Susan's Blog

Saturday, January 4, 2014

Autism: Splitting Hairs or Refining our Understanding?

Is it splitting hairs to debate what we mean by “autism?” The other night I was at a party where there were many people with autism, and the conversation was around the demonization of autism. The whole thing began with a friend asking me to take a stand on Autism Speaks. I told her that I have some very good friends who work for Autism Speaks. I also have some dear friends who hate Autism Speaks. I have been in both camps. I was on an Autism Speaks subcommittee for a short time, and so back then I thought AS was doing a few good things. Before that, and since, I have heard far more criticisms of AS than positive comments. Mostly I hear that Autism Speaks, primarily Suzanne Wright, the AS co-founder, make some very devastating remarks about autism and completely refuse to see the richer complexity that is autism. She only sees the bad and difficult. She makes no room for the good, the interesting, the difference given to us by autism. The Autism Speaks anti-autism mantra is mostly polarizing and not at all productive. Particularly when we hear that only the tiniest percentage of their take goes to helping people with autism

What is the complexity I’m referring to? I am going to describe this dichotomy without judgment. My basic (oversimplified) explanation is about the rift between autism parents and autistics themselves. First of all, I need to say that they are often one and the same. You can be both. Perhaps more often than not, autism parents are autistic themselves. But that’s just one point here. The rift is not about that, it’s about recognizing the difficult — sometimes soul-sucking — aspects of caring for an autistic person who has many challenging needs. Usually, autism parents will mean things like their autistic child wears diapers way beyond the usual age, or that they smear feces, or that they are aggressive, or that they are completely out of it, unable to communicate. These parents’ lives are hard and sometimes full of despair. Their autistic children’s lives might be as well — if they are aggressive it is because they are trying to communicate something important, like they are in pain, sick, frustrated, uncomfortably overstimulated, and other reasons that bear exploration.

The autistic adults who can communicate often tell me that yes, they have a disability. More often, though, they describe themselves as having a difference. They use the word “difference” because it does not have the negative baggage of the word disability. It has no implication of disease, illness, or of something being wrong. They do not deny that some parents of autistics have a lot of difficult and painful stuff to deal with in caring for their children. But they deny that this is what autism is.

If you begin to see autism as a neurological difference, rather than a harmful disgusting disability, you start to feel proud of your autism. Or at least accepting of it. Or perhaps you would feel proud if society, Autism Speaks, and the DSM would let you!  It’s as if the word has been ruined by society — people like Suzanne Wright — lumping aspects of autism –  sensory overload, communication trouble, social deficits — with aspects that can be experienced around autism (like resorting to aggression or fecal smearing or cognitive delay). The autistic adults I have spoken to often feel that it is autism that gives them particular skills, talents, insights that other non-autistics do not have. They say that the difficulties in their lives due to autism are the things they want to change. But they do not blame autism in general. I think people use the words “co-morbid symptoms of autism” in this case.

What’s happening here is not hair-splitting. It is separating out very carefully the aspects of having autism are the parts we would like to improve. But the difference aspects of autism are the parts we should not dismiss, and in many cases, we should illuminate, explore, and honor.

6 comments

Yes, once you redefine the word “autism” so that all of the “problematic” behaviors are “co-morbid symptoms” instead of a core part of autism and add in a bunch of things that you like about yourself in their place, then sure, autism is just a difference.

Yes, anybody who has had the label “autism” applied to them should be allowed to redefine the entire label for everyone. Never mind the unimportant little detail that the new traits that have been assigned to “autism” have very little to do with what autism is and have not been shown to even to related to “autism” in general. If a person has “autism”, or thinks they do, then they should be allowed to define what the word means and control what other people think or say about the condition.

Or maybe that isn’t such a good idea. Maybe people should realize that they are so much more than a medical label and lean to take pride in themselves. It isn’t Suzanne Wright or Autism Speaks that is stopping them from feeling good about themselves, it is their own decision to claim “autism” as an identity.

I would also add one other facet of the problem that you didn’t cover and that is what the idea that autism is just a difference does to the people who aren’t as “high functioning”.

When a person dismisses the very real problems of the “lower functioning” as “co-morbid” they are basically denying that they problems these people have are because of their autism. They are trying to make the conversation about “autism” focus on what they need it to be about.

Which might not be a problem if the “lower functioning” were able to advocate for themselves and have a conversation about what their “autism” means to them. But, as I am sure you know, they typically can’t and the job of advocating on their behalf falls to their parents or guardians.

— added by M.J. on Sunday, January 5, 2014 at 10:21 am

MJ I’m having trouble getting my mind around your comment. You don’t state what your interest is in this conversation, and your words come across to me as being very angry. I infer from what you say that you are a “parent or guardian” of an autistic person who you feel cannot advocate for themself [yes, I know, not a word, but it works for me].

You mention “co-morbid symptoms” and I know that you are just quoting Susan, but I dislike this phrase on two counts. I don’t believe autism has “symptoms” because that implies it is a disease. As an autistic person, I wish to move away from this kind of “medical model” terminology. So there may be “behaviors” or “features” that are associated (co-occurring) with autism, but they are not “co-morbid” because autism is not morbid.

And I also think that Susan is not trying to “redefine the word” as you accuse her of, but she is trying to understand what is meant by the label. The rest of your rant is a bit hard for me to understand. You talk about “new traits” for example. What are those? Who is “assigning” them? It’s all very vague.

