third in the series on time management. Pranav Rajgopal's unwavering commitment to punctuality is commendable. His time perception is based on comprehending the situational context and planning appropriately.

Please read on...

1. How do you perceive time?

I perceive time by understanding the situation and subsequently plan accordingly. Sometimes when there is confusion I tend to postpone things or do it slowly according to my convenience. I prioritise the order in which I have to do my tasks. When it is my official work, I tend to focus 100 percent and try to finish the give task well within the time frame.

2. Has "being on time" been a challenge for you, and if so, how have you worked around it? Growing up, what tools and aids have you used to understand the passage of time?

Being on time had never been a challenge for me. I have always been a disciplinarian and taken immense pride in being punctual since my childhood.

On principle, I hate wasting other’s time and I definitely insist on others being punctual too.

Planning ahead on a daily basis is something I have always done and with time it has become an integral part of who I am.

3. How do you prioritize tasks and assignments? How do you handle deadlines ?

I always make a to do list for both, my personal and professional life. I try to focus on high priority tasks first, professionally and personally. I always handled deadlines prior to their completion and thus haven’t had a problem regarding this issue so far

4. What accommodations related to time management help you in the workspace?

Keeping the reminder in the sticky notes and seeing it frequently helps me to complete the task faster in the workspace. Sometimes, when there is a gentle reminder from my superior or my colleagues, it motivates me to do things faster.

5. Have you attended any time management programs? Did it help? If not, why? How can we make these programs more ND friendly?

No, I haven’t attended any time management program so far. If I happened to attend such a program, maybe I get more tips on this. These programs should be more accessible and user friendly for Neuro Diversity people. We should introduce some innovative applications for time management esp. for Neuro Diversity people who will be greatly benefitted and will enable them to do better.

noreply@blogger.com (viji) — Fri, 13 Oct 2023 11:16:00 +0000

Second in the series on time management, Asha Sreedhar speaks of her time management strategies, future planning, self-assessment, tools and aids. Asha suggests that it would be ideal to comprehend the perspectives of neurodiverse individuals and customize solutions when creating practical time management programs.

1) Can you describe your current time-management strategies or routines? What methods do you find most effective in managing your time?

My current time management strategies and routines are following a routine time sheet for my work on weekdays. The method I find most effective is following the outlook calendar for meetings and sessions. On the weekends, if I am going out, I check how far or near is the place and plan the day by checking what time to leave my home as commuting takes time in the city and it is also very difficult to get transport (cabs and autorickshaws) on weekends. The method I find most effective on weekends is my phone with all the apps like Google Maps, Ola, Uber, etc.

2) How do you prioritize tasks and assignments? Can you share an example of a time when you successfully prioritized your tasks to meet a deadline?

I focus on what is important first and follow the outlook timeline schedule to check what tasks are taking place during the week. For example, I prioritized my tasks to meet a deadline by working in the office every day which helped me efficiently without distractions. I got the work completed in the office better without any delays.

3) Are there any specific tools or aids (e.g., calendars, planners, digital apps) you use to help you manage your time and stay organized? How do these tools assist you?

I mostly use the outlook calendar, date and time zone in my laptop, and a clock on my wall. They assist me by telling how many minutes I have till my meeting starts and what is the current time and date.

4) How do you self-assess your progress in terms of time management? Do you regularly reflect on your routines and make adjustments as needed?

I self-assess myself my progress in terms of time management by following a timeline schedule in outlook every day. I don't regularly reflect on my routines and I only make adjustments when things change or when it is necessary.

5) What are the environmental factors/ accommodations that can be addressed to help you manage time better?

One of our most important environmental factors which plays a role in my daily life is the climate that can be addressed to help me manage time better. For example, if it is a beautiful day with clear skies and sun, then it is nice to go for work and outdoors in the city. It will be easy to reach places on time with that kind of weather. If it is raining heavily or if the places are flooded with rainwater, it is difficult to travel and go outdoors. I would not be able to reach my destination on time which will be very slow.

There are no specific accommodations at the moment needed to support myself. I am currently happy with working in the office and at home. But I mostly prefer the office.

6) How much of future planning do you do? What are the supports you require to do that?

I do future planning everyday in my daily and working life. On weekdays, when I am working from home or in the office, I follow a timeline schedule and meeting calendar in Outlook to plan my tasks and attend meetings. On weekends, before I am going out to eat or visit a place, I first call that place and check whether it is open using the Google Maps App in my phone. After that, I use the transport apps like Ola, Uber, Rapido, etc. in my phone to book a cab or an autorickshaw to commute to that destination.

7) Are there any time management programs/ books you have read? If so, what pointers helped you. If not, how could these be programs be made more meaningful for NDs?

I haven’t read any time management books/programs. Each and every individual has their own way of managing time. Each individual is different. When you collect the answers regarding time management from different neurodivergent individuals, it will help develop ideas for NDs.

noreply@blogger.com (viji) — Mon, 09 Oct 2023 05:41:00 +0000

Individuals with autism may struggle with time management due to differences in their executive functioning, sensory impairments, and difficulty understanding abstract concepts. However, there are strategies and approaches that can help individuals with autism improve their time management skills. This series is an effort to understand time management strategies, preferences, tools, remote work vs. office, challenges and accommodations, when it comes to managing time. In this interview, Viraj Bhat discusses his challenges, specifically procrastination. He also talks about his strategies. What stands out is his respect for other people's time, not wanting to be idle at office, which speaks volumes of his professionalism.

1. You mentioned that managing time can be a challenge for you? Why do you think so?

Yes, it is, when it is unorganised, both in work and daily schedule. Sometimes I procrastinate. Since I am not required to go every single working day. Whatever time I spend at home, the routine isn’t fixed.

2. How has your sense of time helped you to structure your daily schedule and adding predictability? For instance, when you commit to a call at 4:30pm, you are prepared. Similarly, If I had requested that you make a call at 4:30pm, you would follow through.

Yes, definitely, because I consider it important that I respect other people's time.

3. Is procrastination partly because a lack of value for your own time?

Yes, to some extent, that is true. Also, part laziness. Sometimes I think I should go for a walk on the weekends in the morning. Then I push it to evening, and that doesn’t happen. I have the intention, but don’t work on it.

4. Could there be other reasons for procrastination? Continuing to work on your special interests, like games/videos. Reluctance to switch tasks. Initiating a new activity. Any other specific reasons.

Main reason is lack of motivation. To do any task, I require either pull motivation, push motivation or simply the interest in doing that task. I mean to say that I require fear of consequences of not doing it or the desire for reward s.

5. Can you share your experiences when you think time is moving slow or fast?

Sometimes at work, time seems to go slowly. I am on time always, but I tend to leave early. If there is no work, I like to leave early, because I don’t like to sit idle. I keep my commitments, as I do not wish to displease other people.

6. How did you organise yourself when preparing for exams or completing papers on time in school and college?

During the initial years, my mother helped, particularly in organizing my schedule around exam periods. I would skip questions I didn’t know or were difficult to answer; rather than trying to answer them. I wouldn’t spend too much time on an answer. I could complete papers on time. In college, I just skipped the examinations, as I had no motivation to get a respectable job.

7. When did you start managing time on your own? Planning, scheduling..

I began independently managing my time only after entering the workforce. For a few months I had also been keeping a clock in the restroom, upon the suggestion of my mother.

8. How do you organise yourself when you have an event to attend on the weekend?

In many cases, I tend to forget. So, I do keep calendar alerts. Mostly, alarms and calendar alerts work for me.

9. If you have many tasks to complete, how do you decide what to do first?

I attend to the one that are important and urgent first.

10. Do you prefer WFH or going to the office.

I don’t have any problem going to the office. But on days when there is less work, I prefer WFH as, I don’t like to be idle at office.

11. Do you do long term planning?

I do long-term planning for my finances. I discuss this with my mother.

noreply@blogger.com (viji) — Tue, 29 Aug 2023 15:40:00 +0000

Shereen Idiculla is the creator of “Learning through Movement” and “Whole body to speech program”. A SLP by profession, she is Hanen certified. She is also a feeding therapist and an AAC coach.

In this interview, we have discussed the following topics:

1. The importance of movement in brain development.

2. Primitive reflexes.

3. The terrible twos and brain development.

4. Reflex integration followed by motor and sensory integration.

5. Integration of the right and left hemispheres of the brain.

6. 3 phases of the LRM program and Shereen's roadmap to speech.

Congratulations on REALIZE! I gather it is a holistic approach towards communication rather than a piecemeal approach. Bottom-up rather than a top-down approach.

This is actually the first time I'm talking about Realize. It's been a passion of mine for a long time. This thought has been in my head for years. But I never did anything about it. When working towards speech, communication and language, we work at the top tier of the learning hierarchy. For me, I never knew I had to work below that. When I passed out of college, or when I started working, there was no conversation about, how much the body contributed to developing speech? As SLPs, we work on speech; somebody else does OT and PT. It was not something that I could connect to. This concept of movement and brain activation came a few years ago when I was invited to speak at a conference in Kolkata. I heard Joanne Lara, another speaker, talk about Autism Movement Therapy. And for me, it was like, oh, okay, this is a whole area that I need to look into. I love to dance. That's how I got hooked on it. She had a demo class during the conference. And it just sounded so interesting to me. I told her that the next time you teach this course, please let me know because I'd like to participate. She had come down to Kolkata, and conducted the AMT course. And I'm so grateful even now that I got to attend it. Unfortunately, she is no more. But AMT really started driving this whole concept of how movement is so important for the brain to get to speech and language. That's when I started ‘connecting the dots’. I started exploring music and movement. I created my program, “Learning through Rhythm and Movement” (LRM), which I do online. I started this with parents online over 2 years ago and now I have many groups running for children below 6 (TOTS Group) and for children above 6 years. My goal was to explore movement as much as possible in a fun way. But as I explored, I started getting a little stuck, because some of my children were having extreme difficulty in moving, be it creating movement in the different planes or coordinating their upper and lower body or their right and left side. The parents were also finding it difficult.

And so, I started researching to see what next? By then I had started with Movement Based Learning (MBL), a course which again changed my life. The way I work with children also changed. As time passed, I tried everything I could get my hands on in terms of movement that speech therapists could do. Not an OT/ PT program. That would have gone above my head. But I started looking for what could be holistic, and I explored every movement training that came to India or online. And I started understanding the importance of movement in brain development. Another change maker for me was Dr. Robert Melilo’s certification courses. That's when I understood the importance of primitive reflexes and its effect on brain development This is something that should be checked but unfortunately, is not, by professionals.

What do you mean by primitive reflexes?

Primitive reflexes are these automatic movements that we are all born with. And it builds the precursor for us to develop controlled voluntary movement. For example, you have a primitive reflex of the baby where when you touch the palm of a baby, she immediately closes her fingers around your finger. It's a reflexive movement. It's not because they're showing love at that point of time. And this reflexive movement helps the brain to understand that it can do this movement. And then, as they gain more control, that is when they learn to grasp, they reach out for things voluntarily. Another example, right now if someone tries to hit you, you turn away. It's a reflex, right? We are born with those reflexes for survival. So primitive reflexes start in-utero. And it continues to grow for another six to eight months. There are different reflexes, and they get integrated by about one year. When I did the Melillo certification course, I realized there's a lot of research now showing children with neurodevelopmental delays, have retained primitive reflexes. So when these reflexes do not go away, it begins to affect brain growth. I started exploring, asking parents to go and check with professionals. They were turned away, with the explanation that it was only done for babies. But that's not the case. I think they do not give primitive reflexes its due. I'm not sure what it is. But I'm hoping that changes. Because I know a lot of professionals who are now learning about it. I am crossing my fingers that it will benefit more people and families. All my children, without fail, have 1 or 2 primitive reflexes, or some of them had pretty much all of them. And that's why they struggle with movement. So I learned a little more, did more research around that. I started with a few families saying, you know, let's try some things together and just see what works. When I started seeing things work. Then I expanded it. I started a parent group training program, for a three-month period. The training would equip them to carry on with the program for a year. Reflexes will take one year to one and a half years to fully integrate. It's not a one day process.

We started to observe changes somewhere between 2 weeks - 3 months. And within those three months, we had a pre and post study kind of thing, a basic one. We kept scores through checklists. The scores started changing, and so did the sensory profile. So it was not just movement getting affected, but also awareness, focus, understanding, behaviour, emotional development and academics. The biggest one was that it affected speech without speech intervention even starting. That was a big “aha-moment”! Because in three months, especially for my little ones (below five and six years), they started using speech more effortlessly. I realized that by just by working on the reflexes consistently, the parents and I were seeing huge leaps when speech therapy was not even in the picture!

Another thing we saw when the integration process started was “behaviour” that you normally see when children turn 2 years old. The opposition, the manipulation, the tantrums, understanding of self… all of this typically happens at 2 years and goes on to roughly 4 years of age. For children who missed these milestones, these “behaviours” come in when reflex integration starts. It’s not a bad thing… in fact it’s a very good thing! It indicates changes in the brain and should have happened, but didn’t.

Typically, the “terrible twos” involves a big brain development jump. Autism is commonly diagnosed at this age. This is because the big brain change causes an imbalance between the right and left hemispheres of the brain. According to Dr. Robert Melillo, the left brain gets stronger and the right brain gets weaker at this time for children with autism, and this imbalance causes all the “symptoms” to appear. If you look at the triad of symptoms of autism (deficits in social-emotional reciprocity, nonverbal communicative behaviours used for social interaction & deficits in developing, maintaining, and understanding relationships) – all of these are right brain functions.

The right brain is the social brain while the left is the logical & analytical brain. The right brain looks at the big picture; the left brain looks at details. I’m sure we have seen those on the spectrum noticing the smallest of details, like the stapler having moved even an inch from its position - this is an overactive left- brain function. You also have children who can read but not really understand what they're reading all the time. Reading is a left brain function while comprehension is a right brain function.

So if any kind of imbalance occurs, it makes it difficult to connect the dots. And that's why we see those on the spectrum being able to memorize information by rote but not use it in a social context. They might have a vocabulary of 20,000 words, but they are not able to use it. Because that's a right brain function - to be able to use words and language for a social reason. This is what we need to interact or develop relationships with peers or parents or others.

But, now what happens when the right brain is weak, when there is an imbalance? - Well hemispheric integration doesn't happen and social communication and other skills get affected!

I like to use this visual when explaining this to parents. It's a learning hierarchy which shows the bottom-up processing of the brain.

This is a pyramid of learning that I use. It shows that the foundation of learning starts with the integration of primitive reflexes. Sensory processing and sensory integration can only happen if these reflexes are integrated. Traditionally, for children with autism, ADHD, dyspraxia, and other neurodevelopmental disorders, traditional therapy works on the superficial skills – and this is why integration doesn’t happen for a social and dynamic purpose.

I will continue to do speech therapy and oral placement therapy. But I have been getting such wonderful feedback from parents after they worked on reflex integration, that now I have started insisting on it. I have also been concurrently building a proper data model. The checklist that we had showed us that scores have changed, where the imbalance could have been 50; the imbalance now is at a 35, for example. The imbalance is reducing. If the imbalance reduces, that means the brains are getting more into balance. And when the brains balance, that's when integration happens. It's fascinating right now for me! I'm at the top of the world exploring this, as this is what I have been missing all these years.

I continue to explore kinesiology - the study of movement and how it affects brain development – which I feel has not been given its due importance. I'm on a personal mission to figure out how to break these movements so that parents can understand it and use them effectively with children. So I'm working with students and parents alike to see if we can create a balance, a positive environment where the children are learning naturally rather than being just told to “sit down”, “look at me”, “do this”, learn this, “pick this up”, “show me that”, etc.

What is the neural pathway that connects all of these?

Essentially, we have three types of brain‌. The primitive brain, which is what we're all born with, for survival, it takes care of all the survival skills, like breathing, our heart rate, digestion, etc. and teaches us that we are safe; the emotional brain, where we learn about emotional regulation, how to connect with the environment, and how to be social; and the thinking brain, which helps us make decisions, learn concepts, think on our feet, etc. So we need neural connections from here to here (Shereen moves her hand from the back of her head to the front). But, traditionally we start working directly here at the neocortex (pointing at the forehead). If you look at most of the therapy approaches, we focus only on the neocortex. That's why the children struggle, because the right connections haven’t been established.

When babies are born, they learn about the world around them by moving. They start to explore their body, their senses and create different movement patterns. They learn to crawl, which helps them understand their right and left coordination and get both hemispheres of the brain to talk to each other. Gradually they learn to stand against gravity, learn to walk and by the end of the year, that is when meaningful speech develops. So what this tells us is that its MOVEMENT, purposeful and mindful movement that triggers development and maturation of the brain. And as a speech and language therapist – this is what will help me get towards my goal of speech, language and communication.

Just as an observation, we skip writing as the child can type; accommodations that benefit the child immensely. In a phased approach to motor development ‌are we overlooking a fine motor skill; which may be beneficial in the longer run?

We can and should give accommodations to children so that we give them a platform to always succeed and not fail. Failure demotivates us and brings down our confidence. Learning will never move forward if we our confidence and self-esteem is poor.

Some skills take time to develop, it’s not going to happen overnight. So we need to give them enough accommodations till those skills develop.

If children have difficulty writing, we got to go back and ask – why the difficulty? What movements have been affected? Where in the foundational level did things go haywire. Are the presence of reflexes causing postural, balance, sensory processing and/or writing difficulties? Are the movement patterns they have created rhythmic? This, again is important because it’s not just about creating a movement pattern, but about creating a coordinated rhythmic sequenced movement. This is your fine motor control. Children can probably run, skip and jump, but can they coordinate their body to play a sport? This a big indication that movement patterns in the body have been affected, which could affect a variety of other skills.

In autism, the earliest indicator for autism is movement. At six months of age, you can figure out there is an asymmetry in the movement. Movement is a huge thing. I'm discovering more and more that we've just not given it enough importance.

My goal is to let my fraternity know that we should not just sit at the table and teach them anymore. It doesn't work. Get up, move around, dance around, do something that involves movement and integrate this with learning. That's when you'll actually see effective changes. I'm not saying you won't achieve goals because children will still learn. That's how plastic their brain is, but integration is not going to happen easily.

And to be apply this knowledge to learning?

Dynamicity of thinking and learning should always be our goal. Because that’s how we deal with the world. This can happen only if there is an integration of both hemispheres.

If there is an imbalance, we have to find ways to understand where the imbalance is (right or left) and start working on it from the foundation up. For example, when children have vocal tics, or severe immunity issues, it indicates an hyperactive left brain. The right brain is supposed to inhibit and control the left brain function. But if it is too weak, it cannot do its job, which can make the left brain go hyperactive, causing OCDs, vocal tics, anger outbursts, food allergies and sensitivities, sleep difficulties, sensory processing difficulties, etc.

Apart from movement, what are other factors that can have a high impact on learning?

I've created my roadmap to speech because at the end of the day, I'm a speech and language therapist. I'm trying to get towards that speech-language-communication component, which then integrates into social situations. That's the ultimate goal. For a speech & language therapist, this is what we all work towards.

So, for my roadmap, I look at going into primitive reflex integration, sensory motor integration, body movement with music, co-regulation, naturalistic and play based interactions, AAC, oral sensory and motor stimulation, and finally speech.

One foundation of my LRM program was based on the idea that our brain is a predictable brain; so using music and movement enabled the building up of motor movements, sequencing, coordination and, specifically, motor memory. If we do not activate those areas in the brain (the cerebellum) that retain our motor memory, every time we do a task, it will seem like a new task. We need to activate these areas of the brain so that these memories get stored and become automatic for us. When I reach here and then work on interaction and language stimulation, things start happening faster and more effectively. The speech that develops becomes something that is meaningful and not just parroted or repeated blindly. This is when any traditional speech therapy approach will work.

So I have Phase One, which is primitive reflex integration, Phase Two, which goes into interaction and communication, and finally Phase Three, which goes into speech. All these phases are combined with body movements. This is how I have broken it down. Again, it could be wrong. I don't know, I'm exploring!

How does this approach work for young adults?

The brain can pick up at any age. It's a long process, but may not be that long either. We saw changes in 3 months. There's one adult I've been working with for many years, where we struggled with speech. But now, after working on integration of reflexes a little more, his sounds are smoother, more effortless.

For a third person, hearing about this might not be a great thing. For me, it's a huge improvement! We've struggled to get a sound. Now I'm getting a sound and you're moving to combinations. So, for me, that's like magic. Because I know how hard the parents work with the child and how hard the child worked for so many years to get a single sound out.

For the older ones, we immediately put in accommodations – we start AAC, be it using devices, letter boards, etc. 85% of my population are children with a Mind-Body disconnect. They cannot move their body the way they want to. So that is why I explored movement because that was the population I was mainly working with. Motor coaching them through the motor patterns of using AAC effectively before moving on to cognitive components is what I have seen work wonders again and again. We follow a language ladder that helps us move up the cognitive communication skills, and our goal is to ultimately get to, in a year or two, to open-ended communication between us touching their hand or prompting them.

What's the Plugged Into Series all about?

I started this series called “Plugged Into” on my official Instagram page to share my professional “Aha” moments - Moments that changed things for me as a professional. I would love to collaborate with both professionals and parents on this, but I think that will take some time. So, whether you're a professional, or a parent, can you get plugged into what is needed and what could help? That was the idea behind the series.

