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Coping Strategies Survey

This week’s questions are all about coping strategies. Traveling, panic attacks, aging, job hunting, emotions, obsessions – it’s a great mix and I think we’re going to come up with a great big pool of potential strategies that we can all draw on when needed.

You know the drill–if you’re on the spectrum, either formally diagnosed or self-identified, you’re welcome to join in. Answer as many or as few as you like. Do it here or anonymously at Survey Monkey.

 

1. I am wondering if travelling is hard for all Aspies as they age or if it is just me?  I like my home at night and my own environment. I prefer to be as close to it as possible…and I get sick or upset if I stay away…my tolerance is two days from home max and two weeks to recover…Does anyone else feel this way? Does it get worse with age or in certain decades? more details here

2. Is liking or disliking foreign travel related to ability to pass for NT at home?

3. Do you experience problems with long flights? If yes, which aspects are most problematic? (which travel stages: e.g. planning, navigating airports, flying, unfamiliar surroundings at the destination etc – and which problematic factors: e.g. sensory overload, executive function issues, anxiety / panic attacks etc) How do you cope with long flights? (what are your coping strategies)

4. How do you cope with panic attacks in unavoidable situations that you can’t leave, such as during flights?

5. Do you find yourself getting more autistic as you get older? Did your coping strategies improve with age due to experience or psychological assistance (I shy away from the word ‘treatment’) or did they deteriorate over time because of a decrease in overall energy?

6. How do you cope with strong emotions, especially strong negative emotions, especially if you’re also alexithymic? How do you support someone going through a very difficult time emotionally (nothing practical to be done)? How do recognise what the feelings are, and how do you respond in a way that comforts the person?

7. How do you motivate yourself to job hunt? more details here

8. A question that is specifically for people who menstruate: do you notice changes during your menstrual cycle. With changes I mean changes in sensory perception, abilities to cope and/or compensate, EF, etc.

9. If you’ve been heavily obsessing about an interest for a while do you find you have to have a short break from it because it has got too intense?

10. Has anyone taken concerta/ritalin/other stimulant drug prescribed to help ADHD type symptoms and reacted very badly to them physically? What effect did it have on you in the short and long term?

 

Backstopping: Supporting the Autistic Person in Your Life

The Scientist and I moved cross-country a few years ago. We made the drive In four days and by the middle of the fourth day I was on the verge of shutdown. It was way past lunch time, we were out of snacks and we were driving through Middle of Nowhere, West Virginia.

When we finally came upon a place to eat it was a McDonald’s. Just the thought of eating fast food made me feel nauseous. I said I would walk the dog around while The Scientist went inside to order. When he asked what I wanted, I said “Nothing.” By the time he came out with a big bag of food, I was sitting on the curb by the car with my head on my knees, wishing I could teleport myself the final four hundred miles to our new home.

The Scientist sat down to me and said,”I got you something.”

Even though I was so hungry that I was light-headed, I couldn’t imagine being able to eat a burger or fries.

“I don’t want anything,” I said.

Undeterred, he reached in the bag and took out a container of oatmeal. When he opened it, I saw it was topped with fresh blueberries. He’d found the one thing on McDonald’s menu that wouldn’t totally repel me. I was so happy, I nearly cried.

What’s the point of this rather boring and uneventful story? It was the first memorable instance of something I’ve come to think of as backstopping.

Finding the Right Balance

For readers who aren’t familiar with baseball, the backstop is the tall metal fence located behind the batter. It keeps foul (mis-hit) balls from flying back into the bleachers, but it also saves the catcher a lot of work. If the pitcher throws a wild pitch that gets past the catcher, the backstop will “catch” the ball and the catcher won’t have to run fifty or a hundred yards to track down the ball.

In that McDonald’s parking lot, The Scientist saw the ball that was getting by me–I was too close to shutdown to realize that I wanted to eat something bland and that hunger was contributing to my crash. Instead of saying “you need to eat” or “go find something to eat”, both of which would have been met with negative responses, he recognized my crisis and went in search of a solution.

But not before giving me a chance to catch the ball myself, which is a key point. He didn’t just rush off to buy me lunch without first asking a couple of times what I wanted.

Backstopping is by nature a form of back-up support. It’s a tricky balance of recognizing that a potential crisis is arising and then giving me a chance to deal with it before stepping in to help or offer support.

