I’ve been thinking about this question in the wake of the Polling case at the Vaccine Court, especially with all the discussion around the term “autism-like symptoms”. In his post Reports of the debate’s death were greatly exaggerated, Wade Rankin echoes my initial thought that autism is, by its very definition, nothing more than a collection of “autism-like symptoms.” But is that really true?
And if it is, is there really something – one thing – that is “autism”? Or are there a lot of “autisms”?
As I hinted at a couple of days ago, I lean toward the latter. And I can’t help thinking that each of these autisms needs to be considered independently of the others. What may help in one group of cases – say ABA – may be catastrophic in other groups. A change in diet for one group may actually work, even if it can’t be repeated in another group. (I’m not even going to touch chelation, because I don’t believe that has any merit at all as a treatment for autism, along with any number of other snake oils.)
A much better discussion of this idea, especially what it means in terms of how autism(s) is (are) treated, can be found in Harold Doherty’s post Alex Plank with Aspergers Does Not Want To Be Cured But He Does Not Speak for My Son with Autistic Disorder. It reminds us that just as we want the world to remember that all autistic people are not the same, we need to remember that the needs and wants of all autistic people are not the same.
No single individual speaks for, or should pretend to speak for, all autistics.
11 thoughts on “What is autism?”
One of the problems we all have in trying to find common ground in these discussions is that there are as many “autisms” as there are autistic individuals. I have always maintained that there is no “one size fits all” solutions.
I tend to view “cure” as a process, rather than a result. The idea should be to treat underlying causes of “autism-like symptoms” if they are resulting in dysfunction. As you wrote, which interventions (or combinations of interventions) are appropriate in any case depends on the natire of the underlying causes, and that is likely to depend on individual. Although we disagree on the potential value of chelation, I would agree that the decision to chelate — and which chelation agent is appropriate — may not be made indiscriminately, and should have an objective basis and be carried out with the greatest of caution. But that’s true of any medical intervention.
None of us has the right to speak for all of us.
(Did I set the record for use of Quotation marks?)
Autism is a set of trajectories rather than a teleological state.
A set that can only exist within specific social contexts of the late twentieth century although the underlying processes of neurological variation have existed for a very long time.
Autism is at the end of the day, only what people decide to call autism.
It is like a river, you can never step into the same part twice as the definitions and explanations are constantly changing.
By the time we have finally resolved the equations, and can say “this is autism” it will no longer be autism but something else.
DSM V is eagerly awaited ………
One could likewise say there is no art only artists couldn’t one.
Why did I call my video, whichever way you look at it, it’s still autism?
So maybe the place to start in all this is for those with supposed vaccine issues is to drop the term ‘autism’ from their diagnosis listing?
…No single individual speaks for, or should pretend to speak for, all autistics.
True, but this is a bit of a straw man argument. I am not aware of a single individual who has claimed to speak for all autistics, leastwise not one with a neurodiversity bent.
I have seen many (like Doherty) try to silence the voice of autistics.
Do blacks prefer whites to speak for them?
Do women prefer men to speak for them?
More Down Syndrome voices are sought out in discussions regarding them than autistics are sought out in discussions regarding autism.
If an autistic speaks out, (s)he is said to be “high functioning”, and therefore not like someone’s “low functioning” child. If someone who is non-verbal speaks out (via communication devices), they are degraded as being not really low functioning, even if they assert that they were just as “low functioning” when they were younger as their critics’ offspring currently are.
Parents of autistic children have valid opinions on what it means to parent an autistic child. But unless they are themselves on the spectrum, they cannot render opinions on what it is like to grow up autistic. For that, we need to look to adult autistics. And even if someone with Asperger’s is “higher functioning” than another particular autistic, they are by definition much closer to that person than a non-autistic person.
yes. i agree with this whole-heartedly.
What Joe said.
If I were to agree to the redefining of autism that Mr. Doherty wishes to do, then I would be agreeing to be chopped in half. My life bridges both sides of the divide he wants to set up.
Of course, there are a lot of people who probably wouldn’t mind if I were literally chopped in half as far as I can tell, so perhaps they don’t care about this.
But I certainly do. And I’m not going to chop myself into pieces, literally or metaphorically, just because my participation in discussions about autism offends the sensibilities of a total stranger who probably wouldn’t mind at all if I just vanished to make his world simpler.
As Cal Montgomery has said, “I don’t believe you can meaningfully separate autistic people into “high-” and “low-functioning” in the first place, but if you can it’s not by comparing their political opinions.”
