Understanding Death and Illness and What They Teach About Life: An Interactive Guide for Individuals with Autism and Aspergers and their Loved Ones
by Catherine Faherty
available from FHautism.com

There are routines and milestones that we anticipate and prepare for, like getting ready in the morning, or going to the dentist, or transitioning to middle school. And then there are other profound, often inevitable milestones that we avoid discussing or preparing for because we find it so uncomfortable. Maybe we think “there’s always later.”

I wish someone had handed me this book years ago and told me to stop waiting for later, so now I’m doing that for you.

Catherine Faherty, an educator and TEACCH therapist, has written an extremely interactive book (or rather, workbook) that can be adapted for different needs. At 341 pages, this isn’t a book to be read cover to cover. Instead, I’d recommend finding sections you want to work on, bookmarking, making notes, reflecting, and turning this into your own personal reference.

The first third of the book deals more with the emotional aspect of illness and dying, while the last third deals with broader emotions that can come up while pondering life. Since I tend to like practical and concrete, the middle third was most useful to me, dealing with topics such as “What do people say after someone has died?”  Well-meaning but vague sayings can be confusing for the literal among us (“I’ll keep your family in my thoughts”; “He’s in a better place”), so it’s better to learn them before we hear them from someone else.

There are also helpful explanations of the logistics of services, burials, and such. Whereas NTs can kind of look around and get what is going on, I have never understood what to do when. Finally, a manual! While your expression of grief is a personal choice, you should at least have the option of knowing what to expect and what is expected of you. Plus, it may one day be your responsibility to make these decisions and that’s most definitely not when you should be learning about this for the first time.

Another must-bookmark for me was “How do people react when they learn that a person they know has died?” Again, not because you have to fit into one of those categories, but it’s helpful to know what other people may do and why so you can at least recognize that they might be grieving.

The right side of every two-page spread features a checklist that can be used in different ways:

• a form of communication for nonverbal or less verbal readers, to facilitate a conversation with a caregiver
• a way of keeping notes for later reference
• a way to work through abstract ideas in concrete, visual format (I do much better with a list and fill-in-the-blank than an essay)

Book Review: Understanding Death and Illness and What They Teach About Life

There’s a book I’m looking forward to reviewing that facilitates an understanding of death and dying from the point of view of an autistic person – not just “where do they go” but the practicalities of what people say, what rituals people have, and how grieving might happen.

After everything I’ve been through in the past year, I can’t stress enough how important it is to have a conversation about this. (Parents, are you listening? This can’t wait until they’re older.) You never think you need to know this kind of thing, and then you do. NTs somehow pick up this knowledge from each other – it’s a little bit like weddings or babies. But somehow I was always left out of that stuff and the first real encounter I had with death and funerals was my own parent. When no one has ever explained to you what really happens when someone dies, you don’t know how to plan a funeral or run around picking up the pieces of their life.

Thank you to everyone for all the support and kind words; you know who you are. I absolutely would not have survived the past year without you.

P.S. – I don’t know why the font size is now so tiny. I shall work on that.

…And We’re Back!

The first half of the month was a nightmare due to the New Home Fiasco. For so long I had assumed that moving would be the end of our months-long journey, but little did I know the worst of it – the intense sensory overload, the helplessness – was yet to come. I’ll have to write about it another time because it’s still unresolved and I don’t know how this one ends.

Once I was ready to start moving on, I found out that my mother had passed away. The rest of the month became a whirlwind of traveling to a foreign country I hadn’t been to in decades and where I barely spoke the language. Making the situation even more complicated was the fact that I hadn’t seen my mother since I was a young child (although no, I’m not adopted).

There were moments when I felt there were so many decisions being expected of me that I might just implode. And that’s when my husband would tell me to stop trying to solve every problem at once and just think about what needs to be done in the next minute, or the next hour. Every time I insisted I couldn’t do anything because I needed to make ten other decisions first, he’d shake me out of my paralysis (or as my friend Sharon calls it, inertia) by telling me to stop dwelling on the decisions and just do the small things I needed to do. He was right.

It’s amazing how blunt people were in the things they said.
“Why do you have no emotions?”
“Why aren’t you warm and emotional like other Korean women?”
“Why do you think so long before you respond?”
I also got other rude comments from strangers on the street about how I must be poor because of my clothes (they had no knowledge of American styles or brands). It’s not a place where you’d want to be different from the mold in any way. At one point I was feeling pretty frustrated about this when I heard a couple of girls talking loudly in English about the same thing. That’s when I realized that they too had been bullied by Korean girls for being “different”. I glanced at them and saw that they were probably the only girls I’d seen all week who hadn’t had plastic surgery (besides myself) and didn’t put on a fake act. And then I didn’t care so much who thought I was “weird” or “cold” or not the most perfectly dressed.