Sometimes it requires reading between the lines and guesswork, like the McDonald’s incident. But sometimes it’s as simple as him saying, “hey, wouldn’t you be more comfortable if you sat on that side of the table” because he’s noticed that I’m about to sit down facing the restaurant’s chaotic open kitchen. And sometimes it’s about being ready to offer support, just in case.

My daughter reminded of the importance of this a few weeks ago. While we were out shopping, someone asked me an unexpected question and I floundered around a bit before finally blurting out an answer. Jess watched quietly and after the person left, I expressed my distress at struggling so much to find the word I was looking for.

She casually said, “Don’t worry, I was ready with it if you really couldn’t get it.”

That was perfect. It made me feel like she respected my competence and was patient enough to let me get to the answer on my own if I could. But she was also ready to support me if I couldn’t.

The beauty of backstopping is that it’s unobtrusive and supportive without being smothering or invasive. It makes me feel like the people around me care for me without having to act as caretakers.

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Putting Backstopping to Work

Watching backstopping in action has gotten me thinking about how other people could put it to use to support an autistic people in their life. Here are a few suggestions:

1. Be observant. Often, the precursors to a crisis are obvious in retrospect. Each of us has specific things that trigger our sensory sensitivities, cause us to struggle in social situations, etc. We also have our own unique “tells” that signal when a shutdown or meltdown is imminent. By watching carefully, you can learn to recognize precursors and be on the lookout for them. The Scientist sometimes asks me what triggered a shutdown or what I was feeling during a key moment. I think he’s secretly building a precursor database.

2. Be prepared. What works to head off sensory overload? What strategies are best for making difficult situations less stressful? What kind of support is most useful? Sometimes observing our instinctive reactions to a situation can reveal useful strategies. But sometimes our instincts aren’t the best and a little post game analysis is necessary to work out a better plan for future occurrences. Asking questions like, “what do wish had happened?” or “what would have made that easier for you?” can be helpful. Some autistic individuals, especially children, might need more specifics, like, “did you want to leave the room when Joey started crying?” or “did you want me to tell Aunt Joan that you were tired and wanted to play quietly with your toys instead of playing a game with your cousins?”

3. Be patient. When someone is struggling, it can be tempting to simply step in and do the thing for them. But remember, the backstop is located behind the catcher. It doesn’t jump out and catch every ball that looks like it might go astray. It’s important to give the autistic individual in your life a chance to try and perhaps to fail before you offer support. The Scientist didn’t immediately go order food for me. He gave me multiple chances to recognize that I needed to eat and that hunger was contributing to my shutdown. Only when it was clear that I was already crashing and not in a state of mind to make good self-care decisions did he step in.

4. Be nonjudgmental. Sometimes backstopping means “doing the obvious.” If the autistic person in your life struggles with the same thing over and over, it can be easy to get frustrated and wonder why they “just don’t get it already.” The thing is, sometimes we have blind spots in areas that are obvious to others. We may not sense that we’re hungry or in pain. We may not realize that we’re putting ourselves in a position to trigger sensory sensitivities or we’re overdoing things socially. Rather than saying things like “why can’t you just _________” or “are you ever going to learn to ___________” try gentle reminders, prompts or leading questions.

5. Be ready to step back. Sometimes, once The Scientist points something out, I can “reboot” the necessary subroutine and get myself back on track. When this happens, he has the grace to step back and let me take over my self-care or whatever he’s been supporting me with. He’ll even do this when he suspects I’ll goof up because he knows that having a sense of independence is important to me.

Not An Instant Fix

Backstopping is a delicate art. As a friend or family member, it’s hard to watch someone you love struggle with something that seems easily solvable. As an autistic person, it’s hard to find yourself facing the “same” crisis repeatedly, feeling as if you’ve learned nothing from the ten iterations that came before it. Navigating these situations can require some emotional tightrope walking at first.

In the past, I was prone to resenting any help that was offered. I think The Scientist caught on to this early and finally found a way around my defenses by keeping his assistance really low-key. He doesn’t make a big deal out of offering it and (even more important) he doesn’t make a big deal out of how much better I feel as a result of it. That might sound strange to someone who has a good relationship with accepting support from others, but I suspect there are a bunch of you who know exactly what I’m talking about.

For my part, I’ve become better at suppressing my No Reflex, which makes it easier for me to consider alternative solutions. Or in some situations, any solution at all. I’ve also accepted that there are times when the ball is going to get by me, no matter how responsible, independent or careful I am. When that happens, having someone around to backstop me can prevent a deteriorating situation from spiraling into a full-blown crisis.

