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Oct8
Mild Autism? I Think Not!
11 CommentsNow that the CDC has officially revised its figures concerning the number of autistic children in the US, I’ve read more than my usual share of maddening articles on the subject.
For those of you who very wisely protect your sanity by staying away from as many news sources as possible, the new data shows that 1% of American children are autistic—which, by no small coincidence, mirrors a recent study showing that 1% of adults in the UK are autistic. Of course, that 1% figure appearing in two different studies must be a coincidence. It’s only my tragically broken autistic mind that impels me to point out that our adult autistic friends across the pond were once little autistic children across the pond, and that when they were little autistic children, they made up 1% of the human beings who had not yet become adults. It’s amazing, I think, and a testimony to the insular thinking of the average American, that those 1 in 100 adults in the UK are not considered the hapless victims of a tragic epidemic that took place a generation ago, but that those 1 in 100 American children today are proof positive that a terrible disease is sweeping our country.
To read most of what passes for journalism lately, you’d think that autism was almost completely unknown in my generation. And perhaps it was. After all, I’m autistic, and no one knew. Wait a minute! Could that be it? Is it possible that so many of us were left undiagnosed? Is it possible that we were simply dumped into the absurd categories of ”Model Student,” “Lazy Daydreamer,” and “Behavioral Nightmare”? Is it possible that no one knew why some of us were sitting quietly in school, staring vacantly, or politely pretending to attend to the lesson, while others of us were jumping out of our chairs every few minutes and disrupting everything?
No one, it seems, wants to believe that we were once autistic children. No one, it seems, wants to admit that so many of us have spent so much of our lives struggling along, not understanding why we can’t quite connect with most other human beings on the planet. They do not want to think about it. When you raise the issue, they dismiss us by saying that our autism is not like the autism of today. Oh, no. Our autism, they tell us, is “mild autism.” It makes us a little eccentric and socially awkward. In fact, they tell us, someday soon, we’ll be given a whole other trendy diagnosis, and then they won’t even have to think about us at all.
To such people, I can only say: There is no such thing as mild autism. It doesn’t exist. Saying that someone is mildly autistic is like saying that someone is mildly pregnant or mildly brilliant. Some words just don’t take well to modifiers. I know that people like to distinguish between “high-functioning” and “low-functioning” autism, but those categories have become meaningless to me. The only distinction I can make anymore is between the following two types of autism:
Category 1 Autism: The kind that some people like to think they understand. We verbal folks who can pass for neuro-typical have Category 1 Autism.
Category 2 Autism: The kind that most people have decided that they will never understand. Our nonverbal friends, who will never pass for neuro-typical, have Category 2 Autism.
Today, I had the great good fortune to be an autistic person from Category 1, holding the hand of an autistic person from Category 2, and taking a long walk through my neighborhood. It was a very interesting experience. The differences between the two of us were apparent to outside observers, I’m sure, but I was most struck by the similarities between us:
a) She does patterns by moving her fingers. I wasn’t able to figure out her patterns from holding her hand, but they were definitely there.
b) Her eyes take in everything.
c) She rocks to self regulate.
d) She orders things in her own patterns when no one else even notices that they’re out of place.
e) She touches things randomly when she walks (cars, trash cans, what-have-you) in order to ground herself.
f) She stops and stares at things that others don’t consider important.
g) She doesn’t look at people who are coming down the street toward her. (I avert my gaze, while she closes her eyes.)
h) She likes to hold a familiar item in her hand and grasp it firmly.Most people undoubtedly perceived me as “semi-normal” and “aware.” (If it weren’t for my headset, I’d look totally normal, but I’m bored with that, so who cares?) I’m also certain that most people saw my friend as “abnormal” and “out of it.” But that’s just perception. Most people cannot feel how flooded we are by the sensory world. They cannot know how acute and how challenging our sensitivities are. They also cannot know that we both laugh, cry, and live with people who love us for who we are. They cannot know that my Category 1 Autism is more difficult than they will ever understand, and that her Category 2 Autism is not the disaster they think it is.
They can’t know, because they can only see us from the outside. They can listen and learn, but that takes a willingness to believe that there are more ways of seeing than they’ve ever suspected. I’m not sure that most people can do it. I’m grateful for the ones who try.