So here’s to a better December. Thank you again for all the support during this time; I can’t tell you how much it means to me and how your friendship has carried me through what could have been a much much worse experience.

The Month That Should Have Never Been: Back From Korea

Some of you friends know what I’m going through and have been so helpful and supportive. I’m so grateful for all your love and promise I’ll be back soon, ready to talk.

Still here…

Some of us rely on text or pictures. Back in the day, friends used to make fun of my college roommate and me for IMing each other from across the room. Now my husband and I email each other from adjacent rooms because it’s easier to make out the words. I misunderstand him so often when he talks that it’s just easier to email. It probably makes sense that I learned to talk and read around the same time as a child – I needed the letters to break down the sounds.

But people tend to assume talking is the only option. You either talk or you can’t communicate.

I know, it’s hard for people to break old habits. The default, especially for those who did not grow up with newer technology, is to communicate via phone. Social media? Oh, isn’t that for Farmville and celebrity stalking? But for many autistics, it is our lifeline.

Next time you get in touch with an adult on the spectrum, resist the urge to say, “call me” or “what’s your cell phone number?”. Instead, try asking, “what’s the best way to reach you?” It may not be the phone at all – it may be email, text message, IM, Skype, or another mode of communication. Are you ready to learn something new?

Press Pound For More Options

At this point, you could react one of a few ways.

1) Pretend you heard nothing. You can’t even be sure it was intended for you…maybe if you don’t react the other person will say it again?

Most likely the other person will figure out that you are ignoring them and get upset.

2) Ask the person to repeat him/herself. Potentially embarrassing.

The other person will probably repeat the sentence, although they quickly get annoyed if you’ve done this more than once. So you learn not to do this every single time you misunderstand.

3) Try to guess what the person is saying and predict what response they want from you. If their tone of voice sounds joking, you give them a smile or even a hearty laugh.

There is the long, uncomfortable stare when you get it wrong and the other person decides you were either not listening or intentionally being rude. And then you do the quick, “wait, WHAT?”

What do you do?

The Long Uncomfortable Stare

When it comes to pie, I insist on making the crust myself to get the texture right. That means having to handle the dreaded dough, however. Would it be possible to make a pie crust without touching the dough?

Using this recipe from Simply Recipes as my starting point, I found that there really is at least one way (if not more) to get this done.

Instead of putting the dough directly on the counter, I put it on a piece of plastic wrap. You’ll see why in a moment.

To form the dough into a ball and knead, I bring up the edges of the wrap and then worked with the dough from outside the plastic. That way I can knead it without touching the surface. FYI, flouring the plastic beforehand keeps the dough from sticking later on.

(Alternative: I’ve heard you can use a stand mixer with a dough hook. Personally I like the idea of less cleanup, but maybe I’ll try my mixer one of these days.)

When rolling out the dough later on, I just unwrap the plastic and cover the dough with another layer of plastic, so that it’s sandwiched. Instead of rolling the pin right away, I use a technique I learned from a Bobby Flay throwdown – press down with the pin several times going down and across to help spread it into the right shape. Then finish rolling it out.

When you pick up the rolled dough, it should be easy to handle between the layers of plastic. You can just peel the layers away as needed!

(Q: Why are the edges of your crust so ragged and ugly? A: Because that’s my bottom crust and it got covered anyway!)

Cooking with Sensory Issues: No-Touch Pie Crust

Behavior Solutions for the Inclusive Classroom
Beth Aune, Beth Burt & Peter Gennaro
151 pages, available from http://www.fhautism.com/

What really stood out for me about Behavior Solutions was the format. It’s small enough to carry in your bag without dislocating your shoulder, and instead of the traditional format of long chapters filled with theory, this book is broken up into short 3-page sections. You simply look up a challenging behavior in the table of contents and find several solutions in the corresponding section.

The format makes the book great to use when you need to solve an issue right away, or when you’re working during a lunch or prep and need to brainstorm interventions without the help of a special ed teacher. Because let’s face it, not every regular classroom teacher gets as much training or support as we’d like when it comes to special ed and challenging behaviors, but every class will have at least one student who challenges us daily.

As a teacher, I’d say the solutions offered are extremely practical and effective. It made me smile to see some of the interventions my colleagues and I used successfully with our own students, although how nice would it have been if we had this book at the time and didn’t have to reinvent the wheel? It’s extremely empowering to have a set of options right at your fingertips instead of having to ask someone else.