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How We Experience the World Survey

I was stumped for a title on this one. The questions all center around various ways we experience the world around us, but they’re about as loosely related as you can get and still say there’s a theme.

If you want to answer anonymously, you can do so at Survey Monkey.

 

1. Is the fascination with certain topics usually a life-long one, persistent over many years, or subject to change ?

2. What are your special interests and on what scale do you engage in them?

3. What effect does alcohol have on you, particularly on your executive function or stimming?

4.  I’m wondering if sitting all crossed-up in chairs is an ASD ‘thing.’ (i.e. do you do this?)

5. Do you have some very specific memories? Such as “ah-ha!” moments that you can draw up much more clearly than most memories, involving not only a picture but feelings, perhaps sounds and smells etc. as well and the image is VERY clear whereas most memories are a thought.

6. Do you sometimes attribute feelings to inanimate objects? Do you feel like certain objects ‘want to’ be interacted with or will feel bad if you don’t use them? Do you explain some of your quirks in this way, for example thinking that street furniture or certain textures want to be touched/felt, rather than you want to touch them? Or does it feel this way but you translate it when talking to others?

7. Does arousal influence you in an autism-specific way? As in: Do you overload easily when aroused? Does arousal influence, for example, your verbal reasoning skills than you feel would be “normal”? Do you stim when aroused? (for clarification: the questioner described this question as being “personal” so I think they are referring to sexual arousal, but answer in whatever way is comfortable for you)

8. Do you have difficulty with sequencing – working out the order in which you need to do things – for example if you were preparing an unfamiliar meal with several elements, would you have difficulty balancing them all without explicit planning and measurement in advance? Do you often realise you’ve done things in the wrong order or in a very inefficient way?

9. Is your primary fantasy ‘stopping’? In school, I used to fantasize about spontaneously dropping unconscious. As an adult, I fantasize about leaving the social system entirely. more details here

10. We often hear about autistic children wandering off. Did you wander? Did you “disappear” frequently to the point that was upsetting to your family (or teachers?) Why did you wander off? What do you remember about it? Now that you are an adult do you still wander? Do you disappear (perhaps during sensory overload) without telling anyone that you need to remove yourself at this time? more details here

Asking for Accommodations

Accommodations make life easier, but as Otterknot pointed out in a recent comment, asking for accommodations often sounds simpler than it is.

Why is that? Why are we so reluctant to ask for something that will improve our quality of life, our relationships or our ability to succeed at work or school?

The biggest obstacle is often disclosure. Asking for an accommodation or support means disclosing that we’re disabled. Accommodations are for disabled people, after all. For those of us who have spent a lifetime instinctively trying to pass as nondisabled, it can be hard to make the mental shift to being openly or even semi-openly disabled.

There is also the question of whether the other party will understand the nature of hidden disabilities. Unlike a visible disability, a hidden disability carries a certain burden of proof. So we hesitate, wondering whether the other person will believe that we really need this particular accommodation or perhaps dreading the amount of explaining and/or convincing that will be involved.

Finally, there is the specter of self-doubt. Do I really need to ask for this? Can’t I just continue to suck it up and power through like I always have? Maybe if I work harder, I don’t really need any supports.

For late-diagnosed autistic adults, this is a big hurdle. Often, we’ve gotten this far in life by doing our best to get by. Not only are we inexperienced at asking for accommodations and supports, we’re also often inexperienced at recognizing when we need them.

We worry that we’re imposing an unnecessary burden on others by asking for “special treatment.” We feel conspicuous and singled out for having atypical needs. We’ve spent a lifetime working hard to blend in and suddenly we’re being told that it’s necessary to proactively announce our differences.

Building a Foundation

As Otterknot pointed out, many of us have to do some foundation work first before we can feel comfortable asking for accommodations. Here’s what I’ve been working on:

1. Recognize that I have needs, that my needs might be different from those of others and that’s okay. I wrote about this a bit last year–about how hard it is for me to identify my wants and needs, let alone seek out ways to meet them. I’ve made some progress in this area, but it’s something that I constantly have to work on bringing to the forefront of my consciousness.

