Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Friday, April 19, 2013

Autism Acceptance is NOT

Trigger Warning: Mentions of cure, ableism, mourning for autism diagnosis.

As March ended, I wrote a few things that Autism Acceptance is. And it's important.
We also need to be aware of what Autism Acceptance isn't. And that's what I'm talking about today.
"I love my child, but I hate his autism." That's not autism acceptance. It's not even acceptance of who your kid is. Because some of the things you claim to love are also closely intertwined with autism.
Acceptance as in the stage of grief is also not autism acceptance.
By the way, that's what Autism Speaks is talking about here:
Acceptance
Ultimately, you may feel a sense of acceptance. It's helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism. Accepting the diagnosis simply means that you are ready to advocate for your child.
The period following an autism diagnosis can be very challenging, even for the most harmonious families. Although the child affected by autism may never experience the negative emotions associated with the diagnosis, parents, siblings and extended
family members may each process the diagnosis in different ways, and at different rates. 
That's not autism acceptance. That's going through mourning for a kid because they have a different neurology than you do.
(Most of the things Autism Speaks has tagged with autism acceptance are nothing of the kind. Just so you know.)
Biomedical treatments for autism are not autism acceptance. Medical treatments for the other conditions that an autistic person might have are good, but completely irrelevant to the question of accepting autism or not, just like the those conditions aren't actually autism. (No, really. Whatever it is that's up with my stomach isn't autism, nor is my history of asthma, nor was my shellfish allergy. No, I don't know how a shellfish allergy going away works, but it happened and I don't really care how it happened.)
Insisting that autistic people must learn to pass for neurotypical while also claiming it's fine to be autistic isn't autism acceptance.
Telling Autistic people who have learned to pass because they had to that this means they aren't really Autistic isn't autism acceptance either.
Insisting that you can speak for all Autistic people isn't autism acceptance no matter who you are. That you can say some things which could help all Autistic people and trying to do so? That could be autism acceptance if the things you're saying fit under it. (Remember, we all communicate for ourselves, you can speak for the benefit of someone else, but not for them unless they have said you can.)
Demanding eye contact is not autism acceptance.
Demanding quiet hands is not autism acceptance.
Setting "indistinguishable from one's peers" as the goal is not autism acceptance.
Conflating life skills with passing for neurotypical is not autism acceptance.
Speaking of cures is not autism acceptance. (Cures for things that aren't autism are kind of irrelevant to autism acceptance, so this still holds.)
Comparing rates of autism with rates of cancer, AIDS, other things that are actually diseases? Not autism acceptance.
Being proud of your own Autistic self, then turning around and insisting that a certain other group of Autistic people needs a cure? Not autism acceptance. 

8 comments:

  1. Excellent listing of autism acceptance fails. And I can think of at least one famous autistic who fails at the last item as well as making comments that inadvertently provide anti-autistic soundbites.

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  2. Understanding what Autism is, is part of Acceptance. Autism is a collection of described and observable behavioral impairments, per DSM5 guidelines, specific to three criterion elements of social-communication described as a general disorder in social reciprocal communication.

    Those are part of my challenges in life that I have learned to come to accept, and some other have too as they have come to understand in more detail what these challenges are for me.

    It is sometimes more difficult to understand another person unless one is more aware of what their challenges are specific to the DSM5 definition of Autism, as they may not be aware that those differences in social communication are not necessarily intentional in hurting the feelings of someone else or ignoring what others may perceive as social communication needs, that are not fulfilled.

    People are more likely to understand and accept others when they are more fully aware and understand the strengths and challenges in their lives, and what may underlie the challenges that is not part of negative intention.

    However, quite honestly, and quite frankly, some people cannot understand that it is an inherent difficulty, even if provided the fullest of details.

    There is still a long distance to go to find a possibility for any real widespread understanding in awareness of what those complex challenges are, which can indeed lead to greater acceptance among others through appropriate avenues of education, awareness, and the greater common elements of understanding that may eventually result in greater acceptance for some people on the spectrum.

    It is not that hard for others to accept all the positive traits associated with Autism for people diagnosed, that are not listed in the definition of what is described as the Disorder of Autism, per DSM Criteria.

    Those traits are more often what people identify for themselves as to what it means to be Autistic. Overall, that education and awareness has to come from people on the spectrum.

    Very few US National advocacy or research organizations identify those strengths. Autism Speaks, perhaps ironically, is one of the few that does, in the section on their website that describes what it means to live on the spectrum.

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    Replies
    1. Katie, I think this comment fits better on the autism acceptance is post than here. Because you're talking about what it is. Not what it isn't.
      I also disagree with most of what you say, since my experience has been that I get the most acceptance from the people who know the least about autism. The most accepting teacher I ever had was the one who asked what autism was when I disclosed. The worst have been the ones who consider themselves aware.

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    2. Accepting difference that one cannot understand or label is acceptance of difference. Some are better at that than others are.

      Others require textbooks and a definition of a label. Others require a verbal explanation. Others do not care to understand and ignore. Still others are fearful of or get angry at difference.

      If people clearly understand your reciprocal social communication, you experience a level of "Privilege” that not all people on the spectrum share.

