Motor Delays and Autism – And Seeking Competence

In the last week, there has been press about a study on very young autistic children. The study claims to show that both gross and fine motor skills are delayed in autistic children. This is neither a surprising finding nor a new finding – although looking at children this young (14 to 33 months!) may be. One does wonder how a 14 month old child can be diagnosed with autism.

A soccer (football) ball. This is something I could not interact with in any sort of interesting way. I still can't. Licensed GNU Free Documentation License 1.2. Credit goes to Sir James and Christopher Bruno via Wikimedia Commons.

A soccer (football) ball. This is something I could not interact with in any sort of interesting way. I still can’t.
Licensed GNU Free Documentation License 1.2. Credit goes to Sir James and Christopher Bruno via Wikimedia Commons.

But, regardless, it’s well known that autistics usually aren’t particularly athletic or coordinated. Certainly, not all autistics (there probably are autistic professional athletes), but enough of us are un-athletic and uncoordinated that it’s part of some diagnostic criteria.

For me, I know I can personally speak of two issues I have – the first is simply getting my body to do what I want it to do, in response to sensory input, fast enough.  That’s always been an issue, which I believe affects my fine motor skills in particular.  But my second issue is something I suspect may be less common among autistics (but certainly not unique to just me) – a general lack of any reasonable voluntary “fast twitch” type of muscle movement.

The first is why it took years for me to handle handwriting (I’ll note that when I started getting the hang of it and started learning cursive, I actually got rebuked by a teacher for learning a letter that I wasn’t formally taught yet – and people wonder why our education system stinks!).  The second is why, to this day, I can’t do anything that requires fast movement, even if it doesn’t also require processing lots of sensory input.  For instance, I can’t hit a punching bag hard or kick something hard.  I certainly can’t throw anything.  I was always last in my class for running.  I can’t jump high or long or whatever else.  Yet, at least for my lower body, it isn’t because I lack strength – I have very strong legs.  It’s because I can’t do anything with muscle movement quickly.  When you combine sensory processing and fast movement – hitting a ball with a baseball bat – I am hopeless (I’ve never done this – and I did try!).

There’s also a third issue – my upper body is extremely weak, and seems to resist muscle mass building (I spent three years lifting weights – never progressing on the upper body, despite good training advice and plenty of change in my lower body).

I was sort of lucky, in that I had lots of what would now probably be called sensory integration therapy as a child to help with coordination and such. I’m not sure how much it did or didn’t help me, but certainly I had lots of it. But they missed something: there were things I was good at.  I wasn’t miserable at everything, just miserable at pretty much everything you might do on recess or in physical education class.

But I was good at some things – I’ve always been good piloting pretty much any type of vehicle. It took me a while to learn how to ride a bicycle (probably because I believed people’s explanations on how to do it – which research has shown conclusively is generally not only hogwash, but which is actually impossible to do – read about countersteering – and never mind training wheels encourage this bad learning). And certainly with other vehicles, there was a learning curve – it’s complicated to learn to drive, for instance. But I learned at a fairly typical pace. And this is true with other vehicles too – I can do basic plane flight (and did a substantial portion of my flight training, but, sadly, ran out of money at that stage of my life!), motor boating, motorcycling, ATV riding, etc.  I can tow – and reverse – a trailer better then most people I know.  Obviously these things require motor skills.  So why can I do this?

Well, a lot of this is stuff that doesn’t require a lot of fast movement. That said, the countersteering movement needed on a bicycle or motorcycle is a pretty quick movement. But, in general, slow and smooth is better for these things. Sadly, I think the common expectation is that someone with poor coordination couldn’t possibly drive a car (and certainly couldn’t fly a plane!). This coordination thing is seen as a global sliding scale, applicable to all areas of coordination. Yet I remember learning to ride a motorcycle in motorcycle training – I had significantly less trouble than many of the other students, despite the fact that it was likely that every one of them would be rated as having more coordination than me, in a general sense.

