I No Longer Hear My Autistic Son's Voice When Autism Speaks

I  was once very impressed with Autism Speaks. My son Conor, with Autistic Disorder, severely autistic,   wore an Autism Speaks cap and my vehicle had an Autism speaks sticker near my licence plate. In the ongoing struggle by parents pushing for a cure for autism disorders Autism Speaks was a powerful voice.  It now looks, increasingly, as though Autism Speaks has become at best a professional charity seeking to placate all without any consideration given to its guiding principles and how they are impacted by some of those they embrace with open arms.   

Two of those with whom Autism Speaks engages are Jon Elder Robison and Alex Plank both of whom oppose the concept of curing autism which is, in theory, one of Autism Speaks guiding principles. Mr. Robison to his credit is generally polite, if disdainful about curing autism. Mr. Plank however hosts a forum, Wrong Planet, in which anything goes in attacking people seeking to cure autism. 

Parents seeking to help their autistic children, particularly parents of severely autistic children, should begin reconsidering their support for Autism Speaks. Alex Plank and Jon Elder Robison, two very high functioning persons with Aspergers are the new voices of Autism Speaks? The Wrong Planet hosted by Mr. Plank posts offensive remarks about parents and those seeking cures. It recently posted comments that were depraved and disrespectful concerning the passing of Dr. Ivar Lovaas who did so much to help autistic children. Following is a capture of and a link to some of the  disgusting commentary from Mr Plank's Wrong Planet on the death of Dr. Lovaas:

This father of a 14 year old son , severely affected by Autistic Disorder,  no longer hears his voice when Autism Speaks.

Happy Independence Day to My American Friends From a Canadian Autism Dad

I am, like most Canadians, a cultural "spy " of all things American. Spy might be overstating it but we are very knowledgeable about you. We have no choice.  Your television programs and news broadcasts are beamed into our living rooms every day and have been for many years. That is not a complaint. That is a fact. Most Canadians enjoy American TV and movies and what ever the internet brings today. This Canadian is very happy that we live beside such a fine neighbor with whom we share so many common values. On your Independence Day I  wish you "the very best".

As a father of an Autistic boy I am particularly appreciative of the efforts made by Americans in advancing our understanding of autism disorders and seeking treatments and cures. Two names in particular stand out for this Autism father:  the late Bernard Rimland and Ivar Lovaas.  

Lovaas  provided the evidential  kick start that helped make ABA available to parents seeking to help their autistic children.  His study results and methods  have been invaluable  tools used in  the progress that has been made to date in Canada .... by parent advocates ... seeking to actually help our autistic children. 

Bernard Rimland is given credit for ending the very harmful refrigerator mothers' theory of autism causation that did so much damage to autistic children and their families.  He also pointed out that autism is increasing , a simple fact which is to this day denied by so many with career or ideological interests in denying the facts in front of their faces. With autism diagnoses themselves expanding from 1 in 166 to 1 in 150 to 1 in 110 within a few short years, and long after the DSM changes in 1994, there are still  many head in the sand denialists who argue that increases in diagnoses does not mean increases in tactual cases of autism They rely on unproven assumptions to dig in their heals. Rimland knew better.

I also thank the US for the debates going on in places like the IACC, the Inter Agency Autism Coordinating Committee. While I share the frustration of many autism parents with the flimsy science used to assert the lack of any vaccine autism connection and the  IACC /pharmaceutical  conflicts the IACC has at least discussed and acknowledged that the dramatic increases in autism diagnoses can only be partially explained by the 1994 DSM changes and social ascertainment factors. That in itself is progress as small as it may seem. The IACC has expressly acknowledged that a paradigm shift in our understanding of autism is taking place from the 100% it's gotta be genetic model identified and criticized  by Teresa Binstock over a decade ago to the modern view that autism disorders probably result from the interaction of genetic and environmental factors.

Small steps? Maybe, but they are necessary steps.  Once acceptance of the environmental aspect of autism becomes more widespread real research aimed at understanding fully what causes autism disorders, and finding cures, can begin and the bizarre obsession with genetic autism research can be reduced to a more balanced level. 