2. Admit that denying, dismissing or minimizing my needs is more harmful than helpful. My instinctive reaction to needing something, especially something that I think will make me appear “weak,” is denial. I assume that by “not making a fuss” about something, I’m doing everyone involved a big favor. But I’m not. Because it quickly becomes evident when I’m struggling and my struggles can have a ripple effect, resulting in unpleasantness for others.

3. Remember that other people want to help. I’m very self-sufficient, often to the point of ridiculousness. I’m working on asking for help and/or accepting it when it’s offered. Accommodations aren’t always help per se, but the underlying principle is the same.

4. Make peace with the discomfort and self-consciousness that being different can cause. Yes, sometimes receiving accommodations or supports will make me stand out from the group. Yes, it will confirm to other people that I’m different. Yes, it will (rightly or wrongly) make me feel like I’m making a concession to my disability. I’m slowly getting better at being with those feelings, even though they still make me uncomfortable at times.

Mostly, I try to remember that by asking for a change in a situation, there’s a good chance that I’m improving the odds of success, not just for me, but for everyone involved. For example, at a big family gathering last year, I felt myself on the verge of overload. I’d spent two days surrounded by people and just as we were all arriving at the rental cabin for a big afternoon cookout, I felt a sense of panic set in. Too many people, too much noise and commotion.

In the past, I would have simply dealt with it. And by “dealt with it” I mean ignored my feelings and ended up in a classic shutdown before the afternoon was out. Instead, I told The Scientist that I was feeling overwhelmed and panicky. Actually, what I said was, “I need to get out of here. Now.”

He brilliantly deduced the overwhelmed and panicky part, and suggested that we go for a walk. We spent about an hour walking along a stream nearby and being quiet. When I felt ready, I told him and we went back to join the cookout. The hour of quiet allowed me to enjoy the rest of the afternoon and avoid the shutdown that had felt inevitable earlier.

Not only was my day better, but The Scientist (and other family members) didn’t have to spend the rest of the afternoon worrying about why I was feeling miserable.

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How to Ask for Accommodations and Supports

There’s no formula for requesting an accommodation or support. Instead, think of a continuum ranging from a casual to formal requests. Often, it’s possible to ask for a minor change in a situation without disclosing your disability (if you prefer not to). Here are a few examples of places along the continuum:

Casual request: This works well with friends, family or acquaintances in situations where a minor change will make a big difference for you and have little impact on the other person. For example, you’re meeting a friend in a coffee shop and they choose a table right next to the barista station. Knowing that the noise from the machines and constant chatter will make it hard for you to focus on the conversation, you say, “Do you mind if we sit at that table in the corner? The noise from the counter will make it hard for me to hear you clearly.” Or “hard for me to concentrate” or “hard for me to focus on our conversation.” Whatever makes the most sense to you.

Although this is phrased as a question, most people will assume it’s rhetorical and go along with your request, unless they have a competing need (i.e. your preferred table is next to a cold drafty window). If you want to be more assertive, you can say, “Let’s sit at . . .” or “I’d like to sit at . . .”

Firm statement: A statement of your needs is appropriate in situations where there is an imbalance of power or you expect to experience pushback. For example, you’re in the car heading home from a long afternoon of shopping and your partner/parent/friend is feeling chatty while you’re feeling overloaded. To prevent yourself from melting down, you take out your headphones and say, “I’m feeling overwhelmed and need some time to chill out so I’m going to put on my headphones and listen to music until we get home. It’s nothing personal and once I’m feeling less anxious (overwhelmed, tired) I’d like to hear more about __________.”

In this situation, asking the other person to stop talking may be perceived as rude or offensive. Phrasing your statement as being entirely about you and what kind of self-care you’re going to engage in reduces the chances of a misunderstanding. The other person may or may not be bothered by your actions but at least you’ve attempted to explain it in a way that doesn’t blame them (i.e. they’re being too noisy) and have offered to resume their preferred activity once you’re feeling better.

Formal request: In a work or school situation, you may have to make a formal–perhaps written–request for supports or accommodations. This will also involve disclosing, if you haven’t already, your diagnosis to your boss, manager or professor. I wrote about making formal requests in the Disclosure post from the Adult Diagnosis series, so I’ll refrain from repeating myself here.