Thank you, Shereen, for explaining in great detail how movement impacts learning.

noreply@blogger.com (viji) — Thu, 24 Aug 2023 04:24:00 +0000

Namrata Pai is the founder director @ Magpie speech therapy and co-founder at Magpie think labs. She is a certified speech language pathologist, with over 15 years of hands-on clinical experience in communication paediatric disorders. A gold medallist, in the Hanen program, she is well versed with Oral Placement Therapy, Play Therapy, Structured Teaching, social thinking, LAMP (language acquisition with motor planning), PROMPT (Prompts for restructuring oral muscular phoenetics targets) and PECS ( Picture exchange communication system). Some of her main areas of interest include; Social communication issues in children with ASD, ADHD and LD, AAC, and naturalistic intervention approaches.

During the interview, the following points were discussed.

Dynamic and domain specific assessments
The powerful Test, Teach and Test again concept
Executive functions in the context of an SLP
Goal setting for young adults on the spectrum
Bridging the gap between performance and expectations
Naturalistic intervention techniques; RDI and Declarative language.

A lot of your work is based on dynamic assessment and goal setting. Could you please elaborate?

My background is in speech language pathology. When I started working, I realized that a lot of the standardized assessments for speech and language in autism, do not support the intended purpose. What is the child's current communication level. What might be ways in which we can support it? That information was not, coming across as it should, through these standardized tests. These tests assumed a lot of times that the child will be verbal, or we'll be able to respond verbally, maybe also in a particular format, or detail, which, of course, we know, is difficult for children. And since it's the spectrum, we are looking at children with very different abilities in terms of speech, and language. I think the first couple of years, while in my practice, I realized that, these were not leading me anywhere to how I can exactly help the child and the family. Also, that we are looking only at the child. When we administer the test, a lot of times we thinking about the challenges, and the weaknesses. But are we looking at the strengths?

Second, would be the family. The family is approaching you for help. How do we make sure the family is a big part of that communication process? How do I make sure that I identify factors related to the family in terms of their conversation style, routines, priorities. As a SLP, I might have a certain lens I'm looking through, however, the parent might find a different situation more distressing than just the speech aspect. With all these challenges, I felt that let me see what I can do around the assessments. I started documenting a lot of my sessions, and making notes of it, as I would finish. I realized, it was falling into a very simple methodology of test, teach, and test again. I realized that every time if I went in with this mindset for a session; I have a particular goal, and some takeaway for the family on how they can generalize it, in a span of maybe six to seven sessions, we should be able to reach a point where the family, self and the child feels more independence in the communication. This was a completely contrasting approach to IEP, where you're planning for a year, and one has this whole vision that this is where the child will be in a year. Practically, there are a lot of challenges and failed benchmarks in the timeline. When I started implementing this model of test, teach, re-test, I realized there is literature supporting it. I started reading up more, realizing that this is a form of dynamic assessment. The Dynamic Assessment principle comes from the Psychology background. It was Lev Vygotsky who initially proposed it and have used to see how to mainstream children with special needs into inclusive classrooms c using DA. The research began there, but it has now been adopted by many other professions, including SLPs.

You have also spoken about domains?

Domains is something that is close to my heart. Because, as I previously stated, when I first started, my lens was really focused on speech, and perhaps language in general, but then parents asked me how I could help them with these behaviours. Why is my child flapping his hands? Or why is it that it is difficult for him drink water from a glass? Such specific questions, which do not come under any standardized assessment. I understood that if I was going to actually assist, I needed to answer these questions. I had to equip myself to understand how I could best assist them based on the a) information provided by the parents, b) what I observed in the child, and c) what I read or researched. Putting all three together is when I started coming up with domains, and I realized that it can be made into really small parts because language is vast like an ocean. When it comes to language, joint attention can be one component, and emotional expression can be another. Yet another could be being able to hold a conversation. We can have different domains within what we are assessing, so that we become more and more specific. And, in many cases, with this domain-centred approach, the family and child may offer me feedback on the domain they believe we should proceed with.

You said at one point that you are viewing communication through a particular lens, and then the family finds something else disturbing… At some point, did you think, executive functions also come under the realm of an SLP? Especially when working with the family as well.

You have pointed out a very big aha. Executive functions really govern a lot of our independence. A lot of our mainstreaming is about taking up jobs or just being, contributing to a routine and a family structure. And what happens is, these executive functions generally are addressed from all by a psychologist, a lot of its background comes from psychology. But the same time how I felt, I wanted to add executive functions.

For children below eight years, a lot of executive function is just about how are they able to plan their day-to-day routines, participate independently, or with help depending on the child's motor planning and facets related to the child’s strengths? While if we are looking at a child who's maybe about eight, then we are looking at function from a bigger perspective of; Am I able to read the information around me? How do I use this information to make myself heard/ seen or advocate for myself? Or look at how do I express what I'm thinking in a manner that makes sense to the other person. Yes, it plays a huge role, and incorporating that, in our early intervention program has been a focus.

For example, I have parents who come in with a four-year-old and telling me that, I want my child to learn maybe 50 new words, as part of you being a speech therapist. But I ask them, is your child independent in using the toilet, or feeding himself. These are not questions they expect a SLP to ask. So how am I going to help in this executive function aspect? I think the narrative of telling parents that we can contribute to it because a daily routine is also a time when you're communicating a lot. It's, a lot of back and forth, which happens and it can be used in a way to not only build executive function, but also some communication, which can eventually get to that final goal of those 50 words you want your child to learn. Explicitly telling parents that our program at Magpie, covers these aspects, keeping language and communication in mind is something which I had to give examples to parents, because they might not realize that they can actually take help for this from SLP.

Goal setting is another major area of focus. How do you do that for teens and young adults?

This is our process. If the child can communicate in any form, we ask the child why he has come to our place at Magpie. What are the things which he feels he needs help with? One part of this is because I feel a child himself telling me that, this is easy for me, or this is difficult for me, sometimes it can be that they are echoing what they have heard their parents talk about. And that definitely gives me insights about the parent as well, because they are surprised when I first talk to the child. How do you think I can help? Some children completely deny they need therapy. They state I am absolutely fine. I'm here because my parents got me here. Then we try a different approach. I would ask them what are some things which you like to do, or you are good at. So, our conversation might start from there.

The first part is trying to look at the child as an individual, and not as somebody who's been brought by his parents for fixing. Just supporting in terms of skills, this is his weakness, we are going to support him through this. That's the first thing, which is a drastic change from a child below eight years where, maybe I'm talking to the parent mainly. The second thing is, when I'm talking to parents, most of the times the child is not there, whether the child is pre-verbal or verbal. I feel most children on the spectrum are able to understand and I feel what is happening around them. They are so stressed with, meeting so many professionals, and maybe going through the whole routine. Parents concerns revolve around the child’s inability to make friends, making him comfortable in a classroom setting. These are some common concerns of parents whether they walk in with an older child or a young adult.

The second focus is, a lot of emotional regulation. Because what happens is we have children who are either very expressive in their emotions, their buckets get too full too soon, which means we see them express their anxiety, express their anger or disappointment very often, in ways which sometimes can be very difficult for a parent to understand or manage. It can be very stressful for the parent as well. It can be that or it can be completely the other extreme, where the parent is really struggling to figure out what my child is feeling. What is he going through in a particular situation? The very amazing thing about emotional regulation is it's nothing related to the severity of the spectrum. We say mild, moderate, severe autism, but I think there is no connection between the severity and emotional regulation. It's just so independent. A so-called severe autistic can have a beautiful bond with his parent and be emotionally regulated through his parent; yet I can have a so-called mild autistic child who nevertheless struggles with emotional regulation. I believe that the piece where I see emotional regulation leading is the child's ability to connect and feel comfortable. He doesn't feel threatened that often; he can connect with his environment, can maybe connect with adults or peers. This child now needs support with how do I express what I like or what I dislike or what I want to do? And how do I keep myself together in spite of rejections? Social rejections, because then we are looking at a child who is trying his best to adapt and make friends and be in this mainstream classroom. Maybe inclusive classroom, where he's made some initiation towards his peers, but he has been maybe at times, rejected unknowingly, at times ridiculed or bullied, knowingly. So, there can be different situations, which can make this child very sceptical and not ready for peer interaction. Though they want to, they might find it very intimidating. And it's not a fear of failure. And in that case, we are definitely looking at the peace of having one companion, one friendship, or a small group of peers where the child can share and, feel comfortable. Understand that there can be bridges built with peers, and where we are looking at some group support.

We hold paired sessions in which we attempt to match children based on this social emotional learning component. We try to understand how the child can feel good and comfortable in a social interaction without being judged, or without being constantly corrected. It’s not therapy. I feel its more of coaching to impact on a lifetime of opportunities. We are there to just moderate.

This is something you have been hearing a lot from parents; expectations. How do you bridge the gap between expectations and reality? “How much improvement has the child shown”. It finally comes down to that.

It’s a process. Families are at various phases of acceptance, depending on how much they have accepted the fact that their child is neurodiverse. Not only accept, but accommodate around it? I believe that what happens in this path is that the gap between expectation and reality can be very large for some families, where they are frequently looking for neurotypical means of affirmation? He needs to go to a mainstream school, he needs to be good academically, he needs to be able to build friendships. There's nothing wrong with this expectation, because I think every parent definitely deserves to expect and has all the right to think about the best for their child.

Autism being very complex neurological condition, where do I set my expectation? Where do I set my boundary? I think one part is definitely when parents are in touch with a lot of other parents who have a similar background. I think that really helps a lot more than even meeting a professional. We have different kinds of people, professionals, kid enthusiasts, quacks and not all of them have an ethical practise. The first few years, the emotional aspect takes its toll on the parent and nobody looks into it. It is a lot of assessments, reports etc. Then they decide to step forward for the intervention part. As a professional, how do I tell my parents that this is something which we can achieve versus this is something which is difficult? I think that clarity is something which parents’ ought to be given? I have learned this after many years of practice that some things which are difficult, I believe you need to tell the parent that this is really difficult, this is not possible. And why is it not possible, I think trying to gather being a detective and gather those clues with the parent. It is my responsibility as a professional.

I think if parents get logical answers to their questions, they also start settling into the process. And they realize that this is why it's hard. It's not that I can make the child do it. It's not that he's stubborn or intentional. It's not that he's lazy. So, I think that piece of knowledge if they get from one professional, if we have a bunch of individuals who think the same way or support the child in the same way, it just makes it so much simpler for the parent. What happens is, there might be a child who comes to Magpie and we are really trying to normalize the process of self-stimulation. A kinder word maybe enthusiasm, with neurodivergent affirming practises. What matters is the intent with which we are talking to the parent and the child. And the parent might hear these different things. One professional says it has to stop, it's bad. While another professional says, It's okay. This can again widen that gap of expectation and reality.

Speaking specifically about our practice, we are very particular about bridging the gap. When I take in families, I explicitly have this question for families that, where do you see your child in the next three months? Where do you see your child in the next one year? I'm just trying to gauge the expectations, and then, start from there. It's a process, a journey for both the therapist as well as the family.

I take up any two goals. I always have one goal, which is the parents’ priority, which we might try to, discuss and come down to an achievable goal. It is because the parent is totally invested in it, then I know I'm going to get a lot of support in achieving it. Versus we might take one from a professional perspective or just looking at the bigger picture of the child and decide another domain to balance the action plan.

You recently met Linda Murphy. How does it overlap with your existing practise. And what have been your takeaways?

When I started my practice, I really didn't have any colleagues who followed a similar methodology in Bangalore. As in it being child -centred, family- centred, naturalistic. We were looking at traditional speech therapy. Flashcards based approach, tabletop approach, or the medical model. Second, I was kind of figuring out my path with dynamic assessments, and making it as research backed as possible, collecting clinical evidence. Assessments, Documentation, the challenges… I travel every alternate year, to different places to gather information, knowledge, exchange ideas, keep myself and my team motivated, bring in new practices. I came across Linda’s work. They followed something called RDI (Relationship development intervention). At that point in time, Linda was mainly doing only RDI.

During the pandemic she actually worked a lot on co- regulation, and declarative language. This is one space where she has done amazing work and I totally loved it. It was a whole new outlook on neurodiversity affirming practise.

It’s about looking at the child from the social emotional learning perspective, looking at it from making it achievable through group dynamics, rather than having the child on a one is to one where we trying to teach a skill, but rather doing it through a paired/ group activity, in the moment learning through activities, which look very natural. As simple as sharing about, what they had for breakfast. It can give a lot of insights into sharing perspectives, thinking in alternatives or possibilities, giving time or just listening to the other peer.

Her team also is a mix of professionals. She has a mix of speech language pathologists along with educators and psychologists. I felt that apart from being interdisciplinary on paper, can we have professionals who are maybe working in their own ways with children on the autism spectrum, but still can contribute and collaborate so that we are looking again at the child's overall growth in communication, social and emotional skills. These aspects are something which really have made me stay in touch with Linda, and as generous and warm as she is, every time I go, I get to observe sessions or be with her during her sessions. There is so much experiential learning happening.

Thank you, Namrata Pai for sharing your ideologies and thoughts. It was wonderful talking to you.

noreply@blogger.com (viji) — Tue, 01 Aug 2023 04:55:00 +0000

So true! This post is by Hari Srinivasan, a Ph.d. neuroscience student at Vanderbilt. Some very interesting pointers have been articulated by Hari. The complexity of the disability, inadequacies in autism research, stressing the importance of inclusive reserach participation, instances where abilities are oversimplified or not adequately understood, reconsidering research methodologies.

Please read this informative post.

https://time.com/6299599/autism-research-limited-essay/

noreply@blogger.com (viji) — Sat, 15 Jul 2023 04:05:00 +0000

Meet Sanjith, a young boy with autism who has an asoociated medical condition. To meet his unique challenges, Sanjith's parents, Prashanthi and Sudhakar Vankamamidi, recognize the importance of increased research and understanding within the medical community. They feel healthcare professionals must move beyond perceiving these challenges solely as behavioural concerns.

What are the related medical conditions that your child has?

PANS(paediatric acute-onset neuropsychiatric syndrome)/PANDAS(paediatric autoimmune neuropsychiatric disorder associated with streptococcal infections along with ASD. Sharing a link to a guide on PANS.

How do these medical conditions impact your child’s overall health and well-being?

Sanjith, suddenly develops severe anxiety and OCDs. Just a minute back, he would be perfectly fine. In a matter of seconds, he could take on an entirely different persona. He sleeps for less than 3 hrs a day. His eyes close for a split second during the day...that counts as a nap. He wouldn't want to stay at home. He would seek constant movement, solace in car rides. It takes months to get back to baseline. Food intake would be very minimal. In addition to causing regressions and introducing new sensory challenges, each flare (flares are sudden exacerbations of symptoms) sets him back. It becomes a relentless cycle of progress, followed by setbacks. Each flare leaves its mark. The respite of six months free from flares was a period of remarkable growth, emphasising the profound impact these co-morbidities have on his development. At times, the burden of these medical complexities can make autism itself seem more manageable.

Have you faced any difficulties in accessing healthcare or accurate diagnosis for these medical conditions due to autism?

Yes ...most of the time, doctors just brush them off as common symptoms. They don’t even listen to us completely. Like recently, when he had a flare and was unmanageable, we had to rush to a famous hospital in Hyderabad. Doctors just denied treatment. His heart rate was around 180. Still, they didn’t feel the need to physically examine him. Everything was based on our input. They thought it would be a medicolegal case if they admitted him. Unable to find help, we just relied on CAR THERAPY. (Moving around in the car till he is better) Antibiotics help to a large extent but someone should at least physically examine, right? The unwillingness to listen and comprehend the complexities is disheartening.

Have you noticed any common misconceptions among medical professionals regarding autism and associated medical difficulties?

A lot. Most of them think that it is behaviour. They term it as hyper. But the truth is he is having some issue going on and doctors are just brushing it off. When we say it might be strep, doctors think otherwise. They have a notion that infection should manifest as high fever, runny nose, sore throat. Sanjith never has these book defined symptoms. Throughout this journey, we could find only one doctor (my childhood paediatrician) who said that there is some infection. This was during our starting phase of PANS/PANDAS (when Sanjith was 5yrs) He prescribed antibiotics and a single dose of it brought Sanjith back to normal. We were able to learn about PANS from him. While his dedication remains unmatched, he is limited by his age and unable to read up and help us further on this subject. It's been 9 years, but we're still unable to get competent help during emergencies.

What suggestions do you have for healthcare professionals to improve their support forindividuals with autism in managing their medical needs?

There are many increasing cases of PANS/PANDAS. Parents who aren’t aware rush to the doctors for help. Instead of brushing it as behaviour, please help and guide us appropriately. They should learn that autism isn’t just behaviour. Even autistics have health issues. It's high time to reconsider textbook definitions of autism.

What resources have been helpful to you in your journey in addressing the associated medical conditions?

It is usually fellow parents who are facing the same storm as us. There are a few biomedical doctors and homoeopaths who believe in PANS/PANDAS. We try to get help from them. My husband is in charge of the medications (mainly supplements), and he has been a great help to Sanjith.

noreply@blogger.com (viji) — Wed, 12 Jul 2023 02:17:00 +0000

“Things that have happened over the last few days have made me think seriously, especially those with serious medical issues. Everything is brushed under sensory and behaviour. Some simply deny the treatment because they don't want to take the risk.”

It is this post by a parent that prompted me to take a closer look at the comorbid medical conditions associated with ASD. There is a lot of despair and helplessness when it comes to handling these conditions, for many reasons.

As part of this series, we attempt to understand these co-morbid conditions, biomedical interventions and the difficulties parents face in accessing health care. These posts are not intended to be medical advice or treatment recommendations.

Starting this series with an interview with Dr.Shilpa Rao. Dr. Rao is a practicing pediatrician with over 25 years of experience. The combination of experience as a therapist and as a clinical diagnosis specialist makes her an excellent autism specialist. She has also conducted many training workshops both for parents and professionals alike. Her son Shubham is an adult on the spectrum.

What are the common conditions that often coexist alongside autism spectrum disorder (ASD)? Co-morbidities as they are addressed.

Common Comorbidities Associated with Autism can be classified as Medical & Psychiatric Comorbidities.

To begin with, ASD can coexist with the listed Neuro Psychiatric Disorders like ADD, ADHD, OCD, Tourette’s Syndrome, Anxiety, Sensory Processing Disorders, Learning Disabilities & Depression & Intellectual Disabilities.

Medical Conditions like Mitochondrial Dysfunctions, Obesity, Fragile Syndrome, Down Syndrome, Muscular Dystrophy, Epilepsy, Sleep Disorders, Gastrointestinal Disorders, Inflammatory Bowel Disease, Food inTolerances and failure to thrive, ENT Infections, Dental Infections, Metabolic Disorders & Auto-Immune Disorders.

It is important to rule out & identify Associated Co Morbidities as they influence the Development and severity of symptoms and by itself cause behavioral issues, therefore; it is important to consider the child with autism as a whole and not overlook possible co-morbid conditions.

The Physician should rule out presence of medical conditions before moving on to other interventions and therapies. Co Morbidity is the presence of one or more additional disease or disorder that coincide with a primary disorder and most of them are treatable.

What is biomedical intervention?

Biomedical Interventions are understanding biological and Medical Aspects of autism.

There are many biomedical interventions out there. GFCF, chelation, Immunoglobulin therapy. A number of factors make biomedical interventions unsuitable - lack of scientific evidence, potential harm, lack of individualization, parents playing doctors,lack of standardised test results, financial implications, different approaches to treating the same condition, etc. It is overwhelming for a parent. How are these concerns addressed.

It involves assessing, understanding and treating a full range of Associated Medical Issues like Metabolic Dysfunctions, Nutritional Deficiencies, Genetic Auto Immune Dysfunctions, GI Issues and sleep disorders Behavioral and Psychiatric Disorders, environmental diet and others (BIOME &MITOCHONDRIAL DYSFUNCTIONS)

The goal is to optimize not functional but optimal health, through diet and nutritional supplementation and in some cases hormones to treat identifiable medical issues.

Immune Therapy has been making its rounds and clinical trails are on, especially if an Auto Immune Trigger is identifiable. This Therapy helps by boosting the immunity and reducing the inflammatory responses in an individual with ASD. It restores balanced to the immune system there by reducing Autism Sign & Symptoms.

Chelation Therapy: Several Medical Research have shown that heavy metal toxicity in individual with ASD like lead, mercury, Arsenic.It is a medical procedure that uses certain Ante dote to eliminate heavy metals and should be done under strict medical supervision.There are very few clinical trials on ASD and Chelation Therapy and its safety in children with ASD needs in depth studies yet.

Personally, I would not recommend the same as in India there are not much studies to prove its safety and efficacy.There is no specific cause yet identified for ASD and genetic research is yet to pinpoint specific causative gene.

Cure is the eradication of a known cause. So, cure is impossible by any mode of treatment, just not bio medical interventions.

Scientific Evidence on Bio Medical Research are available to read especially on Neurotransmitter dysfunctions, Gut Dysbiosis, Auto Immune Triggers and 5 MTHF / MB 12 insufficiencies and so on.

I don’t see a potential harm all though using nutritional supplements to enhance gut brain functions.

There are many common Biomedical Issues that can exist with ASD like already mentioned Mito Dysfunction, Oxalate Sensitivity, Dopamine Inhibition so individualization is not always present in all patients. Individualization is possible if a Biomedical Intervention follows a prior detailed clinical history, evaluation and screening test and treatment plans and individualization happens in choosing the supplements and their dosages. Standardized Tests are now available to some extent in USA, UK not yet in India due to lack of professionals willing to contribute and learn about ASD.

Financial Implications are a possibility due to tests being shipped aboard. Not many efficient labs in India to test at a higher molecular level.

Therapies of different kind are overwhelming too e.g.: Speech Therapy VS ABA or OT VS SI.

Any medical issues in ASD are complex by itself and need time and perseverance. Biomedical Interventions are a marathon and not a sprint. No quick fix is available, having said that many individuals with ASD have benefitted with Bio Medical Interventions.