My wife has a theory – and I have to agree: that we’re often good at things that people expect to need to be taught, but bad at discovering how to do things on our own that other people might learn “automatically.” Obviously, I know I can’t be taught some things, and I’ve also made plenty of discoveries – how to walk, for instance (I started walking at a very young age – the only milestone I met early).  Bicycling is another one that I learned by discovery on my own (much like most people do), albeit years slower than my peers (my peers figured out countersteering subconsciously, as I eventually did too, but it took a lot longer). But riding a motorcycle was a quick and easy process for me. So was learning the basics of flying a plane. I did better than average at both.  I could succeed – and actually get quite good at these things.

I think this is where the adults in my life failed when I was a child. There were things I was or could be good at. In Junior High, I remember running a mile and a half in a time that beat the vast majority of my classmates – as a result of personal conditioning I was doing at the time. I wasn’t the fastest kid, but I wasn’t the slowest either. Because the teacher was so used to seeing me in last place in everything, he actually accused me of cheating and made a point of counting laps the next time we ran (he found I was being honest; no, he didn’t bother apologizing). He assumed that because I couldn’t sprint, I couldn’t run longer distances – yet I had plenty of strength, endurance, and an efficient cardovascular system. I had what was needed for long distance running – not at a highly competitive level, but certainly substantially better than average. This was missed. So were so many other possible areas where I could be successful.

That’s part of my concern with the idea that autistics are just uncoordinated. Maybe we are. But that doesn’t mean that we are in everything. I would hope that when parents, teachers, and therapists work with us, they would not only look at our weaknesses, but also our strengths. For children with low confidence and too many failures, having an adult recognize someone’s strong abilities is important. Giving us a chance to, if not win, at least make a good showing is important. I was last in pretty much every sport – because the sports I was good at weren’t what we did in school. That sucks – it certainly (along with PE teachers that shouldn’t have been anywhere near a child) made me hate athletics with a passion.

Fortunately, I made these discoveries on my own – I do have skills that were unrecognized, and which I developed despite neglect by people who should have been able to see them. It’s my hope that one day it will be the goal of adults in the lives if children to not only find things where the autistic child does bad, but also find those areas to grow and nurture where there is natural talent and ability. There is a lot more here than too many adults & professionals think. And of course this is true well beyond simply athletic ability.

A Response to All the Quackery & BS in One Blog Entry

This post started because I realized I’d go to jail for cleansing colons. I saw one too many articles today about cleansing colons. My first thought was to go cleanse some people’s colons for publicizing this quack crap, but I’d probably end up in jail.

So I’m going to write instead. And it’s probably going to piss some people off. But, you know what? I’m sick of people messing with their kids’ bodies on the basis of instinct and what sounds good. Facts are not evil, people! When you have some facts, you should use them.

Sadly, the people doing the actual colon cleansing on innocent children get away with it, without jail.

So here’s my response, just in case anyone is curious about any of this.

First, your kid doesn’t need his colon cleansed.

Seriously. He doesn’t. No, he doesn’t. Yes, he has shit in his colon. You do too. But keep the shit in the colon and don’t replace your brains with shit. It’s supposed to be there! But you can read about the science of this here. Don’t have shit for brains. Keep it where it belongs.

Your kid doesn’t need a GF/CF Diet

Okay, if your kid really has celiac disease, certainly keep him on a GF diet (no need to do CF, however). For those not in the know, GF is “gluten free.” Gluten is found in pretty much all wheat and grains. Here’s a news flash: grains and wheats are good for you (unless you truly do have an allergy, and most of us don’t, autistic or not). It’s one of the key things that makes bread, well, bread.

CF is “casein free”. Casein is in milk and milk products. If your kid has a milk allergy (not noticed through behavior, but rather by things like a life threatening anaphylaxis reaction, hives, swelling in the lips and throat, etc), certainly don’t give the kid milk! But, again, milk is generally good for almost all autistic people.

Your kid almost certainly isn’t both gluten and casein allergic! If you have that rare kid, certainly, feed them whatever is left that doesn’t contain these things. But get a second opinion when deciding to alter your kid’s diet and restrict him to only a handful of things. The medical profession actually can diagnose this type of thing, so let them!