Whatever paths unfold for those with autism disorders, and the families that care for them, real progress is unlikely to come from Canada dominated as it is by a small clique of autism researchers some of whom think that the very idea of curing autism is nonsense.  In the UK the Neurodiversity embrace and enjoy the beauty of autism mindset also has a firm grip  and no progress is likely on that side of the ocean. Future autism progress will likely occur in the US as it so often has.

To all our American friends this Canadian autism dad says thank you and have another very happy Independence Day.

Autism Cure and Recovery and Obama's Divisive Disability Nominee

One of the great surprises of the Obama administration, for this Canadian father of a 14  year old boy with severe Autistic Disorder, and long time autism advocate, is the nomination of a divisive, confrontational but very high functioning young university student with Aspergers to a prominent US disability council.  Mr. Obama won respect around the world, including here in Canada, for his ability to reach across traditional political battle lines to move forward with a consensus.   Yet, with the nomination of Ari Ne'eman President Obama has nominated a young man of limited experience with, or knowledge of, autism disorders and absolutely no experience with severe Autistic Disorders who opposes curing autism, and mocks and ridicules the concept of recovery from autism disorders  despite the work done over many years by people like Dr. Doreen Granpeesheh of CARD to do exactly that.

Mr. Ne'eman also attacks the Autism Speaks organization which has raised autism awareness substantially by its many high profile media events and by its involvement in the establishment of World Autism Awareness Day recognized by the United Nations. Mr. Ne'eman himself has found an organization led by people just like him ... very high functioning autistic persons or persons with Aspergers.   He has displayed in his public comments no understanding of the serious life long challenges facing severely autistic children and adults. 

Nor has he shown any respect whatsoever for the role of parents in raising severely autistic children to live the most fulfilling lives possible and the wishes of many of them that research aimed at finding autism treatments and cures continue.  Mr. Ne'eman, the young university student, views the "autism spectrum" as an entity of which he is the natural leader. In Mr.Ne'eman's mind he is better suited as a person with an extremely mild form of autism spectrum disorder to decide what is important for severely autistic children than the parents and families who care for and love them.  For President Obama to embrace this divisive ego  as a disability council nominee is bizarre and unsettling. 

My opinion carries zero weight in US political matters.  Perhaps as a Canadian my opinion actually carries a negative factor. But as the father of a severely autistic son who was diagnosed with his Autistic Disorder before Mr. Ne'eman received his very mild Aspergers diagnosis, and who has been involved in autism advocacy for a dozen years, I know that this appointment will cause great harm to the future prospects of the severely autistic in the US and elsewhere in the world beginning right here in Canada where US influence is not an abstraction but a fact of daily life.  For many years US autism research, including the research conducted by Dr. Ivar Lovaas, and the work done at places like CARD and the May Institute, have been huge positive influences in helping Canadian children with autism disorders including my son.  It now looks as though US autism thinking is taking a turn for the worse and that will be felt here in Canada... to the detriment of children with severe Autistic Disorder ... children like my son Conor.

Wisconsin Early Autism Project Using ABA To Help Autistic Children

GazetteXtrA from Janesville Wisconsin features the Wisconsin Early Autism Project in Autism therapy providing results for local children. While anti-ABA advocates like Dr. Laurent Mottron and Michelle Dawson fight to prevent Canadian federal and provincial governments from funding ABA treatment for autism knowledgeable people, like those at the Wisconsin Early Autism Project (WEAP), who have actual experience with Applied Behavioral Analysis, and who really care about autistic children, are busy helping them using ABA.

As reported by GazetteXtra:

The Wisconsin Early Autism Project is based on applied behavior analysis therapy and is the only program in the state to replicate work and results developed by world-renowned autism expert Dr. Ivar Lovaas of the University of California-Los Angeles, Sherman said.

Wisconsin therapists trained in California and work with children not only in Wisconsin but also at clinics around the world.

The GazetteXtra story reports on several autistic children who have benefited from the Wisconsin Early Autism Project and ABA. While many credible reviews of the scientific literature endorse ABA as an effective, evidence based, autism intervention it is very helpful to read about the actual benefits these children have received from their WEAP administered ABA programs. When you read the parents talk about how their children are doing so much better, and how much happier the children are, you begin to understand why so many parents across North America are fighting for ABA treatment for their autistic children.

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