The medical community has not reached a consensus on the existence and validity of PANDAS (Paediatric autoimmune neuropsychiatric disorder) as a clinical entity. It is a condition that proposes a link between streptococcal infections and sudden onset of neuropsychiatric symptoms. To my knowledge, you happen to be the only practitioner dealing with this in India. Parents are consulting with doctors in both the US and the UK. Your views on this.

Medical Community and Autism in India are Diverse issues. Pans & PANDAS is a newer clinical advent and not many doctors are aware of it yet.

I am fortunately aware, read and treated and treating many individuals with ASD and pans & pandas.

Forget about Pans many doctors cannot diagnose Autism yet Pandas is a term that they may not have heard yet.

Indian Medical Journals or textbooks are not upgraded yet sadly they have yet small passage about Autism in there, in India doctors choose their patients and that has to change.

Awareness about ASD and associated medical conditions is a must and I am willing to train provided they are willing to learn.

Pandas is a red alert condition Associated with ASD. Pans & Pandas are severe forms of OCD that appear suddenly in young children accompanied by other confusing and distressing symptoms, usually trigger by an streptococcal infections that triggers extreme Auto Immune issues, other infections that can trigger pans include LYME Disease, Flu, pneumonia, mononucleosis & a few cases of occult gut or viral infections.

Common Symptoms include OCD & Severely restricted food intake and at least two cognitive behavioural or neurological symptoms, anxiety, separation anxiety, emotional lability, depression, aggression, irritability, oppositional behavior, tics, developmental regression, deterioration of learning, sensory & motor abnormalities, sleep disturbances, bedwetting, urinary frequency, pacing, wandering, hyperactivity & hallucinations.

Treatment includes antibiotics, antihistaminic which temporarily reduce symptoms, but remissions are very common.

Can pans go away? A flare up does not last forever and symptoms do eventually subside and research says by adolescence as immune systems mature symptoms fade away yet can revert back.

Parents commonly express frustration that their concerns about medical conditions are being dismissed as solely autism-related behaviours and sensory issues, resulting in the use of antipsychotic medications as a treatment approach.

Role of Anti-Psychotic Drugs usage is yet again inadequate knowledge about ASD and its Co Morbidities take many parents to psychiatrics who have no clue on gut issues, Auto Immune Dysfunctions are contributing factors to anxiety in ASD and they cannot. It's like an ASD child has hyperactivity and aggression. It's due to many associated factors, just not bad behaviors as they think.

Serotinine the happy hormone is generated in the gut so you can never be happy and calm until you heal the gut. The gut brain axis has to be considered when treating anxiety, aggression, & sleep disorders. Have you not seen so many individuals with ASD and antipsychotic Drugs but yet are the same?

Root cause identification is a must and needs a great level of expertise to test and treat.Until you heal the gut, nothing works.

ASD is thus a whole-body disorder originating in the gut and then to the brain.

A concerning aspect is that children are being perceived as "cases" in the context of autism treatment, with limited involvement in the decision-making process, while parents strive to "cure" their autism. What are your views on this?

ASD with medical Co Morbidities are considered as patient or cases for the fact if associated medical issues are identifiable. I am very clear when I evaluate my patient right from the birth to the present and involve parents to understand the progress of TEST TREAT TEACH autism.

Cure for autism is only possible when we find the cause.

Thank you Dr. Shilpa Rao for taking time out of your hectic chedule to do this interview.

noreply@blogger.com (viji) — Tue, 27 Jun 2023 04:49:00 +0000

The former MTV India CEO, Ashiish Patil, is a writer, producer, director. He truly believes that stories have the power to change the world. Goldiboy and three apes is a remarkable endeavour in that pursuit, authored by Ashiish.

Risshan, Ashiish 's son shares his lived experiences on his YouTube channel Issepshal. A stand-up comedian, he breaks stereotypes about autism with his own brand of humor. It appears Risshan is following in the footsteps of his father. But Ashhish believes otherwise."Like son-like father: says the dad. He, a late-diagnosed autistic, provides a few glimpses into their lives as well.

Read on to know more about the enterprising father-son duo...

ASHIISH PATIL

The trailer of the book is heartwarming. It stands out that you have been able to present a serious topic in an entertaining manner.

I’m so glad you enjoyed the trailer. The book is even more fun! And I’ve always believed no one is interested in listening to a sermon/ bhaashan. But a story or song, that’s when you can bring people in. After which you can deliver more than just entertainment. That’s why stories have the power to change the world. Hopefully, this is one such story that can make the world a wee bit more inclusive.

I’ve always believed entertainment gives you the width, but adding that layer of meaning gives it the depth. And I’ve tried to do that across most, if not all, my projects.

Also, there is no pity, disbelief, shame, discrimination associated with disability. Is this something you wanted to convey through the book as well?

Absolutely. In the early phase, there is so much confusion for families and people who get diagnosed. It’s like a tsunami that hits you, ke bhai yeh kya ho rahaa hai?! And for the neurotypicals, at times the discrimination, fear comes out of just lack of awareness. Becoming aware is the first step to understanding, only then can acceptance happen.

We are at that stage where we are celebrating it. I mean, Risshan, our son, who is autistic has made me not just a better dad, but a better person.

Also, there is very little representation in mainstream media/ entertainment for people with disabilities. Whatever exists is godawful pity porn/ inspiration porn [the bechaari/ bechaara, or ‘wah wah’ narrative] or just downright insensitive, being played up for gags/ humor. I definitely wanted to help the community feel seen, heard. Like it’s ok to be different. And that they belong!

“Isspeshal”, embellishes the special, giving it a desi twist as well. What were you thinking when you came up with isspeshal?

Isspeshal is a take on special. Not special needs, because everyone’s need are special – but about how our differences make the world more special. I mean vanilla ice cream every day would get pretty boring–autism is that mix of chocolate sauce, sprinkles or that fun topping that adds diversity to life and makes it more, Isspeshal.

Isspeshal also is the name of the Creative flagship company that me and my wife, Shital run. So every project we do, be it a feature film, web series, music video, advertisement or, for that matter, a children’s book ALWAYS has a tie-in at the back-end to neurodiversity. Be it the catering for a shoot, a neurodivergent intern or assistant director in the crew or the goodie giveaway designed by someone from the community. Phir raat ko neend bhi better aati hai 😊

With over 100 illustrations, and an adaptation of one of the most popular fairy tales, it is a challenging project. How long did you work on it?

Oh yes, it took us over a year. It’s not like a traditional children’s book, which is typically 24 to 40 pages. This one is a gorgeous 120 odd pages with as many beautiful hand-drawn illustrations done by an art-teacher who works with kids. We wanted to make sure that every image looks really appealing and has more layers. For instance, the infinity sign, which is the international symbol of autism, has been incorporated seamlessly across the book. On Goldiboy’s t-shirt, as the clip in Baby Ape’s hair, as a butterfly… the choice of the book Papa is reading, the playlist on the iPad are all conscious. With Temple Grandin [our Autism legend], Billie Eilish [who has Tourette’s], the language used [‘brain has left the group’, ‘learning to be flexible’], the references to ‘gluten-free’ diets, weighted blankets are all conscious. We got the book also validated by a bunch of therapists, counsellors, special educators, autism moms, doctors to make sure we’ve got it right. It was quite a process, but seeing the final version, it all seems worth it!

This is a story about an autistic son written by an autistic dad, a book of its kind, most likely. A late diagnosed autistic yourself. Could you tell us about your late diagnosis?

Now, as the saying goes, ‘like father, like son’… in our case, it turned out to be ‘like son, like father’. Thanks to Risshan, as I started reading up about autism a lot more, attending therapy sessions, working with him and more, I started noticing so many similarities, commonalities. A bunch of things that I never understood as a child, that I ignored as a teen and probably masked as an adult. Seeing how Risshan leads such an authentic life, so fearlessly, I finally mustered up the courage to get a formal assessment myself. It was a gruelling 3 months of multiple in-depth interviews, with me, my family, detailed questionnaires, a lot of soul-searching which finally told me something I always suspected. And more than the label, it was just the clarity that I sought. It was like a cloud had lifted from my brain.

I guess Rissh and I have more in common than I thought. One more thing to bond over!

Storytelling stands as an incredibly potent medium through which to convey and express one's perspective. Stand-up comedy is another form of storytelling. How and when did Risshan start doing stand-up comedy?

Yeah, stories have to power to change the world. And humor is a tool to jump any and every human firewall. You can drop hajaar truth bombs when packaged with humor. Risshan is an inherently funny kid. Often unintentionally also. And besides being a great mimic, he loves performing! I mean, right when one of us is angry, he will imitate his mom/ me and crack us up. I have also always used humor as a tool to escape, cope, belong. So together, as baap-beta, we’re quite a killer combo. I write, he performs. We did a couple of fun sketches like…

Things ‘normal’ people say to people with autism…

https://youtu.be/2Q5-5kEqmIg

Every neurodivergent…

Dad: https://youtu.be/D8Ca3OJ2vi4

Mom: https://youtu.be/7Ku9Su0Ri5s

And they were a riot.

The birthday videos he does for people are usually laugh out loud too.

So, we started putting up these Chhota sets of stand-up, shot with just a couple of us…

https://youtu.be/qNLpQd8gfyQ

Some spoken word poetry and more.

https://youtu.be/ZXiDcmJJXG0

To expose him to more and more formats.

And also use different genres to really get the message on neurodiversity and inclusion out there.

As a family, what do you perceive to be your strengths?

Well, we are a nice tripod. Each leg is equally important. Even if one fell short, the stool would be wobbly. And each of us brings a different skill to the table. Of course, my poor wife, Shital has to deal with two corny neurodivergents at home with a really weird sense of humor. She brings reason, structure, sense to all we do. I bring the creative chops, the writing, the lateral thinking, the eye for detail on execution, the ideas. Risshan brings his big heart, his sense of humor, his purity. He keeps us honest. As a family, I guess, the ability to keep it real, to appreciate, celebrate the small things, and a passion to now really give back/ help the world become more inclusive are our biggest strengths.

RISSHAN PATIL

How do you feel about being the hero in your father’s book?

I love seeing my photo in the book; I love that Goldiboy looks like me and I love that there are so many things that I love in the book–from pizzas, iPads to Bikes, Bappi Lahiri, Beatles and Billie Eilish besides my Papa’s Bad Jokes! I think we should make a movie with me as hero now… then I can do my Dhoom dance!

I watched some of your videos and you were just superb. How do you put together a script?

Thank you so much. My Papa helps me. I keep cracking silly jokes. And saying funny things and Papa is usually watching this. His sense of humor, believe it or not, is worse than mine. So, he takes the things I say, do and turns them into sillier, funnier things. I just have to be myself. It’s so fun. I looooove making people laugh.

I also work with Papa, and we make up songs. Like my most favorite thing in the world is pizzas. And we toss around words about pizzas, then we find words that rhyme with that. And turn it into a rap song. Papa plays a groove and then we go, check this out…

I love Pizza rap

https://youtu.be/c_gs_UMGcP0

I prefer to get paid in pizzas when I perform.

What has been the most memorable moment for you?

I love performing; I love singing. Recently I got to become Pushpa in the school play, wear a beard and then say funny lines. I also got a pizza for doing a good job.

Also, of course, seeing me in my Papa’s book and Goldiboy, who looks like me.

[My Papa bribed me with a pizza to say this! 😉]

Risshan's answers have been paraphrased by Ashiish for better coherence.

Excited to see what the duo is up to next.The Goldiboy and the three apes; is a great introduction to autism for children and adults alike. Get your copy now!

noreply@blogger.com (viji) — Thu, 22 Jun 2023 05:02:00 +0000

Mr. Anand Kumar Keshavan, diagnosed at 57, is on the spectrum. As a person who has lived the majority of his life undiagnosed, and gone through innumerable hardships, thinking long term, he says, “Let’s not go down the path of neurotypical vs neurodivergent. We are all on a spectrum. It is not a racist thing”. It is interdependence that would serve the mutual interest of everyone.

By profession, he is a software developer. He is also an author and has a keen interest in music.

In a candid conversation with Mr. Anand Kumar Keshavan.

1. When were you diagnosed? And how long did it take for you and your family to come to terms with it?

I was diagnosed with Asperger’s syndrome at almost 57 years of age. My initial response was why was I not diagnosed much earlier. But obviously there was not much research in those days. But once I was diagnosed, and I came to terms with it, my life has improved a lot. Let me tell you … A day before I was diagnosed, I used to smoke 30 cigarettes a day. I used to smoke and drink. This is because I had severe social anxiety. I tried to quit smoking many times and failed. The day I was diagnosed, I stepped out of my therapist’s office and I have never touched a cigarette. It's been almost 5 years now. So, in some sense, a diagnosis has changed my life positively. The fact that now I know myself better now. Why I am getting anxious? Why I am getting depressed? Because I am on the spectrum. There are situations where I will be anxious. I will be prepared to deal with it. And, of course, in some cases, I just try to avoid as much as possible. But if I have to go for the occasion, I take an anti-anxiety pill and I am fine. I can handle the situation. To that extent, the diagnosis was a boon. And also let me tell you, I was diagnosed in February 2018. On March 23, I started jogging. I could do about 200 mts. I ran the Pune marathon on Dec 1st 2019. I have participated in 2 marathons and completed 10kms. I don’t run any longer, as I am getting old.

2. How did you think of going in for a diagnosis?

I had been reading about it for some time. The conditions mentioned and a lot of my problems were similar. Normally, people consider 2 feet around them to be a safe zone. For me, it is 5 or 6 ft. A stranger comes into that space, I panic. So, for me, mundane situations like lifts, aircraft are all difficult to handle. I used to feel very uncomfortable in any social situation, such as parties and weddings. My response would be to just get drunk somewhere and handle it.

I was going through a severe phase of depression and anxiety. I actually went for therapy for that in October 2018. They diagnosed me in February 2019. This is something my therapist recommended; I go in for a diagnosis and see what comes of it. From a lot of our conversations, she felt my being on the spectrum could be contributing to my depression and anxiety. Now, it makes sense.

3. When did your family come to know about it? And what was their response to your diagnosis?

Right away. It was difficult for them to accept the thought. I was this kind of weirdo with alcohol problems. Eventually, they read about it. And figured out, yes, the description fits with my life. Now, they have accepted it more or less. And if I say that, look, I don’t want to go somewhere, they will not force me. Earlier, they would say I am being anti -social. But now, they have accepted that’s something I don’t want to do.

4. As far as your professional life goes, how did that go?

I put it out almost immediately. Another thing that happened. Around that time, I was running an independent business as a software consultant. I enjoy writing code. That keeps me very happy. I went back to being a computer programmer. I started looking out for jobs. I did not want the hassle of running a business and dealing with all that goes on. I told my prospective employers that I am on the spectrum. I got a job with a company that has accepted me wholeheartedly. They gave me the space and took care of what I needed. A private office to work with. Remember my five feet safe space requirement? That was accommodation for me. I restarted my career; I started working again. I mean, this is like a second career to me.

5. Are there other initiatives taken by your organisation Postman to support ND individuals?

They are quite aware. And the HR team has a forum with a few people on the spectrum.

6. In your opinion what can companies do to improve support for neurodivergent individuals? What proactive measures can an individual take?

This is something I have been talking to a lot of companies, giving talks on the subject to HR people. The problems I have as a neurodivergent individual may be different from that of another. They may have a completely different accommodation requirement. As a proactive measure, it is imperative to state you are a neurodivergent. Most HR organisations will accommodate. After all, it is not very much. Some of us have problems with sound. So just having a noise cancelling headphones might solve the problem. Some have problems with smells, so don’t seat them near a washroom or cafeteria. Yet another model is to work from home.

I think it is an awareness that is more important here. Most people on the spectrum do not have physical problems. I do not have any physical issues. The movies have associated disability with physical impairments. And people end up carrying such impressions. The ability to understand invisible disabilities is lacking. Yes, some people have coordination issues, but again, it doesn’t mean they cannot work or communicating. For instance, I have problems reading between the lines. If somebody says something, and if they are not directly telling me, I have no idea what it means. This has caused so many misunderstandings with my wife for two years before we understood what was going on here. I was not listening. I need direct communication here. These are things I have discussed with my bosses and co-workers. So, this is not something very hard to accommodate.

Companies do far more to accommodate people with physical disabilities.

7. It must have quite a struggle for you, being diagnosed late and autism awareness lacking. Many situations in life, not knowing what to do or how to do it. But also, there might have been some strengths that helped you pull through.

Yes, my life had been very hard. There is no doubt about it. I have some special abilities. My IQ is over 150. My father took me for the test, didn’t know why he did that. I was good academically. Though I lost interest in studies. When I was around 16-17, I thought I became a musician. I play multiple instruments like the piano and the guitar. I excel at mathematics. That makes me excellent at computer programming. But that pretty much is how I have lived my life.

8. Talking of fathers, how do you think you have fared as a father? Parenting has its own share of challenges.

It was very difficult for my family to deal with me. And for my kids, my reactions would be baffling, innocent, but unexpected. Lot of things like that. But now I have a diagnosis, they know what is going on and they are ok with it.

9. Do you work with any NGOs to promote autism awareness?

Though I would like to associate myself with a good NGO. I do longer have much energy left over from a day's work to undertake these things. I am getting older as well. But I would love to do something if time and health permits.

What are the cultural and societal factors in India that we need to look into? Acceptance is lot more than awareness?

At large, nobody knows anything about it. In the small world, bubble that we are living in, people are aware of it. But if you talk to your vegetable vendor, he has no clue. When I was a kid, my label was weirdo. That’s because that’s the only label they could figure out. In our society, autism is still considered as mental disorder. Rather than a difference in the wiring and connectivity process of the brain. We are as normal as everybody. We are all on a spectrum, just that we are at one end. Even neurotypicals have their own sets of problems and anxieties. They are genetically tailored better to handle the difficult situations, while we have a meltdown. I used to have many before, but have not had one for a long time now. A lot of “normal” people could have meltdowns too. Let us not polarise and divide between neurotypical and neurodivergent. It is happening a lot in many groups. NTs do that, do this… It's not a racism kind of thing.

It is going to be a very long process to educate people and society. It starts from home and we need parents to play a big role, especially with children. They should not hide it. There is nothing to feel bad about. I didn’t feel bad at all, actually. It was such a liberating thing for me. I have not hidden it at all.

Thank you for sharing your life story. It’s been truly inspiring and humbling.

noreply@blogger.com (viji) — Thu, 22 Jun 2023 04:38:00 +0000

Thank you all for being gracious and agreeing to be a part of this series on neurodivergent entrepreneurship. I am deeply grateful to each of you.

Joel Godi: Joel strongly believes in the importance of self-advocacy and urges young people on the spectrum to go on an entrepreneurial journey as early as possible in order to reach their full potential.
https://lnkd.in/gxVbNW2e.
Nehal Tiwari: Nehal is pleased to have made her passion into a career, she speaks of the joy of entrepreneurship.
https://lnkd.in/gtJ-ZHnc
Qazil Fazil Azeem: Qazil discusses the need of an entrepreneurial mind set that sees failures as learning experiences and availability of resources to see it to fruition. His advice is to start small, validate ideas, seek advice and feedback and take calculated risks.
https://lnkd.in/gyfn8npP
Midhun Noble: To keep the entrepreneurial boat afloat, Midhun Noble believes in resilience and a strong support system. He encourages a creative thinking process to bring in originality to solve problems and overcome obstacles.
https://lnkd.in/gwUgHBMx
Aalap Deboor: Entrepreneurship has helped Aalap discover sides to his personality that he didn't know existed. According to him, entrepreneurship, like so many things, is a vast spectrum. Dynamic, it needs tremendous discipline and lots of compromise.
https://lnkd.in/gYzDUCg7
Carole Jean Whittington: To Carole, success is not a static list. When we can get compassionately curious, in communication, and in just connection, from one human to another. We're elevating our performance, we're elevating our business, we're elevating humanity. And we're also eliminating those barriers to access.
https://lnkd.in/gS9_m-6c

Varun Sawant: Varun has never thought of autism as an impediment, but as an advantage in channelising his strengths, enabling him to become an entrepreneur.
https://lnkd.in/gWgVJHXa
Emily Elsworth: Entrepreneurship has given her flexibility and ability to put in the accommodations that have helped her thrive and not struggle. Emily says having a mentor has helped her start out as an entreperenur.
https://lnkd.in/g3db6gFy

noreply@blogger.com (viji) — Mon, 12 Jun 2023 04:37:00 +0000

Concluding the series on Neurodivergent entrepreneurship

Emily Elsworth is an autism trainer and advocate. Diagnosed at the age of 27, Emily is a small time business owner. She is passionate about accessibility. To quote her,

We shouldn’t be having to justify our diagnosis all the time just to receive the right care and adjustments.

Unfortunately, the narrative she was taught in school and college did not align with her experiences as an individual with autism. Not be weighed down by this, she founded Emily: Autism and Me.

Here is Emily Elsworth in an written interview.

1. As an ND entrepreneur, in the last two years, how have your experiences differed from being an employee? How important is it to have a mentor?

One of the main differences for me as entrepreneur, is that I have far more flexibility in terms of the hours I work, how I work and who I work for. This has meant that I have been able to find working patterns that work for me and been able to put the right adjustments in place in order for me to thrive at work rather than struggle. It has also meant that the number of responsibilities I have has increased which has meant that I have needed to find different ways of working and getting support in order to make sure that all the jobs I need to do are completed.