Now, lots of people say that removing G or C from a diet made their kids behave/communicate/toilet better (actually, it’s almost always both G and C). Science says bullshit in general.

You Don’t Need to be Perfect

Related to diets and such, one common quackery theme is that even one particle of contamination (where contamination is something natural in food, like gluten) will cause your kid to regress. The theory is basically that this seed of evil will germinate inside your kid and destroy him, without another cleansing/chelation/etc treatment.

So, if the treatment doesn’t help, guess what the problem is…if you guess YOU, you guessed right! You probably missed some infinitesimal seed of gluten. You didn’t do it good enough. The diet is fine. It’s you that’s a failure.

Again, that’s bullshit. One microgram of wheat will not hurt your kid.

But putting your kid on an extremely restrictive diet (how many food items can you name without milk or wheat or grain) is not good. It’s a lot harder to make a balanced diet when you cut out whole food groups – especially if your kid is a picky eater. Heck, plenty of autistics practically live on pizza. I’ve tried GF/CF pizza. Never again.

Shots don’t Give Mercury Poisoning

I’m not going to bother to support my argument, not because I can’t, but because thousands of other people have done so online, who have a lot better medical knowledge than you or I do.

Vaccinations are safe.  Period.  You are rejecting science if you don’t believe this.

Vaccinations also keep your kid well.  Despite the garbage to the contrary, it is good for your kid to be well.

Mercury Poisoning is Nothing Like Autism

Despite a published list a few years ago by some quacks that compares “symptoms of mercury poisoning” to “symptoms of autism,” the symptoms are not even close to the same. Mercury poisoning affects the skin and, particularly, the eyes in addition to the brain. If your doctor can’t tell the difference, you need a different doctor.

You Don’t Need to Ingest Metal

No, gold dust, gold pellets, and gold salts are not helpful. If you want gold, stick to jewelry that you like the look of. After all, it’s not even that great of an investment. But I’ll guarantee it’s a better investment as a coin or jewelry than ending up down the toilet.

Nor do You Need to Chelate Metal!

When the quacks aren’t trying to get people to take metal, they chelate them. Again, mercury isn’t autism, but plenty of quacks convince people it is. In the process, they suggest things like chelation – a process that is designed to remove metals from the body. One particularly scary treatment is EDTA chelation. Like most autism-related quackery things, it’s also a sold as quackery to cancer patients – so the American Cancer Society says some things about it, including:

Available scientific evidence does not support claims that chelation therapy is a safe treatment for any type of cancer. Chelation therapy may produce toxic effects, including kidney damage, irregular heart beat, and swelling of the veins. It may also cause nausea, vomiting, diarrhea, and temporary lowering of blood pressure. Since the therapy removes minerals from the body, there is a risk of developing low calcium levels (hypocalcemia) and bone damage. Chelation therapy may also impair the immune system and decrease the body’s ability to produce insulin. People may also feel pain at the site of the EDTA injection. Chelation therapy may be dangerous in people with kidney disease, liver disease, or bleeding disorders. Women who are pregnant or breastfeeding should not use this method.

Chelation therapy is often given along with large doses of vitamins and other minerals, which may actually contribute to the processes that produce dangerous free radicals in the body. Loss of zinc can also lead to mutations in cells. For this reason, chelation therapy may actually increase the risk of cancer.

In other words, this is not something to do to your kid, except in one circumstance: if you have solid proof your child has heavy metal poisoning. Note, again, that would never be confused with autism by anyone in the slightest bit competent. It has enough side-effects, I’d make sure to get a second opinion from another mainstream doctor, and then I would make sure that the facility where it is done can respond to the life-threatening emergencies (such as heart failure) that may occur.

But, again, it doesn’t do shit for autism.

Enema – More Shit Problems

Again, related to colon cleansing, this generally shouldn’t be a routine procedure for people! It can help with constipation and it can help with getting rid of shit for a colonoscopy. Other than that, it doesn’t particularly help autistic people.

