Autreat’s “Ask an NT” panel.

Standard

At Autreat, they had a panel in which non-autistic people could be asked questions, similar to the standard panels in which autistic people are asked questions at autism conferences. They transcribed it onto an IRC channel so that people not there could read and ask questions. Here’s one of the questions, and one of the answers:

JOEL SMITH (AUDIENCE MEMBER): ASKED PANELISTS IF THEY HAD PROOF OF THEIR NT DIAGNOSIS

CHLOE: (ANSWERING JOEL’S QUESTION NON-RHETORICALLY) NOT DIAGNOSED BUT IT IS CLEARLY THE WAY I OPERATE SO I AM COMFORTABLE IDENTIFYING MYSELF AS SUCH

That kind of answer is acceptable from non-autistic people. When autistic people say it, however, it’s not good enough. The default seems to be, non-autistic until proven otherwise.

I have, for reference, proof of my diagnosis, including a developmental disability waiver with “AUTISTIC DISORDER” written on it. I don’t, however, give it out. I do this on principle: People just as autistic as I am can lack a diagnosis (yes, really), and they have just as much of a potentially valid viewpoint on being autistic as I do. Moreover, whether my opinions are right or wrong does not always hinge on whether or not I am autistic to begin with.

Non-autistic people are not expected to prove that they are not autistic (even in some cases where they probably should be expected to).

Parents of autistic children are not expected to prove parenthood, in order to give opinions on autism (even in some cases where they probably should be expected to).

Even autism researchers seem to be granted an incredibly amount of immunity to genuine skepticism about who they say they are.

Yet somehow, with autistic people, it’s “How can you possibly say you’re autistic?” “Autistics shouldn’t be listened to on anything unless they provide proof of diagnosis.” “People are just pretending to be autistic so they can say these anti-cure things.” (When the only known instance I know of someone definitely pretending to be a “kind” of autistic they weren’t, and thus possibly suspect about any other claims they’ve made, is someone who was saying pro-cure stuff, which never gets questioned by these same people.)

So, while a few people have seen my proof of diagnosis, mostly those who have to, I’m unwilling to simply hand it out to anyone who claims that I’m not for real. That’s rude and an invasion of privacy to expect to see someone else’s medical records on demand when you have no medical connection to them and no reason (beyond disagreeing with them) to suspect they’re a liar. Nobody online ever questions that I get migraines, I noticed, and they’re even more subjective from the outside than being autistic is.

Edited to add:  Someone pointed out I should give this context.  A letter recently went out from a well-known autistic speaker to leaders in the autism community, urging that conferences receive proof of diagnosis, as well as possibly information about the person’s educational history, and other private, confidential information, before allowing people to represent themselves as autistic.  The letter also expressed skepticism about people’s diagnosis the later in life the diagnosis was.  Given that even those diagnosed in childhood may have their early records destroyed, given that even blatantly autistic people over a certain age were commonly missed for a whole number of reasons, and given that not everyone has the money or resources to seek a diagnosis, many in the autistic community view this as unfair.  The autistic man who asked the question of the NT on the panel had an early childhood diagnosis where the records were destroyed and does not want to be forced to produce an adult re-diagnosis in order to have his views listened to.  But this is a wider issue that affects the credibility and privacy of all autistic people.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

6 responses »

  1. I think it’s that migraines a) aren’t viewed as affecting a person’s ability to self-advocate and b) aren’t something you’ve said you value.
    If you agree with the status quo, people don’t question you. It’s only when you challenge assumptions they don’t want challenged.
    But the assumptions they don’t want challenged are usually those that most need challenging.

  2. I’ve noticed that it’s popular among both professionals and “consumers” who have unquestioningly bought into their ideas to caricature the anti-psychiatry movement as being made up of outsider meddlers who have no personal experience with drugs, institutions, or the problems (real or imagined) they’re supposed to treat. “Clearly, you don’t know what you’re talking about and have no personal experience of mental illness.” Even if what’s being said is that drugs should be available to those who *want* them, but that nobody should be forced or coerced into taking them.

    On the other hand, nobody ever questions the credentials of the people who talk about the miraculous effects of drugs, or wonder if maybe at least a few of them aren’t what they say they are, or have some incentive to lie, distort, and outright make things up. No one insists that their medical records be investigated to verify their story. No one ever accuses them of pretending to have a disorder just to promote drugs or to harm others. Their stories always seem to be suspicion-proof.

  3. residual schizophrenia…thought disorders…nt neglect…autist neglect…staying awake all night

    i don want to “try” to be normal

    i am also verbal

    i hate mental health…saying such implies illness…i was told to go to autreat a few years (2?) … i was scared … i thought may condition could become disabling if i attended autreat.

    i don’t know

  4. There are a lot more reasons that I can think of why a person on the pro-cure side would pretend to have been cured of condition X than for someone who’s against enforced treament.

    Both sides could use it to bolster the authority of their arguement, using the “I have/had X and I know what it’s really like.” approach.

    But someone pretending to have X would also have the opportunity to gain substantial uncritical attention and sympathy from a group that views their condition as tragic. This is very appealing to some people. Alternately, they could make a lot of money for themselves or the organization of their choice as a poster child.

    And someone with condition X would have, in addtion to all those other motivations to claim a cure, at least one major one. Fear. Being diagnosed with autism/mental illness/whatever can give others the legal right to control and imprison you. Claiming that the treatment succeeded can be an attempt to escape that control, particularly for people who’s health, safety or freedom are contingent on the approval of others.

    But it’s still assumed that the people who object to treatment or simply object to forced treatments and display enough obvious communication to have their objections understood are most likely faking.

    Odd.

  5. I always knew that I was somewhat weird. Later, and lately, (after I had spent 50+ years here on this planet, I took some on-line Autie-Aspie quizzes. My scores tended to be B+ – A-, where an A is most autistic.

    But, I have claimed to be “mostly normal” here and at other Web places. BAPy, maybe? I dunno.

    I am pretty sure that I’m off on one end of the bell curve of human brain function, in some ways, at least.

    So: I haven’t consulted a shrink. I’ve satisfied myself that my head does not work exactly like the standard head model,or maybe not like most other peoples’ heads, at all. I don’t think I’m thoroughly autistic, but I’m definitely close enough to sympathize.

    I hate having to do social work.(hanging out with other humans when I’d rather spend some quiet alone time with my self.) Dammit!

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