Having a mentor has been invaluable for me starting out as a ND entrepreneur. This has meant that I have had someone to talk through my ideas and concerns with as well as someone to support with areas of running a business that I haven’t known how to approach. It has also been really helpful to have someone to reflect on progress with. It can be easy when things get stressful to forget the positives, but having a mentor to reflect with has helped.

2. Capability and capacity are at variance, more often than not. And, one of the reasons for underperformance. How can one work on bolstering the capacity requirements in a workplace?

Capacity requirements are not often based on neurodivergent people and as such we are being put into environments that looks like we are underperforming. In order to bolster capacity requirements, there needs to be a greater understand of how a neurodivergent persons capacity can vary from day to day and hour to hour. The right adjustments need to be put in place to support all employees so that achieving capacity requirements is more realistic rather than setting unachievable requirements that will lead to the perception of underachievement.

3. NDs are pigeon holed into jobs perceived as a perfect fit. Is there a better approach in resolving this conflict of interests? How do we build productive relationships?

I often feel uncomfortable when I see jobs aimed specifically at neurodivergent people as the roles chosen usually play into every stereotype. A better way to approach this would be to see the skills that neurodivergent people can bring to any organisation and see us as individuals with individual skill sets rather than people with a very limited and stereotypical set of skills. Having a stronger focus on the accessibility of the role and the adjustments that can be made can help to resolve this conflict of interests.

By raising more awareness of neurodiversity this can build productive relationships where companies can see that they don’t have to pigeon hole us into specific roles but instead create environments where we can thrive in any role.

4. Accelerating neuro inclusion in schools is something you have undertaken. What are some ways to do it?

There are many ways to accelerate neuro inclusion in schools. This can be done through teaching children from a young age about neurodiversity in terms of difference so that children see that different people need different tools to help them in life. Starting these conversations at an early age means that they grow up being more accepting of differences. Creating safe environments for conversations around neurodiversity throughout the school year, not just during Neurodiversity Celebration Week, Autism Acceptance Week etc, is also vital to accelerating neuro inclusion.

5.This is something we face when organisations come to hire because they have an DEI initiative. They ask for low maintenance workers. Or after hiring they find it difficult to accept the ND quirks, and patience runs thin. The top management has a vision but does not necessarily permeate to the lower rungs of the organisations. A call is taken after a brief time to terminate the service of the employee. How would you, as an autism advocate and trainer, put forth your views to an organisation that is not firm in its resolve? How would you put up a strong case for employing NDs?

As, an autism advocate and trainer, it is vital for me to work with employers to understand the full picture of what it means to be neurodivergent. This would mean that they would need to embrace everything that being neurodivergent means, whether that it is positive or not. Highlighting that being neurodivergent isn’t a deficit is really important in changing the narrative within employment for us.

I would approach this work from the angle that in order to make workplaces neuro-inclusive is not a difficult, time consuming or expensive thing to do. It is actually more time consuming and expensive to not be neuro-inclusive because you will need to spend more time and money on recruiting over and over again rather than retaining staff. The changes that will make an organisation better for neurodivergent people are really simple to do and the benefits if they are in place are huge for employers.

6. "Health inequalities is one of the biggest barriers I have faced outside of running my business". I read this in one of your posts. Can you please expand on this.

As an autistic person I am often misunderstood by medical professionals. This means that I, and many other neurodivergent people, face health care that isn’t equal.

This means that every appointment I have, whether this is the dentist, doctors or hospital, involves a battle to be understood. I have to explain my needs every time because my adjustments are very rarely put in place or I am told that they are too difficult to be used. This means that I am unable to access most of the appointments I need to attend.

I am also often not believed by medical professionals, which has led to long delays in getting a diagnosis for both my autism and fibromyalgia. It shouldn’t be that we have to wait longer the others for a diagnosis just because our experiences are not understood by others.

noreply@blogger.com (viji) — Mon, 01 May 2023 01:17:00 +0000

Varun. R. Sawant is a graduate, marathon runner, baker, and singer. With a smiling countenance, hardworking and polite, Varun is keen on expanding his business and is proud of his earnings. He is also the first Asian with autism to have run a full marathon. As a young adult, he loves to hangout with his friends. He accepts outstation orders sometimes. In response to a question about if he has ever felt autism has been an impediment in his life, he gave an emphatic no.

In an interview with Varun Sawant.

1. How did Chef Amol Rawool help you realise your dream of becoming a chef?

It was nice for giving me instruction, observation, concentration and focus.

2. Which college did you graduate from?

Patkar college Goregaon west.

3. What did you graduate in?

I graduated in cooking with my friend Thrishta.

4. What are you doing now?

I am running bake and flake from home.

5. How did you come up with this interesting name? Is it because it is rhyming?

Yes

6. What items do you take orders for?

We make healthy cookies that does not use refine flour and sugar. We make sugar free cookies.

7. How often do you bake? Do you have a schedule?

I bake when I get orders.

8. Do you cook for guests who come home?

Yes, I bake cookies for them. We have guests coming today.

9. What do you do with your earnings?

I have earned Rs.26, 000. We need to spend the money.

10 What do you spend it on?

Booking stall space, buying gifts.

11 You are the first marathon runner in Asia with autism to run a full marathon? Tell us about your training.

I train at Mind Space. I enjoy running with Ajit sir and Kaushik sir. I practise on Tuesdays, Thursdays, and Saturdays. I do 3kms on these days in the mornings.

12 How do you unwind?

I go out with Trishta and my college friends. I go to the malls with my friends.

13 Tell us about your experiences setting up a stall?

I sell cookies and cakes. Then I take payment by Gpay. I handle money also.

14 What has been your biggest sale?

Bal Gangadhar hall, Bandra West on April 8^th.

15 You recently met Sanjeev Kapoor? What did you give him from your stall?

Sugar and refined flour free cookies.

16 Did you get to talk to him?

No, I could not. I was busy in the stall.

17 Who helps you put up the stall?

My mother helps me.

18What message do you want to give your readers?

I am a passionate runner and baker.

Do you think autism has been an impediment in your life?

Never.

Thank you Varun for doing this interview.

He is on Instagram:

https://www.instagram.com/dreamrecipe_varun/?igshid=YmMyMTA2M2Y%3D

He is on Facebook

https://www.facebook.com/varun.sawant.925602?mibextid=LQQJ4d

noreply@blogger.com (viji) — Fri, 28 Apr 2023 04:38:00 +0000

Honored as one of the top 50 Global Neurodiversity Evangelists by Neurodiversity world. An AuDHD solopreneur and founder of Mind Your Autistic Brain, Carole Jean Whittington is an Accessibility & Neurodiversity Consultant. A Burnout Restoration Strategist, ND Leadership Developer and host of the weekly Mind Your Autistic Brain Talk Show on Podcast and YouTube.

A subject matter expert, and a straight shooter; Carole Jean, in this interview, has given us an exhaustive account of how neurodistinct leadership can shine through, beginning with simple one- on -one conversations. She asserts, it is imperative for the leadership to be well aware of their own preferences. Accommodations are more about meeting a need or preference. She speaks about how regenerating after work is just as important as the work itself. Transitioning with ease, between discussing business and philosophy; keeping a pragmatic perspective in mind, she adds “When I start to look at what I value and see if those values are in alignment with my metrics for success that I have in my life, that's when things start to change.”

In an interview with the charming and eloquent Carole Jean Whittington:

You recently did the 2nd accessibility Shine a Light Campaign, 2023. How do you think entrepreneurship can be made more accessible?

Such a huge part of the conversation within our neurodistinct population is accessibility, how do I access services, what is the ease of use. It could not be more prominent in the barriers that we face when it comes to entrepreneurship and accessibility. However, we are also in one of the greatest times in humanity right now, when it comes to technology, because the barrier to entry and entrepreneurship right now is almost $0. It's almost $0, there are apps out there, if it's ConvertKit, if it's Canva, if it's PicMonkey, you know, if it is MailChimp, everything has a basic plan, a free plan for you to utilize the services and get started. Calendly has a free plan for scheduling if you're setting appointments and things like that. Zoom has a free account. Each service has different limits and things like that, but the barrier to entry and entrepreneurship is at its most accessible right now than it ever has been.

However, on the other side of that, it's great, it's more accessible, I can set things up, but speaking from the United States side of things, because that's where I live, I believe the structure of government regulations and federal oversight on what it means for you to own a business is not yet accessible. That is a huge barrier. Taxes, licensing all of the things for you to be compliant and being able to do things to be able to operate your business. There are challenges, there are barriers there, those are things that are not yet easily accessible. As a neurodistinct entrepreneur, I will say that they are not easy. And it is because you usually need help to navigate because you want to make sure that you're doing all of the things correctly and that you've got the right insurance coverage, and all of this stuff. It all costs money, that is a challenge, especially when over 85% of our ND population is unemployed or underemployed.

There are two ways that this can be made more accessible, to create regulations and systems to entry that are not creating challenges and barriers. As a solopreneur, I spent last night filing tax returns. I have dyscalculia also. That is not an easy feat. This is a lot and my brain is not processing all of this, like I have really struggled to do this. I usually hire an accountant but decided to give it a go on my own this time. And I dug in and at 11:54pm flying just under the radar, I filed it. But there were so many things throughout that entire process that were so inaccessible to me. And this has been a really hard part for me as part of my personal journey is I have invisible disabilities. It's not just physical disabilities that I have. I have invisible neurological disabilities, there are challenges. And you know what, it's not that I am broken or defective or not functioning. Our brain and body processes things differently, as it does for others in a very narrow scope of the population. And, there are so many things that are accessible to us now just across the board as entrepreneurs, but then there's also still really big accessibility barriers and challenges to entrepreneurship.

What could be the best practices for accommodating needs for neurodivergent leaders as in case of accommodations like written communication?

I love this question. At Mind Your Autistic Brain, our NeuroDrive Workforce Team, has what's called the FACTS lBueprint. And that's our executive coaching for neurodivergent leaders. Because we help executives, we help leaders within companies who are neurodistinct to navigate the business world in a whole new way. And for a lot of the discussions that we have, we work with vice presidents, we work with the Board of Directors. We have had some really phenomenal clients that we have worked with this past year. And when we're talking about what is it to be a neuro distinct leader? What does that look like in my work environment?

Number one, one of the biggest conversations to have is that we have neurodistinct humans, right from the lower echelons, to the boardroom, at every level, in every position. However, most of the focus when we talk about neuro diversity in business is at that entry level position. And that seems to be where the conversation stops. And one of the things that our NeuroDrive team focuses on is helping leaders and middle managers. Leaders, how are you navigating? Because you've made it this far, right? You have accomplished these things. Most of them are still functioning and are having burnouts, but still delivering. They are pushing through. And they're in a chronic cycle burnout loop, and they just function through burnout. They white knuckled through it in so many cases, and we're talking about creating accommodations.

I think number one is that within the work world; we have to recognize that neurodistinct employees and leaders are already there, you don't have to recruit us and bring us in. Organizations need to start having conversations that create psychological safety within their culture, so that people feel more comfortable disclosing that they are neurodistinct. A majority of the leaders that I work with, have still not felt comfortable enough to disclose because of the environment they're in. What we talk about, from the accommodation’s standpoint, from a leadership standpoint, is you really have to know your own needs, you have to be able to identify what those are. And for a lot of us, especially late identified folks, like myself, I was almost 40. When you're a late identified, from youth, you've done a lot of things that have gotten you to where you are, and you've probably figured some stuff out on your own, but you don't realize why you figured it out. But then there are also things that you've consistently struggled with, that you didn't realize were just part of your neuro type experience. So, when you can dig in and start to look at, okay, what are my peak performance hours? When is the time that my brain is most creative, and it's functioning, it's in that window, that zone of genius, right, that period of maximum operation?

When you know what that is, when you know what your communication style is, and this is one of the things that we talk about in the executive coaching program is helping you identify what are your peak performance hours? What are your communication styles? Because those are two different things. How you like to receive information and how you deliver information can be two totally different things. And it's how do I work with my team and communicate with my team? So when we're looking at doing some team work, you have to identify, Hey, what are my teammates' peak performance hours, who are the people that report to me, my direct reports, what are their peak performance hours? You know, AAC is great if you need that. Fantastic, you know, also, I use Zoom with closed captions, because especially late in the day I have an auditory processing delay, my ears are tired, my brain is tired. I don't hear and process auditory information as well. So, for me, that's an accommodation. If you meet with me after 12 o'clock, I have to have closed captions. Please don't call me on the phone because I don't have a way to lip read either.

There are certain things that are self-accommodations, but those are also accommodations that we can start making for everyone and when we start to normalize what an accommodation is, usually it's not something that's costly. It's not something that's preventive in performance, actually, it increases performance. And we can start to talk about these things. As you know, my teammate Jessica Michael says, we want to talk about our preferences. This isn't like, you're not going out of your way to, quote unquote, “accommodate me or give me acceptable, accommodations; you're meeting a preference and a need, and I'm meeting your preference and a need, we all have preferences and needs that are based on what helps us best.”

We can start having conversations that revolve around accomodations. Well, foremost, we don't look at it as something separate, we just look at it as how are we best performing? What are our needs? And how are they getting met? And how are we communicating one person to another, and not being a jerk about it? Because, you know, so often, I hear in the workplace, it's like, “oh, well, we don't want to break any laws. And we don't want to make any mistakes. We're just going to be so super careful, that we're just going to take forever, and we're going to give you everything that we feel like is comfortable. We are worried about getting sued over it.”

The reality is that by the time a person has requested an accommodation, they've already suffered and struggled for a long time, they're in desperate need, by the time they have worked up the courage to ask HR for an accommodation.

We have been discussing how to heed the preferences of ND leaders. At the same time it is imperative for an ND leader to be cognizant of the requirements of his employees? What could they do to make the employees feel comfortable?

We either choose to be comfortable or not in a lot of senses. What's comfortable for us, may not be comfortable for someone else? My approach to this question would simply be number one, leading by example. So if you're leading by example, Hey, this is my performance time, these are my communication styles, I'm not a Slack person. Some folks are slack people Oh! I love slack, let's have a conversation and communicate about this project on Slack. Or, you know, let's use these other softwares.

But what works best for you, as a leader, when you start asking your team members, ‘Hey, what is the best time of day for you? When is a good time for me to talk to you? And what avenue of communication is best for you? Is the email, you know, a bullet point in an email, not a novella, you know, 10 page email, do you just need the highlights? Do you need me to send you something in writing, and then you can contact me? We'll have a conversation around it, maybe face to face or on zoom with closed captions.” But what it means as the leader to make anyone comfortable is, well, first of all, you have to figure out what works for you.

And the second, you have to start asking questions, you have to start listening. What works for the people in my organisation? And by asking these questions you're learning about yourself as a leader. You're also modelling that this is part of our company culture, this is part of how we work as a team, this is how we communicate with each other. And how does that look? What does that look like for us to show up and shine in our zone of genius? Right, because that's really what we're looking for in businesses. We're looking for performance, we're looking for meeting those goals that we're trying to achieve. We're looking for a value alignment within the individuals and within the company and how the company shows up in the world. All of that starts with having a conversation, one person to another, what works for you.

Communication is the key. For each person, communication appears different. And it's said in a different way. It's also absorbed differently. There are 4 levels of communication, level one is the thought or idea you wish to express, level 2 is what I say may not be what I planned to express. Because sometimes those two things are different, level 3 happens on the other side, the way someone interprets what you just said or wrote depends on the lenses and filters through which they are taking it in, how they are processing it, and level 4 is the story they are telling themselves about what they filtered through their lens.

Communication is more than simply that and most importantly it's that we have compassionate curiosity in our communication, and that we aren't immediately assigning a judgement or a story to why someone did or said something. But we simply go, like my friend, Tracy Borreson says so often, “I wonder… “I wonder why did they just said that? Why did they just do that? Let me ask them. And when we can get compassionately curious, in communication, and in just connection, one human to another. We're elevating our performance, we're elevating our business, we're elevating humanity. And we're also eliminating those barriers to access.

What strategies can be employed by ND entrepreneurs to manage their time resources and networks?

This has been one I have definitely been working on for the last 40 years for as long as I can remember, right from school and throughout my career in business. What I have found, and honestly, right now, with the number of apps and technology that is out there, it's almost like information overload. There are so many options. But I found that I just had to experiment. Automation is my best friend. And I really struggled in the beginning because I thought, “Am I gonna lose the personal touch and connection that I want to have with my clients if I use things that are automated or pre done.” Are there some things I do frequently? Maybe there is an energy drain? I'm a burnout restoration strategist so I do take a closer look at all things related to maximizing performance and creating sustainable restoration and thrive. Are you being fueled and energized? And then where are you being depleted? Where's your energy going out? Because we have to look at both of those things. And it's not about balance, because balance is part of the biggest drains. When you look at burnout, one of the biggest contributing factors to an energy drain is the amount of thought energy you expend. You know, our brain consumes over 30% of the energy calories that we have every day. Now, that's the statistic for the normal brain. Bless you folks with those slow brains that only have 70 to 90,000 thoughts a day. Those of us who are autistic and ADHD like myself, we can just double or triple that. We probably have like 180,000 thoughts a day, and that's probably just on an average day. That's exhausting. When we look at these numbers, what are some things that we can do? How do we manage our time? Look at the repetitive tasks I'm performing; I can automate them. Where are the tasks I can contract out? That's not talking about just your business outsourcing. This is talking about your life outsourcing. I order those wonderful pre-made meals, and I have them delivered to my house. As every bit of my energy is having to plan a meal for the entire week, make a grocery list, go to the grocery store, buy the groceries, bring them home, put them up, then you have to prep it and cook it. That is exhausting for me. And I recognize that that was one of the things that was using most of my time. It was consuming most of my energy, and I was more exhausted at the end of the days that I had to go to the grocery store than anything else. One of the things that I absolutely hate and absolutely dread. I thought, well, how do I eliminate this? Well, I can order it on Instacart. I put it in my grocery list using my MealLime app. I can pick out menus, and it automatically generates a grocery list. And I can send that grocery list, copy it, paste it and send it to Instacart. And then I just drive up and they put it in my car. How can we use technology to decrease those executive function drains? You know, this is honestly not just in your business, but your life. If networking is part of business, the important question is who are you networking with? Are these the people that energize you, that light you up? I've got tons of people; I just love them. I love people, I'm a people person. But I have a bandwidth of energy available for that social engagement. And afterward, I'm still tired, even if I like to socialize with them. It's also looking at this as going back to those needs again. Number one, If I do a networking event, and it's something I want to do, is it with people I enjoy, is it in alignment with the business that I am in, and these are the people that I know, I want to connect with. Number two, are you scheduling time before and after that event for you to regenerate? And what does that regeneration look like? Is it that you go for a walk? Is it that you do yoga? Is it that you simply zone out mentally while watching anything uninteresting on TV?

You know, what does that regeneration time look like for you? And how much time do you need? It may be different every time but you'll get a feel for what that is when you can start to be the leader and the creator of your schedule, and not say yes to everything. “How often do you say no?” I asked this a lot of my clients. And the answer is usually not very often. Those of us who have had late identification, become people pleasers for survival. And a lot of times it's also a trauma response. Things have happened and I've been hurt. I don't feel safe. That's another big thing, not feeling safe in the world. And so we don't say no, because if I say no, others might reject me. And that doesn't feel safe. One of the things that is really important to come back to is how often do you say no? And it's okay to say no. And one of my mentors asked me one time, and this made the biggest difference. And maybe this is something that will help someone if nothing else in this conversation today touches you.“How can someone respect your yes; If they never hear you say no?

What does success personally mean to you? Or do you consider yourself a successful entrepreneur? And what metrics can be used to measure the impact of ND leadership?

You know, that's the question that I have asked myself a lot. And that's one of the questions we talk about in The Unveiling Method. Because we have all these metrics. Being human means that we all have these measurements that we have accumulated throughout the course of our lives. We've all been indoctrinated through our parents, our families and our social networks throughout our life. And the things that we've learned have all been to keep us safe. Oh, you need to do this, you need to go to school, you need to get this degree, you need to do this, in order to be safe. Because our brain does two things. First and foremost, it operates to keep us safe. Our brain is seeking to keep us safe at all times. And the second thing our brain does is it says, I'm going to conserve energy. And I'm going to automate everything that you've repeated, so that we can then do other things. Safety and automation. And when we look at that, how often are we operating from a place of fear? Because we want to stay safe. So we don't say no to anything, we say yes to everything. We also have a long list of what success means to different people. Success, it's not a static list. Success is fluid. Some days success might be that you got out of the bed and got dressed in that season of your life; that could be success that day. Success another day in a different season of your life could be I gave a presentation, and I did a workshop for 150 people. And all of the people in the room had some sort of a breakthrough, something that served and helped them; elevated their heart that day. That could be a success on that day.

Absolutely, I am successful! It has been in my burnout restoration journey, I am now entering year four of being shut down, burnout and meltdown free for the first time in 40 years. My first burnout was at the age of six. And I continued to have chronic burnout from the time I was six years old until around four years ago. In that I had to start defining what is success for me. And also understanding that success isn't the same metric every day. You might sort of have the overarching idea that, for me, success looks like this. But then also knowing that within each day, where you are, how you're feeling? Where's your energy? Where's your attention? Are your needs getting met that day? Have you had some water? Did you stretch your legs? Have you had a hug? Or have you done something that's connected you to yourself and something connected you to another person?

This is how I look at success. Have I connected with myself today? Have I taken a moment to just take a breath in, love compassionately and love myself in a moment today. And the other part of my definition of success on a daily basis is that, have I connected with another human today? On this day, if that has happened, my day has been an overarching wonderful success. You know, as a business owner, we look at numbers and metrics, right? But do we? Can we measure that? Can we measure the impact of our heart, our joy, our peace, our freedom? And when I start to look at what I value and see if my values are in alignment with the metrics of success that I have in my life? That's when things start to change.

