Tuesday, January 22, 2013

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.

7 comments:

Shannon said...

We have to keep speaking up, fighting the ND movement and advocating for our low functioning children at every opportunity.

Parent advocates are the only voice our children have.

Roger Kulp said...

To quote from Amy S.F.Lutz'ss article

The kids with the unfortunate trifecta of autism, intellectual disability and dangerous behaviors aren't on TV singing with Katy Perry. They're in one of the 11 inpatient hospital units in this country dedicated to this population (many with waiting lists months long), in residential treatment facilities, or barely managed at home behind closed doors.

I can tell you from experience,you don't have to be intellectually disabled to end up in one of those places.You just have to have an autism diagnosis worse than Asperger's,and be too disabled to work.

When I was in sixth grade,the school came very close to putting me in the infamous Rosewood Center in Owings Mills,Maryland.In 2008,I had my autism reevaluated.Then and there,papers were written up to put me in a state run residential treatment facility.Both times,my mother stepped in to prevent it.This past April,after my mother died,it happened again,and adult protective services were put on my case,by the hospital where my mother died.They had court papers to come in the house and get me.This time,it was my landlord's family that stepped in to help me.

I was just on the verge of my big breakthrough from the leucovorin.I had improved enough by that time,that APS could see I had improved enough to be on my own.My diagnosis with cerebral folate deficiency came five months later.

The point is,the more severely disabled adults that could provide a counter to neurodiversity are locked away from society.Locked away doped up on psychiatric drugs,fed diets full of wheat and cow's milk,and with no chance of getting the right medical care.

Roger Kulp said...

To quote from Amy S.F.Lutz'ss article

The kids with the unfortunate trifecta of autism, intellectual disability and dangerous behaviors aren't on TV singing with Katy Perry. They're in one of the 11 inpatient hospital units in this country dedicated to this population (many with waiting lists months long), in residential treatment facilities, or barely managed at home behind closed doors.

I can tell you from experience,you don't have to be intellectually disabled to end up in one of those places.You just have to have an autism diagnosis worse than Asperger's,and be too disabled to work.

When I was in sixth grade,the school came very close to putting me in the infamous Rosewood Center in Owings Mills,Maryland.In 2008,I had my autism reevaluated.Then and there,papers were written up to put me in a state run residential treatment facility.Both times,my mother stepped in to prevent it.This past April,after my mother died,it happened again,and adult protective services were put on my case,by the hospital where my mother died.They had court papers to come in the house and get me.This time,it was my landlord's family that stepped in to help me.

I was just on the verge of my big breakthrough from the leucovorin.I had improved enough by that time,that APS could see I had improved enough to be on my own.My diagnosis with cerebral folate deficiency came five months later.

The point is,the more severely disabled adults that could provide a counter to neurodiversity are locked away from society.Locked away doped up on psychiatric drugs,fed diets full of wheat and cow's milk,and with no chance of getting the right medical care.

Anonymous said...

Autism is now one in 88 according to CDC, Atlanta--and increasing.

The time line of autism reveals toxicity causation not genetics.

Furthermore, the parents of "thalidomide children" were not missing arms and legs. The parents of "autistic children" are not autistic.

The historiography of autism and latest update are all in a book titled: Autism:The Teratogen Fallout by Dr. Olga Graham available from Amazon Books (see reviews) or www.agentorangecanada.com (proceeds towards their cause).

If nothing is done about the causation of autism, the disorder will keep escalating unti it is one in one--then, what will we do?
Read the book for details, it is well-documented with empirical evidence, photographs and government documents never before published.

Because of neuroplasticity those afflicted with autism can become contributing members of society.

Anonymous said...

I submit that the ND crowd needs to "dig themselves" - they miss the "diversity" concept completely. They are extremely annoying, and in many respects dangerous. On the other hand, I've experienced ND with others - for example, my daughter's peers with Downs Syndrome have an active self-advocacy group - and ND for them is an acknowledgement that everyone is different, but everyone brings something to the table. A group collectively identified as intellectually disabled have more on the ball than the ASD crowd... then again, isn't this misunderstanding consistent with the ASD social dis-connect?

PS-interesting new layout for your site.

Roger Kulp said...

In response to the first anonymous comment here,"autism" has always been just a collection of three or so basic behaviors.One thing we have learned is that autism is a feature of many different conditions,and for some of these conditions,family history is very important.another type of autism is common in families with a history of Alzheimer's,Parkinson's,and Lou Gherig's disease.These children are usually lower functioning.

One area where I disagree with Harold,is we need to get all these diseases out from under the collective umbrella of autism,so we can work on curing and treating the different causes of each.

Roger Kulp said...

In response to the first anonymous comment here,"autism" has always been just a collection of three or so basic behaviors.One thing we have learned is that autism is a feature of many different conditions,and for some of these conditions,family history is very important.another type of autism is common in families with a history of Alzheimer's,Parkinson's,and Lou Gherig's disease.These children are usually lower functioning.

One area where I disagree with Harold,is we need to get all these diseases out from under the collective umbrella of autism,so we can work on curing and treating the different causes of each.