Her anxiety rocketed and she became difficult to manage but fortunately we were able to distract her with music from her ipod but even with that my daughter remained solemn and disengaged throughout the whole show.  I realised that I had made a big error in taking her and that I had made an even bigger error assuming that because she has a milder form of autism that she would cope with going to the theatre.  I felt terrible that  I dragged her through such an ordeal and I vowed I would not repeat that experience again unless she expressed a real desire to  go.  Not surprisingly she hasn’t shown any interest since and like her brother prefers to stay at home.

But now efforts are being made to make the cinema and theatre more accessible for autistic people.  Autism-friendly film screenings and relaxed performances of  theatre productions promise to be sensory sensitive and tolerant towards those with autism.  It sounds fantastic and I would love for my children to give it a go but they won’t.  They adamantly refuse to try it.  In part I think their earlier experiences have put them off but I also think that the real barrier to them going is other people.  Whatever sensory modifications are done my children cannot cope with other people being near to them and they can’t cope with the noise that other human beings make.  I know this to be true because during a visit to one of our favourite burger places recently I asked my son if the background music was a problem for him.  He replied “no, its other people”.  I looked around.  There weren’t many people in the restaurant (I always try to pick a quiet time) but what few people there were was enough to unsettle him and put him off his food.  If that trip to the restaurant was difficult enough, can you imagine how hard it must be for him and his sister to visit a busy cinema or theatre?

It seems to me that no matter how hard people try to make the cinema or theatre autism friendly they can never be entirely inclusive.  If anything, autism-friendly screenings and relaxed theatre performances are likely to be even more difficult for some people as it is accepted that during these shows people should be free to move around and express themselves.  Unfortunately my children can’t deal with unpredictable or noisy behaviour; they become irritated and angry if people invade their personal space which is probably why an autism-friendly environment is anything but autism friendly for my children.

This is not a criticism against other autistic individuals and neither is it a criticism against those who work to make such venues inclusive.   Indeed, I believe if autistic people want to visit the cinema or theatre then they should be able to do so, free from sensory pain and judgement from others.  However, I do want people to appreciate that these special performances do not include everyone with an autism spectrum disorder.  No matter how many adaptations are made, cinemas and theatres can be crowded spaces that are very hard for people like my children to deal with.  Maybe in time they will learn to cope but in the meantime they are happiest staying at home and watching a film on their own and in the dark.

Nevertheless I can’t help but question what we hope to achieve by having separate autism-friendly and ordinary mainstream shows because in my experience families like mine don’t fit into either category.  Surely if we improved cinemas and theatres and made them more tolerant places to start with then children like mine may be able to access these places.  As it is these venues (particularly the cinema) are becoming increasingly unpleasant even for neurotypical people like myself.  The excessive adverts and trailers, the loud volume of films, the noise of people unwrapping sweets, chomping on popcorn and slurping through straws - it’s not a great experience and not something I want to spend my money on anymore.  I am happier staying at home just like my children but the point is if we made cinemas and theatres a better experience for everyone then perhaps we wouldn’t have the need to segregate.

Lack of ambition?  Maybe for some women there is a lack of ambition to reach the top but maybe there are other barriers that make it impossible to reach the top too.  Dare I mention lack of (or unaffordable) childcare and partners who won’t pull their weight at home?  You know someone has to look after the baby and run the home and if the partner doesn’t do it, then who will?  It’s all very well blaming women but men should also shoulder some responsibility for the under-representation of women in public life and I don’t just mean inequality at home either.  Boardrooms are notoriously male and, in my experience, they can be aggressive and intimidating places full of testosterone fuelled egos.  I know I’ve experienced it when I worked as a PA and I didn’t like it.  It put me off developing a business career because I hated the way people behaved (think apprentice and you get a measure of some of these people).  You may argue that I wasn’t ambitious enough to tolerate such behaviour but maybe as a woman I naturally didn’t want to behave like this.  I err towards the latter.

However, it doesn’t mean I’m not ambitious.  My ambition didn’t end when I left work to have a family; it took on a new dimension as I refocused my energies on my family.  You see I am ambitious for my children, not in the pushy parent sort of way, but in wanting my children to develop into confident and thoughtful young people.  I want them to learn about themselves, to discover their talents and to feel confident and valued for who they are.  I want them to learn about the world they live in; to show respect for other human beings and the natural environment that surrounds them.

