Ballastexistenz

Who can call themselves autistic?

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autistics.org has put out an editorial on the letter A Danger In Speaking that was sent out by Tom McKean to various leaders in the autism community, urging them to get formal diagnoses to prove that people are autistic before they speak at conferences.

Details can be read in that editorial called, Who can call themselves autistic?

To clear up a few misconceptions before they start: We’d have written this no matter who wrote that letter. This is not personal in that sense. But it’s certainly personal in the sense that it affects any autistic person who wants to speak publicly as autistic. We now have an autistic person encouraging people to demand private medical records and early histories from autistic people before we can be taken seriously, and that could be taken as the carte blanche conference organizers and such want.

The point in refusing to give out such credentials in that context, is that not everyone has them. It’s not right that, for instance, I could speak at an autism conference about being autistic, but someone just like me with no official diagnosis (or with a misdiagnosis) couldn’t. It’s not even right that a person be required to give out private information of that nature, that they could have a lot of good reasons for not divulging. In refusing to do so, we’re refusing to play that game of legitimizing people’s claim to being autistic, and therefore apparently our opinions, based on official medical labeling.

So, if you want to sign it (after you’ve read it), email whoisautistic@gmail.com.

Apparently the misconceptions were not cleared up by the paragraph above, so I’ll include the below response I gave elsewhere to the fact that McKean has taken this as an extension of an old personal conflict with a couple of us.  The summary, in case you don’t want to read the long version, is that failing to write something because someone could construe it as a personal attack is just as bad as writing something as a personal attack, and we wrote this as a response to the opinions, not the particular person holding them:

We anticipated this reaction, though, since Laura and I have a history of a very small number of conflicts with Thomas, and since things can be very easily made personal to deflect from the content of the message.

I mentioned it to Laura, and she said, essentially, “If Thomas thinks I even think about him when I’m not reading his writing, he must think I have far more time on my hands and a lot more interest in him than I’ve got.” Same goes for me.

Someone else at autistics.org suggested that we not even mention Thomas in our response for fear that this would be (mistakenly) taken as personal, given Laura’s and my history for him.

We decided to risk that reaction, given that anyone aware of that document (which is far more widely distributed than just those who received it, but those who received it are an enormous number of people in themselves, and far more than one of them have posted it in public places or redistributed it in other ways) could put two and two together, and that tying these opinions to the recent events that prompted their expression made more sense than randomly plonking an editorial up for no apparent reason other than to have one.

People in positions of power are potentially making decisions about every single one of us (not necessarily knowing every single one of us, but if we were to ever try to speak at conferences) based on what was said in that mass email. That’s what, in many people’s eyes, makes it more than the business of just those people in positions of power.

And for the record, several people, including us, published something similar when it was Lenny Schafer trying to say the same things. We would have published something similar whether it was Thomas McKean, Jane Meyerding, Jerry Newport, Parrish Knight, or Frank Klein who did that!

We just had the misfortune to have it be someone where it could be easily misconstrued as being tied to past conflicts for half of the people involved in writing our response. And it should not be forgotten that the response was written with input from four people, not two people dragging the other two by the ear, and signed by upwards of twenty by now, many of whom weren’t around for the conflict six years ago, some of whom were as critical as anyone of the way autistics.org handled that conflict (which, by the way, I think about only a tiny fraction as often as I think about Thomas, which isn’t very often to begin with).

But failing to write something because it could have been (and probably would be) construed as a personal attack, would have been just as wrong as writing something as a personal attack. We did neither, we wrote a response to what was said.

So at any rate, even if you totally erase the words “Thomas” and “McKean” from the document, the points made in the document still stand, and dredging up old unrelated conflicts to divert attention from that fact is pointless and I’m not going to engage in it. I just wanted to clarify what’s up here before people’s imaginations get too far out of hand.

So, our response stands, regardless of who happened to write the thing we’re responding to.

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