3:11pm August 9, 2014

This stuff was written a long time ago, but it’s still applicable to how people see autistic people’s writing about our lives.

The conversation is between a parent on a mailing list, and Jim Sinclair, an autistic person on the same mailing list.  They’re discussing Nobody Nowhere and occasionally other books by autistic people.  I've bolded some statements from Jim Sinclair that I found particularly important:

You can read the entire conversation here:

https://groups.google.com/forum/#!searchin/bit.listserv.autism/jim$20sinclair$20nobody$20nowhere/bit.listserv.autism/9u1IMIBWks4/RbdA88D2lyQJ

But here is the stuff I considered important:

> I felt that her dysfunctional childhood (and all things which seem to
> arise from it including Willie and Carol) were not clearly delineated
> from autism. Although the preface does have the disclaimer that bad

I’m not sure that they can or should be clearly delineated from autism.
Donna’s autism was almost certainly a factor in the abuse she suffered
(people who are predisposed to behave abusively under stress are more likely to resort to abusive behavior with a difficult-to-reach autistic child
than with a less-stressful normal child), and was definitely a factor in
how she responded to the trauma.  I’m an autistic abuse survivor, and in
comparing notes with Donna and other autistic people who have been abused, I’ve noted some fascinating (and potentially important, in terms of research and treatment) differences between responses and coping strategies of autistic and non-autistic victims of abuse.

***

> My other concern is that this book does not inform the general
> public; instead it raises many confusing issues which aren’t examined
> fully. Although it does state that autism isn’t caused by bad parenting;
> it fails to separate out the elements that arise from her terrible
> childhood. As a result, I feel it can mislead those who know little
> about autism. The back of my copy has an excerpt from a Canadian

One would hope that it would inspire those who know little about autism
to do some more reading and learn more about autism.  This is a *biography*, not a diagnostic manual.  Donna wrote it to tell the story of her life–*all* elements of her life–not to dissect herself into neat little
categories. *All* the autistic biographies I’ve read have the potentialto mislead if they’re taken as descriptions of The Pure Essence of Autism.

Temple Grandin, for instance, describes a pattern of cognitive skills and
deficits that’s just about an exact *opposite* of mine, and also focuses
a great deal on anxiety attacks, which, while they occur in many autistic
people, are not an essential feature of autism.  I have hardly any visual
processing.  I do have very good sequential/analytic processing.  I do not
have anxiety attacks.  I do not think squeezing myself in a cattle chute
would improve my life.  I found little in Temple’s book that I could relate
to.  Both the Barron and the McDonnell mother-son collaborations describe
tremendous difficulties with obsessive-compulsive disorders, which are not
differentiated from autism, perhaps leading the uninformed to conclude that
autism is merely a severe form of obsessive-compulsive disorder or that all
autistic people are also obsessive-compulsive.  I do not experience
obsessive thought processes or compulsive behaviors.  I have never felt
that I was unable to control my own thoughts or actions.  I have never felt
a need to control other people in order to compensate for feeling out of
control of myself.  I found hardly anything at all in these books that I
could relate to.  And so on, and on, and on.  The point is that biographical
works aren’t *intended* to tell *everybody’s* story.  They’re intended to
tell just one story: the story of the subject of the particular work.  As
it happens, I find more that I can identify with in Donna’s book than in
any of the other biographies/autobiographies I’ve read about autistic people.
I’m glad her story is out there with the rest, not only for her sake, but
because I think reading her book can give people a better understanding of
*my* life than they can get from any of the other books out there.  But I
still don’t expect anyone to have a thorough and complete understanding of
me from reading Donna’s book, and I would object strenuously if anyone
presumed to draw conclusions about me based on what Donna writes about
herself.  Donna’s story is her own story, and it differs from mine in a
number of important ways.  That doesn’t make her story any less worth
listening to.

Basically, a parent is trying to say that Donna shouldn’t have told her story as an autistic story because she was also abused and you can’t differentiate the effects of abuse from the effects of autism.  (FFS, most autistic people were abused, I’m not sure even the diagnostic criteria for autism are free of that confusion between the effects of abuse and the effects of autism.)  And Jim is saying that because it’s her autobiography, it’s important that she not sit there and try to dissect out which piece of her belongs to what diagnosis or whatever, and that if you’re looking for the One True Essence of Autism in an autobiography you’re never going to find it no matter who you read – Sean Barron has severe OCD, Donna Williams had severe abuse and health problems and DID, Temple Grandin has severe anxiety problems, Thomas McKean hears voices that tell him what other people are thinking, and all of them are absolutely autistic.  And all of them are among the earliest people to get autiebiographies out there that people were actually reading.

I think it’s really important that autistic people not edit out the parts of our lives that don’t fit with current stereotypes of autism.  Self-editing of that nature does nothing good to further understanding of either ourselves or autism.  It just makes it sound as if the experts are right and we can just pretend as if the other parts of our lives don’t matter and didn’t exist.  Every autistic person I’ve ever met has something going on that “could be confused with autism”.  Most of us have tons of things going on.  

I still don’t believe we can even tell what autism is, in a world where autistic people’s social world is so hostile to us from the moment we are born into a world where touch is considered the highest form of expressing love (when many of us find touch painful or otherwise unpleasant).  How can we tell anything about what our social skills would be like, if we were born into an autistic-friendly world?  Even the best families and friends tend to hurt us by accident because they don’t know how to avoid hurting us.  

How can we possibly know what an autistic person’s social skills would look like, when we enter into a social world where everything about being social hurts us on a sensory level?

How can we know these things?

How can we even write diagnostic criteria, when we don’t know, we just don’t know.

I remember the first time I felt like I was accepted in a social group, for real.  And I came home and I cried for days.  I cried for the child who never got to experience this until hir twenties.  I cried for the fact that I now had feelings that I had shut down because the social world had been too hostile, up until now, to keep those feelings open.  And I remembered people making judgements about what social feelings autistic people could have.  And I wondered how could they write the diagnostic criteria for autism, about the social stuff, without ever having a world that was socially friendly for autistic people?  

Because when autistic people are given the opportunity to be social, many of us flourish.

The most social person I’ve ever met is Xenia Grant and she is also one of the most flagrantly autistic people I’ve ever met.  She is a beautiful autistic Hufflepuff and she is so very social and so very autistic and these are not contradictions.

And when we can be social.  For real.  A lot of autistic people who seemed introverted turn extraverted.

Not all of us.  But more of us than you’d think.

And I cried so much because I had to cry, I had to cry for the child who had to hide hir feelings so that nobody would hurt hir.

And when I cried for that child, I realized that now that I had these feelings, now that they were opening up inside me, I was better able to read the feelings of others.

So now, standard diagnostic notions of empathy were being ruined by the “actually this is something that I shut down because of abuse given towards autistic people, not something that simply wasn’t there to begin with”.

It hurt so much to open up again but it was worth it.

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