That was beautiful!

Thank you, Carole Jean; for this wonderful interview.

noreply@blogger.com (viji) — Wed, 26 Apr 2023 09:06:00 +0000

Much much spectrum is a community of neurodivergent and disabled individuals advocating to make the world empathetic and inclusive. An inclusive storytelling studio founded in 2020, specialising in factuals, advertisements, and short films. Aalap Deboor, is the cofounder of Much much spectrum along with his wife and co-worker Aditi Gangrade.

Aalap’s passion and commitment to the cause shines through in this interview. He has also reflected on their family relationships. On how late diagnoses in the family has allowed them to feel at ease in their own space and as a family. His discerning insights make for great reading. Aditi was unable to attend the interview owing to a work-related emergency.

In conversion with Aalap Deboor, a conversation that would definitely strike a chord with many of us.

How did you both meet? And how is it working together as colleagues?

As a team, we met just before the lockdown in 2020. So, it was on a shoot where Aditi was the producer and I was the director. Instagram, India had commissioned us for a social campaign. And we travelled to about 20 colleges across the country, interviewing students about mental health, gender, sexuality, etc, etc. That's when both of us really connected and we discovered sort of our shared love for filmmaking. Both of us were not comfortable with small talk, so our conversations sort of mainly revolved around film ideas and shooting techniques. How to go about doing interviews, the different ways in which we can make nonfiction films more creative, etc. And that actually worked out much better for the both of us than going on conventional dates, of which I think, even now, we've only been on a couple so far, because most of our dates are pretty much just sitting and discussing film and that kind of stuff.
One evening, we were in Chennai, and we had just wrapped up a schedule. It was like a nice, beautiful evening, and we were shooting by a small lake. I walked up to her and said, Listen, I think I think I like you. And she said, yeah! And that was it. It was literally the beginning of our relationship. Quietly, we walked back to our van. And that's how it started for us. It's been three years since. And we are now co-workers. She's co-founder of much much media.
People discuss personal and professional lives separately, and how there must be a balance between the two. Yes, for us, there's a balance. We strive really hard to keep that balance, but there's no distinct boundary, so to speak, between work life and personal life. Because as entrepreneurs in this day and age, especially while overseeing a 25,000-strong community, we're pretty much always plugged in. We understand each other really well, right from one another's creative sensibilities, to our work ethos, and also more personal stuff, like sound or visual triggers, that might induce a shutdown. We're able to understand what the other person's going through. And we're able to hold space for them in a way that works out. So, it's an environment where we are constantly looking out for each other. And there's an inherent trust that our business and our relationships will always be front and centre in every decision we make.

Why entrepreneurship and what are the joys of an entrepreneur?

Entrepreneurship, you know, like so many things, is a vast spectrum. Also, you know, that means different things to different people. For some, it's running a unicorn with VC money, working hard to sort of show profits someday. And for some others, it's bootstrapping a venture to give birth to an idea that is close to their heart, but one that is also prioritizing its profits. For us, the challenges are varied. The lived experience of an entrepreneur is dynamic. Much like living with neuro divergence. How it came about for us is because of many factors. The good things are that it offers a great amount of flexibility. It offers us creative leeway to pursue our special interests, our ideas. It also provides a great deal of independence and the ability to do things our own way. It makes us great at financial planning. And it also kind of emphasizes the importance of living in a way that is minimal, which we both strive for. So those are the good aspects of it. On the flip side, there's also a lot of uncertainty. It needs tremendous discipline; it needs lots of compromise. Also, knowing what you choose to do with your free time, if you have any left. I guess that is how entrepreneurship has panned out for us at least.

I understand that your father was diagnosed late, and Aditi is now part of your family. How have things turned out for you in terms of family dynamics, extended family, and friends?

Late diagnosis, is this something that, for the longest time, we didn't even know sort of existed in this space? We have always looked at autism as a condition that's discovered early on, and you know, interventions happen. It's been viewed from a very narrow sort of lens. So obviously, when the prospect of a late diagnosis came upon us, in the beginning, it was a little intimidating. It's difficult to accept something you've never heard of before. But I think how, as a family, we have approached our collective diagnosis has been very empowering for all of us. It has taken us a lot of time. It has taken us about two years to assimilate all of this. This is typically how it works in the late diagnosis spaces. Self-diagnosis happens first, through all the reading and research, all the conversations one does before an official diagnosis takes place. That’s how it was for all of us.
We have read up a lot on being a neurodiverse. Actively talking about your experiences, reading up and keeping yourself updated on other people's experiences. And that has been an integral part of accepting ourselves. To a large extent, it is also about unmasking, reducing the self-stigma that exists in a lot of people. We have put neuro divergence front and centre of our personalities, and we are continuously reminding each other and ourselves that we have specific requirements that were not apparent previously, but that have now to be priority in our daily lives.
Just holding space for each other has also helped a lot. We are happy to give each other that space. My father really loves to work out. And he is 66. He goes to the gym, religiously. He has got injured in the past. When lifting heavy weights, you are more likely to sustain an injury. Earlier, we would advise, don't go to the gym, just chill, sit at home. But those two hours of exercising every day, we realized later on, are his ways to self- regulate. And, of course, it's important to tell him to take it slow, take it easy. But we don't tell him not to go to the gym at all anymore, because we realize that is his way to self-regulate. So there are these different ways in which all of us sort of hold space for each other.
When it comes to friends and extended family, I think everyone has been phenomenal because we also made it a point to educate them, in our own small ways, simultaneously. As we discover our stories, and also the stories of the people who are involved in this dialogue alongside us. As a big self-advocate community, we're engaged with lovely people from all around the world. Actually, a lot of them are from India. We are a 25,000 strong community. I think we're running one of the biggest pages globally on neuro divergence and mental health and disability. People come forward and share their lived experiences with us, which we translate in a manner that is accessible for our audience, who are primarily, India-US- UK based. Every time someone comes to us and says, this is what I don't understand, this is what my doubts are, we direct them to our page. We tell them, "Listen, whatever you want to know, our page has detailed information on everything.”
So, alongside discovering ourselves, we're also telling stories of other people. Showing how many of us go through these experiences, but never talk about them because we feel like we're the only ones going through those experiences. Just showcasing the sheer number of people that have experiences similar to ours makes it something that is not alien and makes it easy to talk about. And that really helps in making other people aware and making other people accept you for who you are.

You're challenging neuro normativity through your films. Can you elaborate on that?

There's actually a great quote by a very renowned filmmaker called Orson Welles. And the quote is, that a film is never excellent, unless the camera is an eye in the head of a poet. I love that quote. It's something that's stuck with me ever since I read it. I learned about Orson Welles back in my journalism days. A poet talks about the world, in a way that is funny or tragic or ironic. Basically, they bring a poignant sort of emotion to their craft. Something that stays with you. It is the aperture through which we look at our work as well. Our work should touch and connect with something deep inside you. So, it's not so much our work challenging status quo, as it is holding up a mirror to people, saying this is the way that a person feels, or this person has gone through something, a certain kind of experience, it is because we as a people, as a society have facilitated it in some manner or the other. If we have set up arbitrary standards, or templates for how we believe things and people need to be, then that's caused grief to a lot of people who have found themselves not fitting into those norms, whether it be neuro normativity, or hetero normativity, or anything similar of that kind. Our commitment through our work remains to showcase the full length and breadth of, I would say, the human lived experience, transcending everything that divides us, or templatized, us as us and to basically showcase how rich our experiences can be if we look beyond categories and labels. In fact, the first, this Instagram project about which I was telling you, that documentary was called unlabeled. It was basically an attempt to make society look beyond the standard labels for different things, and essentially accept people for who they really are.

Do you think generosity is actually an inherent trait of neurodivergent entrepreneurship? And where does it come from? Is it because you are actually more empathetic?

Like an inherent personality trait? I would say that I do. You know, broadly, I see nowadays that the system has begun to perpetuate a false belief that kindness, generosity and empathy in general are a signal of weakness. In my career, I have seen young people get mesmerised by seniors who were plain ruthless, making a show out of putting other people down at their workplace. I've seen that happen. And I've never honestly understood that. On the other hand, you know, it can be tricky. When it comes to doing business, I believe it should be a win -win for everyone involved. Sometimes we might tend to become a little bit too generous, because, yes, we are empathetic. And we truly believe in what we do. I believe it's important for neurodivergent entrepreneurs to realize that it is not necessary to always be generous, and yet business can be done with kindness and empathy. You don't always need to go out of your way. But you can still bring a touch of kindness and a touch of empathy to your craft to your art, whatever you're trying to do.

Any "Aha" moments. You have the lived experience. You know this space very well but some things still take you by surprise? A moment of revelation...

There's a saying, which I really love, which I honestly and sincerely believe in. The more you know, the more you realize how little you actually know. It definitely has been a very humbling experience to explore this space over the past year and a half, We read books on it, we've watched interviews, we've done tons and tons of research spoken to so many people, and yet, every time you meet someone, you will literally start off from ground zero, it's literally like that because nowhere does the same hold more true than in this space, the space that we're currently exploring. We have aha moments literally every day. And I guess that's also one reason we are so excited about exploring this space about doing what we do.
Documenting lived experiences is something that we absolutely love doing. It's also our bread and butter. It excites us no end, because with every new meeting, or interview, we take away something that we had previously had no idea about. Intersectionality is so essential to this entire conversation, this entire dialogue. People with varied intersectionalities come with very different experiences, have similar conditions, or have similar backgrounds.
Listening to them, seeing what they've gone through, assimilating it into a film and putting it out there, every time we even translate something from a conversation into a film, there's an aha moment on the edit Table saying, “Oh, my God, you know, this is something that we had never thought about when we were filming this”. Knowing everything I believe about neurodiversity is impossible. I don't believe anyone can achieve that because our experiences are so dynamic and so diverse. But using all of these experiences, using all of this as a means to facilitate inclusion and acceptance, is something that we are constantly working towards. The end goal is that, essentially, neurodiversity and these conversations are a means to get into a place where we can genuinely be more accepting, more tolerant, more inviting, more celebratory, in a sense.

How has your neurodiversity played a role in decision making and your risk-taking abilities?

For a long time, I was extremely risk averse. As an autistic individual, certainty is really one thing that grounds me, I love routine, I love predictability. Yes, I have to prepare for things beforehand. If I know I'm going to be doing something on Friday, I need to know about it by Monday. And I need those three days to sort of get in that space where I know that, okay, on Friday, I'm going to be doing this. So I need to expect this, and those things are essential to how I'm wired, and I'm very okay with those things now. But every once in a while, you know, it's also good to challenge your notions of what you think you know about yourself, because that is how growth happens. It needs to be done in a very structured, in a mindful kind of way, not arbitrarily, of course, because you know, that might not end up doing you much good. But beyond the point, it is my neuro divergence that tells me that risks will bring me anxiety, but it is the same neuro divergence that also tells me figuring out ways to work through this anxiety. Rather than avoiding situations altogether, it will help me discover sides to myself that I didn't even know existed. And this has happened, you know, as neurodivergent, a lot of us also tend to bottle up our instincts a lot because of self-stigma. So now, both Aditi and I make it a point to sort of let our, gut feeling or intuition sort of drive our decisions, which is also a manner of unmasking for us, trusting ourselves to know what's best for us, and what is best for the business that we want to run. I would just conclude by saying that it feels good to be taking up that space.

Thank you Aalap, for doing this interview.

noreply@blogger.com (viji) — Fri, 21 Apr 2023 05:04:00 +0000

Midhun Noble is a social entrepreneur. A neurodivergent, he is the Co Founder @ Insighte, and Allinclusive Foundation. He is presently EIR @circle India, and is presently building SPOT an inclusive after school. . He was also an Incubatee at MIT SEAG, Empact, NSRECL, He dreams of building an incubation program for ND kids, which helps them pursue their passion and lead a happy, productive life.

In this interview, he speaks of his love for entrepreneurship from childhood, and the support systems that anchor him. He also gives us glimpses into his creative process. To keep the entrepreneurial boat afloat, he believes, it is crucial to have resilience and a strong support system. Midhun strongly emphasizes the significance of these factors in the conclusion.

Why entrepreneurship?

I think the first time the idea of entrepreneurship hit me was when I was in school. We had bought rabbits as pets. So my first thought was like two rabbits will give six kits, they will multiply. So how do you sell all the rabbits to make more money? How do you either grow it or sell it? Or how do you make the most money out of it? My first job was in a bank for six years. Most of the people did the routine work and were happy with it. Trying to finish work on time and leave. But I would continuously go to my GM and ask, "Why are you doing this?" I had a different set of ideas on how we should be operating, digitalising. I see a problem, and I just try to work around solutions for it. Entrepreneurship gives you the freedom to do it.

You don't need to answer to somebody else. I want to do it. I am willing to take ownership. But you give an idea, and then someone shuts it down n times, but in entrepreneurship, you have the freedom to just go and execute it.And probably that freedom is what I seek and like. I want to do things that I enjoy. I'm not good at certain things. So probably, like, being stuck in a place where I don't want to be, where I'm forced to do those things. Instead, just do the things that I like. I just want to say that I'm more motivated to solve problems people usually struggle with. There's a certain high in solving complex problems or designing something that's complex, which people don't really like to do, or do not want to address. So this is a battle that I need to fight. This also comes from my nature to get into fights when I was a teenager also. But I think it also comes down to risk appetite, to just jump and do things without really thinking about the consequences, which often is a hallmark of entrepreneurship. Primarily, how I basically work is like this. I see a problem. I try to see what solution to build around it, and I go with it. I don't really try to see what existing methods are, or what is the approach taken right now? I just tried to build in my own way.

People I have idolised, Richard Branson, for instance, has ADHD. Simon Sinek recently mentioned the same. One sees a pattern emerging in the way we think and approach problems.

What are your support systems? How have you built a supportive network around you? How do you pick the people who you want to work with?

There were very few people who had my back during my school days in Trivandrum, and I went through a dark time. I was just struggling to fit in. I was just struggling, waiting for people to find and acknowledge something good about me. I was always good at academics. Let alone best friends, making friends was difficult. It was said that I was corrupting my peers.

However, things changed in college, Christ University, Bengaluru. Luckily, I became friends with four guys who were ordained to be priests in Church. Those people were accommodative to everything that I had to say. I realised that you can actually trust people around you. You don't need to always be on guard or cautious of people around you. I think from there, my perception of people changed. I did my Bachelor's in Psychology, media and literature. A lot of good people supported me and I've kind of continued associating with them. And most relationships I've built are in my master's during MBA, and in the places I worked. These relationships have stayed and sustained me all my life.

I don't really go to any relationship, expecting anything out of it. And whatever I can offer, I offer it on the table. Giving without thinking about what you're going to receive in return has helped me in building a support system. My parents still don't agree with my principles, they still are not happy that I left the government job to run a business and everything.

My wife has been a pillar of strength. She said there's no point in feeling disheartened. She advised me to get into something that makes sense to me. My sister is also, like me. Now, when she has started working, she finds it difficult to cope with the working rigor and insecurities have crept in. She's also a great support system. We think alike. We sit in it, and discuss most of the things together.

I've met a lot of people along the way. In this space, you need people who are on the same page as you. Chitra Paul, Bilbilia, have been very supportive, and share the same vision. I'm part of a circle school program,10 of us, and we are trying different models of schools. It's a proper school incubation program. We are also trying to build an after-school program. People who are with me are those who think change is required and is possible.

I understand and appreciate the thought a change is possible and needs to be done? How did you execute your thoughts?

We started with the basic premise that ND children have to go to schools. Many schools are asking for shadow teachers. Most of the shadow teachers going to school are just nannies and ayyahs, who don't have the knowledge to work with the children. Basically, just leaving them dependent on the caretakers. What are the therapists and psychologists doing? They're sitting in their centre, seeing these kids for two hours? I did not see any real outcomes in this whole exercise.

The next step, was to ask ourselves was where are they qualifying from? We looked at the master's programs in different universities. We figured none of the shadow teachers have any idea of autism and ADHD. And they are doing therapies for our children. You have a KPMRC program that has hardly any exposure to children. So where do they do it?

So we have a for-profit model and we started supporting children directly through parent requests. Now we work with over 25 plus schools we work with all across Bangalore. I met Chitra, Ashika, first through Dr Bindiya , she was my psychologist and mentor.

In the Autism space, people are constantly talking about IT jobs, but a lot of children, though capable, are unemployed. So how do we properly design employment programs around that? Each person is good at something. Let's discuss a customised employment program. We work with one child, identify what their talents are and then start placing them. So that's when we started the barista program at Allinclusive Foundation. So similarity you can find a lot of customized employment opportunities that tap into the unique skills of neurodiverse children.

The other project we work on is in school inclusion. Schools are not inclusive. What could we do about it? We took 2-3 schools under the wings of All Inclusive Foundation. These are schools where the children are from low-income groups and have learning disabilities. 60% of the kids are drop outs. How do we make this work? It's not about sitting tolerance or any fancy terminologies, but about giving them a place where they feel they belong or they feel happy. They have a community around them; they start believing in their abilities, begin doing well for themselves, progressively realising, I'm good at this thing. The understanding, ‘I am appreciated’, gives them strength.

What have been your challenges, and how have you dealt with them?

I think the most important thing is to tell others, you're not good at something, rather than trying to pretend that you're good at something. It is sad, most people try to mask so much. I never liked to write notes. In class 7, I realised I could not read my own handwriting. I explained to my mom; I am not learning anything by writing like this. My mother stood up for me, and explained it to the staff. She told them, insistence on making me write would only aggravate my problem behaviours. Let him be.

I don't need to write maths as well. I worked in banking for six years. People who know me also know that my computation skills are excellent. I can calculate figures in seconds and give you answers. If you ask me to write the steps of it, I can't. In colleges, lectures are one hour. When you're younger, you will run out of classes. You don't want to disturb the class also, neither do you have that attention spanto sit through the lecture. In college, I went and told the teachers; I have nothing against you, but I cannot sit through a one-hour lecture. I shall attend for 25 minutes and please let me sleep. I did not mention ADHD, but they were accepting when I told them. I was scoring well, so they did not bother me. In the office, I sleep in the afternoons, because my brain kind of shuts off.

Having understood how I work, I have realised, people have the best of ideas, strategies, but fail when it comes to execution. That is my forte. When I decide to take on something, I take it to the finish. I'm very motivated to solve the problem, and do the groundwork. I started first by hiring a personal assistant, an intern from my aluminus Christ. She schedules my appointments for meetings, breaks down whatever task is to be done, sends me reminders to take time out, telling someone to follow up, doing all those things. I focus on the problem at hand, and the rest is handled. Every organisation I run I have people like that to support me, people who are good at running schedules, breaks down my work and also do the routine followups with the team. I monitor them on the systems and processes I build on top of it.

I also struggle with organisational tasks like, if I have 10 tasks on hand, how do I priortise? Productivity apps like Notion, Trello have helped me be on top of the game. I also tend to work with mentors and coaches, which has worked for me. Any new business ideas that I have launched, I've always worked with an incubation program, I work with people who are ready to coach me in that space. That, I believe, is beneficial because someone else is holding you accountable to deliver on your promises.

I'm very bad at putting myself out there. I usually ought to give interviews but I shy away from the media. But even to clients, I don't want to engage in small talk. I leave it to my team. I dont want it to eat into my productive time. The team handles the rest. My clients always find this annoying. Why is this person not reachable? I tell them, if there is something important, I shall address it, but I don't want to just talk to you. Just because you want to talk to me to feel good about it; I'm not the person for that. So probably those are things I'm just bad at. I acknowledge that.

I also give unrealistic deadlines to my team members. Because I work on very short deadlines. At home, my wife bears the brunt of it. I work on my time. If the vessels have to be done, I do it on my terms and sense of time. I get to finish it by night. Be it laundry or a used coffee cup to be washed.

How can you leverage your unique perspectives to identify and pursue new business opportunities? To some extent, you have already answered this question.

There's this tendency in me to go into that rabbit hole, like most developers tend to do. I mean, you just go into that hole again, and again, to figure out what is happening. What are the international models? What's possible? What's the best research happening right now? Initially, it's like a full discovery phase, where you have like, 50-60 tabs open at a time.

I shall draw a parallel to a widget spinner that children use. I am constantly excited over one idea that keeps me afloat and enthusiastic. So, I manage to do the routine stuff. I am constantly iterating on an idea that makes other things bearable for me.

Any final words for aspiring ND business owners?

My dream is to run an incubation program for children. I work with schools as a mentor for innovation programs. I've been doing it for the last five- six years. I find the ND kids are the smartest. But as a culture, I don't think we value entrepreneurship. We think, oh, he's already not good at academics. Now, how will he be an entrepreneur? You think that academics and entrepreneurship have some weird connection, which is not there, anywhere else.

High school education is where we need to start building work ready skills. I wouldn't say entrepreneurship skills, but more like communication, leadership, doing projects, doing internships. Go find five businesses around your house, go and intern with them. I have sold Christmas cards. I would design them on photoshop and sell them with a 5-10% margin as a kid.

I always try to plan my time as in like, I know in the afternoon, I'm not good. Evenings I keep for my family. I like to spend time with my wife. We sit and chat, go out. We have our own fun. But I think that balance is very important. I love designs and I am at my creative best at night.

