Saturday, June 14, 2014

Canadian Autism Dad Says Thank You Florida Rep. Bill Posey

In Canada we could use more federal politicians speaking honestly and accurately,
 as  Florida Rep Bill Posey has done in the US,  about Canada's autism crisis  including 
the realities  facing those with severe autism disorders and their families. 

Here in Canada we have seen very little national leadership in addressing Canada's autism crisis.  Particularly during the Stephen Harper - Mike Lake era the federal government has expressly refused to engage  in any meaningful way in addressing Canada's autism issues.  In Canada we have relied heavily on American leadership with respect to autism research.  Against that background this father of an 18 year old son with severe autism disorder, intellectual disability who like so many with those frequently co-occurring conditions also suffers from serious epileptic seizures,  says thank you to  Rep. Bill Posey (R-Fla.) for his demonstrated knowledge of autism disorder challenges.  I am not trying to offer my opinion of the US Combating Autism Act or any other American political issue.  As a Canadian it is not my place to do that.  I do appreciate though his informed, honest description of autism realities and his willingness to openly speak for those with severe autism who can not speak for themselves. 

Unlike so many politicians in Canada, and the US, by my reading, Rep. Posey  is well aware of the realities facing many persons with autism disorders and their families.  As the father of a son who suffers from the severe end of the autism disorder I particularly appreciate his willingness to speak openly about those on the severe end of the autism spectrum and the challenges they face, challenges not even mentioned by most Canadian federal politicians. 

Some excerpts from Rep. Posey's statement found at THE HILL'S CONGRESS BLOG:

Fix the Combating Autism Act

Autism Spectrum Disorder has increased dramatically in the last 25 years.  It is a crisis.  


At a recently called House Oversight Subcommittee meeting, Dr. Insel admitted that after eight years and spending $1.7 billion, the programs developed in the CAA have failed to determine the causes of the enormous increase of the prevalence of autism, failed to prevent a single case of autism, failed to produce any new biomedical treatment for autism, failed to materially reduce the age of diagnosis of autism, failed to ensure appropriate medical care for the co-occurring health problems faced by many with autism, failed to ensure even basic safety protocols for people with autism who "wander", unfortunately some to their deaths, and overall, failed the families facing autism—most especially the approximately one-third of families with children most severely affected by autism, who literally cannot speak for themselves, and whose severe disabilities portend one of the largest unfunded federal fiscal liabilities of the 21st century.


Instead, the IACC plan sits on a shelf while the NIH actually funds autism research through an entirely different set of processes and priorities, completely divorced from the strategic plan.  This disjointed process results in producing at best few effective results.   Furthermore, the agency has failed to evaluate and validate any of the commonly used treatments currently being used so that parents may eventually obtain insurance reimbursement. 

Not only does autism research funding fail to match the IACC recommendations, but the Government Accountability Office (GAO) recently found that up to 84% of such research had the potential to be duplicative.  For example genetics research funding far exceeded the IACC recommendations while environmental exposure research fell far short of those recommended.  Government witnesses affirmed during the hearing that recent research demonstrated that upwards of 55 percent of autism is linked to environmental factors, but the government research funding balance does not reflect this reality. 


We owe it to those most severely affected by autism, and all those who love them, to give this our best shot.  I fear that in the rush to pass “a bill” we are missing an opportunity to pass “the right bill” that produces results.  I hope my colleagues on both sides of the aisle will work with me to make the time to do so. 

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