Autism Action Network: It Started: DSM5 Used To Revoke Autism Diagnosis

The Autism Action Network reports, in It started: DSM5 used to revoke autism diagnosis,  that the revoking of autism diagnoses under the DSM5 regime and the resulting denial of services and educational placements for people with autism disorders has begun.   Here in Canada the Childrens' Hospital of Eastern Ontario, CHEO, has excluded from its autism early intervention program a child it described as having global developmental delay, the express exclusionary phrase used in the DSM5 Autism Spectrum Disorder diagnostic definition.  Swedo, Lord and company were warned this would happen and stubbornly insisted that their vision of autism be imposed on the lives of children who would have otherwise received DSM-IV autism diagnoses.  Presumably they are happy to see the results of their efforts.

It started: DSM5 used to revoke autism diagnosis 

Share your story to stop the DSM5 

As many of us expected, the new definition of “autism” laid out in the Diagnostic and Statistical Manual, Fifth Edition (DSM5) is being used to deny services and educational placements to people with autism. We are receiving more and more reports from around the US (Buffalo, Dallas, Utica, etc.) of schools, Medicaid providers, insurance companies and local government service providers using the DSM5 to deny services to people who have an autism spectrum disorder. 

If you are facing difficulties or the loss of services as a result of the DSM5 please let us know. Please contact us atjgilmore@autismactionnetwork.org with your stories. Your stories will be a crucial component in stopping the DSM5. 

All the studies on how the DSM5 will affect people with autism have shown huge numbers will lose their diagnosis, their services, Medicaid and educational placement along with it. One study from the Child Study Center at Yale University showed a 55% reduction, including 30% of those categorized as low-functioning.

We have had bills introduced in several states including New York, New Jersey and Connecticut to require the continued use of the DSM4 and other diagnostic tools such as the ICD. We are working on getting bills introduced in other states. Illinois has already passed legislation prohibiting the use of the DSM5 to deny services. And we are working to prevent the federal government from using the DSM5. 

The DSM5 discards the labels of “Asperger syndrome” and “pervasive developmental disorder not otherwise specified (PDD-NOS)” Schools and insurance companies and Medicaid providers are using these changes to tell people who have an Asperger’s or PDD-NOS diagnosis that they no longer have “autism” and are losing insurance coverage, placements in special education and other services. 

The DSM5 is wrapped in controversy. The federal National Institute of Mental Health considers the DSM5 so flawed that they will not spend any research dollars on studies that use it. We do not have to put up with this. 

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Obama Disability Nominee Ne'eman Says Curing Autism Disorders is Morally Reprehensible

The Autism Action Network has called for its American readers to contact their Senators to voice their opposition to US President Obama's disability council nominee Ari Ne'eman. I wish them success although from what I understand the nomination is unlikely to be disturbed.  This Canadian father of a severely autistic son  is very disappointed that Mr. Ne'eman will ultimately be approved and will be in a position to influence autism policies in the US and consequently around the world.  

I have followed with great interest the US Health Care debate and President Obama's historic struggle to bring health care to all Americans.  I am perplexed that the great US health care president would, at the same time, appoint  to an important disability council  a very high functioning person with Aspergers who does not believe that autism is a medical disability or disorder and  is opposed to curing autism spectrum disorders.  

Mr. Ari Ne'eman does not view autism disorders as disorders in a medical sense  notwithstanding his own medical diagnosis of Aspergers Disorder.  Nor does he restrict himself to  rejecting a cure for himself, or for other very high functioning persons with Aspergers Disorder.  He tells the world that all autistic persons do not want to be cured.  

The Autism Action Network has gathered a number of Mr. Ne'eman's more outrageous and offensive statements:

"June 10, 2008 on Good Morning America, Neeman said, "We do not think to aim for a cure is the right approach to take."

 

December 10, 2009 interview with the CBC, "Autism is currently viewed as a disease of the medical model---Something to be cured or eliminated. That doesn't reflect how we view ourselves, that doesn't reflect our realities."

 

In his essay Equality Demands Responsibility, 2006, Ne'eman wrote, "But if we are to demand equal legitimacy, if we are to assert that a 'cure' is not only unnecessary and undesirable but morally reprehensible, then we must accept for ourselves equal responsibilities.""

This very high functioning gentleman does not seem troubled by his Aspergers disorder but there are many low functioning persons with severe Autistic Disorder who do suffer. Some never survive to the age of 12, the age at which Mr. Ne'eman apparently received his Aspergers diagnosis. Some are lost forever in local traffic, neighborhood pools or snow storms. Some require intensive therapy to prevent dangerous self injurious behavior.  Some live their lives in institutional and residential facilities  dependent on the care of strangers.  The young university student with  a very mild variety of Aspergers disorder opposes curing those with more severe, restrictive types of autistic disorders and purports, with no common experience and no legitimacy,  to speak on their behalf.

Mr. Ne'eman speaks about "our" views, "our" realities, how "we" view "ourselves".  My son has an Autistic Disorder diagnosis, assessed with profound developmental delays. He is severely autistic.  Mr. Ne'eman the high functioning young university student with Aspergers, and the abilities to interact regularly with the New Yorker magazine, the NYT and Canada's CBC AND negotiate socially in Washington DC political circles  does not know how my son thinks or views himself. Mr. Ne'eman does not have any knowledge whatsoever of my severely autistic son's realities.  When he claims to speak on behalf of all persons with Autism Spectrum Disorders he is misrepresenting himself, and autism disorders, to the world.

Personally, I find Mr. Ne'eman's opposition to curing the autism disorders that afflict so many children and adults to be morally reprehensible and I am very disappointed in US President Obama for appointing him to a position from which he can influence the lives of so many persons with autism disorders.

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