Even worse is when standard enema are replaced with – essentially – bleach. Do you really think exposing sensitive organs (the colon) to bleach is a good idea? It’s not. Even when it’s called something like Miracle Mineral Supplement (nor is MMS good ingested orally – go figure, drinking bleach is bad for you). Did I mention MMS supposedly treats cancer?

Protip: anything that treats both cancer and autism does neither; this goes double for anything that adds HIV to the mix of things it supposedly treats.

Ah, the Fascination with Shit

There’s a huge fascination with shit among quackery. There’s a lot of parents that have trouble toilet training their autistic children, so I can understand the focus on shit. But, at the same time, not being able to communicate to a person to teach toilet training does not mean that the person has a health condition in their gut. Nor does periodic bouts of diarrhea or constipation indicate general health issues – we all deal with this. But if it is frequent, definitely talk to a mainstream doctor about the condition. But you’re not dealing with autism, you’re dealing with something else.

There’s also difficulty autistics have processing sensory information and sometimes making motor movements, both of which are required for successful toilet training. Someone that is helping will know this and consider this, and not just radical diet changes without evidence of problems (other than stool).

Finally, stress messes up people’s guts. And plenty of autistic people have stressful lives, due to sensory issues, social expectations, and, sadly, some of the things people do to try to cure them. I don’t know much about toilet training, but I know that stressing out the kid doesn’t help. Go figure – stress doesn’t help with any kind of learning. Or health.

Oh, There’s More

Yes, there are other quackeries. I’m not going to get into some of the other ones now, as these were the ones that annoyed me today. Maybe you’ll see a second post later.

So What Can You Do?

In general, what you do for other kids. Feed them good food (not restricted diets only because the kid is autistic). Focus on things other than shit all the time (seriously!). Stay away from things that claim to cure cancer. Don’t think that there is some sort of secret knowledge that science and Big Pharma is hiding from you – there’s plenty of problems in our health care system and with corporate pharmaceuticals, but spreading autism isn’t one of them – and plenty of Big Pharma developed drugs are good and helpful, even life saving.

Realize there is no cure for autism. So instead of curing and overcoming, focus on ways you can raise your kid to be at the fullest of his autistic potential. Listen to him when he complains (with words or otherwise) of environmental stimulus (like sounds, tastes, etc). Try not to add to a stressful life!

Find your kid’s strengths and gifts. What does he do best? Did you know that research has shown that there are some brain functions that autistic people do really well, not just ones they do badly? Discover what is unique and wonderful about your child. Autism or not, he’s your child!

Some Insights from Autcom

I won’t write about all of the insights at Autcom that impacted me, but I will say that one part in particular Melanie Yergeau‘s presentation was creepy. Don’t misunderstand – Melanie gave a great presentation that was really insightful and interesting. She illustrated one of her points about how some uninformed outsiders “hack” autism by playing this video:

Of course any video that starts, “Autism Speaks wanted people to experience how this must truly feel for parents…”  Of course I could comment on the choice of an Asian child that looks unhappy as the example of autism by a group of almost-exclusively white upper middle class people viewing it – there are definite shades of racism and cultural bias. But even ignoring that, again, our parents are what is important. And apparently the problem isn’t that the girl seems unhappy, it’s that she doesn’t make eye contact. To make the parent feel good.

I didn’t actually think anything could lower my opinion of Autism Speaks as an organization. That was insight one: they are capable of new (to me) and surprising things.

You can look forward to me someday creating an autism simulation using a creepy white kid to stare you down no matter how you try to move out his creepy gaze.

Another insight was more personal, from Suzanne Oliver’s presentation. She’s a music therapist in the US who talked about the importance of rhythm in creating, stopping, or transitioning movement – and how some rhythms could enable an autistic person to move easier, while other rhythms might serve to trap a person in a sort of loop, and yet others might make it hard to move. She presented some research, which I wasn’t able to evaluate, so I’m not going to speak about the scientific basis of her theories – as I really don’t know one way or another about them.

