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Groups oppose loss of services, education and insurance from

redefinition of " Autism "

mikewdow@...

From: jgilmore

Date: Thu, 26 Jan 2012 18:01:28 -0500

Autism Groups Oppose Redefinition of " Autism "

More Info

Thousands will lose education, services and insurance

The following is a press release that was released earlier today by a

coalition of autism related organizations, including the Autism Action

Network, opposing the redefiniton of " autism " proposed in the Diagnostic and

Statistical Manual V by the American Psychiatric Association. We believe

that the new definiton of " autism " will result in tens of thousands, perhaps

hundreds of thousands of people with autism losing their autism diagnosis

and with that the services, education and insurance coverage we have fought

so hard to provide.

Changes in DSM-5 Autism Definition Could Negatively Impact Millions

Autism organizations concerned that autism diagnostic changes will

jeopardize services, impair tracking, and disrupt research around the globe.

WASHINGTON, DC - Proposed changes to the diagnostic criteria for autism

spectrum disorders in the American Psychiatric Association's Diagnostic and

Statistical Manual of Mental Disorders - 5 (DSM-5) will potentially disrupt

appropriate and necessary services to hundreds of thousands of individuals

in the US, hamper the ability to track the numbers of people with autism,

and interfere with efforts to establish biological causes of autism.

" The proposed criteria make it significantly more difficult to qualify for

an autism spectrum diagnosis and they completely eliminate the categories of

PDD-NOS and Asperger's Disorder, " stated Fournier, National Autism

Association President. " In a well-intentioned desire to improve the

specificity of an ASD diagnosis, the new criteria may, in fact, go too far

and create unintended consequences. It is critically important that any

diagnosis address all the symptoms of an individual and allow them the

supports they need. "

The new criteria, rationale and previous criteria are available at:

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94

Currently, the federal government is spending millions of dollars to track

prevalence of ASDs in 11 states; the 2000 birth cohort is due out this year.

The Individuals with Disabilities Education Act (IDEA) requires schools to

report the number of students with autism annually. Both sets of data have

shown dramatic increases in autism spectrum disorders. One in 110 children

in the US is now affected by autism compared to one in 10,000 in the early

1980's. By significantly changing the criteria for diagnosis, the new DSM-5

will impair the ability of public health officials to compare future rates

of autism spectrum disorders to past rates, since the definition will have

changed. Accurate projections of trends in autism rates are critical to

planning educational interventions, Medicaid and adult services. " By

analogy, if the medical community chose to only count melanoma in the future

instead of all types of skin cancer, it would look like skin cancer rates

had gone down, even though other types were still present and needed

treatment, " said Ginger , Canary Party Executive Director.

In addition, incidence and prevalence are critically important to

investigating environmental causes of autism. " Toxic exposures to the

general population change

time and having good consistent epidemiology allows researchers to judge the

likelihood of a toxin being involved in autism, " stated Uram, SafeMinds

Executive Director. " The APA's new criteria should add a specific mechanism

to map the old diagnoses onto the new ones in order to allow researchers to

compare new and old datasets. We also would like to see the APA address the

issue of regressive autism by including age of onset as part of the

criteria. The etiologies of infantile vs. regressive autism may be entirely

different, but the new criteria do not distinguish them in any way. "

A primary concern for parents is the likelihood that many children on the

autism spectrum may not be diagnosed under the new criteria, thereby

depriving them of appropriate early intervention and treatment. " Even in the

states that have passed autism insurance legislation, the tightening of the

criteria for autism may exclude children who need treatment with Applied

Behavior Analysis, " said Holland, Managing Director of the

Birt Center for Autism Law and Advocacy. " Our organizations advocate that

the criteria should err on the side of over-diagnosing rather than

under-diagnosing since no harm is likely from providing educational services

to a young child, but great potential can be lost by not providing

treatment. " Early intensive treatment improves outcomes for children with

autism, making it highly cost-effective for tax-payers when compared to

providing adult services.

" The autism community strongly recommends that the proposed DSM-5 autism

spectrum disorder diagnostic criteria be revisited with these concerns in

mind, " concludes Sallie Bernard, President of SafeMinds. " These issues are

too important to remain unresolved. "

Ackerman

TACA Founder

Irvine, California

(949) 640-4401

Kay Betz

Executive Director, The Autism Society of Illinois

Lombard, Illinois

(630) 691-1270

Doreen Caruso

President/Co-Founder, The Pilot House

Fairfield, Connecticut

(203) 292-8452

Estepp

Director of Communications, Birt Center for Autism Law

Birt Center for Autism Law and Advocacy

Poway, California

(858) Poway, California

(858) 829-6454

Fish

Executive Director, Exceptional Families Network

Puyallup, Washington

(253) 830-4368

Fournier

President, National Autism Association

Portsmouth, Rhode Island

(401) 835-5828

Gilmore

Executive Director, Autism Action Network

Garden City, New York

(516) 382-0081

Rita Shreffler

Executive Director, The Autism File

Springfield, Missouri

(417) 818-9030

Ginger

Executive Director, The Canary Party

Brunswick, Maine

(855) 711-5282

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