And as I’ve said elsewhere, in elaboration on a similar point:
Please don’t assume that my opinions are the same thing as how my body works. Someone could have a body that worked identical to mine but totally different opinions, or totally different from mine and have very similar opinions. Same with life experiences. When I have opinions that go beyond myself, they should not be treated as irrelevant just because they do go beyond myself. People are allowed to be Democrats and Republicans and Socialists and Libertarians and such, without being told all the time “You’re only one person and shouldn’t have opinions about other people.” I live in the world with other people so having opinions about them is inescapable, including opinions that affect disability policy and policy in general. I may be right or I might be wrong but don’t try to take away my right to have an opinion just because I’m “only one person”. It’s condescending, it puts me in a lower caste not allowed to have political opinions (and that’s what opinions about disability are, whether the person realizes they’re political or not).
And, I’d add to that, that in all the discussions of autism in the big picture, autistic people are the only people who are being routinely silenced with, essentially, “You’re just one autistic person so what do you know?”
I have never tried to silence the voice(s) of autistics as Club 166 asserts (without proof).
What I argue is that it is not open to a person with a pervasive developmental disorder to make a sweeping claim like “We don’t want to be cured”. That is not a statement that can be made on behalf of millions of people with PDD’s in the world. And certainly neither Mr. Plank, nor Club 166, nor any other internet poster can claim to speak on behalf of my son.
My son lacks the understanding of the concepts we are discussing , and yes after 12 years of living with, caring for and interacting with him, I know that he does not. Since he can not speak for him I do as his father, as the one who knows him best, cares for him and has the legal responsibility to speak for him.
There are also some high functioning persons with PDD’s who do wish to be cured. Jonathan Mitchell has expressly stated that he does wish to be cured.
These arguments could be avoided if some high profile “autistics” would simply qualify their remarks in a reasonable manner by indicating that some persons wish not to be cured.
I don’t know a lot of autistic people who don’t acknowledge that some autistic people want a cure. I’ve certainly acknowledged it countless times in my discussion of the topic. I also don’t know any autistic person who has attempted to speak for your son, but I have known many people who have explicitly said “We are not speaking for your son” or things to a similar effect, and you have never acknowledged this fact. There are a number of things people have been explicit about that you have never acknowledged.
Why is it that in these discussions, if anyone tells Harold “We are not speaking for your son” and “We are not speaking for all autistic people,” he just vanishes, only to repeat his assertions that we are doing just that, everywhere else?
Thanks to all for your comments (and questions back to me), and I apologize for taking so long getting back into the conversation. Many great points that I think merit an entire post, but here are some quick thoughts.
Wade wrote: “The idea should be to treat underlying causes of “autism-like symptoms” if they are resulting in dysfunction.” It is that last phrase, “if they are resulting in dysfunction”, that intrigues me. I need to give that some more thought.
laurentius-rex: “… a set of trajectories…” Is there a place in late-20th early-21st century society for these trajectories? They co-existed peacefully, for the most part, with society before now, but is that possible in the world in which we find ourselves? Back to the question of needs of individual (to be allowed to be autistic) and needs of society (which, in the long run, doesn’t care about individuals anymore than the human body “cares” about individual cells). And on the subject of DSM V, what are you hoping for in terms of autism?
Joe: Perception, as they say, is reality. (More on that when I get to Amanda’s posts.) As for your point about who a group would prefer speaks for them, I can’t help but think that who the group prefers and who can actually do good for the group are not always the same people. At least not at the beginning. Consider blacks – it was black activism culminating in the civil rights movement that brought things to a head, but if white men had not recognized these civil rights and had not influenced other white men to recognize them, we would not have the progress we’ve seen so that blacks can effectively self-advocate in our society. Same for women. (Please, don’t shoot the messenger.)
Amanda: thank you for reminding me that I should not take what you, or Larry, or any other autistic person says as THE “autistic viewpoint”, anymore than I should take my neighbor’s views as THE “Republican viewpoint”. This goes to some of what Joe is saying, and I think that part of it is because the experience is so different that it is hard for us to put ourselves in your shoes (the NT version of lacking a theory of mind).
Harold: as a fellow autism dad, I understand exactly where you are coming from. What frustrates me more than anything in the “autism debate” is the lack of balance in individual sources; rarely does one story provide balanced coverage. That’s part of why I’ve changed my approach on the blog, to include links and feeds from “both sides”, and to (mostly) ask questions instead of giving my opinion (which will, undoubtedly, show up from time to time).
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