More on proposed change in autism diagnosis

I read the post Patricia Wright published here (titled Autism services should be based on need, not diagnosis) with great interest. The revisions proposed to theDiagnostic and Statistical Manual of Mental Disorders (DSM-5) will be part of the first major revision to this manual in 17 years, and an expert panel appointed by the American Psychiatric Association is assessing the impact of a narrowed definition of Autism Spectrum Disorder.

The New York Times article Patricia mentioned in her post described the proposed narrowing of the definition of Autism — it would consolidate the current definition of Autism Spectrum Disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual.

Many of us working in social services have already experienced the impact of narrowed eligibility for services. Here at Easter Seals Central Texas, we have already experienced a 25% drop from last year in the number of children enrolled in our Early Childhood Intervention program. We attribute this to the narrowing of eligibility criteria in Texas that already began in September. Eliminating services for children early on like this will surely leave many children with continued needs as they enter the public education system — where the cost for providing services increases significantly.

Criteria proposed for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders are posted on the DSM-5 web site and will be open for additional public comment this spring. Final publication of DSM-5 is planned for May 2013.


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  1. Jessica Portilla Says:

    I am especially concerned about the impact on bilingual families who have less access to resources in the community as a result of language barriers. I plan to keep a close eye on the proposed changes.

  2. Teri Nghiem Says:

    Some of our children come into the Program with a form of ASD diagnosis already. Luckily, ECI programs have highly skilled and trained staff who can identify and recommend services based on their needs and characterisics/behaviors, before even needing a formal written documentation from their PCP. Unfortunate for those families in the schools.. most will have to start over with resources and support systems.

  3. Jessica Moore Says:

    To be completely honest, I’ve always thought a PDD-NOS diagnosis would be frustrating; “not otherwise specified” is vague. But the fact is that the PDD-NOS diagnosis is still on the autism spectrum and that the reason for the diagnosis is because symptoms of PDD-NOS present very similarly to those of ASD. People with PDD-NOS (as well as people with Asperger Syndrome) still experience similar issues and struggles as people diagnosed with ASD. It is clear these people need intervention and help and I agree that it seems like the new proposed definition is excluding them from it. Now that is truly frustrating, but Lisa is right. The light at the end of the tunnel is Advocacy and we should all share our thoughts and comments!

  4. Cynthia Laboy Says:

    Thanks for blogging about this. I feel that the proposed changes will greatly impact many children and families nationwide. In addition, newly diagnosed children will go without some of the supports and services that previously would have been available to them.

  5. Amanda Says:

    Dear Parent:
    We are seeking volunteers to participate in a research study about what it’s like to grow up with a sibling who has autism. Do you meet the following requirements?
    1. Are you the parent of at least two children?
    2. Does one of your children have an autism spectrum disorder?
    3. Does one of your children not have an autism spectrum disorder?
    4. Is your child without autism between the ages of 8 and 18 years?
    If so, please consider volunteering by clicking on the link below. The survey will take approximately 45 minutes to complete and may be taken at a computer of your choice that has internet access. The first part of the survey will be taken by you. The second part will be taken by your child that does not have an autism spectrum disorder.
    If you would like to volunteer to take this survey, please click on
    and read the consent information at the beginning of the survey. We will not collect your name or that of your child. However, there is a potential risk of loss of confidentiality in all email, downloading, and internet transactions.
    If you have any questions, please contact Kathy DeOrnellas, Ph.D., Principal Investigator at or 940-898-2315 at Texas Woman’s University.
    Thank you,
    Kathy DeOrnellas, Ph.D.

  6. Lisa Tate Says:

    Excellent point Miriam.
    In spring 2012, an opportunity for a third and final round of comments from visitors will be available. Systematic review by each of the work groups will then occur for consideration of additional changes.
    We should all take this opportunity to comment, pointing out concerns like the ones you share above, before the final diagnostic criteria decisions are complete.
    Thanks for your response!

  7. Miriam Nisenbaum Says:

    I am concerned about what will happen to school age children currently with the current ASD diagnoses. If Asperger’s and PDD NOS that being proposed to be eliminated as a result of the proposed revisions to the DSM-5. I can see the potential for schools to retest and reclassify children so that current services will be either significantly reduced or eliminated.

    This has the potential to leave many children without the necessary school supports needed. It will also leave children receiving therapies outside of school unable to access Occupational, Physical and Speech Therapy as they may no longer have a diagnosis to support those services.

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