© 2009 by Rachel Cohen-Rottenberg
11 Responses to “Mild Autism? I Think Not!”
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Very nice post. Thanks.
I like your description of the Categories.and especially, “They cannot know how acute and how challenging our sensitivities are…. They cannot know that my Category 1 Autism is more difficult than they will ever understand, and that her Category 2 Autism is not the disaster they think it is.” -
Rachel,
I’ve been searching for some time for words that describe this sort of difference in understanding between those with autism and those without it. I’ve been looking for words that I could point those without autism to simply say, “Autism isn’t the way you think it is, and here’s why”.
I’ve tried a few times to write the words myself, but have never come up with something that feels like it might work.This post, however is wonderful. It brilliantly captures the experience from the perspective of autism, yet presents it in a way that I believe would speak to those who don’t have it.
I may well point a few NT people this way in an effort to explain myself to them.
Thanks,
James
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Melissa October 9th, 2009 at 2:47 pm
You are so dead on!
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That is beautiful
I am so glad you got the experience to be with this person! And to write abotu it. -
This is a great post. As someone above mentioned, I have tried many times to articulate this as well, to no avail. You managed to do so brilliantly. Thank you.
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A wonderful read. You somehow managed to capture those intangible emotions we experience into a beautiful experience. It’s encouraging to know that we don’t have to take these sensations as something for granted – they are here for us to experience, and they provide a wonderful additional sensation! Thanks so much
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Fantastic post. No, people don’t seem to make the connection that autistic adults were once autistic children. As an aspie who wa not diagnosed until I was 30, I will never tell my family that I am autistic, for the simple fact that they will never be able to accept that I was an autistic child. (Looking back post diagnosis, it’s pretty obvious I have always been autistic, but my family wouldn’t acknowledge it.)
I’m glad you enjoyed your time with your non-verbal friend. No, most people don’t understand that there is more to the world than their own meagre experiences and senses tell them. There seems to be a scare campaign going on to warn the world of the terrors of autism, but you’re right, there’s so much that goes on in the minds behind the faces we see.
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Hi Adah, thanks for comment and welcome!
I can relate to what you say about the denial of family members. Were my parents still alive, they would not believe that I am autistic, no matter how many specialists I lined up to tell them so. I was the “perfect child” in the family—i.e. I was extremely compliant and I did well in school—and it would be difficult for them to see me as anything else. They wouldn’t understand that being compliant and following the rules were my ways of trying to be safe and fit into some sort of structure.
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I really like your site. It has helped me to begin to understand what our foster daughter might be going through. She is autistic and has meltdowns often. She has a meltdown when we can’t figure out what she wants. She does not speak and forgets her sign language. She can “copy” signs sometimes and other times she uses them correctly. Just this morning she was hungry so she climbed up into her chair and gave my husband the sign for pancake. We are not really sure if she wanted a pancake but she didn’t cry when he gave her one. By the way, she’s 4 yrs old and has been with us for about 3 months. I have been reading everything I can on autism and talking with my sister-in-law who has a child with Aspergers. The most helpful are the blog by people with autism. I can’t imagine her typing but maybe someday she will. I would like her to be able to communicate somehow.
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Hi Mickey, I’m glad you’re finding my blog so helpful.
It must be very frustrating for your foster daughter not to be able to make herself understood. Hopefully, with the stability and consistency of your home, her communication skills will improve over time. If you want to read a great blog by a “low-functioning” (and very brilliant) autistic woman, see Amanda Baggs’ blog at http://ballastexistenz.autistics.org/.
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Taylor Selseth October 27th, 2009 at 4:36 pm
I can never understand why the hysterical people pushing the “autism epidemic nonsense” simply don’t get it when I given them facts. On a left-wing message board I frequent several anti-vaccine nuts kept on dogmatically asserting “where were all the autistic people 30 years ago?” even after I pointed out that they were diagnosed as “mentally retarded”, were undiagnosed, were misdiagnosed, were left hidden away in mental institutions to rot, etc. in the past.
It’s like talking to a wall. And they accuse ME of being close-minded?
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