TPGA Aghast and Angry: Slate Dares Print Autism Parent Critique of Neurodiversity Ideology

TPGA guru Shannon Des Roches Rosa (SDDR) is aghast and angry because Slate.com has dared publish "Is the Neurodiversity (ND)  Movement Misrepresenting Autism?", a gentle critique by autism parent Amy S.F. Lutz, of the harmful, irrational Neurodiversity ideology embraced by the leaders of the ironically named "Thinking" Person's Guide to Autism.   Self labelled as a guide for "Thinking" Persons the TPGA is harshly critical of anyone, especially autism parents, who disagree  with them; anyone who portrays autism as a disorder or as a group of disorders, deficits or symptoms.  In the Neurodiversity world of the TPGA  the autism and related symptoms of a child must be accepted as blessings, and attempts to treat and cure those symptoms, deficits or disorders rejected, by THINKING persons.  That is the true autism path according to Neurodiversity, that is the true autism path according to SDDR and the "Thinking" Person's Guide to Autism.  Woe to any parent or publication that dares disagree with the self appointed arbiters of rational autism thought at the TPGA.

In a quick and angry response to the Slate article  Des Roches Rosa was, to her credit, open and honest about WHY she was upset.  SDRR. as reflected in the title of her response, was upset because the author of the article questioned Neurodiversity ideology: Why Did Amy S.F. Lutz Attack the Neurodiversity Movement?.  The alleged attack consists of pointing out the fact that very high functioning self advocates who do not required medical treatment, or treatment of any kind, misrepresent the harsher realities of low functioning persons with autism disorders. She points out correctly that such misrepresentation, especially coupled with the DSM5 substitution of Asperger's for autism, will probably result in  ever fewer autism treatment advances.  Ultimately this misrepresentation and misdirection of resources will probably result in the very limited progress to date in autism treatment research being slowed even more ... to the detriment of the low functioning autistic persons most in need of progress in autism research.

The TPGA and other ND faithful will undoubtedly deluge Slate.com with demands that they be permitted an opportunity to present their replies to the Lutz article.  They truly believe theirs is the one true path and voices of dissent must  be silenced or at least drowned out. They believe that strangers are better placed to speak on behalf of low functioning autistic children then their parents, including me, who speak on  behalf of our own children.  

I have no desire to tell  high functioning autistic self advocates that they must seek treatment.  I have no desire to tell SDDR, or Kristina Chew referenced by SDDR, that they should seek treatment for their low functioning autistic children.  I absolutely will not, though,  let them speak on behalf of my son.  I urge all parents who want to see treatments developed for their autistic children to continue the fight. The ND movement including the TPGA are set in their ways and will continue to try and impose their views of autism on the world.  For our children's benefit we will  have to continue to speak up and attempt to counter their misguided efforts. 

Thank you Amy S.F. Lutz for speaking out.

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"Thinking" Persons Guide to Autism Issues Proclamation Declaring Autism Speaks Does Not Benefit Autistic People

Some of the people referenced in this post are affiliated with Autism Speaks. TPGA does not consider Autism Speaks an organization that benefits autistic people. -SR

I am not sure what constitutes "Thinking"  at the "Thinking" Persons Guide to Autism. The above quote from "SR", Shannon Des Roches Rosa, precedes a blog comment by Carol Greenburg, a TPGA sponsored blogger at the recent IMFAR 2012 conference in Toronto. I attended IMFAR courtesy of Autism Speaks and found the conference to be an amazing experience. (Although attending courtesy of Autism Speaks my attendance still cost me considerably as I lost 3 days out of my legal practice and time I could have spent with my son Conor). 


I am not totally surprised that SR would make a statement of that nature about Autism Speaks. This is after all the same individual who used tragedy to promote TPGA ideology and products: 

"Vanquish the Forces of Autism Evil! Declare Your #AutismPride!

 When I hear about yet another dangerously misinformed autism parent killing their child because of  autism fears, I literally fall to my knees with grief. What kind of world do we live in, if people can't bear. ........ I also blame autism organizations and websites like Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds, which have made unilateral demonization of autism their mission; which do no outreach whatsoever based on building positive supports and communities; and which use calculated cult-like "us or them" mindsets, attack dog techniques, misinformation, and censorship practices to keep their almost exclusively autism parent and grandparent faithfuls' righteous indignation and self-pity at a roiling boil.

It doesn't matter how much you love someone with autism -- if you continuously and publicly declare them damaged goods, you are hurting them. And their peers. And telling everyone else it is acceptable to hurt Autistics. ........this latest tragedy makes me frantic to get our TPGA book out (I'm marking up the proof right now, if there are no more hiccups with the publication process and thanks to the superhero manuscript powers of Jen Myers, it should be available in one week)."

I notice that Autism Speaks wasn't mentioned on SR's "blame" list when she wrote the above comment in response to the tragedy of a mother taking her autistic child's life. Prosecutor's in that case declined to prosecute the woman because they doubted they could prove her sanity at the time she killed her child.  But that didn't stop the self referenced "squidalicious" Shannon DRR from launching her bizarre rant against parents and others who view their child's autism disorder as a ......... disorder.

Autism Speaks deserves to be criticized, like everyone else, on occasion. My oldest non-autistic son finds ample, and I mean ample, reason to criticize me and I actually get a kick out of it when he does.  As the father of a severely autistic son with profound developmental delays I am not sure at times whether all those "thinkers" at the TPGA actually realize that, notwithstanding all their feel good buzzing about autism as an alternative way of thinking etc.,  autism is still a ..... disorder.   I am a bit surprised that SR would identify Autism Speaks as one of the forces of evil and I am not sure why but I assume it is because AS helps fund cause oriented research which may some day result in treatments and cures for autism disorders.

My own frustrations with Autism Speaks arise from their attempts to be all things to all people and in the process downplaying some of the harsher realities of those most severely affected by autism disorders.   In particular I believe that Autism Speaks glosses over the strong connections between Autistic Disorder and intellectual disability.   Autism Speaks has, however, been a key factor in the research area in particular; both genetics and environmental autism research, although I would like to see more emphasis on the environmental research. While I disagree with some of their decisions and directions overall I believe Autism Speaks is a positive force that does benefit autistic people, particularly in raising funds for autism research. Of course as a parent of a son with severe challenges arising from his autistic disorder, and as an unthinking person, my opinion probably doesn't count for much as a guide to autism issues.


I guess it is just par for the course that if you try to please everyone you risk pleasing no one and certainly not someone who identifies so many parents and parent driven organizations as "forces of evil".    I will have to start reading TPGA more closely now, not in hopes of learning anything constructive about autism disorders, but for the amusement value of seeing from day to day who SR and the TPGA have proclaimed to be not acting for the benefit of autistic people.   

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