It sounds corny perhaps but raising a healthy and happy family requires immense work and dedication, something that I personally would struggle to do if I was to pursue a full time career.  That is my choice of course and I am in no way knocking those of you who combine both but please don’t knock me for focusing my ambitions on my family.  My children need me to be ambitious for them.  They need me to fight the system and to get the very best for them and that, as many special needs parents will testify, requires huge amounts of determination and time.

So it annoys me reading this article.  It assumes that ambition is lacking amongst women who don’t aspire for high flying jobs and it also assumes that success is an attribute only given to those women who succeed in such roles.  This is so wrong because ambitious and successful women can be found in all walks of life whether it’s the mother who cares for her family, the young woman who looks after abandoned animals or the elderly lady who works in a charity shop.  I could go on and no doubt you have your own examples of aspiring women (please share if you do) but the point is that ambition isn’t just about making money and aiming for the FTSE 100.

I’ve been  fighting for my children for what feels like an eternity.  In truth its only been
twelve years but that’s a long time and its eaten into my life to such a degree that I no longer feel like the person I once was.  Perhaps that is a natural aspect of motherhood; people to look after and a new  set of priorities which is bound to change me and my perspective on life.  Nevertheless the ridiculous fight I have had to endure as a result of having special needs children has left me running on empty.

The number of hurdles we have had to overcome (and still to overcome) is mind-boggling crazy.  We seem to lurch from one thing to another.  Only recently another crisis happened with regards to my son’s school transport and I’ve had to write a letter of complaint to the local authority about the distress caused to our family.  For those of you who don’t know what happened, my car broke down and I had no means of collecting my son from school.  The school is in the sticks, at least a 30 minute drive away so I can’t even slip on my trainers and do a hearty walk to pick him up.  I am reliant on wheels to get him there and back and of course when one set of wheels fails you have to look for another.  As a result I asked his school if he could come back on the transport that my council provides for local children who attend the school.  They said yes, the taxi company said yes and I felt relieved that everything would be OK.  However, when the time came the taxi driver adamantly refused to take my son home as he was “not on the list”.  They left him standing there while they tootled out of the school grounds.  Fortunately the school looked after him and organised alternative transport but it took another two hours before he returned home.  By then he was tired and stressed and angry that he had been dumped by our council.  I was too.

As I’ve said I’ve written a letter in the hope that the authority can examine what happened but frankly I’m sceptical anything will be done.  In my heart of hearts I know that my words will have little impact with the bureaucrats.  They will look down on me as ‘just a mother’ and they will defend their sloppiness as they usually do, more interested in their jobs and budgets than the families they are supposed to support.  They don’t really care about us.  They may pretend that they do when they implement the latest gimmick, the soft stuff as I call it, but at the coal face of special needs parenting it doesn’t equate into anything tangible.  Our lives are still challenging and exhausting.  We still have to fight for a diagnosis, for a statement, for a school place, for health care even and as for respite – does that exist?

And so it is that I’ve had enough of this SEN and disability stuff.  I don’t want to fight
anymore.  I want to live an ordinary life, well as ordinary as it can be with two special needs kids, but the reality is that there are more challenges ahead.  My son is on the brink of another major transition in his life – post 16, words that are soon going to dominate my thoughts as we decide what the hell to do.  You see we have only just managed to help him return to school after a gruelling period of rehabilitation that has left me feeling worn out.  And now, no sooner has he got back to the classroom that we have to think where he should go in eighteen months time.  It worries me because we are not ready for this; my son is not ready for this.  We need a period of stability and calm and a chance for my son to continue to rebuild his fragile confidence.

Unfortunately we are stuck in a system that is regimented and inflexible, a system that tells us our son should move into post-16 provision because that’s what you do when you’re 16.  The inclusion guy whom I chatted to in another meeting about my daughter’s education (another looming crisis) said they like to bring them back to town, meaning the kids that are schooled out of borough are educated in borough once they reach 16.  My first response on hearing this was where?  There is nowhere for people like my son to go, unless he thinks that my son is up to managing the massive college complex that resides at the edge of town.  Perhaps somewhere within this modern, light filled and angled structure is a quiet place that can accommodate my son.  I doubt it.   My instinct tells me my son is not (and may never be) ready for this.  My instinct tells me that the council’s priorities will be to minimise cost.  I sense another battle ahead.