      I cannot argue your experience; however, it is not close to the accounts of the experience of other people on the spectrum who cannot successfully socially communicate reciprocally, with others.

      That entails much more than retaining eye contact or passing for the social norm.

      Most of what you describe above, per challenges on the spectrum, is common among people who have introverted personality traits. Introverted Personality traits are common among people diagnosed with Asperger's syndrome.

      The full challenges of Autism as described in DSM5 guidelines are far more challenging than what has been described at minimal requirement to date.

      Some of those people with those challenges in reciprocal social communication count on awareness of the condition, in some cases just to survive.

      Leaving out a description of what is otherwise known, as Awareness of what Autism is, is also often not acceptance of Autism.

      In addition, understandably as described you, not an issue in your case, and perhaps some others you are acquainted with on the spectrum. My form of Autism, for me, for the most part of my life, fit into the category that you describe for yourself.

      Lack of awareness, recognition, or acknowledgement of the level of difficulties associated with the actual diagnosed condition of Autism, that not all people on the spectrum currently share, is also not Autism Acceptance.

      Part of what leads to that acknowledgement requires looking far outside of one's own perspective, in seeing the real difficulties that others experience on the spectrum directly related to the condition, which in itself is the recognized difficulty most often identified with the actual diagnosed condition of ASD, per DSM5 guidelines.

      It is also recognized that people actually diagnosed on the spectrum are among the last to gain full awareness of their own difficulties in reciprocal social communication.

      Your response indicates to me that you are autistic. That is no surprise, and something if not accepted, is also not Autism Acceptance.

      My comment more specifically was that lack of awareness, recognition, and acknowledgement of the condition is also not Autism Acceptance.

      I could not explain that fully to you in context, without a response of reciprocal social communication from you.

      Thank you for the response and thank you for allowing me to comment here, in what can likely be observed as an unusual method of reciprocal social communication.

      That is Autism Acceptance.

      When it is possible.

      At least online, among Autistics. :)

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    3. I think I might get what you are saying here. I do have the advantage that when speech is working for me (that's not always) people's stereotypes about autism mean that people who don't know much can mistake me for just kind of weird as long as I don't actually melt down in front of them. (That's happened in front of teachers in the last year. Bit awkward, since I hadn't disclosed yet...)
      I don't pass by acting neurotypical, but by other people being clueless.
      I'm not sure if there is a question as to my diagnosis on the spectrum being implied here, but yes, I am formally diagnosed on the spectrum.
      On lack of awareness, recognition, and acknowledgement not being Autism Acceptance, this is true, but those things do not on their own imply acceptance and are sometimes done in ways that will impede acceptance. By sometimes, I mean by most of the mainstream autism organizations. If that weren't happening, people knowing about autism would imply that they were consistently more accepting of Autistic people all across the spectrum. It's not what I see happening, even among folks who are aware, so awareness is clearly going wrong.
      (Yes, I think that awareness done right can be helpful with acceptance. But awareness done wrong can make it so much worse, too.)

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  3. Thank you for the response Alyssa. I agree with you that ARA, Awareness, Recognition, and Acknowledgement can go wrong, too.

    That was evident to me when I first saw those two videos by Autism Speaks, that since have been removed from that organizational effort.

    Perhaps you pass as clueless in symptoms for some others, but you do not pass clueless to me in your written communication, at all.

    While I have wondered privately if some individuals I have come across on the internet are even close to having actual problems in reciprocal social communication, suggesting they are autistic, your method of written communication reminds me of some individuals I have come across with strong symptoms of Hyperlexia, who have adapted to written communication with a keyboard, including me.

    It is not likely you could be comfortable in reading your own writing, unless you were not an unusually accomplished reader in speed, yourself.

    I have to force myself to do paragraphs, and often what results is patterns of paragraphs instead of paragraphs of thought. I use numbers of lines instead of separating thoughts, in making decisions to break paragraphs.

    I see you use parentheses as an adaptation to separate your thoughts, which is something I don't find myself doing as much now; however, something I often did in the past.

    An interest in learning Chinese is an unusual desire, which can likely be attributed, at least in part, to one that is fascinated with decoding symbols.

    I would say the same for one that was interested in other languages that do not use the Alphabet.

    I can imagine if I started using the internet at your age, my blog would look quite a bit like yours.

    I got to a point in life, where all the details I had absorbed reached critical mass, and could go no further.

    Problem for me was I had no method of effectively communicating them with speech or in writing, so I kept them ALL in my mind.

    While people observed me as quite, there were fireworks of pictures, patterns, and connections, and other miscellaneous information continually going off in my head. :)

    I'm not sure I would have ever written a paragraph break, if I did not finally figure out how to turn off the switch on the rest of the world.

    In this online world of Autism Community I have Monologued "with" thousands of people who suggest they are on a spectrum, but I have come across only 7 like you, per written communication, that I can still remember by symbolic name.

    It is the patterns of written communication I often do not forget, more so than the names or actual content of the writing, if that makes sense. :)

    For me it is like decoding a fingerprint, which I think will make it clear what the point is I am trying to make.

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  4. there's an autistic person in all of us..

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I reserve the right to delete for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things. As long as we stay within those ranges, discussion is AWESOME.