As someone on the spectrum who has personally used many of these strategies (“busy tasks”, chewy foods, sturdier pens) as a learner, I can’t recommend this book enough. The average teacher works so hard but has no idea how to connect behaviors with the right solutions, and Behavior Solutions can explain instantly what hours in continuing ed and workshops may not.

Bottom line: This is a must-have book for teachers (as well as parents) who’d like quick and easy access to effective ideas for handling challenging behaviors in the classroom.

(A review copy of this book was provided by the publisher.)

Review: Behavior Solutions for the Inclusive Classroom

When I got the formal Auditory Processing Disorder diagnosis earlier this year, there were parts of it that I didn’t recognize in myself right away.

So, not being able to make out speech from background noise, yes. Getting overloaded when there is background noise, yes. But what do you mean, difficulty following directions? (Actually, if you look back at my post from last spring those were almost my exact words.)

Lately I’ve started to understand that for me this means immediately forgetting everything but the first thing anyone tells me. As the audiologist explained, I put so much effort into rehearsing that first phrase in my head that I have no capacity left.

Sometimes I might not even notice the person is still talking. Recently I was dealing with an automated phone system, doing a fairly simple task:

1. Say your name and spell your last name
2. Press 1 when you’re finished

Well, I was so busy rehearsing the “say your name and spell it” prompt in my head to help myself understand and remember it that I didn’t even hear “press 1″! So picture me sitting there, waiting and waiting for anything to happen. Meanwhile, the system is waiting for me to press 1. <crickets>

While I was making an appointment today, the person I was talking to started talking about different times I would come in on the same day. Knowing I was lost, I asked her to please repeat the times for me so I could write it down. Thank goodness I asked her to do that, because it turned out I’d gotten everything but the first number wrong. Why? Because I was rehearsing the first time in my head, trying not to forget it, while she was saying the other times.

What I’ve learned from all this is that with multi-part directions:

• Don’t assume you can keep it all in your head
• Ask people to repeat and even slow down
• Write the directions down as they’re being given

If you know a child or adult whom you think might have difficulty with multi-step directions due to auditory processing issues, try to avoid giving more than one step at a time. Better yet, give schedules and directions in writing!

(photo: Laura Taylor)

Understanding Why I Have Difficulty with Multi-Part Directions

1. Plastic gloves

Not your typical rubber kitchen gloves! I get these disposable plastic gloves from the Korean market and tell myself I am not going to burn in hell for wasting plastic. If you’ve ever dyed your hair, they’re kind of like the gloves that come with the kit.

Why? I have an aversion to touching anything slimy or getting my skin wet, which is kind of a problem for someone who likes to cook. How am I supposed to handle raw meat? Who even cares about the germs; it’s the texture I can’t stand!

With these gloves, though, I can stop wanting to flail my arms and focus on getting through the task. It’s impossible to prepare food when I’m holding it with a dainty pincher grip to avoid touching it, and when the task involves a knife it’s downright unsafe.

2. Sensa pens

My mom lived in perpetual embarassment of my handwriting, which she said was completely unfeminine. Every other girl we knew in our social circle had the prettiest, most perfect (and in my opinion, most irritating) handwriting, while I was scratching out ugly letters. Maybe someone could have noticed that I wasn’t really right-handed but writing with my right…and holding the pen in a death grip.

Sensa pens are the greatest because the grips mold to my fingers and have a stress ball effect. They write smoothly, have such a nice weight, and there’s no cap to lose…they open and close by twisting! They’ve been discontinued, but if you look carefully you can find them online.

Another source of ergonomic pens is JetPens or if you live near one, a Kinokuniya bookstore. I used to make the trek to San Francisco a few times a year just to pick out pens at Kinokuniya because I couldn’t write with regular skinny pens (and just say no to Dr. Grip!)

A less expensive alternative is the Paper Mate X-Tend, which I’ve been using for close to 10 years because the tacky, wide grip extends almost to the tip.

3. Organic Dried Mango

I love these because I’m secretly a chewer. My family used to beg me to stop grinding my teeth, but actually I was trying to get some pressure on my gums. If I could just have a compression sleeve for my gums that would be awesome.

Often chewers like to chew on pen tops and pencils, but I’ve always found that to be…not my thing. Maybe it was all the times I lent out pencils as a kid and got them back all eaten up. That’ll turn a person off chewing objects for a good long time.

Organic dried mango is free of chemicals (like sulfate) and sugar and has that magical tough texture that I crave. Plus it has a zippiness to it without being sweet, which is important because I don’t like sweets.

Your local Starbucks might carry snack packs, which is how I got addicted in the first place! You can also find it at Whole Foods and online.

3 Things I Couldn’t Live Without