Thursday, December 11, 2014

Will Neurodiversity provide the #mssng link?

Several months ago it was announced that Autism Speaks had partnered with Google to sequence of the genomes of 10,000 persons on the autism spectrum and their family members.  It was hoped that the project would find clues to the etiology of at least some forms of autism as it is quite possible if not probable that they partially originate from some form of genetic mutations.

When I first heard about the partnership between AS and Google I wondered if, to be consistent, whether or not the members of neurodiversity would boycott Google.  If they urge boycotts of other organizations involved with autism speaks perhaps they should not use a google search engine, not use blogger blogs and never again view or post a video on youtube.  As far as I know, none of them have done this yet.  Nor, to the best of my knowledge, have they written a letter to Google urging them to severe ties with the organization they hate so much as they've done with Sesame Street and other groups who have had an association with autism speaks.  Or even if they would claim that this project would result in eugenics.  Now, apparently they have taken some action.  

Autism Speaks has used a promotional gimmick to advertise this partnership of using the term mssng with certain letters deliberately omitted.  They have also used #mssng as a hash tag on twitter.  They apparently meant that certain information was missing in autism and were not directing it at autistic people.  Only hoping that missing answers could be found to help autistic people.

Predictably, members of the neurodiversity movement have taken umbrage.  They have responded angrily, that they are not mssng, there is nothing wrong with them, autism speaks are evil ogres who are insulting them and are even trying to destroy them.  They have added their own hash tag on twitter, #notmssng.

Others have provided more tempered responses stating that what is mssng are supports and services.  At the forefront of this is one of ND's most prominent proponents John Elder Robison.  He's written a response to the mssng campaign.  Interestingly enough he states that he favors genetic research of this sort, but says it would not be a priority of his.  Then he goes on to state we are spending money in the wrong places and should not be looking at the "autism riddle".  He states that we need therapies and other services to fill in the gap and that these are obtainable.  He not only stated that there should be funding for these endeavors, but that it should be administered by autistic people.  If he has such great ideas with all of his money, power and influence, and he does not agree with Autism Speaks' spending priorities why he doesn't start his own 501(c)  organization and attempt to do this and fund certain projects or suggest what and how they can be funded?  How can someone disabled by autism be accommodated so they can have a job, a lifetime partner and other goals.  How can a nonverbal autistic be treated and accommodated so that they can speak?  What research can be done that will help autistic people in the here and now, since Robison complains that genetic research will not help anyone in the foreseeable future.

ASAN is now a 501(c) organization run exclusively by autistic people, exactly the type of enterprise that Robison is talking about.  They have made similar claims that acceptance and accommodations will solve everything and that if AS spent their money more wisely we could achieve the goals that Robison has discussed.  In Gadfly's opinion, ASAN has failed miserably in this regard.  I have read their stuff and yet, I can't recall them having written what accommodations and therapies can help autistic people.  They only want to tear down autism speaks and persons, like myself, who want to find a cure.  They demonstrate against autism speaks and talk about how terrible it is, yet don't seem to want to provide any solutions of their own the problems autism causes, regardless of whether it's a medical disability or a social disability.  Out of their $300,000 dollar budget $65,000 alone goes just to pay Ari Ne'eman's salary.  Much of the rest of the money goes to other staff members pay and rents on offices.

I realize that ASAN's response to this is that since people wrongly perceive autism to be a disease or a defect rather than neurodiversity's description of an alternative form of brain wiring they will donate money to autism speaks and if ASAN had the millions that AS does and not merely a few hundred grand in assets perhaps they could provide research into supports and accommodations and therapies that would help autistics now and not decades from now.  I don't believe that poor capitalization is an excuse.  I'm still waiting for suggestions from Robison, ASAN, or any other members of the ND movement for that matter as how this can be done.  They are saliently lacking in those suggestions.


 Will the ND movement at some point in time provide the #mssng link?  I won't hold my bated breath.

3 comments:

Anonymous said...

"ASAN is now a 501(c) organization run exclusively by autistic people"

The former is true, the latter is a lie and ASAN knows it.

jonathan said...

@Anonymous 4:58. Perhaps you have a point, I guess I should have phrased that people alleging to be on the autism spectrum

Roger Kulp said...

I think it all comes down to what one more researchers are calling "autism pure" VS "autism plus".ASAN and the neurodiversity movement represent the "autism pure" side.On the other side is "autism plus".This can mean anything from ADHD to depression and bipolar disorder to autoimmune disease to metabolic and mitochondrial disease.Those of us in the autism plus camp,especially the more severely disabled of us,can see there is a real history of related problems in our families,going back generations,and there is need for genetic research.But more importantly is research that looks at autism as a "whole body" disorder,centered around all the different systems that can effect the brain,that can cause someone to be nonverbal,or exhibit the negative behaviors in autism.This too goes against what ASAN and neurodiversity believe about autism.Very high functioning people of questionable disability status will never get this.

I have looked at ASAN's tax returns on the web,just like you have.They get huge corporate grants,just like Autism Speaks,and most of this goes out to pay Ne'eman and the rest.Self-advocacy by it's very nature has do be done by very high functioning people.Even accepting ASAN as an organization by and for the very high functioning,I don't see where they have done much to help high functioning people.