Thank You Suzanne Wright!
It was a good week for reality based autism advocacy for two reasons. First, I was very encouraged by Suzanne Wright's very honest description of the many challenges facing persons with autism disorders and their families in Autism Speaks to Washington - A Call for Action. Second I was very pleased to see John Elder Robison, an extremely high functioning and very successful, free ranging Aspie, who refuses to acknowledge that autism is a disorder that should be cured, resign all his positions with Autism Speaks. It appears that Autism Speaks may be abandoning its attempts to mollify the Neurodiversity ideologues that have caused so much harm to those with severe autism disorders. Hopefully its fund raising expertise can now be used to encourage the research necessary to help all persons with autism disorders and to develop national autism strategies to implement evidence based autism interventions in the US ... and in Canada.
I encourage everyone who actually cares about helping persons with autism disorders to read Suzanne Wrights powerful article in full. I am very impressed with her courage in speaking so openly and honestly about the realities faced by many with autism disorders, their families and caregivers:
"Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.
These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7.
This is autism.
Life is lived moment-to-moment.
In anticipation of the child’s next move. In despair. In fear of the future.
This is autism.
On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally. Physically. And especially emotionally.
Maybe they have been up all night caring for their teenage child who’s having a seizure.
Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.
Maybe their child has been trying to bite them or themselves.
Maybe they can’t afford the trip to a doctor specializing in autism.
Maybe there is a waiting-list for ABA, speech and OT.
Maybe their insurance won’t pay.
Maybe they don’t have the money to pay a special lawyer to fight for school services.
This is autism.
If any of this sounds familiar, you know autism. And if you know autism, you know we are looking at a monumental health crisis. And, we have no national plan."
I have a 17 year old son who suffers from severe autism disorder who has hit himself in the head repeatedly, bitten his hands repeatedly day in and day out until he was removed from the mainstream classroom and received his ABA based instruction (for which I and other parents had to fight) in a separate learning environment. He has put his hand through glass windows. He suffers from seizures and almost died in an adverse reaction to his previous seizure medication (as determined by the ICU team that saved his life at our local hospital). He has suffered serious meltdowns as a result of obsessive behaviors. Disruptions of routines can also be extremely difficult. He once left our home unnoticed and wandered across a very busy street oblivious to car traffic dangers until a good citizen of Fredericton stopped and took him to a nearby Ultramar service station/convenience store, called 911 and waited until I arrived to bring my son home. The consequences could have been much different and I have never lost sight of what might have been. 24/7 care is absolutely the rule in our house.
I am all too familiar with Suzanne Wright's list. I know autism. I believe fervently that researchers should be focusing on finding cures and treatments for all autism disorders not the meaningless "remediation" advocated by the very high functioning J E Robison who opposes the very concept of curing autism. I am very happy to see that Mr. Robison has abandoned his attempt to persuade Autism Speaks to stop seeking real understanding of autism, to stop seeking treatments and cures for autism. Above all Mr Robison's departure may help Autism Speaks find its way to once again speaking honestly about the challenges facing all persons with autism disorders including the 50% on the autism spectrum identified by the World Health Organization as also suffering from an intellectual disability.
Thank You Suzanne Wright!
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