What I will speak about is my personal experience, as an adult with autism. During her presentation, it “clicked” why I use my tablet-based AAC device so much less than my older keyboard-based devices. Certainly, being able to type at 100 WPM or faster makes me prefer keyboards, but there is more to that, and I think it’s applicable to other autistic people too. I set my tablet to provide a short vibration when I tap a key, but not to provide auditory feedback which I believed would disturb other people (probably true).

However, after listening to Suzanne’s presentation, I had an “Ah Ha!” moment. I learned to type on a real IBM keyboard – the kind you could hear three classrooms down the hall when the strong, real, “click” was heard.  Like this video:

This was when keyboards were keyboards.

I’ve never been able to type as fast on newer keyboards, but I never really thought much about why. But I think I know – for whatever reason, the clicks provide that feedback to get the next button pressed.

Sure enough, I tried it at Autcom – I turned on key clicks on my tablet, and sure enough I found not only could I type easier, but I could also think of my next word and thought easier. I could communicate better.

Is it placebo effect? Maybe. Is it something where the keypress rhythm is stimulating my mind in a better way? Maybe. I don’t know. All I know is that I was able to say what I was thinking again, using typing, in a way that I can’t as easily with speech. And I thought I had lost that when I converted to a tablet device. That’s pretty exciting. Being able to say what you think again is exciting! And I think Suzanne is onto something real.

It was also great to see some of my online Facebook friends and people whose writings I really admire.

So, overall it was a good time. Sure, there were moments that weren’t so good, but I won’t get into those right now. Right now, I’ll focus on how to build my creepy staring child simulator and how I might be able to actually use AAC again!

Three Things You Don’t Know about Sensory Differences

Okay, maybe you do know these things! But I didn’t until college, and I still don’t see them talked about. So, here’s what I learned – which helped me cope with life. I’ll assume my readers know autism affects senses significantly, even if it’s often ignored in the diagnostic criteria.

1. First, there’s not just five senses! Sure, there’s touch, smell, taste (closely related to smell), sight, and hearing. But there is also things like the position of our body in space, our sense of hunger and thirst, knowing how the parts of our body are positioned (proprioception), sense of time, and others. Even senses that seem related aren’t necessarily – for instance, the feeling of pressure, temperature, and itch are actually distinct senses (heck, even pressure isn’t one sense, but at least two – light touch is processed distinctly different than deep pressure)! Any of these can be affected by autism or other neurological differences. For me, my internal body senses (Am I hot or cold? Am I hungry? Am I sick?) and proprioception are generally weak, but other senses are significantly more sensitive (light touch). Others might have more impact to their sense of time (common with ADHD), taste, etc. It’s important when looking into your own sensory processing (or that of a loved one) that you consider not just the senses you learned about in elementary school, but also all the other senses and their intricacies – and to remember one might be affected yet another might be typical.

2. There’s a difference between sensitivity and registration. For instance, a sound might affect an autistic person differently than a non-autistic person, because it causes the autistic person pain (and doesn’t do that for most non-autistic people). Yet, at the same time, this person who is in pain doesn’t always react to the sound. So an outside observer might conclude, “This person isn’t really in pain, because they would always be in pain when this sound was present if it was real. They are manipulative.” That’s not true! It’s possible for someone to be pain-sensitive to sounds, yet also have low registration. In other words, the sound really isn’t painful until it’s noticed, and the person may even have a harder time actually noticing the sound! This is not manipulation or deceit. Rather, it’s the way some people’s senses work. The converse is also true – someone might be high registration and notice things few others do. But registration and sensitivity are not the same thing – one is the sense reaching a threshold of affecting the person, the other is how much it affects the person.