Practice, Practice, Practice

I’m still a novice at asking for accommodations but I’ve been making a conscious effort to practice and it’s slowly becoming less difficult. One thing that’s helping me along is the steady deterioration of my language skills. For the first time in my life, I’m feeling truly disabled. Not social model disabled or medical model disabled but just plain “I can’t do this thing” disabled. That’s forcing me to think seriously about the types of supports and accommodations that will continue to allow me to pursue the things I enjoy while not beating myself about how much I’m struggling. And that’s probably a whole other post.

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Learning Differences/Disabilities Survey

We’re going to kick off a round of 4 (or maybe 5) Tuesday surveys (yay!) with a set of questions about specific learning differences (UK term) or learning disabilities (US term). All of these questions are by Quarries and Corridors and I have rather selfishly scheduled them first because I’ve been experiencing so many things mentioned here lately and want to hear about your experiences with them. But not worries – I’ll make sure everyone’s questions are included over the next few weeks.

The questions are detailed, so feel free to answer as few or as many as you want with as much or little detail as you like.

You can answer here in a comment or you can answer anonymously at Survey Monkey. (If at all possible, it would be great if you can answer here. There ended up being hundreds of anonymous answers to bring over from Survey Monkey last time which is awesome but also a lot  of work, y’all.)

Learning Differences/Disabilities Questions

1. As well as an autistic spectrum condition do you also have a specific learning difference (aka US English ‘learning disability’) such as dyslexia, dyspraxia, dyscalculia, nonverbal learning disability, ADHD etc? Even if you don’t have a diagnosed/labelled SpLD, do you have cognitive traits commonly associated with SpLDs like slow processing speed, below average spelling, fragile working memory, poor concentration etc?

2. Are you actually unusually good at any of the above? For example unusually fast reading speed, learned to read early, extremely good at spelling, usually good short term memory, extremely good spacial reasoning, adept at doing things efficiently without conscious planning, excellent concentration regardless of interest level etc?

3. If you have spelling difficulties, has your spelling had much improvement since childhood? Do you still remember how to spell words correctly by remembering how to correct your automatic wrong version? Can you read without ‘reading out loud’ in your head? Can you read faster than you can read out loud? Do you have difficulty pronouncing words you’ve read but haven’t heard said before – even if you’re told they’re said how they’re spelt?

4. Do you frequently mix up two options when speaking or writing (for example confusing ‘train’ and ‘bus’)? Do you find you often miss out small words or parts of words, or tend to add inappropriate postfixes to words (for example writing ‘specifically’ when you meant ‘specific’, or vice versa)? Do you regularly get people’s names wrong in speech even when you know what they are? Do you repeatedly forget the words for things when speaking? When you make these mistakes do you often not realise that you have, sometimes even when proof reading? Do you make more mistakes of these types when tired?

5. Do you often mix up left and right? Do you have difficulty judging distance, speed, size, volume etc? For example, do you need to be careful crossing the street because it’s difficult to judge how fast cars are going? Do you find spacial reasoning tasks difficult, for example working out which way up to put the page back into the printer when you want to print on both sides? Do you have particular difficulty performing manual tasks that ‘cross the midline’, ie, your hands cross over and both do different things? Did it take you an unusually long time to learn to tie shoe laces, and if so did you learn an alternative type of knot to do so?

6. Did you struggle to learn the times tables as a child? Do you still not know your times tables as an adult? Do you particularly struggle with mental arithmetic? Did you have difficulty learning negative numbers and subtraction of negative numbers (without a calculator)?

7. Do you have difficulty reading analogue clocks? Do you find it a challenge to understand/visualise how the clocks going backwards or forwards when daylight savings starts or end will affect time differences with time zones where the clocks haven’t changed? Do you find mental arithmetic unusually difficult?

8. Do you struggle to visualise things and tend to think in words, or alternatively do you naturally think in pictures and have to translate to words? Do you ‘hear’ words or ‘see’ them when you think? Alternatively do you not fit either of those models and think in some combination of them or think in some other kind of unusual way, for example in spacial relationships or in tactile sensations or motion?

9. If you’re asked how to spell something, do you ‘see’ the word and read out the letters or do you have to work it out from the sounds or simply remember the sequence? Do you have difficult learning how to spell new words or speak/write new languages?

10. When you mentally solve non-verbal problems like splitting the bill and working out the tip, or like how to seat everyone at a wedding dinner, do you tend to think them out as mostly word-based problems using verbal reasoning or do you visualise or conceptualise them in other ways?

