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Monday, August 12, 2019

A letter to William Shatner from the Autistic Community

Dear Mr Shatner,

You seem to have a very misguided view on the #actuallyautistic Community. I will attempt to explain your inconsistencies in a way you can understand.

You say 85 cents for every dollar goes to advocacy at Autism Speaks.

Actually yes. Kind of. They group family services with research, advocacy and awareness. There is no true way to know how much exactly they spend on family services. Would love to know these numbers. 

You say Autism Speaks no longer wants to find a cure.


No, Mr. Shatner. Why then are they spending so much in research and not putting that money into helping Autistics and their families?

You say there are several people that identify as autistic on the board.

It is a step in the right direction but these autistics do not represent what the community wants. Self diagnosis is 100% valid. 

You say "If you do not like being called out or blocked, don't start. If you do & you get called out or blocked you only have yourself to blame. Several take it to martyrdom. If you want to respectfully debate or inform, I am here. Do we understand each other?"

No, Mr Shatner. What you call martyrdom is autistics speaking out. We get to self advocate without your permission. You call us being disrespectful but you sir are tone policing. We are a marginalized group of people and we will not be tone policed. You silence us when we are trying to self advocate.

You say,". . . a sin of the past. Yes AS doesn't have a good track record in its past but it HAS listened and changed. If you still don't like them because of some of these issues; that's perfectly fine. However attacking others because they do; is wrong. That's what goes on each year."

No, Mr. Shatner. If someone has wronged you, and they say they will change, does not mean they will. We are not so quick to trust. Just like if your girlfriend cheated on you, you would not be so quick to trust them again. Autism Speaks does not listen. The hold countless polls of Identity First Langauge vs Person First Language. They delete it when they do not get the result they want. They still spend money on research. Research trying to find a cure when they cannot find it. Autistics speaking out is not attacking. We are making ourselves heard. Attacking is silencing autistics which you made a hobby of.

You say, "If research can find ways of improving the the quality of life for for those lower on the spectrum then I'm all for that. The issue I see is that the paranoia and mistruths about AS get perpetuated and facts that may have been true in 2005 with videos shaming autistics are . . ."

No, Mr. Shatner. Research means finding a cure. Nothing more, nothing less. That was the aim of the organization from its conception. "Lower on the spectrum" that is not how a spectrum works. A spectrum is not linear. Everyone who is autistic has struggles and strengths from all over the spectrum. No two autistics are the same. There is no "high functioning" or "low functioning." We are just autistic. Do you know what would improve our quality of life? Acceptance and appropriate support. Not wasting money on pointless research.

You say, " What I don' hear about these #actuallyautistic that are on the lower end of the spectrum. The higher end wants donation monies to flow to them to improve their current lives and to stop research and studies. How is that fair to those who need constant care?"

No, Mr. Shatner. Again, you misunderstand that a spectrum is not linear. There is no "lower end' or "higher end" of the spectrum. It does not make sense. What we want is for all autistics to be supported. All support needs. Not just those who need minimal support or those who need constant support. EVERYONE. Paying for the research takes away from that. How is that fair for those needing support when you are paying a lab with money that could be used to help people?


When autistics talk, you need to listen to us. ALL OF US.

Autistically Yours,

Amanda Seigler
Autistic Activist
www.fierceautie.com


7 comments:

  1. You are so right!! As someone who is #ActuallyAutistic, I agree 100%.

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  2. As someone with classic autistic disorder, I'm going to have to blatantly disagree with you here, first of all... research into a cure is beneficial, even if YOU do not desire a cure or treatment of any kind ... there are many of us who do want one, should we not count, too? - Secondly, you're right, you cannot identify as autistic, and be autistic ... Self-Diagnosis is not valid, thank you for agreeing here. --- Thirdly, yes... there is a low & high end of the spectrum, rather severe vs mild (as high / low functioning simply applies to IQ level, High = an IQ of 70 or more)...

    Thank you for your time, just putting my thoughts in here.

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    Replies
    1. Autistic Dark Web? Self diagnosis is different than self identifying. I never said I agreed with you. As an adult you need to diagnose yourself before you seek professional diagnosis.

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    2. Nope, Self-Diagnosis is nothing more than Self-Identifying ... and, I know you didn't literally agree with me, but your statement is in 100% agreement with me, whether or not you want it to be or not... - Self-Diagnosis + Self-Identifying is one in the same, if you accept self-diagnosis by pro-neurodiversity advocates, than you must accept that board-members of Autism Speaks, regardless of whether or not they have a diagnosis (they are probably diagnosed) are ACTUALLY AUTISTIC.

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    3. Hi, #actuallyautistic here. I wasn't self-diagnosed (when my language stopped developing at echolalia, my mom knew there was something going on, and...well, you see where this is going). I went through ABA (I'm against it, for the record) and a couple years of speech therapy. Now that my parents (who are both neurotypical) know more about ABA and its negative consequences, they're against it, too.

      While I'm not married and I don't have kids, I feel I should at least say this: I wouldn't love my kid(s) any less if he/she was autistic. I would accommodate them to the best of my ability and do my best to show my kid(s) a world of inclusion and acceptance. It's like what my supports coach said when I was in college and we had a march for autism: "autism isn't a choice, but acceptance is."

      Just my two cents.

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    4. Yes, it's fine for you not to want a cure, or any form of treatment, but it also must be accepted that there is many of us who do want medical research into potential treatments & do support early intervention methods... To make a note of a statement in the blog, "When autistics talk, you need to listen to us. ALL OF US." - 'ALL OF US', means that people, must also listen to those of us who disagree with the neurodiversity movement, plain and simple.

      P.S, I am personally supportive of Applied Behavioral Analysis (ABA), as I have also, actually, been in ABA Therapy when I was in public elementary school, and have listened to the many, thousands of positive reports from parents, professionals & autistic people alike... - so yes, I am in full support of it.

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    5. Hi, I'm #actullyautistic as well. I self diagnosed at 29 after dealing with repressed memories and learning that the way my brain works, and the things that were the focal point of my abuse were not bad, as I was forced to believe, but normal and help keep meltdowns at bay. You say you don't except self diagnoses however what you are failing to see is that for me to be offically diagnosed, I have to spend THOUSANDS out of pocket to just get the testing, and not all testers acknowledge that females tend to internalize the visible 'signs'.

      My doctors agree, family and friends I have told who knew me as a kid all have had an 'aha' moment.

      I respect your right to have a desire to 'cure' autism, however since it is a difference of neurological wiring, and not something that has 'attacked' the so called neurotypical brain, there is no cure, it seems pretty silly to let people believe there is.

      Yes ABA works, but what is the goal?
      To have the child appear normal? Essentially, right? It tells the child that their thoughts and initial reactions are BAD and WRONG. I dont think that is ok or necessary.

      Since you 'disagree with the neurodiversity movement', but also say you are autistic, why is it that you hate yourself so much?

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