Friday, November 15, 2013

An Excellent Week For Autism Advocacy! Suzanne Wright Speaks Out and John Elder Robison Resigns



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!

7 comments:

Roger Kulp said...

Harold,I know there are all sorts of people who read your blog,and I hope somebody in the right place will see this.This is an open request to anyone connected to Autism Speaks who might be seeing this.

I am very interested in taking Mr.Robinson's place on the Autism Speaks Scientific Advisory Board.I do not know who to contact.I have sent emails to the research and clinical programs addresses on the Autism Speaks site,but have not heard back.

I am in a very unique position.I am someone who had a moderate to severe autism diagnosis,who,for decades,has experienced the absolute worst of all the behaviors,regressions,and sickness associated with autism.In the last few years,there have been a few treatable metabolic disorders that I have been found to have that have proven to be the cause of both my autism,and medical problems.

I am very high functioning now,thanks to medication and diet.
It was this treatment that kept me out of a residential treatment center when my mother died last year.

Unlike Mr.Robinson,I know a great deal about the medical research about autism.Not only have I directly benefited from it,but I follow it with great interest,and after spending the last five to six years in biomed oriented internet autism discussion groups,I have a pretty good idea of both treatments and the different situations families are in.

You do need an adult on your boards,who has experienced the worst of this stuff first hand.There are few,if any,others out there who have,like I have.I may not have the name recognition Mr.Robinson does,but I could be a much greater asset.

I desperately want to put all of my experience to work with an organization to help people.So if anybody connected with Autism Speaks sees this,please leave a comment with your contact information.

Roger Kulp said...

Harold,I know there are all sorts of people who read your blog,and I hope somebody in the right place will see this.This is an open request to anyone connected to Autism Speaks who might be seeing this.

I am very interested in taking Mr.Robinson's place on the Autism Speaks Scientific Advisory Board.I do not know who to contact.I have sent emails to the research and clinical programs addresses on the Autism Speaks site,but have not heard back.

I am in a very unique position.I am someone who had a moderate to severe autism diagnosis,who,for decades,has experienced the absolute worst of all the behaviors,regressions,and sickness associated with autism.In the last few years,there have been a few treatable metabolic disorders that I have been found to have that have proven to be the cause of both my autism,and medical problems.

I am very high functioning now,thanks to medication and diet.
It was this treatment that kept me out of a residential treatment center when my mother died last year.

Unlike Mr.Robinson,I know a great deal about the medical research about autism.Not only have I directly benefited from it,but I follow it with great interest,and after spending the last five to six years in biomed oriented internet autism discussion groups,I have a pretty good idea of both treatments and the different situations families are in.

You do need an adult on your boards,who has experienced the worst of this stuff first hand.There are few,if any,others out there who have,like I have.I may not have the name recognition Mr.Robinson does,but I could be a much greater asset.

I desperately want to put all of my experience to work with an organization to help people.So if anybody connected with Autism Speaks sees this,please leave a comment with your contact information.

Amy said...

THIS!!!! I identified with nearly ALL of the points that Suzanne brought up. I read each one and thought "is she in my house??!!"
My son is only 9yrs old. For the most part he is non-verbal. He is also prone to very violent meltdowns in which he becomes aggressive to others as well as himself. In January something happened and he went from engaging in SIB maybe just 9 times a day to over 40. He can't tell us what is going on. He spent three days in a rage state every 15 minutes. He was just recently diagnosed with severe anxiety. So severe that he will actually have twitches and jerks of his limbs. I have often felt that the autism community would just rather pretend severe autism does not exist. We feel like outcasts in our own society!!

Anonymous said...

Thank you for writing this.
My wife and I read Suzanne Wright's article with astonishment at how well she described our experiences with our 8 year old son. We were then outraged and shocked to read the mean-spirited reader comments which followed. The vast majority of the people who plead for awareness acceptance have a selfishly exclusionary view of those of us who literally are concerned about survival. We have no idea how our son will survive once we are gone. Hopefully our love, hard-work and commitment to him, combined with his wonderfully unique traits, will help him to reach self-sustainability before we are gone. I am optimistic that it will. But I do not know if that optimism is realistic. Only time will tell.

I do not want to change a thing about the core of who my son is as person or to force him into any preconceived notion of what a fulfilling life could or should be. I simply want him to be able to survive in a life he chooses when he does not have us to provide assistance for daily living.

I applaud Autism Speaks and Suzanne Wright for all they do to identify the causes and possible cures for those things which may keep my son from independently living the way he chooses someday.

Anonymous said...

http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

Yet this is the message that is getting through to people. Look at all the comments who agree that autism is just wonderful. Although I generally do not like Autism Speaks I was suprised to see this much hatred towards Suzanne Wright by Jessica Wilson.

Babs said...

Thank you so much for this. I came across the link to your article from autism.about.com page on FB. The page is full of self diagnosed aspies and I only follow to keep up with what they are posting. Which thankfully was your post. After reading John Elders post I was thoroughly sickened, so yours came as a welcome delight and you're from Canada to boot. I reside in Ontario and spend a great deal of my time fighting for better research and actual treatment to help those with autism. So I will be following your posts with great interest as you seem to be about the same things as I. Thank you for being another voice of reason, breaking through the herd of people that are hellbent on keeping our kids sick, unheard and without hope. I will be sharing this with everyone.

VMGillen said...

Good lord - I just flipped through some of the comments on Wright's piece. Again, I'd say that many of the self-id'd people with autism clearly have a diagnosis - consisten with autism, a grave and severe social disconnect. This is consistent with the APA's catastrophic treatment of autism - which remains a collection of symptoms, not not not a diagnosis. Medical analogy: these people have sore throats because they've been yelling and screaming, and my son may have throat cancer. . . still, both have sore throats.