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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2 Harmful Acts: Autism Hate Letter And CHEO Removing Autistic Child With GDD From Early Intervention Program

The notorious autism hate letter that targeted an Ontario family and their autistic child has sparked horror and outrage around the world.  As the father of a 17 year old son with severe autistic disorder, profound developmental delays and tonic-clonic (grand mal) seizures I recoiled when I heard the news of this hateful act and I believe I have some understanding of  how the family felt and hope they are handling it as well as possible.  I suspect that the person or persons responsible for this act are now fearful that they may become publicly identified. Why the person felt it necessary to commit such an act is a mystery to me. I am happy to see that people around the world have responded with condemnation of the letter.

At the same time I am disappointed with the lack of reaction to the decision by the Children's Hospital of Eastern Ontario to write off an autistic child with "global developmental delay" by removing him from an early intervention program.  Call it what you want, justify it as you please, but the decision of the CHEO will have a real impact on the child with severe challenges by removing him at a critically important point in his life from the only solidly evidence based intervention for persons with autism and intellectual disability, "global" or not.  

Many have speculated about the mental health status of the author of the notorious autism hate letter. The harmful CHEO decision though was made by people whose mental health status is not in doubt, people who know what harm they have done to a child very much in need of their help, people who obviously lack compassion and concern for the well being of the autistic child with "global developmental delay" that they do not want darkening the "outcomes" profile, or assessments,  of the services they offer. 

A hate letter and a refusal to help.  Both are harmful. Neither can be justified.

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Children's Hospital of Eastern Ontario (CHEO) Writes Off Child With Autism AND Global Developmental Delay (Intellectual Disability)

CHEO: No Teddy Bears & No Autism Program 

for Severely Challenged Children 

The Children's Hospital of Eastern Ontario has been added as a respondent in a human rights proceeding, and accused of discrimination, after it kicked an autistic child with global developmental delay, severe intellectual disability, out of an early intervention program.

In an Ottawa Citizen article Don Butler reported:

"CHEO declined to comment specifically on the case Thursday. But in an email, it said the hospital’s care providers are “incredibly committed to the well-being of kids and would never discriminate against a child because of a disability. “Our clinicians have to make difficult decisions about the appropriate care for each child, and they always strive to base their decisions on the child’s unique needs and best interests.” The only reason a child would be discharged from the intensive behavioural intervention program, the hospital said, “is if the treatment were not working for him or her.”

The CHEO did not indicate what "the appropriate care" would be for a child with autism and global developmental delay OTHER THAN early intervention behavioural intervention.  It would be nice if the health "care" providers of the CHEO could indicate what other care was "appropriate" for this or any other child with autism and severe intellectual disability.

In the absence of any indication as to what other care would be of assistance to a child with autism and GDD, in lieu of early intervention,  the only reasonable conclusion is that the alleged health care providers of the CHEO have simply written such children off as unworthy of assistance.  

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