Pathological Demand Avoidance or PDA for short is a lifelong disability that is increasingly seen as part of the autism spectrum.  The main characteristic of PDA is an obsessive avoidance of everyday demands due to high anxiety levels and the need to be in control but there are other symptoms.  These are summarised by The National Autistic Society as follows:-

It was the issue of  control and fantasising that drew me to learning more about PDA as my son has particular difficulties with these things.  My son can become so anxious that he is unable to cope with demands from other people, notably us.  If told to do something he can become aggressive to the point that he is close to meltdown.  He also regularly escapes into a fantasy world where he takes on a particular cartoon character and where conversation is dominated by the world this character lives in.   Whilst I sometimes worry that he loses touch with the world around him, it is less of a problem compared to the behaviour brought on by his need to control.

However, we have found that he rarely behaves like this at school (he has learnt to mask his difficulties whilst there) and so it’s hard getting people to recognise these aspects of his behaviour.  Whilst school recognise his autism and anxiety, they don’t have much of an idea of how controlling he can be at home.  This was particularly a problem when he was school refusing because many people thought it was simply a case of telling him to go to school.  The situation was much more complex than this of course and as I have written on here many a time it was a case of gradually exposing my son to his anxiety and empowering him  to make the decision to go back to school.

Whilst there is no question that my son has an autism spectrum disorder I have often felt that I haven’t received an adequate explanation for his controlling behaviour.  Whilst the diagnosis of an anxiety disorder may explain his anxiety issues, I never felt it explained his demand avoidance which got so bad at one point that we became wary of asking him to do anything!  Instead I was often made to feel by professionals that it was my parenting at fault; that somehow I was a weak mother who had allowed my son to trample all over me!

The reality is that we have had some very tough times as a family but slowly we have turned things round.  Learning about PDA and some of the techniques used to manage demand avoidance has given me the confidence to negotiate with my son but it is far from straightforward.  Whilst my son needs routine (without it he becomes even more anxious) I also have to be creative when dealing with his refusal to comply.  Simply telling him to do something doesn’t work and I have to resort to different techniques to motivate him which varies from day to day depending upon his level of anxiety and how his autism is affecting him.

One of the more successful techniques is negotiation and this often takes the form of guided choice ie I give my son two or three things to choose from.  This has worked well as it has enabled our son to feel in control and for us to achieve a particular outcome.  I have also tried to adjust my behaviour so that I don’t come across too demanding because I know my son will pick up on this and feel under a lot of pressure as a result.  This isn’t to say I don’t set boundaries though.  I do but I try and establish boundaries through explanation and/or negotiation rather than “you must do as I say” for example.  However, it is not easy.  There are days when the slightest demand will create a backlash and then there are the days when our son is unable to interact with us.  These are the days when I simply back off and let him unwind.  Any more pressure will simply overwhelm him to the point of meltdown.

As to whether my son has  PDA I can not say because people with an autism spectrum disorder can also have demand avoidance issues as well.  Nevertheless learning about PDA has enabled me to acquire a new set of skills which I may not have acquired if I had just focused on the strategies for autism.

However, challenges remain in that professionals who come into contact with my son don’t understand what lies behind his controlling behaviour and often there is a sense that they are blaming him for having a character flaw.  This upsets me a lot.  There is nothing worse than hearing your child being coldly described as manipulative and controlling.  Understanding what lies behind these behaviours is so important because once you see that it is anxiety that is driving the behaviour then you can become more sympathetic and adopt the right approach.

This is why I urge professionals (particularly teachers and teaching assistants) to learn more about PDA as well as autism because it is likely that they will meet children with some degree of PDA.  For parents who also have children with some or all of the symptoms  of PDA, I would also encourage you to read up on PDA and explore some of the strategies that PDA parents use.  As I have found, it is reassuring to know you are not alone dealing with this sort of challenging behaviour and that there are some effective strategies out there.

For further reading try these resources:-

Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals – this book was recommended to me be another autism parent and I wasn’t disappointed.  The book offers a complete overview of Pathological Demand Avoidance Syndrome (PDA) and provides practical advice for overcoming the difficulties experienced at different stages of a child’s life and into adolescence and adulthood.  Case studies are used throughout the book and there is also a list of resources for further information and advice.  Essential read for anyone caring for and working with children with PDA, autism or other behaviour issues that do not respond to ordinary parenting techniques.

Cerebra – what is pathological demand avoidance (PDF) – http://www.cerebra.org.uk/SiteCollectionDocuments/PDA.pdf

NAS – PDA, Pathological Demand Avoidance

The PDA Contact Group - advice and information for those living and working with a child or adult with PDA.