You then segue into a discussion of “high” and “lower” functioning autism. Traditionally, these labels have been used to distinguish between autistic people who have average or above intelligence and those who do not. I’m not sure what that has to do with the idea of thinking about autism as a difference and not as a defect or disorder, which is what I think this blog post was about.

You clearly have an agenda of some kind, but your argument is lost on me I’m afraid. Maybe you’d like to clarify, or maybe you were just letting off steam and it doesn’t really matter.

— added by Michael Forbes Wilcox on Sunday, January 5, 2014 at 5:26 pm

I read the link to her post that makes the comments that sound devastating to you. What was the devastating part? I will clearly indicate that I tend lack the ability to grasp the best way to phrase things so that I don’t tick people off, but honestly, her statements about the kids were dead on for me.

I am bleaching feces out of my towels because our child chooses to use a fluffy white towel rather than toilet paper. I cringe from doctors scales because our son eats constantly and I can’t keep him out of the fridge. He gets right up in my face and screams at me and I am wondering what’s going to happen when he’s taller than I am. There’s more, but you know what I mean.

I love you Susan and I love your compassion and your take on autism, I just need to understand this better and maybe it’s because I am so sleep-deprived, but I can’t seem to even follow the language in the comments. It’s like I am listening to professors talk and I can’t follow it. Can you guys bring it down to my level?

When I have to, I call Charlie mid-functioning classic autism with aggression. No one really knows what that means, but I hope that it might mean something to someone so that the might say, hey, cut her a break, she’s got a plate full.

And we do need a plan for the future, because if school age services suck as bad elsewhere as they do in Pittsburgh, then I hate to think what post 21 is going to be like.

— added by JanB on Monday, January 6, 2014 at 11:41 am

Oh, and Michael and MJ, my head exploded from your usage of quotes.

I went back and re-read your post. Yes. I agree that my son has some attributes that are absolutely wonderful. I do believe that autism is a evolutionary curve toward higher mental functioning, a higher functioning of all senses at once or an amplification of specific senses.

But I do believe that those individuals who are highly affected and unable to live independently because of their autism, should be offered ways to help them bridge between the NT world and theirs – whether medical, behavioral or emotional support.

Offered. Not forced.

I was recently speaking with a man who is 85 and has a 57 year old son with severe autism. He put it bluntly. He said that the world lacking supports for our kids. He said the F word and I agree with him.

I don’t know if my words make sense or not, but there it is.

— added by JanB on Monday, January 6, 2014 at 11:49 am

Michael,

My interest in the conversation is that my three daughters have autism, a fact that is quite easy to find out if you were curious.

I am not “very angry”, “ranting”, nor do I have an “agenda” but I do like how you went straight for character attacks. I do, however, have a strong opinion on the subject that comes in large part from interactions with people who try to redefine what the word “autism” means.

I would like to thank you for demonstrating the exact attitude that I find problematic. You don’t like talking about “symptoms” of autism but the word “autism” is defined to be a development disorder. If you want to move away from the medical terminology then I suggest you towards a word that isn’t a medical term.

You may or may not realize it, but it is the medical aspect of the term that drives research into the causes and nature of autism as well as providing access to essential therapies and services. If you successfully removed the medical part then you will remove the access to treatments and services that depend on having a diagnosis of autism.

— added by M.J on Monday, January 6, 2014 at 6:12 pm

Either such things as smearing feces are symptoms of autism, or they are not.

If they are symptoms of the condition itself —
• why do so many of us autistics _not_ have some/any/all of those particular symptoms? (or, in many cases, outgrow those symptoms while remaining autistic?)
• why not research what makes the difference, so that autistics who also smear feces (or whatever) can be better helped to become those who don’t?

If such things are _not_ symptoms of autism —
• why not research what is causing so many of us (autistics) to also have those other problems?

Imagine (after all) what would happen if some large number of people with diabetes — of dyslexia — or color-blindness — or a need for eyeglasses — or anything else — were observed to also be smearing feces, or failing to learn to speak, or other matters of similar gravity.
• First, there would be efforts to determine just how common this was: what percentage of the diagnosed group was doing it, versus what percentage of undiagnosed individuals and/or of Individuals with other diagnoses.
• Then, researchers and parents and others would try to find out just why so many (but _not_ all) of the diagnosed group was doing it, in hopes that whatever kept some of them free from this problem could also be made to happen with those who were having the problem. Such research would NOT exclude as irrelevant the observations and experience of diagnosed people who had avoided/outgrown having the problem: rather, observation of such persons (as well as such persons’ own observations and suggestions) would be sought out — would be considered of probable high relevance to solving the problem.

Certainly, if some but NOT all diabetics (or dyslexics, or color-blind people) were additionally smearing feces, or not talking, or whatever, it would be difficult to regard those actions as central to diabetes, dyslexia, or color-blindness. It would be even more difficult to do so (no matter the numbers involved) if nobody as yet had even a hint of just how the condition’s central features caused those other features that were being equated with the condition itself. (If diabetes or dyslexia had been diagnostically equated with, say, mutism — just how MANY diabetics or dyslexics would have to speak before anyone doubted that equation?

— added by Kate Gladstone on Monday, January 6, 2014 at 9:52 pm