Fw: Proposed Redefinition of Autism Threatens Healthcare, Services and Research

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----- Forwarded Message ----To: Karp Sent: Thu, June 16, 2011 1:01:53 PMSubject: Proposed Redefinition of "Autism" Threatens Healthcare, Services and Research

DSM V Threatens Autism Families

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Help us stop the proposed changes

The American Psychiatric Association (APA) is moving along with the latest version of the Diagnostic and Statistical Manual, Fifth Edition (DSM V), the bible of diagnosing “mental†disorders in the US. And they plan to have a completely new definition of “autism†which will have no good results for our kids or families. As part of the process, the APA is soliciting public comments on the proposed changes prior to their target publication in 2013.

The APA proposals have drawn a great deal of criticism, not the least from large numbers of prominent psychiatrists, and publication has been delayed several times, and could be postponed indefinitely. The following are the comments of the Autism Action Network on the DSM V, which is committed to doing everything possible to prevent a redefinition of “autism†that injures the autism community.

We are concerned that the redefinition will lead to a whole range of negative impacts for the autism community ranging from the loss of access to services and placements in autism specific programs, to delaying definitive epidemiology for another twenty years, to the loss of insurance coverage, to diluting the definition of autism to include people who may be socially awkward but completely functional. Alternately, we see no compelling reason to undertake a redefinition of autism at this time.

The following are our primary main concerns:

Sixteen years of autism epidemiology would be undermined

Changing the diagnostic criteria will undermine the past 16 years work of autism epidemiology that used the criteria in the DSM-IVR. Researchers and critics would correctly state that studies using two different sets of diagnostic criteria are not comparable. The timing would have an especially damaging impact now that a significant body of information using the DSM-IVR criteria has emerged from the work of the federal Autism and Developmental Disabilities Monitoring Network (ADDM). ADDM would not be comparable with work using a new definition in the future, which undermines the whole ADDM effort.

No effort is made to incorporate the physical symptoms of autism

Research has revealed a growing number of physically identifiable and measurable symptoms associated with autism, and sub-types of autism, yet this information is not reflected in the proposed DSM V, which only includes behavioral and intellectual diagnostic criteria.

Regression is ignored

The proposed DSM V ignores the key distinction between individuals who appear to express autistic symptoms from birth and those who regress after a period of normal development. The proposed DSM V completely ignores the issue of regression as an indicator of separate autism phenotypes.

People with Intellectual Disabilities will be excluded from “Autismâ€

The proposed language seeks to make a distinct between social and communication deficits that are caused by "autism" and those that are caused by "general developmental delays". This would be an extremely difficult if not impossible distinction to make and raises many troubling questions. The following language is proposed:

“Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delaysâ€

How will the distinction be made between people who have social and communication deficits as a result of “autism†and those who have them as a result of “general developmental delay?†What is the basis for claim that intellectual disability is not a common symptom of autism? Will people who are currently diagnosed with autism, who also have significant intellectually disabilities, be excluded from autism spectrum disorders in the future?

Negative effects on people currently diagnosed with autism

People who meet the criteria for ASD under the DSM-IVR may not meet the new criteria resulting into a loss of insurance coverage specific to people with autism, placement in a range of programs, housing and other services for people with autism, and loss of educational services specified under the Individuals with Disabilities Education Act for students with autism. Further, the undermining of autism epidemiology would do irreparable harm to the efforts dependent on epidemiology to find the causes and treatment of autism.

APA has not made a compelling argument for a redesign of autism. Until the negative impacts that would inevitably arise from redefining autism can be adequately addressed we believe the only prudent course would be to continue using the current language in the DSM IVR.

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