The PDA Resource – an excellent list of resources on PDA that is really worth checking out.  Lots on here for everyone.

And I have been proven right.  With lots of support we have helped our son take those first intrepid steps into the school grounds and from there into the school building and then into lessons.  It was hard work as it meant us going over and over each stage until he was confident enough to move on to the next stage.  And so it went on, months and months of  building up his confidence until he suddenly declared that he “loved his school” and could he do “more lessons please”.

To hear these words was amazing.  It was the breakthrough we were waiting for because it showed us that he was feeling happy, confident and in control.  It has also meant that I’ve been able to take a step back.  For the last six months or so I’ve spent large chunks of time in school whilst my son sat in class.  I was happy to do this because I knew my son was less anxious knowing I wasn’t very far away but I still hoped that one day he would manage without me.  Even though my son has an autism spectrum disorder, I still have to work towards him becoming an independent adult so stepping away from his school life became an important aim of mine.  Now that moment has arrived and I’m just like any other mum taking her child to and from school.  It really is fabulous.  Watching my son enjoy going to school is not something I ever thought I would see again.

I can understand this.  I think no matter how well meaning someone may be, saying sorry can imply that autism is a bad thing to have.  Of course, that depends on the severity of the autism.  Some people can lead  full and purposeful lives (not without difficulty of course) but for others it is a very disabling condition.  In these circumstances, expressing sympathy to a family can be an attempt to offer support and friendship.  It is rarely meant with malice though I can understand the unintended consequences at the use of such clumsy language.

However, the fact is that many parents go through an emotional period following their child’s diagnosis.  I know I did.  The realisation that my children had a lifelong condition led me to experience a wave of emotions  as I adjusted to their diagnoses.  You can read more about it here but essentially it was a time of letting go of my expectations of family life and embrace a whole new way of thinking and doing.  It took a while to adjust but eventually I came to see what a wonderful family I had.

Nevertheless back then (5 years ago now) I did not expect to feel the way I did and neither was I prepared for it.  Disability was not something I was familiar with.  Except for my grandmother who suffered from alzheimers and my near life-changing car accident I knew little about disability.  At the time disability was something that happened to someone else, notably an older someone else.  It couldn’t possibly happen to us, right?  Wrong, it did and when it happened I felt a sense of shock and sadness as  I grappled with what it meant for my children.

I know a lot of people doubt that SEN parents can experience any sort of loss but this was how I felt, a very real experience that some say is akin to grief.  It may sound strange to non-parents but the bond between parent and child is so entwined that whatever happens to our children we feel very acutely too.  We love our children unconditionally and we want the best for them and we aspire for the best for them and when things happen that challenge those dreams we can sometimes feel a sense of loss.  It’s the way it is; it is not a slur on autism or  autistic people but a way of adjusting to a different life.

For me acknowledging my feelings has helped me to move to a better place when I can truly say “do you know what, this life I have been given is so much better than the one I dreamt of”.  I have come to accept my children for who they are, not what I hoped they would be and in doing so I have learnt so much about the wonders of ASD.

Not surprisingly, there continues to be massive criticism about the way the academy is behaving.  What was considered to be a fair admissions policy that served the local community is now in danger of becoming one that is influenced by religion.  Indeed concerns have been raised that if pupils living further away from the academy get priority over those living closer because they attend a CoE school then that might constitute discrimination under the Equality Act.

However, all is not lost.  The organisers of the local campaign group are taking the matter further and will be appealing to the Office of the Schools Adjudicator.  I will let you know the outcome as I feel it is important that as parents we are aware of the power of academies and what we can do if they step out of line.

When I read blogs I look for a quick read, something to do during a coffee break or lunch hour, something that is informative, opinionated or tells a short story.  What I don’t want to read is a lengthy description about what something looks like or how someone feels.  I don’t want lots of dialogue either.  I don’t have the time.  Neither do I look for a big audience around a blog to pull me in.  It doesn’t bother me if a lot of people don’t comment on an article; to me this isn’t necessarily a bad reflection on the blogger or their writing.  It may simply be due to the author not promoting their blog enough.

The big turn off for me is long posts.  If I come across a blog that is too long (for me, usually over 1500 words) it doesn’t matter how well written it may be, I switch off because I simply don’t have the time to read it.  For me reading blogs is akin to reading newspapers and magazines when information and opinion is more important than description and dialogue.  That is best kept for a novel in which I can give time to sink into a storyline and live it for a while.  Books are my emotional escape, blogs are my source of information and a place to discuss things.  There’s a difference which doesn’t mean to say one is more superior than the other.  They’re just different.