I have a very good friend who's a robotics engineer, who's autistic. He has built really good startups. His problem is that he gets feverish about the problem he has to solve. He works on it, for two weeks, then has one month of burnout. He would not eat, drink, sleep. His work is excellent, and it is difficult to find that quality of work elsewhere. The reason I bring this up is, we tend to hyper-focus on one thing. Your health is also important. You can't do this hustle culture for long. I think we have a lot of insecurities with us. Find good people around you. There a lot of good people in the world to support you and help you with things that you're not good at. And especially with social focus business, you'll find a lot of people who are ready to be supportive without expecting anything in return. Surrounding yourself with pessimistic people doesn't work.

This is an analogy of an elephant being in the water. Sometimes you just need to get into the water and just stand there. If you try to do too many things, then the water gets muddy and you can't drink the water. Entrepreneurship is more like that. Like, you know, like when COVID happened, I was out of my job. And entered full time into entrepreneurship. There was no money coming in. I had two verticals. One being the shadow teachers and the other, home therapy, where my therapists go home and work with the children and their moms. Not just me, many people could not operate under those circumstances. In the meanwhile, we started online therapies. However, when covid ended, I stopped online programs. The demand for shadow teachers also suddenly shot up. You just need to hang on there and do the things that you're doing correctly, but also acknowledge that when it's failing. ND entrepreneurs, loose motivation quickly. I would prize resilience over everything else, be it intelligence or hard work.

Thank you, Midhun Noble, for sharing your story and giving us valuable insights.

noreply@blogger.com (viji) — Sat, 15 Apr 2023 03:28:00 +0000

Qazil Fazil Azeem, MFA, is a communication designer, media and advertising educator. Neurodiverse, he hails from Karachi in Pakistan.

Fazli Azeem is an Assistant Professor of Design at the Media Science Department, SZABIST (Shaheed Zulfikar Ali Bhutto Institute of Science & Technology) University, Karachi Campus, where he teaches undergrad and master students of media science, media studies, advertising strategy, and design. He is also the Program Manager of the SZABIST Master of Media Science (MMS), MS Media Studies (MSMD) and Master of Advertising (MoA) graduate degrees, focal person for ORIC, and focal person for the university Disability committee. He graduated with an MFA in Design from the Dynamic Media Institute at the Massachusetts College of Art and Design (MassArt), Boston USA in 2014, through the US State Department's Fulbright scholarship. His essays on ASD was published in 2014, Be there, Done that, Try this, - An Aspie's guide to Life on Earth. In 2006, he began advocating for awareness of autism in Pakistan through media appearances on Pakistani morning shows, and it has been 17 years since then.

In this interview, Qazi Fazil Azeem, discusses the importance of the entrepreneurial mindset, which sees failures as learning experiences and encourages calculated risk-taking. The author reflects on his experiences attending hackathons and entrepreneurship events in Boston and Cambridge, where he saw the true spirit of collaboration and diverse groups of people working together. The author also discusses the cultural factors that promote or impede entrepreneurship in South Asian countries and the challenges faced by entrepreneurs with disabilities. In his opinion, in South Asia, foreign investors prefer co-founders with foreign education. He opines, it is not the curriculum that needs to change at all to support entrepreneurship, a parallel system needs to be created at all levels to support and encourage entrepreneurship. The author's advice to upcoming entrepreneurs is to start small, validate their ideas, seek advice and feedback, and take calculated risks.

Q1. Your thesis on “Inclusive Interfaces” was partially researched at the MIT media lab. “Curious learning” your graduate startup, won a residency at the Harvard innovation lab. Could you tell us more about it?

A1. I won the Fulbright Scholarship to study in the USA for my MFA degree in Design in the Dynamic Media Institute at the Massachusetts College of Art and Design (2012-2014). This was my first time living away from my country for so long and my first and only time I have been to the USA. My graduate electives and capstone thesis project was researched at the famous MIT Media Lab's Lifelong Learning group under courses taught by LEGO Professor Mitch Resnick, a leading authority on the subject of learning through play, and the role of creativity in lifelong learning. My course group members were cross registered students from the Harvard Graduate School of Education, just as I was cross registered from MassArt. All of us had a background in education and our graduate degrees were all connected to EdTech and using technology to teach children and youth. I also took an elective course in Entrepreneurship with the same group of students, this course was offered at the MIT Media Lab through the MIT's famous Sloan School of Business Professors Joost Bonsen and computer scientist and entrepreneur Sandy Pentland. It was a course requirement to make a graduate student level startup and pitch the idea to the class and if selected, to the annual MIT $100k entrepreneurship competition. The initial direction of my research had started after meeting the acclaimed designer Don Norman, who has been quoted as saying "...when we design something that can be used by those with disabilities, we often make it better for everyone." My goal was to work under the parameters of Universal Design to create inclusive digital and analog interfaces which could replace conventional and traditional experiences for neurotypicals as well as those with learning disabilities such as Autism, ADHD and Dyspraxia. Through my research, I had even met and interviewed Lynda Weinman, founder of the world’s largest video training website back then Lynda.com (which was later sold to LinkedIn for over 1.7 billion USD), and had face to face conversations with famous south asian background educationist Sal Khan (Founder of Khan Academy) and acclaimed film director and educationist, Manoj Night Shyamalan.

The idea for my capstone project Curious Learning App was based on my personal experiences to use gamification theory (badging) as an extrinsic motivator while connecting a student’s smartphone GPS (through Google Maps) with open source data on publicly accessible Art, Sculptures and historic buildings (thorough Wikipedia), converting the city into a free public museum experience for students or tourists who could not afford tickets to expensive Museums and public entertainment. Thinking back about the idea now, it was not different at all from the mega hit game Pokemon GO which was made by Niantic and Nintendo years after I graduated, which confirms that my ideas were correct and I was right back then. We called the startup "Curious Learning", I designed the user interface and even got feedback on it from employees of IDEO (the world's number 1 design company) when they came to my class during the final presentation day. I pitched the startups Minimum Viable product (MVP) and became semi-finalists in the MIT $100k entrepreneurship competition, beating hundreds of other graduate level startups at MIT and winning USD$1000 to work on the prototype as well as 4 months incubation at the Harvard Innovation Lab (through my group members who were Harvard University graduate students). I even got the opportunity to present my Curious Learning startup at the 2014 Education Datapalooza event in Washington DC, which was organized by the US Department of Education and the White House Office of Science and Technology Policy (OSTP), to educators from across the USA. A TEDx talk at TedxBeaconstreet was made on it by my Harvard co-founder Aya Jennifer Sakaguchi which can be seen on Youtube and I made all the slides and even wrote the script for her Tedx talk. I had taken this class in my last semester and had to graduate and return back to Pakistan due to my scholarship agreement with the US State Department (which funds the Fulbright Scholarship), that I had to return to Pakistan within 30 days of my convocation date and then stay inside Pakistan for the same duration that I studied in the USA. This is why I could not continue working on the startup. My research objectives were based on documented cognitive advantages of savants and those with higher functioning Autism spectrum of disorders (eg those with Hyperlexia and Aspergers Syndrome), using published autobiographical writings of gifted self-advocates and public figures such as Dr Temple Grandin and Jacob Barnett to create inclusive digital interfaces and tool that would aid them based on their well described extreme learning styles, with the goal that these same experiences could be used by neurotypical learners as well. Through my research journey, I even met Dr Dania Jekel, the director of the Asperger Association of New England, who turned out to be the great-grand daughter of the father of modern Psychology, Dr Sigmund Freud. It was like coming full circle, as the descendant of the pioneer of the entire field of Psychology, was running a center for teenagers and adults on the Autism Spectrum, training them for careers and mentoring them for entrepreneurship, supported by their families. I understand that all of this seems hard to believe, and I have photos with all the people I met, even videos in some cases. For many years, I still did not come to terms which the number of things I achieved in the USA during my two years there. I accomplished more in those two years than I did in my 25 years of living in Karachi, Pakistan. I have thought deeply about this, and it may have to do with the amount of money the US has invested in higher education, not millions but billions of dollars of investment in their educational ecosystem in higher education that directly leads to student level startups coming out of course projects which directly pitch for investment from angel investors and government funding. My Fulbright status at MassArt allowed me the privilege of taking courses at the world’s Number 1 university, the Massachusetts Institute of Technology, the legendary MIT Media Lab, and as a consequence of my MIT student ID card, was able to access all of the libraries and student facilities at Harvard University, in particular the Harvard Innovation Lab space where I not only learned by also mentored and advised many other student level startups. It is the welcoming, supportive, radically inclusive nature of MIT that gave me so much courage to do things that I had not even thought of before in my life, to use all those opportunities. For many months, there I said YES to every possible opportunity that came my way, every public event, every hackathon, every competition, and every public lecture (that I had time to attend). I also cannot write all the above without thanking the US state Department' Fulbright Scholarship, which funded my education in the USA 100 percent, and even paid me a living stipend to take care of rent, food, travel and insurance. I could never, in many lifetimes, have ever afforded to study in the USA, let alone even travel there on my own. They welcomed my neurodiverse identity as an adult on the Autism Spectrum, seeing it as my individual strength, accommodating me at all levels, and welcoming what I had to contribute to their classes and learning under the context of diversity. My contributions were welcomed, my voice was heard. The context of explaining all this is that what I was able to do, to work on student level startups, on entrepreneurship, was only possible since they (The cities of Boston and Cambridge in Massachusetts, USA) have created systems for their masses (regardless if they are enrolled student/faculty or not) to collaborate and work together during weekend "hackathon" events, to pitch ideas, win prizes and then turn those solutions into startups, companies and partnerships.

Q2. You mentioned having mentored two graduate start-ups. And participated in many entrepreneurial hackathons. How did these experiences help you shape your strengths and identify your weaknesses?

A2. The city of Boston is where I was studying at MassArt, and its sister city of Cambridge is where I was taking my graduate electives at the MIT Media Lab and where I was incubated at the Harvard Innovation Lab. Surrounded by so many world-class universities teaching subjects in almost all fields, the multi-cultural classes had students from most countries on earth. Negotiations, communication, and collaboration only happen once the barrier of language and culture are overcome. This is an analogy for neurodiversity, inclusion and the work environment of the future. Not everyone can be measured by the same yard stick. Not everyone can communicate well in English. No everyone even has the same interests that you have, even while attending the same classes. However, during a class, groups were created organically, based on common interests of the students, in different domains. The process was democratic, but it was also curated, pushed gently in particular directions by the Professors leading the classes. Each class had multiple professors as well as graduate assistants, senior students helping with the teaching and evaluation of the submissions. This model was parallel in the public hackathons. Instead of limiting hackathons to students, they were events open to the community, with free food, gifts and prizes sponsored by startups and for-profit organizations. Every class I took, every hackathon I participated in, there were themes that repeated every time. They welcomed everyone’s perspectives and opinions, and their interactions were based on things they did that they enjoyed, it almost felt like playing, or rather, learning through play. One person would present an Idea, another would create a paper prototype, and the next team member would add to it or increment it or push it further, and a third would add their own insight into the idea from their own life or experiences or their experiences from their own field. Each group worked with members of different ages, different races, different nationalities, languages and cultural background. It looked to me like this is how life must have been thousands of years ago in south Asia, where diverse groups of people must have worked together over time on mutual interests. Entrepreneurship is not just a process or outcome, it is a way of thinking, now formally called the Entrepreneurial mindset, also known as a "growth mindset", that sees failures as experiences to learn from, not be ashamed of. In South Asian countries, and most of the developing world, we see failure as something to hide and not discuss, but in real life, no one has ever won without losing many times first. What about those around you who were born lucky into wealth? How many people do you know who have "won" or succeeded so much that they break down every time they encounter failure. The Fulbright scholarship was created 75 years ago for this single reason, for people to people cultural exchange between academics of the world and everyday Americans, for them to learn from us, and us to learn from them. One man is not an island, not much progress can be made in life by yourself, and you may be the best in the world at what you do, but you won’t get far without others feedback, support and collaboration. Before studying in the USA, I had done things mostly on my own, but it was the true spirit of collaboration which i saw at all these entrepreneurial hackathons across Boston and Cambridge that pushed me to rethink everything I had done before in my life, that pushed me to be social, welcoming of strangers, working together with them during short durations of time, adding my creativity to theirs. We are not born perfect, it takes a lifetime of experiences to get to the point where we become a role model for someone else. That is something to aspire to, as every conference I attended, every hackathon I attended, every public lecture, there were successful entrepreneurs in the audience or there as speakers and mentors to share their stories and experiences with new and potential entrepreneurs. These experiences not only changed my thinking, but I physically changed as well, my own family could not recognize me in some of my social media photos, based on the amount of weight I lost while studying abroad, while only eating things that I liked and eating less (as Boston is one of the most expensive cities in the world). These daily and frequent interactions with other creative, motivated students and the general public changed everything about how I saw the world and how I saw myself, how I saw my role in the world and what kind of person I wanted to be. It is the struggle, the journey that shapes a person, not the destination. Entrepreneurship or Entrepreneurial thinking is a mindset, not just an activity, and should become part of everyone’s life, encouraged at all levels in society.

Q 3. In South Asia, according to you, what cultural factors are conducive to promoting entrepreneurial abilities? And what are the impediments?

A 3. I could potentially write a book on this subject, based on the decades of experiences I have had regarding this chain of thought. I have been privileged to be Pakistan’s national speaker on the subject of Autism Spectrum of Disorders and invited in the last 15 years to speak at conferences in Bangladesh, India, Bhutan and many other countries (Qatar, USA) as well as speak at Autism events in Pakistan. This allowed me access to organizations, nonprofits, corporations, government-led initiatives across many countries, and all of them have radically different approaches to promoting entrepreneurship. Since I have so much to say and not enough space, I will generalize my perspectives between what I saw in South Asian countries vs what I saw in detail in the USA, the leading country in the world in context of entrepreneurship education and support of both young and established entrepreneurs. I was even invited at the US State Department’s Global Entrepreneurship Summit (GES 2015) at the United Nations building in Nairobi, Kenya, where I met entrepreneurs from all over the world, especially those from India and Pakistan that had moved outside South Asia due to lack of support in their own countries. There is an analogy to be made here to explain the difference. Take the example of a TV commercial for McDonalds in the USA, with its famous tagline “i'm lovin' it”, showing the one lone person sitting alone, eating his burger, enjoying it on his own. Now take the same company and see an advertisement for it for any country in South Asia, India, Bangladesh or Pakistan, the advertisement will show a whole family sitting and enjoying a family meal, from the children playing with their happy meal toys, to their teenage siblings, their parents and even grandparents too, on the same table, sharing their food. There is a lot of interference here, in our family structures, trying to be micromanaged each time. This is the difference. Entrepreneurship is not just risk taking, it is calculated risk taking. It provides more jobs than all of the world’s corporations put together. Entrepreneurship is not just risk taking, it is calculated risk taking. It provides more jobs than all of the world’s corporations put together. The ONLY startups who have actually succeeded (been acquired) in Pakistan’s startup ecosystem are those whose founder or co-founders studied abroad (in the USA or UK), I am referring to CAREEM, etc. This is a topic still being debated in Pakistan.

Q4. You are the focal person for the disability committee at Shaheed Zulfikar Bhutto Institute of Science and Technology accessibility committee, created to implement the 2021 HEC Policy for students with Disabilities. Is there a way to build entrepreneur skills through curriculum changes?

A4. These are two very different things. The Higher Education Commission (Government of Pakistan) is a regulatory body to check quality control for public and private sector higher education institutes in Pakistan, on the same model at the University Grants Commission of India (The HEC in Pakistan was previously called the UGC). I teach at a private university, where there are no financial resources or infrastructure support by the government, unlike the support given to Public sector universities. They only regulate quality, impose laws and demand standards to be met. The HEC Student inclusion policy clearly outlines that all campuses must be inclusive, that no student can be denied admission on the grounds of their disability, it outlines the processes and committees that must exist to provide accommodations when requested by the student and defines a basic report that must be submitted annually or when requested by the HEC. However, as I mentioned before, while the Government provides funding and training for their own public sector universities, they do not provide any support (financial, infrastructure or training) to private universities. As a consequence the accommodations are provided when the student requests them, based on documented criteria, and all the requests till now have been regarding accommodations during examinations. The HEC has a different entity that they created to support entrepreneurship at all higher education institutions in Pakistan called ORIC (Offices of Research, Innovation and Commercialization), and I am my departments focal person for ORIC in the university, so I am aware of their goals and events. The ORIC model has started only a few years ago in Pakistan and the university where I work, SZABIST (known across the world for their management sciences courses and their industry-standard MBA degree) has only recently started competitions where the final year project (FYP) of students can be entered into university and HEC level competitions to win potential funding. However, what you are asking is the intersection of the students with disabilities pitching their final year projects through the ORIC model to apply for incubation, funding and VC support. That has not happened yet in Pakistan, and I don’t see it happening for many years. The reason is a clear one to me. I started advocating for awareness of Autism in Pakistan (on a volunteer basis, no one ever paid me for it) back in 2006, through my media appearances in morning shows in Pakistan. In 2023, it has been 17 years of doing this self-advocacy for Autism spectrum of disorders in Pakistan. Only in the last few years has critical mass finally reached that the government has started created free or subsidized Autism therapy centers in some major cities like Karachi, Lahore and Islamabad. The NOWPDP nonprofit organization (Network of Organizations Working for People with Disabilities Pakistan) takes credit for this initiative, acting as the intermediary pressure lobby group to bridge the gap between the parents and organizations of special needs children and adults, and the government of Pakistan. Over a decade of writing articles each year since the UN World Autism Awareness Day started (which I even spoke at in New York at the UN in 2013), has finally pushed the government to allocate funds and provide relief and training to parents and special needs children. Almost no initiatives exist for adults on the autism spectrum, who approach the same organizations that deal with all disabilities, and the word neurodiverse is not understood at all in Pakistan, with NOWPDP’s efforts focused on the “visible” disabilities, such as paraplegia, the blind and the deaf. Pakistan has much to learn from its neighbors in India, Bangladesh and other SAARC Countries. I was on one of the last flights of PIA from Pakistan to India back in 2015, when I went to Delhi to be Pakistan’s national speaker at the south Asian autism regional conference. . Regrettably due to the political turmoil in the region, there has been almost no physical travel or collaboration at conferences between India and Pakistan since 2015, and parents and organizations are now collaborating online through video conferences. So, the question was if there a way to build entrepreneur skills through curriculum changes? Not directly. I don’t think so. I saw the support for Entrepreneurship extensively in Boston and Cambridge at the MIT, whose alumni have gone on to co-found startups worth billions of dollars. I met many CEOS of companies at public talks there when I was studying at the MIT Media Lab. The way MIT supports entrepreneurship among students is an extensive strategy that looks at the entire educational system and the lifespan of the student. It targets not only its existing students but also their own professors, researchers, employees, the community of people who live close by, their extensive alumni, students from nearby universities, foreign investors, executive education, lifelong learners, people who take their free online courses on EDx and other online platforms and even venture capitalists in the greater boston tech ecosystem, and especially the fortune 100 companies who hold regular events on campus to train, mentor or hire students. The single most captivating thing that I saw there during my time as a student there, were the weekend Hackathon events. These events are always focused on one major industry (eg health, transport, water, energy, food etc) with all its major problems, opportunities and potentials discussed, with existing students as well as alumni and the greater boston community residents participating over the weekend, working on likeminded problems. I will be honest here, initially I was attracted by all the free food and free merchandise (shirts, pens, caps, and discount coupons) as Boston is an expensive city to live in, but soon, I was attending the hackathons as I needed feedback for my own thesis research and I wanted to connect with people and increase my network. The greatest thing I took away from these hackathons was not the winning (even though my group did win a few times, beating teams from across the university), but the process of collaboration, working together for a greater purpose, and the excellent post event support by the MIT network to connect us with further opportunities, reward us with support like incubation, prize money, venture capitalists and companies that could have hired me after I graduated. It is not the curriculum that needs to change at all to support entrepreneurship, a parallel system needs to be created at all levels to support and encourage entrepreneurship at all levels, it’s a mindset problem. The only way mindsets are changed is through a supportive, encouraging environment. I did not have to worry about food at the hackathons, I could leave late when I wanted, there was no pressure (no marks), I was there because I wanted to be there. I knew that no matter what, just being there with others that shared my ideas would result in a win-win situation not only for me but for the other people there, who would also learn from my experiences. To support entrepreneurship at the higher education level, the support needs to come from right at the top of the command chain, from the President of the university, and be made into one of the KPIs of the university, supported by lawyers when needed (Intellectual property protection) as well as available funds to support student level ventures, which need to be awarded liberally, as seed funding, along with an network of experts and volunteers to help in the incubation process. Most startups that I saw emerge during my time there were either physical products or apps, not services, but I may have been biased, as I was indeed at an engineering university which would be pre-disposed to these trends.

Q5. What is your advice to upcoming entrepreneurs?

A5. Entrepreneurship requires validation of the need for a product in the market. Systems such as lean startup methodologies, prototyping, pretotyping, paper prototyping and of course design thinking and all vetted and practiced methods used all over the world to determine the need of a product or service. There is a saying, “when the student is ready, the teacher is waiting”. Entrepreneurship cannot happen without the advice of someone with more experience, someone who has failed many times and then succeeded and is now giving back to the community by passing on their experiences. Entrepreneurship cannot happen without venture capital and investment. My advice to you is very clear and very simple, don’t ask, and just start. There will never be a perfect time. There will never be a perfect environment. Take some small amount of money, make a minimum viable prototype, get feedback from your potential customers, validate your idea, then make a business plan and pitch it at a business plan competition or apply for free incubation. There are organizations around you, especially at universities, that are holding these pro-entrepreneurship events, just attend and observe to learn and then plan to apply the next year. A time may come when you feel your own city or country and ecosystem is not supporting you, but if you have a validated product and enough evidence of satisfied customers, the world is a very big place. Start pitching abroad. See the US Embassy website in your own country for US State Department events throughout the year such as grants and competitions for US State department alumni (those who went on international student exchanges and scholarships to the USA), you can easily partner with such people around you, and use their connection to the US and make them your co-founder. There are many opportunities, ask around, talk to people around you, and if you don’t have people near you who are sharing good tips or advice about entrepreneurship, then reach out to family members or friends who are entrepreneurs. No man is an island. It makes no difference if you are neurodiverse or not, a business is a business. If you can prove that you have a working business model, you will get support from others and maybe someday, get funding to validate your startup or scale it up, in your country or another one. Today is the first day of the next of your life, take a stand, take a risk today so that your tomorrows are secure. Entrepreneurship is not a thing you do, it is a way of thinking and for many, a way of life.

