When Ian turned 2-1/2, we knew that something wasn’t right. He only said a handful of words. Ian’s trouble with talking and his poor control of his mouth (he couldn’t blow out the candles on his birthday cake) was always the hugest aspect of his disability. Unlike other kids with autism, he never hand flapped or had restricted interests. He was always warm and affectionate. But other hallmarks of autism showed up later. He began reading at age 3. He had unusual fears and OCD-like compulsion. And between 2 and 5, it became obvious that he was super, super sensitive to all sorts of input.
He couldn’t wear denim or long sleeved shirts. His ability to understand language completely disintegrated in a crowded room. In fact, crowded rooms and parties were downright torturous. Bright sunny days, the fuzzy static of a radio, faces that came too close, a scratchy kiss from Pop-Pop, the incense in church, the smell of a hot bowl of oatmeal — led to tears, gags, panic, and hysteria.
Other things he loved too much. One time, he refused to come out of the ball pit in the IKEA playroom. He was completely submerged in the red and blue balls. Just his little feet sticking up. I had to sign all sorts of wavers and then wade into the ball pit to yank him out. Ah, good times.
As Ian’s sensitivities appeared, I had no idea what to do. We hadn’t gotten an autism diagnosis yet, so I read the wrong things and got advice from all the wrong people. Should I force him to get used to these things or should I have pity on the kid? How much should we change our lives to cater to these sensitivity? Should we stop attending parties and extended family dinners? And try explaining to the grandmas why their grandson gagged at the sight of their dinner and why he wouldn’t put on the nice pants for Christmas. Yeah, it didn’t go over very well.
Until last year, the sensitivity aspects of autism wasn’t even a part of the official definition of the disorder, but if you talked to a parent of an autistic kid, you would get an earful. Yet another way that parents were miles ahead of scientists about autism.
Now, one scientist, who is also a parent of autistic child, writes that the super sensitivities of autistic children may be the root of the disorder. Henry Markham believes that autism isn’t due to cognitive deficits. It’s actually the result of a brain that works too well. It takes in too much emotion, memory, and sensation.
IMAGINE BEING BORN into a world of bewildering, inescapable sensory overload, like a visitor from a much darker, calmer, quieter planet. Your mother’s eyes: a strobe light. Your father’s voice: a growling jackhammer. That cute little onesie everyone thinks is so soft? Sandpaper with diamond grit. And what about all that cooing and affection? A barrage of chaotic, indecipherable input, a cacophony of raw, unfilterable data.
Just to survive, you’d need to be excellent at detecting any pattern you could find in the frightful and oppressive noise. To stay sane, you’d have to control as much as possible, developing a rigid focus on detail, routine and repetition. Systems in which specific inputs produce predictable outputs would be far more attractive than human beings, with their mystifying and inconsistent demands and their haphazard behavior.
This sensitivity is the key to other aspects of the autistic disability, according to Markham. The autistic infant shuts down in response to the over-stimulating world. He misses out on the critical stage of language development and is never able to catch up.
The Markhams think that one of the ways to treat autism is to provide super soothing environments to infants who have certain autistic risk factors. To give them another trimester to cook, but outside the womb. Maybe if autistic infants weren’t so traumatized by sensory input, they wouldn’t shut down and refuse to take in language input.
Sensory and language problems have always gone hand-in-hand with my son. Were the sensory problems the root of the language problems? I’m not sure. I know typical kids who have more sensitivities than Ian. Some kids survive on a diet of Cheerios and peanut butter sandwiches. The middle school boys walk down the street in shorts in the dead of winter. And they all talk. But perhaps all those sensitivities packaged up together is too much for some people. Small quirks are not a big deal, but too many and you shut down.
The good news about autism, at least Ian’s variety, is that sensitivity stuff goes away. He blends in just fine in family parties now. He doesn’t wear jeans yet, but he will wear his Christmas finest when required. He doesn’t bolt when taken to a parade with a loud marching band. With his earbuds in his iPod Shuffle, he listens to his custom-made mixes of music for hours.
Apt. 11d 
Thank you so much for sharing that link to the Markham article. It made so much sense in helping to explain what was going on with my kids. It also explained things like why my kids have perfect pitch and actually get headaches from our church choir, sometimes accompanied by nausea. (Yeah, they sing really out of tune.) My son goes to an arts high school and it’s kind of a joke at the high school that if they had a uniform it would be made out of velour because so many of the kids have sensory issues. I feel so bad now for all the times I insisted that they wear certain articles of clothing, get their hair cut, eat certain foods, etc. — at least with the first one. By the time our youngest rolled around, we basically just embraced her ‘quirks’ and didn’t fight so hard. I also wish I had had the guts to say no to things like baby enrichment classes, playgroups, etc. — or perhaps to admit that I was the one who needed the stimulation, therefore using the money for Gymboree for a babysitter so I could go out with my girlfriends and leave the kids home where they were much happier anyway.