What about you?  What you do look for in blogs?

Bullying is a subject close to my heart.  My son was badly bullied a few years ago by a crowd of young people who lived down our road.  It was an awful experience for him and for us and not one I wish on anyone.  You can read more about our experience here.

Unfortunately bullying is commonplace in our society, whether at school, in our communities, online or in the workplace.  Bullying can happen to anyone, anywhere and at any time but unfortunately it is a particular problem experienced by people on the autism spectrum.

Kevin Healey who is on the autism spectrum knows only too well what bullying is like.  He has been bullied as a child, teenager and now as an adult.  More recently he has been the target of cyber bullying and death threats.  As Kevin writes in this article, things became so serious that he couldn’t leave his house for three months and he was forced to get help from the police and a solicitor.  Fortunately he has found a way of dealing with the trolls and has now moved on from those dark days to continue to campaign for the rights of adults on the autism spectrum.  Indeed such is his success as a campaigner that he has won various awards including Charity Champion of the year 2007 and Stoke on Trent Citizen of the year 2006.

More recently he has set up an anti bullying autism campaign which aims to change the law on bullying whether it’s bullying in the workplace, university or online.  I am pleased to support Kevin’s campaign.  Our children are only children for a short while; they will soon become adults with autism and who will be there to protect them when we’re not around?  This is why it’s imperative that we shout out about the bullying of autistic people and work towards getting laws passed that will protect these people from cruel and inhuman treatment.

But to do that we all need to support  Kevin’s campaign and there are many ways we can do that.  We can:-

1. Sign the petition on twitter: http://twitition.com/x76kf/

2. Use hashtags in our tweets #kevsautismcampaign #antiautismbullying #autismbullying

3. Follow the live tweets on http://twubs.com/kevsautismcampaign

You can also follow Kevin on twitter @kevin_healey and read more about his campaign on http://www.autism-campaign.co.uk/autism-bullying-campaign/

So please, if you have a moment, spread the word and help get Kevin’s campaign trending.

Thankyou.

But the question is how do I, how do we, educate others about autism and aspergers in a society that is becoming increasingly divided?  As uncomfortable as autism awareness can feel, hiding away is not the answer because to hide away means we’re not there to challenge the myths about autism that circulate in society.

On the other hand tweeting stats and pretty pictures seems a rather empty guesture too.  I mean if I publish the autism ribbon on my blog or tweet some statistics (and I have done) will people understand what autism really means or will they just look at it and think “thats a pretty picture” or “mmm that’s interesting”.  Its a question that has also got Katrina at Kats Cafe thinking.  As she explains in this post, switching on a lightbulb, sharing a photo or ribbon and spreading statistics may make us feel as though we are spreading awareness but are we?  She argues that though our actions may be well intentioned this sort of awareness spreading is passive.  Displaying a picture or statistic may represent what we believe in or what we  are passionate about but it’s not active awareness building.  It doesn’t tell someone the realities of living with autism, it doesn’t educate them or attempt to break down stereotypes.  As Kat goes on to explain “building awareness is writing about perceptions and stereotypes, its reading those posts and intelligently reacting and responding to the ideas they represent.”

I agree and indeed there are many many articles written by both self advocates and parents and carers that do this.  They have certainly  helped me to feel less isolated and to learn more about autism but the challenges remain: how do we reach those outside the autism communities; the employers, the policy makers, ordinary people, those who think they know autism but actually don’t.

Well, in my opinion, online autism awareness campaigns are not enough. We also need to get out into our own communities and actively work to dispel the misconceptions about autism.  It’s about educating those close to us; family, friends, neighbours and colleagues and those that work with our children.  It’s about finding the confidence and the courage to explain why we or our sons and daughters do this and that.  It’s about challenging people who stare, make comments or who complain about us or our children.  Of course I realise there are times when we practically cannot do this but when an opportunity presents itself then we must try and grab that moment to educate someone.  A great illustration of this is when Four Sea Stars talked to her son’s class about autism – you can read about it here.  It is an inspirational post which shows what can be achieved.

The point is that relying on a global online initiative is not enough for spreading  awareness no matter how active it may be.  We also need to educate those closest to us and that starts at home.