 

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Giveaway Winners and Call for Survey Questions

Congratulations to the 5 winners of  Ultraviolet Voices – Stories of Women on the Autism Spectrum :

  • Otterknot
  • Lana
  • Nicole G.
  • Mama4science
  • Tagaught

I sent off emails to the winners, so be sure to check your inbox and get back to me with your mailing address if your name is on the list above.

Survey!

There was enough interest in doing another round of surveys so let’s go for it. The last time we did surveys, I had a lot fewer readers and we still ended up with 5 weeks worth of survey questions so I have no idea how manageable this will be, but we’ll give it a try.

The Concept

Do you have a question you’ve always wanted to ask other autistic people? This is your chance. Some of the questions in the last survey had over a hundred people answer them and often the answers went into a lot of detail. For an idea of questions that were asked and answered last time around, take a look at this post and the posts linked from it.

How it works:

1. Leave a comment on this post with your question(s). You can post more than one question and I’ll try to include everything, but if there are too many questions, I may have to limit the number of questions per person that get used.

2. I’ll collect the questions and organize them by theme.

3. I’ll post the first survey on a Tuesday (tradition!) and then post a new survey once a week until we run out of questions or we get tired of talking about ourselves. :-)

Book Giveaway: Ultraviolet Voices – Stories of Women on the Autism Spectrum

The giveaway is now closed to new entries – winners will be announced soon!

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It’s time for another giveaway!

The past few weeks have been really hectic, so no new posts this week but I do have some books to giveaway. Late last year, I was invited by Autism West Midlands to contribute to their anthology Ultraviolet Voices – Stories of Women on the Autism Spectrum (more details about the book). It’s a collection of narratives, each 1 chapter in length, most written by women on the spectrum, meant to shed light on the difficulties related to being seen and understood as an autistic girl or woman. There is also artwork, poetry, an interview and some background research. I’m Chapter 2! :-)

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I have 5 copies to giveaway and to keep it simple, I’m going to choose 5 random comments from this post. To enter the giveaway, leave a comment on this post telling me about something that’s making you happy today. That’s it! Everyone is eligible to enter, including international readers. You have until Sunday evening at 5 PM EST.  Ready? Go.

Oh! Wait! I have a question for you all and this seems like a great place to ask it – how many of you would be interested in doing another set of make-our-own survey questions to answer? Kmarie wanted me to do a survey about traveling and a while back someone else suggested a survey on another topic. Maybe it’s time to do another survey series?

The Logical Fallacy of Person First Language

The problems with person first language have been talked about extensively in the autistic community. Many autistic people have expressed a strong, explicit preference for identity first language. And yet, we’re still treated to comments like this one (paraphrased from a comment on another blog):

I work with children with autism and I always say child with autism because they’re children first and autism doesn’t define them. Also, I say typically developing child instead of normal, because normal has negative connotations. Words are important–they reflect how you think.

My first reaction to reading that type of comment is always, “aren’t the typically developing children also children first?”

Or do we just not need to be reminded that they’re children?

If you don’t use normal because it has negative connotations, does the same logic apply to the use of autistic? Or does autistic exist in some special category of word that’s not bad but also unspeakable?

I fail to see why it’s okay to use the identity first descriptor “typically developing child” but not the identity first “autistic child.” Why do we constantly need to be reminded that the autistic kids are people? Is it so easy to forget? I would hope that no matter what label I use to refer to myself it be would obvious that I’m a person.

Anyone who needs to constantly remind themselves that disabled people are people should probably spend more time examining their own beliefs and less time telling other people how to speak about themselves or their children.

Using person first language to refer to autistic children and identity first language to refer to typically developing children isn’t inclusive. It’s othering and unnecessary.

Person first language arose because disabled people were being referred to by demeaning and pejorative terms that had an identity first construction. In some communities, where a preferred identity first term hasn’t arisen, person first is still the preferred construction.

Autistic people, however, have repeatedly expressed a preference for identity first language. For some reason, nonautistic people who think they know better continue to ignore our (loudly and oft-stated) preference. To those people I say, “If you truly believe we’re people, first or otherwise, then listen to what we’re  saying and respect our preference.”

Autistic is not a dirty word. When you act like it is, you aren’t helping  autistic people. You’re contributing the very stigma that you pretend to abhor.

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One of my wonderful readers brought this post to the attention of the folks at the Yeah Write Writer’s Challenge it was made an Editor’s Pick. I even got some swag. :-)

_________ing an Uncooperative Body

I don’t know how to title this. I don’t know what verb to put in that gaping blank space. I don’t even know if body is the right word.