3. Senses don’t always work in the way an observer would expect. I was thinking about this during the week, when I was riding a motorcycle. Why can I do that without problem, but I can’t help but bang into a table when I walk through my living room? It’s actually not complex, but it’s also not obvious. I have trouble with the sense of proprioception – knowing where my body is in space. Obviously, that’s important when walking around your living room if you don’t want to bang into things! It’s also important on a motorcycle, as you need to have a strong connection to the environment – and the positions of your body parts is pretty important for that! So, why can I do one, but not the other? It’s simple: I get lots of feedback from the motorcycle. It’s vibrating, I feel the wind, there’s bumps in the road, etc. In other words, I get lots of input – and with that input, I know where all the parts of my body are within space. Walking through the living room, I don’t get that input. So I knock over the coffee table! I suspect if we put my living room on giant springs, I’d be fine. But it’s not. So I’ll keep banging into things. But this is the important thing to realize: someone might see someone that walks awkwardly through their house and think, “The last place they need to be is on a motorcycle. They get hurt just walking. I can’t imagine what will happen on a bike.” They would be wrong, though – it turns out the bike may be safer than walking, because I get the input into my body to know where everything is. In a way, a motorcycle is assistive technology!

That’s in fact the key to all three points: how people interpret the world through their senses is not necessarily easy to understand, obvious, or predictable. But that doesn’t mean it’s not real.

Mugged by Sound – from NPR

A Facebook friend shared an NPR story (and the video I’m commenting on) about a fictional autistic boy dealing with the noise of his city.

I’ve linked the video here as well:

I’m sure there are a lot of autistic people who can’t relate to that video, but I definitely can relate to some of it.  That said, I do think my own audio processing difficulties are a but nuanced and that an overly simplified view of this can confuse people who expect it to be a simple matter of noise.

It’s not about noise, or volume.  It’s about energy levels.  It’s about what I’m doing at the time.  It’s about whether or not there is “information content” in the noise.  It’s about whether or not I’ve had a break or have a sanctuary from the noise.

I don’t mind noise.  I do some noisy things, like riding a motorcycle.  I don’t mind power tools or a load air conditioner – at least most of the time.  But I do need a place that is safe to retreat to, which means less noise.  Even routine noises – like those depicted in the video – can drain people (and, from research and observations of others, I don’t think autistic people are unique here, even if the magnitude of our drain is different).  I can deal with noisy crowds in cities or airports with earplugs – that extends my energy significantly.

I can also deal with short-duration noises.  Someone running water for 20 seconds is fine.  Someone running water for 10 minutes can, if I’m not ready for it, or if I’m trying to do anything (such as read, watch TV, etc), is overwhelming.  The same with noises like that of a spool scraping against a bowl – a few scrapes are no big deal.  But if there is 10 minutes of scraping and I’m crawling up walls.

Layers of noise are a problem, particularly when there is information content in the layers.  By “information content,” I mean that there is some sort of meaning – it’s not just noise.  Music and talking have information content.  The sound of traffic generally doesn’t.  So, a restaurant with loud music and tons of people talking to each other is horrible.  But another restaurant with the sound of loud traffic – even if it’s the same volume – is not.  There’s something about the information trying to grab my attention, so when there is multiple sources of information – even sources I’m not particularly interested in, my attention is yanked every which way which is simply exhausting.

I need breaks occasionally.  When I’m listening to, for instance, a lecture, I can handle this if there’s some back-and-forth, some delay, something to give pause between points.  I probably am very similar to someone with ADD in this regard – short, clear points are fine, but a long complicated point without a map can be a problem.  A large part of this is my very poor working memory – I simply can’t hold much in that working memory  so hearing 200 details together to synthesize the whole in a lecture isn’t nearly as effective for me as hearing about the whole first, then hearing each of the 200 details individually.  You want me to do well in your lecture class?  Give me an outline before the lecture!  I suspect that’s one reason I don’t have the ability to keep up with social dynamics in groups – it’s all about the details and you’re left to your own to somehow juggle thousands of individual details to synthesize a whole.

Certain sounds when I make them are fine, but not when others make them.  When I make them, I can stop anytime.  I’m not trapped by the sound.  I can escape.  But that same sound made by someone else, doing nothing differently than I did, can be extremely overloading.  The keys are duration of the sound, my energy level, what I’m doing at the time, other sounds simultaneously occurring, and my ability to escape the situation.  Volume level has relatively little to do with it, although certainly the louder the sounds are, the worse this is.