I’ve been talking to my kids lately about whether or not they think they’ll ever outgrow any of this stuff. My son says that he doesn’t think he really has, but that he’s learned ways of compensating.
I also realized yesterday that the reason that I hate working out at the gym is because it’s loud, too hot, and the machines squeak. I realized I don’t actually hate exercise — I just have a lot of sensory issues associated with the gym. Thinking there’s probably a way to fix that now.
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I always feel terrible for kids with sensory issues – I can’t bear crowds and the idea of going to a dance club or noisy bar makes me want to hide in a closet.
But I’m a little dubious about the idea of sensitivities as the root of autism, because my son’s were always very mild (he’d leave the room if I vacuumed, but wouldn’t scream, was happy to wear or eat anything I gave him, etc) but his language was incredibly disordered, worse than that of mos of the kids I know with the life-limiting sensitivities.
It’s certainly worth studying.
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from an autism science point of view, Markham’s theory is not even half-baked, it hasn’t even finished rising. There are some nice-sounding ideas, but none of it has really been tested or stood up to scientific scrutiny. And it doesn’t really tell us what makes autism “autism” (and different to other developmental disorders).
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Tell us more ah -what is the current scientific view of what makes autism autism?
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Markram’s theories need to be taken with huge grains of salt (though potential a few fewer grains than theories like Baron Cohen’s “extreme male mind” theories).
The theories (and related ones) are a focus of study in the neuroscience community, though, because they offer ideas about physiological mechanisms. His “extreme sensitivity” competes with other physiological theories, like excess noise (all neurons have biological noise, in the same way that an amplifier might, and if the neuron is tuned differently, the neuron might be noiser, which might make it more sensitive, but might also produce other effects) v atypical connectivity (interactions among different groups of neurons, with the prevailing hypothesis that the autistic brain has stronger connections in smaller brain areas and weaker connections over longer distances) and are topics worth studying. They are also meaningfully different, from a research point of view, from the loci centered (i.e. a part of the brain works differently) or the more psychological descriptions (impairment in social behavior). But, the theories are also meaningfully different from one another, especially with regard to interventions.
So I like reading about the ideas (though I agree that they are splinter ideas right now, especially because the Markrams can be ideological in their advocacy of the theories and are publishing in a limited range of journals, which they have significant editorial roles in (though they are legitimate journals).
My worries are two fold when the ideas reach the popular press. First, some of the Markram ideas are “feel good” and provide an incentive for following one treatment plan over another (for example reducing input during a critical period, as opposed to, say behavioral therapy to encourage particular behaviors, or teaching to tolerate sensitivity). Without good scientific backing following the reduced sensitivity path (which might be easier, since a child might tolerate it more easy) might actually produce negative results.
Say in Laura’s descriptions of her interactions with I, she says she used language repeatedly, even when the language didn’t seem to be working very well. That’s hard to do, while the approach of reducing noise/language/sensitivity might be easier to do. I’m inclined to believe that the approach of providing language is the one I’d support over providing less input (but, who knows, we know so little).
Second, I worry that the theories could encourage physiological therapies that are questionable (i.e medications, drugs, supplements, etc.).
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“Tell us more ah -what is the current scientific view of what makes autism autism?”
A loaded question, because the answer is that no one really knows, and that autism is a syndrome (which means it is defined by its symptoms).
The new DSM V definition requires 3 deficits in social communication (Social reciprocity, nonverbal communication, and relationships)as well as two symptoms in restricted interested/repetitive behaviors (with the second category including hyper-hypo sensitivity to sensory stimuli or excessive interest in sensory stimuli) (hyperfocus on a specific topic, physically repetitive behaviors, sensory hypersensitivty as examples).
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The height of Ian’s sensitivities were between age 4 and 8. I did the opposite of the reduced input approach. We brought him everywhere and I cooked normally. It wasn’t easy. I wiped up vomit off the dinner table more times than I can remember. I always pushed the envelope, but stopped when he couldn’t handle it. We turned down a lot of invitations to dinner and parties, mostly because I didn’t want the embarrassment of a kid gagging in someone else’s home.
Ian has made a huge improvement this year in every area. So much so that he’s not going to be an autistic-specific classroom next year. Why? I didn’t do anything differently at home. Age and the naturally growing brain could be one factor. Also, we moved him to a new program. This program isn’t devoted to the ABA approach. He is the highest functioning kid in the class, so he spends his whole day chatting with grown ups who adore him. While I”m not thrilled that Ian isn’t in a group of cognitive peers, he’s getting tons and tons of attention and massive emersion in langauge. The school district wants to reduce his speech therapy hours, because they say that he doesn’t need it anymore.
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Excellent news!
And I hope that there WERE dinners and parties with friends & family who understand Ian. The social isolation that occurs when you/your family differs from the norm is lonely.
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O, Laura, that is very good news. My heart thrills for you.
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Sending good vibes here. I still remember how excited I was when they told us our youngest didn’t need speech therapy anymore!
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