Sunday, October 13, 2013

High Functioning Autism Speaks Continues Betrayal of 50% of Autism Spectrum With Intellectual Disability

Autism Speaks continues its betrayal of the 50% of persons on the autism spectrum, those with intellectual disability, those for whom  autism is a disorder not a superior way of thinking or the possible subject of a new TV comedy series or a career as a well paid "autism" advocate with "Autism" Speaks. 

In the October 11 2013 blog "An Emphasis on Strength: Finding Fulfilling Employment" Sarah Andrews, Autism Speaks Coordinator of Adult Services, and mother of two sons with autism, talks about the interests of her two sons "on the spectrum".  Ms. Andrews offers the current feel good drivel that is circulated widely now and which simply pushes aside, as the DSM5 does, those with severe autism disorders, specifically those with serious intellectual disabilities ... global developmental delay:

"Focus on your child's strengths and interests and hopefully he 
or she will find a career that is fulfilling and rewarding." 

This may come as a shock to Ms Andrews and the rest of the Very High Functioning Autism Speaks organization but most children receive an autism disorder diagnosis because of their deficits, not because of their strengths or interests.   Many families are literally trying to live each day with their severely autistic, intellectually disabled child, usually a son, to the best of the PARENTS ability. Some lose the battle when an autistic child goes missing and is found in the worst of circumstances.  Some deal with noise levels, and chaotic conditions, that can result in threats of eviction from apartments and condominiums as is now occurring in Ottawa. Some see self injurious behavior in their child on a regular basis. Some struggle to communicate with their child.  

The corporate officers at High Functioning Autism Speaks are reportedly well paid.  They should offer more than feel good platitudes and meaningless tripe as advice to parents dealing with their child’s harsh realities.  The corporate officers at High Functioning Autism Speaks should at least PRETEND they care about the 50% of the autism spectrum with intellectual disabilities. At the very least they should not engage in the misrepresentation of autism challenges to the world at large. 


Ian MacGregor said...

6We chose to remove ourselves from a second story condominium. Kassie, my daughter was a stomper, still is, and she was also a table-tipper, that has stopped.

One day she turned on the water in a bathroom sink. We didn't hear it running, but eventually as it was hot water, the smoke alarm went off. I saw that the water was inches think on the bathroom floor.

I ran down and knocked on my downstairs neighbor's door. I ended up waking her up. When she opened the door I could see a curtain of water raining on her living room. I apologized, and as we were talking,
upstairs the stomping started, and the dining table was tipped over. It was incredibly loud. We had talked about moving for sometime, but I decided then and there to do so.

My insurance paid the damages, but that's not the end of it. We were called by the escrow officer dealing with the place we planned to move. The news was that the insurance company was refusing to take on the new place, because of the claim. on the old one. Escrow was due to close in a few days, I was able to find someone to insure the place, so things worked out in the end.

I don't know the situation of the eviction on Ottawa, but if its anything like the situation above, it is understandable

Anonymous said...

I am walking your road, Harold, right down to the seizures, including elopements, SIBs, intellectual disability... I have seen my husband kicked out of the military, our house burned down, and have had my arm broken. I get it. Autism Speaks is NOT my son's autism - which doesn't speak.

That being said, I try to always look for strengths and interests. Call me a cockeyed optimist, but certainly there are interests and develop-able skills, and life needs to be more than bouncing from one 'incident' to the next. That keeps me going on the moderately bad days (the really bad days don't allow time to think!) This awareness has proved useful working with professionals, who often get caught up in reacting to crap, primarily looking to keep the system running smoothly. It is appropriate for people to have strengths and interests - with or without a Dx.