Maybe brain is more correct, though my brain keeps reassuring me that it knows exactly what it’s doing. It points fingers at my uncooperative mouth and unruly hands, blaming the execution when I’m quite sure something must be going wrong further up the line, in the commands or perhaps the translation from thought to action.

And yet . . .

It’s clearly physical, too. Physiological? I watch my hand go astray as it writes letters that I’ve know how to form–that I’ve been writing without conscious thought–for forty years. Even as my brain is putting on the brakes and mentally shouting at my fingers that an “S” doesn’t look like that, my hand carries merrily on, barely finishing an extra loop or a backward curve before I bite my lip and, with a level of concentration more commonly seen in first graders, trace over the letter until it looks right.

Less obviously physical, but just as confounding, when the word in my head doesn’t match what my fingers type or my mouth blurts out, it feels like an accident of the body. A localized failure to follow orders.

And yet . . .

The brain directs the body, is part of the body. So let’s say body. It’s all a little less scary that way anyhow.

That still leaves the verb. The action. What is this dance that I’m doing with my uncooperative body these days?

All I know for certain is that I need an -ing form, denoting an event in progress.

Taming an Uncooperative Body?

I wish. Taming implies making something easier to control. What’s happening has its own timing and progression. The best I can do is to try to keep up with the changes as they make themselves known, one by one, steadily more strange.

Wiling an Uncooperative Body?

I should know by now the outcome of “just try harder” in these situations, but I still fall for it. Occasionally sheer will works. I’m pretty good at forcing myself through unpleasant tasks when necessary. But with writing? Having a conversation? Mostly I end up cranky, with an achey head and a strong desire for a nap.

Ignoring an Uncooperative Body?

Ignoring worked for a while. When the oddities and slip-ups and errors were an occasional thing, I could pretend they didn’t bother me, that I was being a silly perfectionist. They were annoying, yes, but still easy enough to ignore. We’re past that point now, and have been for a while.

Accommodating an Uncooperative Body?

I tried–and continue to try, though with less enthusiasm–to find accommodations that work. I’ll talk instead of writing, I assured myself. I’ll use text-to-speech to check for errors. I’ll switch to handwriting, slow down my typing, outline, make notes, scaffold, revise as much as it takes. Give up Facebook groups and commenting and reading a zillion blogs and articles, reduce my communication load and stop volunteering for projects. I’ll have silence day and learn sign language and only write on “good” days and settle for a word that’s close enough when I can’t find the one I really want.

Each one worked for a while, until it didn’t anymore. A series of Maginot lines and my brain invaded Belgium every time.

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Fighting an Uncooperative Body?

At times, I do, out of stubbornness, a refusal to give in, pride. I’m angry a lot these days. At what, I don’t know. Myself? Why? It makes no sense to be angry at myself for something I’m not purposely doing. Maybe at life, circumstances, the way irony is only truly ironic when it’s happening to someone else.

Maybe I’m more frustrated than angry. Maybe the exact descriptor of the emotion is irrelevant. Instead, if I say that the headbanging urge arises too easily and too often, does that convey what I’m feeling? If you’re autistic, I suspect it does. I guess that’s where the fighting comes in. Because I have to still that urge, patiently walk myself back from it, seek another outlet for that feeling. That takes energy, effort, sometimes just plain blunt force. I’m thankful for a lifetime of practice.

Mourning an Uncooperative Body?

Probably too strong and certainly too final a word, but there’s an intense sadness and feeling of loss that walks beside the anger. My ability to express myself in writing has always been one of the things I thought no one could take away from me. I assumed it was a constant.

My skill with words wasn’t just a strength, it was (is? I don’t know anymore) part of my identity. Writing is an integral part of who I am–one of my oldest and dearest special interests, one of the things that defines me. And I’m sad and scared and angry that it’s possibly dying or, at the very least, deserting me for a while.

Where do you escape to when you’re trying to escape the very thing that has always been your most comforting safe space?

Questioning an Uncooperative Body?

Who is this person I’m becoming? There’s an incongruity that’s developing in the gaps of who I am and who I think I am (was? have been?), between the aspects that continue to be strong and the areas that I’m struggling with in ways I have no contingency plan for.