Some examples – I already mentioned motorcycle riding.  Hearing the wind noise at 80 MPH is no big deal, even combined with traffic and maybe some music.  I encounter few things in life that are this loud.  But I can handle it fine, even enjoy it.  The only information content is the music (note I’m not saying the traffic noise doesn’t cue me into what is going on around me, but it doesn’t have the same type of information content).

I can operate power tools all day, even loud ones.  That doesn’t bother me in the least.

Every year at Autreat – an environment where people have a greater understanding of sensory issues, however, I face challenges.  This proves the point that one autistic’s differences don’t necessarily match those of another autistic.  Inevitably, there’s a crowd gathered near the sign-in table.  Typically there are several groups of people, all very (understandably) excited to see each other, so there’s typically a lot of volume in the side-conversations – sometimes even nearly (or actually!) screaming.  It takes every bit of my strength and self-control to walk through the room to the table, say my name, and get my registration items.  The reason is that there is information content in those conversations.  Even though I very likely can’t hear the conversations well enough to understand the words, my mind tries – whether I want it to or not.  This is pretty much the sound that is the absolute worst for me, and every year I experience at Autreat one of the worst assaults on my senses!  Of course there are other things going on too – typically there’s a bit of chaos rather than order (the registration might be late, or something may be missing, or someone at the table might not know how to do something).  I might also want to say hi to people and greet them, so I’m trying to do something different than what I’d normally do in such a situation, and I stick around.  And, importantly, I’m typically rather worn out after traveling, so I’m “out of spoons”.  Together, this makes it a huge, overloading, draining, exhausting, and painful time (I would definitely prefer a root canal as far as pain level!).  But clearly not every autistic feels that way, since typically it’s other autistics making the noise!  We are all different, after all!

In the Autreat case, another factor is not being able to escape.  There are two parts to this – firstly, I can’t escape because I need to register to attend Autreat, something I very much want to do.  So I want to get it over with – it’s not going to be easier in an hour, so I want to get through the stress as soon as possible.  Second, escape isn’t just hindered by external requirements or environment.  It’s also hindered by internal desires and feelings.  In some situations, escape may draw unwanted attention to me – probably not at Autreat though.  At Autreat, the motivation is still internal: I want to interact with people, I want to see people, I want to meet people.  And if I escape to my room, that’s impossible.  Sometimes I get lucky and someone there who knows me already recognizes what is going on, and we leave the room together somewhere at their suggestion – then I get the human contact I’m seeking and get to escape!  But of course asking for this is something that also hits internal barriers, which is why it needs to be at the other person’s suggestion – simply asking “can we go talk somewhere quietly” is expressing the very thing that makes me vulnerable.  When you grow up abused, you learn not to speak your vulnerabilities.

So it’s not about Autreat being a horrible environment or anything like that.  It’s about the complex interaction between the environment at Autreat and my characteristics, some of which are autistic, some of which are part of being an abuse survivor  some of which are energy and ability level at the time, some of which are internal motivations, some of which are just plain the way I am.

That’s part of what makes this hard for people to understand.  It’s not as simple as “Joel is autistic and dislikes noise.”  It’s “Joel has sound sensitivities which are subtle and unique, and not just like that autistic boy in your kid’s school.”  Because it’s unique, and because it’s seemingly contradictory and manipulative.  For instance, if someone is talking during a church sermon, it can be very overloading, even if they are very quiet.  But the reaction I get, even if it’s not spoken so plainly, if I express this is, “You don’t mind hearing that power tool, but a little bit of whispered conversation in church causes you to go into overload?  You just want to control the situation!”  Yes, control is part of it – control makes things easier to handle, for sure.  Because with control, there’s the removal of the stress of not knowing how to escape.  But this gets mistaken for manipulation:

This gives us one of Joel’s Laws:

 Any difficulty someone has that is not immediately understandable by another person is called “manipulation.”

Sure, autistic people can be manipulative.  Of course!  But just because someone wants something changed doesn’t mean they have a sinister motive.  They really might be suffering in a way that you don’t understand.