Here is a link to one of his videos: https://www.youtube.com/watch?v=p-82r-A8Psw

noreply@blogger.com (viji) — Wed, 12 Apr 2023 04:38:00 +0000

Nehal Tiwari, 24 yrs, is a young entrepreneur on the rise. She did her B.sc (IT) from St. Xavier’s College Mumbai. Currently employed at EY as an associate, she is also an artist whose stone art has won many accolades. Sprightly, and hardworking, she is pleased to have made her passion into a career. Her family is her biggest support. Understanding and expressing verbal communication has been her biggest challenge.

1. When did you start stone art and how did it all begin?

Initially, I started painting using oil pastels and then I did WaterColour Paintings for the past few years. I attended the Stone painting ECC (Extra Curricular Credits) workshop at St. Xavier’s college on 10th February 2018. After the Stone Painting Workshop, I started doing Stone Paintings. Now, it has become my passion.

2. You do a lot of work on stone. Where do you get your inspiration for your stone art?

I like to make different paintings like landscapes, cartoon characters, funny faces, Doll faces, Buddha, Saraswati Ji, etc. My favourite is to make message plates and name plates. But I also make theme-based stone paintings on various occasions like Ganapati festival, Janmashtami, Holi, Independence Day, Mother’s Day, Valentine’s Day, Father’s Day, Republic Day, Ram Navami, Guru Nanak Jayanti, etc.

3. As an associate of EY, how do you balance your entrepreneurship and your work life? You recently won an award at EY too.

I am comfortable working in hybrid mode. My office timings are from 10am to 6pm. It is from Monday to Friday. Remaining days, I work from home. I do stone paintings as I am free after office hours, on Saturday and Sunday and also during holidays.I try to learn new skills at my office. During my college, I did Internship at HPCL and BNP Paribas. I have learnt a few things during my internship and it has helped me in my job.I have also won an award at EY (Ernst and Young) named ‘I am Exceptional’.

4. How has your entrepreneurial journey helped you in your work?

My skills in creativity, patience, detailing, hard work, observation have improved with stone painting. I try to use the same skills at my office. These hold me in good stead.

5. What part of your entrepreneur journey do you enjoy?

I am very passionate about my stone paintings. When I make new stone art, then I put it on social media platforms like WhatsApp, Facebook, Yammer, and Instagram. I also display my paintings in various exhibitions, where my artworks are sold. I also get orders on social media platforms. I feel happy when people praise me and appreciate my work online as well as in-person during exhibitions. I also earn by selling my stone paintings apart from my salary which also gives me a lot of happiness.

6. Your mother, Seema, has written a book, Sangharsh Sang harsh, on your life story? How has your family been your biggest support?

Sangharsh Sang Harsh is a story of our family. My parents took me for various therapies like speech therapy, behavioural therapy, occupation therapy, etc. My parents also helped me during studies when I was in school and college. They used to teach me and helped me in making notes. When I didn’t have friends at school, then my younger sister Vaidicka became my best friend.

Sharing some of her artworks and contact details.

Facebook shop : https://www.facebook.com/Stonepaintings.Nehal/

Website: https://stonepainting-nehal.com

Instapage: https://instagram.com/stonepainting.mumbai

Thank you, Nehal, for sharing glimpses of your life.

noreply@blogger.com (viji) — Wed, 05 Apr 2023 04:12:00 +0000

Joel Godi

In a fascinating conversation with Joel Godi; the founder & CEO of Neurogifted. A neurodivergent champion, and an AuDHD entrepreneur. Candid and refreshingly honest, Joel shares his wisdom and experiences with us. This is a survivor's story about reinventing himself. He also makes a strong case for entrepreneurship and how it has finally helped him achieve his potential. A social psychologist by profession, he advocates, going forward, diversity is the key to successful sustenance.

Why did you choose to be an entrepreneur?

Frankly, I don't think I had a choice in the matter. Because no matter where I was, at school, or work, I knew that meant having a very difficult time adjusting to the environments, both sensory and social. It was just impossible for me to predict what kind of environment I would be able to perform in, or in which environment I would not be able to perform. I have worked in the Gulf; I have worked in India in different cities, but my staying power was like two or three years. I couldn't stay in one place for much longer. Eventually, it led to burnout. I came to a point where I just collapsed - unable to wake up for weeks. Sometimes I would get a high fever. And it took me a lot of time to recover from those things.

I had no idea I was autistic or ADHD until much later in life. It became very clear by the time I was 30 that I could not continue to survive in this kind of environment, but not knowing what the reasons were, I found it very difficult to explain to my family and my elders, why I was not able to stick with a job. As a result, I began to consider working as a freelancer.

In the late 90s, English was a superpower. So, I capitalized on that, and I got into learning and development as a trainer and started doing those kinds of things. When I realized it was providing me with enough income, I quit the 9 to 5 job scene. So, it was never a plan. There was just no survival option for me in a regular job.

Making the transition from working for someone to being your own boss requires a great deal of courage. Did you not face the same challenges as a trainer because again, you are in front of an audience?

As a trainer, I could play to my strengths. For example, if it was a training session of two days' duration, it wasn't something that I had to do every day. I could be mentally prepared and set it up in such a way that I wouldn't be overwhelmed. I would train for about an hour and a half and then slip into an activity for example that would give me the space to recover. But for me, I design how I work based on my spoons for the day - my 'spoons capacity'. But somehow this strategy always worked out for everybody. I probably realized that other people also have their own limitations. I have a strong intuition. Even if I take a 40-minute session and I know I'm reaching the limits of my capacity, then others must be in a similar situation as well. The adjustments we make for neurodivergent people are generally welcomed and appreciated by neurotypicals too, whether they realize it or not.

In the traditional workplace, they expect you to work nine to five. That's not how my brain works. I cannot work 24/7. An ebb follows a surge in energy levels. I can't turn over work from nine to five. That's just not my thing. So that's why it was a matter of survival for me. A decade later, when I discovered my neurodiversity, it all fell into place. At that point in time, it was something I had kept to myself. Nobody understood why I was playing with my life, being a psychologist, and not exploring all the possibilities around me. But that's just how it is. That's the life of a neurodivergent.

How did your family cope with all the changes?

I would just come home one day and they wouldn't understand. Why would you leave a good job? Back in 97, in Dubai, you just had to go there on a tourist visa and you would get a job. That was how easy it was. Because the city was just getting started. And when I went there, I got a good job in a good company. The manager was from Hyderabad and because I was also from Hyderabad, she immediately placed me in her department and made me an assistant manager. So, I started off on a good note. But then two years later, I quit suddenly. It was a good job with a good salary with a family visa, which was very difficult to get. Having a car, driver, everything. I came back to India not knowing what was next. But one thing I knew was that I couldn't survive anymore in that environment.

My family took it badly. Of course, they thought I was irresponsible. I used to believe that I lacked ambition and other such qualities. In traditional families, you know, the way it works. For instance, your son gets a good job. It's as valuable as oxygen, and he squanders it. It happened repeatedly in my life. And they came to a point where they just left me on my own. It was not a happy situation in my house. I knew they were very disappointed in me. I couldn't explain myself, and I couldn't make them happy as well.

How did you push yourself to get a diagnosis? Did someone urge you to look into it? Or is it your background in social psychology?

One way is to look at it as divine intervention. I was desperate about the way I was dealing with the outside world. I couldn't share this with anyone. So I would just walk away from meetings, just say that I got a call, get out, and take a rickshaw. I couldn't take it anymore. I knew that in half an hour; I had to go home and lock myself in my room for my safety. People couldn't understand my strange behavior. How could they? And one moment, I'm like, right there, and I'm so focused, and I'm so energetic, and then, boom. The next moment, I'm running away and acting strange. People assumed I was an eccentric person. They imagined their own things. Some people thought I was high, others thought it was a cycle, and others interpreted it differently. I had a road accident when I was 40. I had a severe head injury. Because of this, I was feeling dizzy, and I lost my sleep. I could not sleep without tablets. This went on for a few weeks, and the doctors suggested I see a psychiatrist to talk about my sleep patterns. In the second meeting itself, he looked at my prior history of sleep deprivation and, when he suggested further inquiry, we went in, and we had a diagnosis of ADHD. And later the autism diagnosis comes out. And that was, for me, a shock! Because, on top of everything else, I didn't want to give anybody any more bad news about my life. I didn't want to accept it. I just kept it to myself. However, there was personal healing for me, knowing that, I had a lot of answers now for the way my work, and my personal life, the way they had turned out.

There was clarity in my mind, what I could do and could not do. But like I said, I did not share this with anyone. Three years later, I found the comfort within me to accept my reality. Even today in my family, this is one topic they will not talk about.

What year did the accident occur? How did things progress from there?

This was 2011. I finally accepted my diagnosis in 2014. In 2015, I began my advocacy and activism for neuroinclusion. When it became clear that this was the reason my life had turned out the way it had, I decided I needed to do something about it. I didn't want anyone to go through what I had gone through due to ignorance. The reason for my thought process was simple. I could imagine so many people would commit suicide in similar circumstances. I was a survivor, and I should help others also survive. And that's how I started my work in neurodiversity in 2015.

By 2015, I had also acquired deep knowledge about neurodiversity. As I was discovering my own neurodiversity, trying to find answers to my life, I connected with friends across the globe. At that time, many of us are just getting into active emailing; so I connected with friends in the US and India, who I made sure were not in my inner circle, but more like acquaintances. That felt like a safe place to talk about my neurodivergence. And, you know, one person connected me to another. Finally, I ended up working on some amazing research projects on neurodiversity between 2015 and 2017. In 2017, a book was released by the University of Washington, Autism at work. That was a turning point for me as an organizational professional. So those two years was a complete learning experience. It's only after that that I learned to develop a lot of content and training materials. Many things fell into place: my lived experience, the life experience of my understanding of organizations, and my specialization in social psychology. And I was more interested in adult neurodivergence, rather than autism in children. I felt I could contribute a lot more in this space. It is easier for me to understand neurodivergence in the social context, workplace culture, religion, and things like that. So that helped me put out a lot of content that is being used across the world today. I'm excited about that.

What do you think are your strengths as an entrepreneur?

I have 3-4 clear strengths. Although I am autistic, ADHD is a dominant factor in my life. This combination presents a lot of uncertainty in how I'm going to respond to different situations. Sometimes it's my autism, and other times it's my ADHD that's reacting to various stimuli. My key strengths are my hyper-focus ability, out-of-the-box thinking, pattern recognition, and creativity.

My creativity and innovative ideas are, again, probably the best things about me. My teammates and colleagues appreciate this aspect of mine. When something comes up for discussion, and we decide to continue the next day, by the next morning, I come up with something substantial, be it a new theory, a concept, a game, or a new activity. On that front, it's really great. I am most productive between the hours of 12 a.m. and 5 a.m. when the rest of the world is sleeping. But I can't do it 24/7. I am available to deliver 3-4 days a week at best. Every week, I have to find a way to break the pattern of staying awake and working at night. Being able to sleep through the night is a constant struggle for me, but I enjoy the flip side because of the benefits it provides. Earlier, I tried using pills to go to sleep, trying to conform to the worldview of sleeping at night. But now I just let me be me.

And I also have good pattern recognition. When I converse with people, I'm able to predict and get insights from their behaviors, peek into their mindsets, and their thought processes. And some say it's because of my background in psychology, but I think it's because of my pattern recognition skills, one word, or one thing I can catch, and, develop on that and, and bring forth, my views. This helps us in our team strategies in terms of better outcomes in our work; in negotiations, and so many other things.

What are the challenges you face? Are the challenges slightly different in an Indian context?

The neurodiversity experience, and the cultural experiences, are very different. First, there is a clear difference between how East and West experience neurodiversity. For instance, even basic things like eye contact, for example, are viewed and understood differently across cultures, and things like that. In my case, I've developed my ability for eye contact; I know I can look at somebody without actually looking at their face. More like a self-mechanism. I might look straight into your eyes, but I'm not even registering anything. I'm blank. These are things you develop with age, you develop these coping mechanisms to overcome those challenges.

I don't generally make a good first impression. There is a basic communication gap. Sometimes, even for a basic question, my answers could be way off the mark. Even now, while I'm talking to you, that might be the case. I'll be talking, but my brain is thinking 10 steps ahead, and I'm trying to catch up with what it's saying. And it's giving me 10 things to say at the same time, and I have to constantly pick and choose. So, a lot is happening behind one simple articulation and being able to give out one simple answer. There's always an incomplete sentence thrown in which I don't know why I said those things. But now I think as an adult, that doesn't happen too often. But as a youngster, this was the case.

I have difficulties completing jobs. I don't stick to one thing; I do 10 things at a time. They're all moving simultaneously. I'll be doing something and half an hour later, I'll be working on something else. I can't work steadily on one thing. These are challenges where I need some co-workers' support, which my colleagues give me. They keep me on track and focused. Because time is important. We have deadlines to meet and things like that.

Another thing that I'm impacted by is my PDA, pathological demand avoidance. Until I am pushed to the brink, I won't start something. If repeatedly told to do something, my brain just refuses to do it. It's task avoidance - as simple as that. I might sit quietly for 10 days and then complete the task in the last 4 hrs. All these traits are impractical when you have to be a team player. There are many challenges in the workplace. If you have an understanding team, which fortunately I did create for myself, it works better that way. The reason why I do well in my work is because of the environment I could create around me. That includes my colleagues. Because I'm a freelancer, I could create a safe zone where I can operate. But unpredictability is always there. I can bounce back immediately because of the support I get.

My colleagues probably were also thrown off at first, but that's how they learned how to collaborate and work with a neurodivergent. So, it was as much of a learning curve for me as it was for them.

Many autistics are now starting their own entrepreneurial journey in India. As a neurodivergent, what would you tell the parents on how to mentor their young adults?

Start early. Don't look for a cure. Don't waste time trying to rewire the brain through therapies. It's a clear NO. It's not going to happen. Nurture the strengths, find them, and develop coping mechanisms to mitigate the challenges. Many parents waste a good 10 years just trying to find some kind of cure. And that's a waste of valuable time and resources. They lose a lot of time by which time they're also exhausted financially, mentally, and emotionally - in so many ways.

The formative years are very important. I want parents to be practical. And invest money in the right place to help the child nurture his/her strengths, to be able to survive in this world. This world is not going to change overnight. That's the reality. One can even create small bubbles of safety - safe zones. And within those areas, we can work to our strengths. Today, I am 52. I lost so much time. If a person at 22 is empowered to do the same, just imagine what they can do for themselves.

Advocacy is very important for a neurodivergent to survive as an adult. Many people don't know how to advocate for themselves. And the last thing, self-regulation, whether it is emotional regulation, you need to know how to manage your spoons.

(Joel is a firm believer in the spoon theory, a disability metaphor used to explain the diminished amount of mental and physical energy available for living and productive tasks due to disability or chronic illness. Else, it can lead to burnout, and ultimately might even lead to meltdowns, which is not good at all.)

Awareness building across the board is the key, not just for parents. Don't delay once you have identified the strengths. This is the piece of advice I would like to give the parents.

Could you tell us about the outreach initiatives or more so the highlights of your entrepreneurial career?

I am fortunate to have lived experience, life experience on organizational matters, and a learned experience being a student of social psychology. At 50+, I have enough life experience. Many of the arguments that we make for neurodiversity in our programs, you will not hear anywhere in the world. We do a lot of focused awareness-building in our basic talks. Our work is mostly within organizations. Nonetheless, people do approach us for different initiatives. I also represent the community in public forums. But the idea is awareness building and sensitization across the board. Whoever the group is, whether it's an organization or any other social group, everyone needs to understand that neurodiversity is about more than just being a charity proposition; it's about survival for all of us and not just the neurodivergent population. Our attempts to become like one (monoculture) led to the loss of civilizations and decline of organizational performance. Diversity is what keeps us going, rejuvenated and sustainable. Not only for the safety of neurodivergents, for your own sake, for the future of our species, and our children's future, one needs to make sure that you're invested in our well-being. And we have a lot of theories to support that argument.

Content is key. The content that we have developed, the tools, and the know-how we share; it's at a very different scale. We've worked and collaborated across the globe - in the US, UK, and now in Australia. The reality is that we're all learning from each other's experiences. No one has all the answers. The knowledge is not accumulated in one or two places. It's distributed and evolving constantly. In our workshops, we have developed games; board games, and card games that teach others about neurodiversity, you don't have to learn it as a subject, you can play a game, and you can learn a strategy, how to implement neurodiversity in an organization just by playing board games. In different ways, we have brought forth learning experiences for different groups.

We also do 2-3 free trainings a year, but our bandwidth is also low due to work commitments. One is basic neurodiversity 101. The second one is workplace neuro inclusion. Both are on basics. They act as conversation starters within the organization. And that helps the organization, to test the ground before they talk can actively about it, and even plan for the hiring. It's very wrong for a company to go directly and start hiring people. Because what happens when you hire and you don't have the capacity or the capability to create safe zones for these people? Six months to one year later, they burn out and walk away. This is a reality. And I see that in many companies, they hire 8 or 10 people. No strategy. At the same time, I see other companies, actually spending time on creating that environment, the processes, and the policies, and then doing the thing because it is a top-down model.

As a result, our outreach is directed at helping organizations create systems within their organizations, that will help them create new processes and procedures on their own. We deliver only to clients because most of it is signature content. And cannot be put in the public domain.

Thank you, Joel Godi, for this incredible conversation. It has been super helpful in understanding the dynamics of what goes on at both a personal and organizational level, and in gaining an understanding of supporting neurodivergents.

Thank you.

noreply@blogger.com (viji) — Mon, 03 Apr 2023 05:03:00 +0000

Concluding the series on Curriculums. Bhuvaneshwari and Sharoon Sunny, PhD, are both members of the committee for inclusion and diversity at the Azim Premji Institute. Their research paper is on supporting neurodiverse learners at Universities.

Bhuvaneshwari is a faculty member at the Azim Premji University Her specialties include Learning Disability, Developmental Disabilities, Emergent Literacy, Early Childhood Education.

Sharoon Sunny is a creative researcher, a teacher. Her specialties include English language specialist, communications consultant, curriculum designer, writer, certified counselor.

Here is the interview with them:

1) What is the reason you chose the topic, “Supporting neurodiverse learners in Universities?”

Both Bhuvana and I have an academic and research interest in the area of neurodiversity. Bhuvana is especially interested and trained to support young neurodiverse learners. Our paths crossed at the University since we are both on the committee for inclusion and diversity. While the support and laws are envisioned positively for neurodiverse learners, “there are a few ambiguities about where children with disabilities should study and who should teach them. Gaps remain in the form of appropriate norms and standards applicable to all educational institutions, services provided to CWDs, and the absence of a coordinated authority to enforce the norms and standards”(N for Nose: State of the Education Report for India 2019 : Children with disabilities).

As someone who taught at the college and university for over a decade, I’ve only occasionally encountered students who might have been neurodiverse. I use the word ‘might’ since twenty years ago, testing and advocacy were far and few. Even when students did enter higher education, the policies and guidelines in place were not designed to be inclusive of neurodiverse students.

With increased awareness and mechanisms to support identification, the number identified have gone up, but the corresponding higher educational institutions have not. This is what got us thinking about writing about neurodiversity and how we are trying to build institutional support for students with disabilities.

2) Can you tell us about the sample population for the study? Did the study include the neurodiverse as well? If so, what accommodations were provided?

We did not conduct any study - this was based on our experience working directly with young adults with neurodiversity-- the accommodations provided to these students included major and minor modifications. Some students declare upon entry that they have been assessed for autism or other learning disabilities, so we pair them with instructors who are sensitive to their academic needs and can support their unique learning requirements.

We ensure that all reading materials are made accessible to them via text to speech software and the reading materials are provided to them ahead of time to ensure they have time to read and seek support when they do not fully comprehend class materials. In addition, we also have tutors who provide specific language support tailored to their needs. Students with neurodiversity are also exempt from in-class timed tests. Instead, they are assessed in a stress-free environment in a manner that will elicit not just content level comprehension, but also to gauge if the specific skills that a student needs to acquire has been achieved.

3) In today's society, the relevance of higher education for the neurodiverse is more important than ever. Can you explain this?

Attention to detail, strong memory and recall, creativity, pattern organisation, intense interests are some unique and varied skills that neurodiverse students are capable of. Some neurodiverse individuals, such as those with autism or ADHD, may have a strong attention to detail and the ability to focus intensely on specific tasks or topics. Other neurodiverse individuals may have a strong memory and recall ability, which can be useful in fields such as science, history, or law. In a world where everything is changing very rapidly, it is essential to have people thinking about how to circumvent global challenges differently. By helping students with neurodiversity learn how to harness their existing knowledge and strengths, higher educational institutions can ensure that their voices are added to global conversations on some of the more pressing issues.

4) What are the difficulties faced in transitioning from high school to college?