When I’m not writing or talking or listening, I feel as whole and competent and as much myself as ever. I go out to run in the morning and the ideas flow just as they always have and I think “yes, today is the day.” Then I sit down at the computer, stupidly optimistic, eager to write what’s running around in my head and quickly begin to wonder what kind of tricks my brain is playing on me, what made me believe that today–unlike yesterday or the day before–that today would be the day that I could get from thoughts to words so easily.

Disguising an Uncooperative Body?

Increasingly there is the need to disguise my confusion. How often can I ask The Scientist to repeat himself until his frustration surpasses mine? How often can I reasonably tell him that I need silence because listening to speech, trying to link one sentence to another, holding the fragile tenuous meaning of his words in my head until I can respond requires more effort that I can manage in the moment?

How odd does it look to others when my response to the repetition of a question is “sorry, I didn’t realize that was a question” followed by a request to repeat it one more time? How much easier it is to nod and smile and make affirmative noises and hope I’m getting it right.

Of course, The Scientist is on to me and has started repeating himself when his question is met with confused silence or a tentative guess at an answer.

Living In an Uncooperative Body?

My first instinct was “living with” but there is no “with” here. I can no more live with my body than I can be a person with autism. I am my body, uncooperative or otherwise. Increasingly, I find myself gravitating toward activities that don’t require language. I read less, write less, talk less, watch TV less, run more, walk the dog, workout, listen to music, cook, take long bike rides, swim, play games, tend my container gardens, watch The Scientist fish.

Accepting an Uncooperative Body?

I don’t have much choice on this one. The more frequent and pervasive my language problems become, the more I’m being forced to accept that this is the status quo, at least for now, at least until I know otherwise.

There is also the fact that while I’ve lost a fair amount of my communication ability, I’m still able to communicate many things verbally and in writing. My expressive and receptive language has become literal and concrete and often requires more effort than I’d like, but it’s still functional in ways that matter a lot to me. I should be thankful for that. But the sense of loss is still strong at this point and I’m having trouble getting to a “glass half full” way of looking at things.

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And so I’ve run out of verbs. I suppose, secretly, I’d hoped that finding the right verb would mean finding a solution, but I can’t write my way to answer on this one.

Not all posts are about answers, though. Some are simply here to say if you found anything in these words that you relate to or you’ve been in this place or you’re in a place like this right now–you’re not alone. And neither am I.

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Improving Access to Health Care for Autistic Adults

When I posted about my kidney infection saga last summer, a lot of you shared similar stories about difficulties with getting the right treatment for an illness.  Often the stories revolved around how hard it is to get proper diagnosis and treatment when your body and brain are atypical in ways that a lot of doctors are not used to seeing. There were a few themes from that post that stayed with me:

  • We often have atypical symptoms and atypical reactions to medications
  • We often have difficulty describing our pain, symptoms or illness in a way that doctors understand
  • Many of us have had bad experiences with the medical system because of communication barriers or the way we experience our bodies
  • Sensory sensitivities, communication barriers and bad past experiences can cause us to avoid seeking out medical care when we need it

Today’s post at Autism Women’s Network touches on all of these issues plus a few more that I’ve encountered in reading other autistic adults’ experiences: Accessible Health Care for Autistic Adults

In an ideal world, health care providers would receive training in making care more accessible to autistic adults, and maybe that will be the case in the future. Until then, those of us who feel comfortable doing so have some self-advocacy options:

  • Ask our health care providers for the accommodations that we need to make care more effective. This is a hard one because there is an inherent power differential in the doctor-patient relationship. Sharing general information articles like today’s AWN post and the information for providers at the AASPIRE website can be a good way to start a conversation.
  • Share information about doctors who are autistic-patient-friendly. AWN is creating a crowdsourced directory for women’s healthcare providers which is a great way of making information available to a larger number of people. Within the autistic community, there is also the opportunity for informal sharing among people who live in the same city or community.
  • Take advantage of resources like a personalized AASPIRE report to share our specific needs with doctors we see regularly. The AASPIRE reports are very detailed and probably beyond the scope of a short one-time visit to a new doctor, but they could play an important role in an ongoing doctor-patient relationship.
  • Enlist allies. Sometimes medical appointments are more successful when we bring along an ally who can act as our cognitive interpreter or support person. This is especially true when an illness is interfering with our communication or decision-making abilities.

I’m sure I’ve missed things, both here and in the AWN article so, as always, I’m looking forward to your comments.