Transitioning into college is challenging for anyone and more so for students with neurodiversity. This is because they find it difficult to adjust with changes in routine. Most neurodiverse individuals struggle with social interaction and making friends, which make transitioning difficult for them. Executive functioning skills like planning, organization, time management, etc., are also impaired in these individuals, because of which they may be unable to keep up with the coursework. Sensory overload due to crowded classrooms or bright lighting can also contribute to transition issues. Besides these, negative experiences during schooling may have lasting impact on perception of educational experiences, leading to problems in transition into college.

Neurodiverse students are unique in their needs, so if the institution supporting a student accepts them under the assumption that one shoe fits all approach will work, then it is very likely that the student will experience great difficulties. The institution as a whole should be prepared to receive neurodiverse students by preparing ahead to meet their unique individual needs.

5) What are, broadly, the problems that neurodiverse face with higher learning in India?

Neurodiverse individuals may have difficulty with specific academic tasks like reading, writing or math due to their unique style of processing information. This, coupled with their deficits in the areas of executive functioning (things such as difficulty concentrating for long periods of time, difficulty in meeting assigned deadlines, difficulty in working with peer groups on project work etc), and need for sensory stimulation (self-stimulatory behaviours such as flapping hands vigorously or ant other repetitive stereotypic movement, fidgeting with some material, and such) leads to problems in higher learning. Availability of resources in accessible formats, access to resources like sensory tools, assistive technology or therapy services are important for meaningful participation in the academic spaces. It should be noted that academic requirements in college/universities are very different from that of school. For example, written forms of assessment in many degree programmes pose a challenge for students with neurodiversity.

The challenges they face are not only due to functional differences and the kind of accommodations they require, but also due to prejudice towards persons with neurodiversity. This prejudice most often stems from a lack of awareness about neurodiversity among the general population.

noreply@blogger.com (viji) — Wed, 29 Mar 2023 16:45:00 +0000

Mrs.Sridevi Prasad is a Special Educator with over 35 years of experience. She earned her post graduate degree in psychology from Osmania University. Her areas of expertise involve working with diverse students with special needs, including intellectual challenges, autism, emotional disturbances, and learning disabilities. As a special educator, she has guided parents and staff in determining an appropriate education for each student both in regular or special school settings. She has also assisted students in finding support services in order to obtain educational qualifications and gain employment in the community. Mrs. Sridevi Prasad loves to follow-up with her students when they become adults and accentuate their skills in education, vocational careers and prepare them for independent living. Mrs.Prasad has authored many educational programs with the aim of mainstreaming children at different levels of education and skills. She is the founder of Shankar Foundation, enabling 245 children and youngsters to reach their full potential.

In this curriculum series, we will concentrate on SMART (Sensory motor and remedial teaching), a curriculum developed by her. Here is the interview.

1. Could you tell us about SMART?

SMART (Sensory Motor And Remedial Teaching) is a concept developed after observing occupational therapists working with children who have a variety of sensory issues.We have a unit called Saaburi that functions as a multidisciplinary clinic. I realised that professionals from various disciplines all work in different areas. Why not integrate all the areas and develop a curriculum?

Suppose you want to teach a child the colour concept. The special educator is working on colours. Colors can also be worked on by speech and occupational therapists using various modalities. For example, if the special educator is working with the colour Red, the OT can work with blocks of red colour. We also have our own sensory motor assessment and a checklist to serve as a guide. This is happening concurrently, so we can assess their processing capabilities.

Similarly olfactory-gustatory, proprioceptor, interoception skills everything will revolve around a single topic: colour. We realised working on these lines yielded fantastic results. The child is having a good time learning.

Interoception skills are a new addition. So, if you are angry, we work on showing a red colour card with an angry face, or a yellow card with a happy face if they are happy. Then we go on to talk about strategies, such as what you would do if you were angry. How can you calm yourself? It is a beautifully connected program. We can call it a remedial support for therapeutic interventions.

2. What age group do you begin with this program?

We work with the SMART program for children in the age group 4-12 years.

3. How were you able to integrate during covid time when access to OT and ST was not possible?

The special educator took on the additional responsibilities. In fact, we now only do special education and collaborate with other therapists working elsewhere. We are comfortable sharing our program, which has made it accessible to more professionals. As a result, we've formed alliances to coordinate the programme. We have also been able to introduce this in regular schools that practise inclusion and have SMART classrooms.

Our assessment helps us find the weak links in the child’s processing capabilities and we target that. We do it in a play way. We attempt to overcome the challenges in order to help the child process better. For instance, if one looks only at visual perception skills, we can broadly classify it into 8 areas. The ability to distinguish between different shapes, colours, sizes, and other visual characteristics.

Visual : closure, discrimination, perception, spatial, memory, sequential memory, figure ground, form.

Auditory: discrimination, memory sequential memory, analysis, synthesis, foreground and background.

Tactile: Mehano receptors, Thermo receptors and pain receptors.

Auditory and gustatory: identification, perception, memory.

Vestibular: gaze, posture, spatial and alertness.

Proprioception: position, movement, force, velocity.

In the future, these serve as the foundation for many tasks, including reading, writing, and visual problem-solving, and can be evaluated and developed using a variety of methods.

Usually, in therapeutic interventions, there is no joy at the child’s end. Here it is interactive, and the child is learning. Assume the following instruction is given: "Come and place the block here." It is a passive learning method. These interactive concept oriented activities enable children to consciously participate and learn easily. It is an interactive learning, while their specific therapeutic needs are addressed. This approach helped many to move forward from concepts to academics. It also helps to mainstream them at a young age as basic skills have been worked on. This approach has helped many children to graduate to recognized certification courses. Initially, their abilities were deemed unsuitable for academic achievement.

As they say “Seeing is Believing”. We started with colors, but moved on to shapes, sizes, body parts, alphabets, numbers, mathematics, but the process is the same. . We took upon it a challenge to see how far we can go. This year, we have integrated 4 of our students into mainstream schools. The assurance we give the schools is we will work along with you and do the required hand holding for a period. As the child gets more capable, we withdraw our support. It is a very smooth transition, as we have given a strong foundation and the teacher in a mainstream class finds it easy.

SMART works best at the primary level. As I said earlier, we are willing to share, how the resource rooms are modelled to create a happy learning environment for the child matters. To teach colour alone, we have made 375 cards.

4. Do you have any curriculums for the older students?

If the child has completed SMART, his sensory system is tuned to handle greater challenges, and he/she is ready to begin academics. I am not saying every child who has done SMART will join a mainstream school. Society has not opened up so much. So children do come back to us. We have an OBE program under NIOS and we prepare them for that.

Once the SMART is done, we look for inclusive set ups. If the child remains with us, we slowly tune him/ her towards Open Basic Education. As an accredited school, we adapted the curriculum to create a life skills-oriented programme with strong literacy skills in order to pass the National Open Schooling's secondary and senior secondary exams. It is helping children to read, write, and calculate. Children are writing their 3rd, 5th, 8th,10th and 12 th class examinations and getting certified.

In Hyderabad alone, 5 schools have signed up for the SMART program. That helps in an easy transition.

5. You mentioned that you have been in the field for 39 years and have witnessed many changes. What would you choose if you had to pick just a few?

I have seen so many. We used to do home visits, seen children being constrained in a room in their houses. We used to beg parents to send them to schools. Slowly parents agreed to sending them to special schools. Then vocation happened, sports activities. Now we are trying to mainstream our children.

We started the Sankar foundation, 23 years back. I started with a curriculum to help the academically oriented special needs children. When I started, people used to laugh at me. Again, people in society, and even professionals, differ when it comes to teaching academics to them. The majority of them used to say that if a child can write his or her name, the address, it would be their highest academic achievement.Today, I can proudly say that our curriculum( A- H Levels) helped many students to complete certified educational levels. We made computer education also as a subject.

The happiest news is now my children are working with decent salaries at big multinational companies like Wells Fargo, S & P Global, Tata Advanced Systems. Academic achievement, in my experience, significantly boosts their self-esteem. The way they communicate, introduce themselves, conduct themselves changes.

Academics we start with phonics,short vowels, diphthongs, and comprehension. We have lots of groups and the training is child specific. We have made curriculums from level A- level H. Level H is class 9.

6. What is the curriculum for vocational training?

Once we identify the child’s academic limitations in the journey, we slowly introduce skill oriented training. We teach the basic skills, prevocational skills, task oriented skills though lot of task boxes. It helps the youngsters to transform and adopt work oriented skills. Today, our vocational products are much in demand by the brand name S Crafts.

I have to mention that some mothers from our organization have taken up the beautiful step of creating working and earning platforms from within fo our students. They created an organic goods packing unit. They are involved in making organic cold press oil, and managing the shop. Ten of our children, have gained employment in this process. Partnering with parents in creating in house employment is our biggest strength .

This is a synopsis of our programs. And the progress we have achieved over the years with our students.

Saaburi–Smart Program–(4-10 age group) 43 children trained–17 main

streamed–21 enrolled in OBE

Shraddha–Academic Program–(10–20 age group) 249 children taught–56

main streamed–24 are into open employment

Samardh–Skill development–(16- 25 age group)- 183 youngsters trained–47

are earning–15 establish on own set ups -

Saakaar–Computers training–(16- 25age group) - 75 are CSI certified–28 are

Data entry operators–2 are employed in Wells Fargo, 4 in S& P Global–3 into employability

training

Sannidhi–assisted living Program- residential–79 students trained - (18 to 54

age group) 19 sheltered employment –

Swanthana -Independent living program 30 Students trained–(20 to 35 years )

12 employed at Tata Advanced Systems.

We have received no government or agency funding. Our biggest strength has been the rock solid support of both parents and professionals. We are now building a parents' community around the residential centre.

It is an impressive figure that you have shared with us. Thank you, Sridevi mam, for taking time out of your hectic schedule, and doing this interview.

noreply@blogger.com (viji) — Fri, 24 Mar 2023 04:46:00 +0000

The Interview with Dr. Gayathri Narasimhan, founder-director of Prakramika Institiute.

1. How did INVAS happen? And why did you think a curriculum was necessary?

A journalist and a software professional, I transitioned into special education space. An incident that occurred during the covid period was the catalyst for the birth of INVAS. It was during this challenging time, one of my friends moved from Muscat to India. She had two children, one neurotypical and the other neurodivergent. The neurotypical could get admission in a school fairly easily, but the neurodivergent had to face many challenges because he had nothing to show on his progress report, like the skills developed or the vocations learnt. Even though he was highly capable, he struggled to get admission. The same happened to another student, too. This incident sowed the idea of the necessity of curriculums and yardsticks.

Covid period gave me the space to work on building the skills of neurodivergent that would fetch them suitable employment. We developed a curriculum for front office work with more of practical components and less of theory. We started with a batch of 14 students and 5-6 of them got placements. That was a huge morale booster. We started with one curriculum in 2021, then five, and now we have 22 modules. The skill courses were a huge success where we saw the people with special needs unveil their potentials. But again, we faced one challenging incident. One of the professional whom we had placed lost his job because of behavioural issues. Again, that got me rethinking, because skills set alone will not ensure employment. There was a need to work on listing the parameters that we need to consider ensuring employability, as that is our final goal? For a neurodiverse, there are no benchmarks to say these are his/her capabilities.

I have a habit of putting pen to paper and recording everything I do, not just the curriculum, be it the challenges, the work I do with children, or my interactions with society. I record every step I take. It can be a challenging case, counselling or a success stories. At least once a week, I document my work mostly on Sunday. In my family, be it a small or big, documenting our work is a habit.

I pulled out all my compiled material over the years. Discussed it with my mentors, colleagues, and many parents who are facing the brunt of it. The parents' inputs are invaluable, because they are our most significant stakeholders facing the everyday challenges. The curriculum required a comprehensive and individualised approach that considers each student's unique needs and abilities. We did multiple revisions, amendments to get to this point. Then the structure came into place, followed by an evaluation criterion. We built this curriculum taking into consideration many case studies.

Again, neurodiversity is a huge umbrella, complex with varied needs. But, as a teacher, I can only be honest if I can track progress. There is no accountability on my part if I cannot measure progress. Or let's say, I have not challenged myself enough as a teacher. INVAS came into the picture then. It is a curriculum for vocational training for people with special needs. Still, we have a long way to go because we will continue to make changes as things progress; in order to stay updated and incorporate our learning professionally. This is more like a beginning.

2. You mentioned 22 curriculums. Can you pick one curriculum and explain the process for us? How have you structured it?

Foremost, we shortlisted a list of jobs that our students can take up and do in a corporate environment. Once we had narrowed down the choices; it enabled us to work on the curriculum. I shall pick the front office curriculum, as this is our fifth batch. We have students on the spectrum availing this course. The way we structure our training makes all the difference.

We eliminated the theory part to the maximum. We focus on the practical aspects. If I am teaching this module to a new admission, who has no prior knowledge, the first few classes we take to understand the strength and the needs of the student. While teaching the skill, for example: we consider what is the core responsibility of a person handling bookings at a front office desk? We teach the skills using pictures and role plays. The same techniques works for room service. We group them into small teams and conduct role plays. This practice gave them the understanding of the real work. Most of the neurodivergent are good at concrete learning than abstract learning.

In the role play, the trainees function as a team and we have a lot of activities centred around the team. There are multiple challenges here, some are minimally verbal, some have behavioural issues, and so we keep the group size small, a maximum of 4 members. We give them individual roles. One person starts the meeting. They even record the minutes of the meeting. Who attended, didn't attend, why they didn't come, what did they do in the meeting? This has helped us blend soft skills also into this training. Now, if I talk about designing, it is again a practical approach. So we teach them how to design a flyer, brochure, or to create an eBook. We also teach them animation and how to do a video editing. Respecting the privacy of students, we do not record our regular classes. For designing and Ms office, the data entry module, the teachers, do the recording and share with the students in our WhatsApp study groups. The students then practices, and we clarify their doubts. To test the understanding level, we also have a process called live activity. We ask the students to complete the task within the class hours and share their work before the end of the class. For example, if they have to design a certificate for a corporate office, we will give the following inputs: the name of the corporate, their logo, and the occasion for which the certificate is being distributed. The signing authority name, the signature. With the inputs, they must design a certificate. Certificates are one of the basic things they do.

Online was a challenge as the professional is not sitting next to the trainee to guide, but we managed with the support of the parents. They were highly cooperative at every stage. They were also a part of role play or live activity to facilitate the understanding and ensure the students are relaxed during the whole process of learning.

Documentation and training go hand in hand. This also helps us build our own metrics, on feasibility, progress, end goals. PVI also conduct training programs for schools to enable successful inclusion programs, for special schools and vocational institutions to have a structured framework. We conduct these services either online or we travel to their place and provide the services. We have conducted such programs in cities like Chennai, Kerala, Lucknow, Mumbai.

3. What is your IEP process?

We have IEPs for every child. The students can choose any two modules from among the 22 modules. We do provide one on one counselling to guide them in choosing the right curriculum.

4. How will you accommodate a student who has high support needs to one with a low support needs, on a graphic design curriculum?

We designed the curriculum in such a way it supports both students with high support needs and low support needs. The planning of the activities is done based on their strengths. We choose activities that provide an optimal level of challenge to the trainee. We guide the students to choose the right type of activity based on their strength.

For a low support student, he may have to incorporate 15 elements in his graphic design work, a person with high support needs might incorporate 3 elements in his work. Elements are the relevant designs that are used to enhance the message in the design work. For example, a flyer speaking about dental awareness will have elements like a tooth, brush, or related pictures. When we are teaching typing for a child with CP, we take into consideration the limitations of the child and make suitable accommodations. The child might use a single finger, so we teach him how best he can type with his limitations. Or a nonverbal person is in room service, then we provide communication cards to engage with the customer. For those who are non-verbal, we substitute the communication with message cards/NIM (Neurological Impress method) . We teach them how to use the appropriate communication card for the task at hand. We teach the professionals to understand the message and reply appropriately using the cards.

5. But what if a situation arises in room services that goes beyond the scope of the communication cards?

If they are unable to answer, then we teach them to use the card which mentions that they would get back soon. At any point in time, we teach them to handle even the crisis during communication. We keep our role plays challenging, so in such situations they know how to respond. They learn with practice. Sometimes our students fall sick during such activities. In such cases, we have trainees who take on the responsibilities of the absentee. These are all real-life scenarios. What do we do when a person is on leave? Who takes their role? During the role plays, we teach them crisis management and leadership activities. Some are very good at handling the crisis, but some of them take more time as they find it hard to switch between duties. Eventually, they pick up.

6. Moving on to the employability aspect, how have the placements gone?

Frankly‌, there is still a lot of work to be done in this area. We train students with the sole goal of finding them suitable employment.Training necessitates a significant amount of effort, and if we do not achieve the desired outcome, the effort is pointless. I am looking at multiple avenues: sheltered workshops, collaborations from corporates, requisites from employers or NGOs. I would also like to encourage them on their own entrepreneurial journeys, as they are their own bosses then. With WFH, again, they miss out on the social aspects of living; they miss the communication, mutual learning, leadership qualities, etc. The best way of employment is they need to step out, work and learn from each other in a safe environment. Or else, they are just sitting in front of their computers in the confines of their homes.

7. How do you envisage a transition from PVI to an office space?

This is one reason we have started our own office space, EmpACT. My daughters, Mrs. Akshaya Lalith Soundar founder of Emplusive training center and EmpACT and Ms. Akhila Narasimhan founder of Muditha Kreative Studio are the driving force in this project. Here, we treat our trainees like employees. Right from their dress code to communication, everything needs to be professional. Their leave have been fixed. They need to send a formal mail for every communication. WhatsApp is discouraged, at this stage. Discipline at the workplace is given top priority, as our focus is to integrate them into the corporates.

This is the path the trainees take here. Training-Empact-Placement. We divide the training into two categories: skill-based training and other training . We have categorised the training into skill based or vocational training. Skill based is academic oriented which means professionals with basic academic knowledge with respect to reading and writing can do these courses. Vocational training is mostly for non-academics where the learning is more of repetitive work. That includes some functional academics, communication, and so on. Suppose the candidate is not into reading and writing? Does that mean he will end up making paper bags all his life? No! We could introduce academics from a different angle. We must develop a curriculum that is need based. For example: What would be the core area of his work? If we taught him screen printing, what are the communication and computer skills required? What behaviours need to be addressed? Behaviours have a huge role in choosing a vocation. We have a trainee with down syndrome who has excellent working skills but the moment we switch the activity to pottery wheel, he would start vomiting. He has an issue with texture. So, the moment I see such a response; I need to switch his vocation. Vocations like Fretwork are safe and the trainees can use the machine under supervision. With fretwork, we make wood based teaching aids that schools can use. We also train our non-academic trainees in library jobs, for schools. These are relatively safe places to work.

Basically, vocations or skill-based training require a 360 degrees approach. Normally, this holistic approach enables them to be successful in their workplace. We have our own assessment tool developed at PVI, with this purpose in mind. We have published it in my book, INVAS, where we have mentioned 13 different topics need to be covered for every vocation, including ADL. We have divided the topics into 5 stages right from early childhood to profession. This helps in the evaluation of the skills learnt for every topic at every stage. For example, a student’s actual age can be 14 years, but in communication he can be 12, in self advocacy he can be 14 or in ADL he can be 10 years. This evaluation helps the teachers and parents to focus on the area that requires more training.

8. Another thing you emphasize is on self-advocacy?

Yes, very much. Trainees are sometimes mistreated at work. For example, they are overburdened with the work of others. They must then learn to say no. They must object to the mistreatments and in order to object, they must first understand what mistreatment is. We have seen various cases where our trainess have been bullied and abused at workplace. They must be taught to stand up for themselves. Once a student of mine came up with a thought that he wishes to become a public speaker. He wanted to learn the art of speaking. This was to bring an awareness about special needs among the community. We appreciated and welcomed this idea and now we have introduced a module called public speaking where professionals are given training to talk the right way in any of the language they choose.

At PVI we always give preference to the suggestions given by our students and parents as they are the foremost stake holders. Their suggestions have helped us widen the scope of our training programs and also to reach out to the masses. We refer to ourselves as the PVI family because no one is judged and everyone has the right to share within the parameters of the protocols and procedures.

Thank you, Dr, Gayathri Narasimhan, for taking the time out to do this interview.

noreply@blogger.com (viji) — Wed, 22 Mar 2023 01:29:00 +0000

Starting a new series on curriculums.

Curriculums for special needs may include specific learning objectives, instructional strategies, and assessment methods that are tailored to the unique needs of each student. They may also incorporate specialized materials, technologies, and teaching approaches that are designed to support students with various disabilities or learning challenges.

The need to have a structured approach, and a universal design that sets a benchmark to adhere to got me thinking to begin this series. What factors help in enabling employabilty?

Kick starting this series is Dr. Gayatri Narasimhan. Dr. Gayatri Narasimhan is the Founder Director of Prakramika Institute. A crusader for Inclusive Education, She is the author of INVAS. A recipient of IAF woman of Excellence, AKS Global Principals, Golden Book awards, she is also a certified POSH–IC professional. INVAS is a structured curiculum for people with special needs , more so with trainees who can gain employability with vocational training.

noreply@blogger.com (viji) — Mon, 13 Mar 2023 04:26:00 +0000

Concluding this series on #NurturingSkills which spoke about

1.Building mindset skills

2.Theatre 

3.Story telling. 

Sharing the links to the individual posts:

 Alisha Mills : https://care4autism.blogspot.com/.../empowering-through...

Prof. Dasaratha Rama :

https://care4autism.blogspot.com/.../2-in-conversation...

Padma Ramani:

https://care4autism.blogspot.com/2023/02/storytelling.html

Mini Dwivedi Gopinathan:

https://care4autism.blogspot.com/2023/03/1.html