DSM-V Goes Forward: Major shift in diagnostic criteria for Autism Spectrum Disorder approved.
By Holly Bortfeld and Summer Stech, Esquire
The APA just approved a significant revision to the way Autism is diagnosed. Here is the official announcement.
Who will this effect?
Studies show as many as 75% of people with Asperger’s Syndrome could lose their diagnosis, and maybe their services.
Studies show as many as 79.95% of people with PDD (PDD-NOS) could lose their diagnosis, and maybe their services.
No one knows how this will actually play out yet. Studies show that people diagnosed with Asperger’s today, if re-evaluated under the new criteria, up to 75% may lose the diagnosis and instead get a diagnosis of "Social Communication Disorder" which has no treatments, programs or insurance coverage.
Unless a program changes their requirements to force a re-diagnosis, your diagnosis won't change. Schools are legally obliged to provide based on NEED, not diagnosis, so it shouldn't impact school services as much as state services. SSI and CA's Regional Centers already do not accept Asperger’s as an automatic qualifier. They want proof of QUALITATIVE impairment. If Medicaid starts requiring a qualitative impairment criteria, then it's going to disqualify many people from services across the country.
TACA Statement on DSM-V changes
- We believe that this could have a detrimental impact on services that are determined on the basis of a medical diagnosis such as insurance, social benefits, and state and federal agencies providing services to individuals with disabilities as defined by the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.
- Children who were previously diagnosed under DSM-IV DO NOT lose their diagnosis and do not need to be re-diagnosed unless there is a discernible, clinical reason to reevaluate.
- Children receiving special education should not be impacted as Asperger’s, PDD-NOS, and childhood disintegrative disorder are not disability categories in IDEA 2004 and these children were already being served based on their individual needs under one of the other 13 categories in IDEA (such as Autism or Other Health Impairment). School districts should not be requiring a medical diagnosis or a re-diagnosis to determine eligibility or services.
According to the APA, one of the key points for reworking the diagnostic criteria was so that schools could create better tools, placements, curriculum, etc. But after 68 years of having the Asperger’s diagnosis on the books, there are no school-based curricula or tools directed at Asperger’s, and there are only placements in a few school districts in the US, so it will be interesting to see if this change helps spur on new curricula.
What does it mean for school services? Legally school districts provide services based on an Autism diagnosis (IDEA Amendment 1990). If a student has a diagnosis of Asperger's under DSM-IV, and they have been found eligible for special education, they were found eligible because they have "autistic-like characteristics" and therefore served under the category of autism. A student currently does not have to have a diagnosis of autism to receive special education under the autism category because this is a medical diagnosis and not an educational diagnosis. Some districts will request that parents have a medical diagnosis, but this is not necessary.
Where there could be an issue is if a parent is pressed to go get a diagnosis because the district believes the student would not be diagnosed with Autism under DSM-V. A district obviously cannot force any medical treatment or diagnosis. It is their job to determine if the child is a student with a disability under IDEA as determined by the IDEA definition AND whether the student is in need of special academic instruction on the basis of their disability. If the parent were to follow through on the district’s request to get a new diagnosis and the child was found to not have Autism, this would not automatically let the district off the hook, but it would give them the strength of arguing that the child does not have a disability therefore they do not need to make the second determination as to whether the s/he needs services.
Educationally, Asperger’s and PDD-NOS are not in one of the 12 specific categories of disability under IDEA, but it could fall in to the 13th: “Other Health Impairment” category.
Where parents should be much more concerned is if their child receives an alternate diagnosis or is found to not meet any diagnostic category in DSM-V is for insurance coverage, state and county services, and benefits. These agencies do rely on the medical diagnosis and can force a re-diagnosis. For once, school districts may be the least of your concerns.
Who can diagnose Autism?
Developmental Pediatricians (doctors who have special training in child development and children with special needs)
- Child Neurologists (doctors who work on the brain, spine, and nerves)
- Child Psychologists or Psychiatrists (doctors who know about the human mind)
- Clinical Licensed Psychologists, NOT School Psychologists
Excerpted from the CDC website.
“Just say NO, thanks”
Schools cannot force you to get a new diagnosis. Remember, a diagnosis can only come from a board-certified professional and many schools do not have them. If they mention re-evaluation, ask for the credentials of the evaluator, as it’s very likely they don’t even have one on staff.
Illinois blocks DSM-V limitations
Illinois’ SB679 says anyone with an autism diagnosis according to the criteria laid out in the DSM-IV will retain their diagnosis for insurance coverage regardless of what the APA does with future editions of the DSM. Other states need to follow suit with their own similar bills.
Let us know!
If your school or service provider notifies you that you MUST have your child re-diagnosed, do three things – ask who will pay for the new evaluation, what their credentials are, and let TACA know!
TACA has been blogging on this topic for a year:
DSM 5: LAST CALL TO ACTION. Proposed Changes in the Autism Diagnostic Criteria May 3, 2012
DSM5 LAST CALL TO ACTION May 3, 2012
A Physician’s Perspective on the Proposed DSM-5 Autism Diagnostic Criteria Feb 15, 2012
Diagnostic Criteria Changes: What Your Family Needs To Know Jan 5, 2012
DSM-5: Autism vs. Asperger’s Syndrome Diagnosis Dec 16, 2011
DSM-5 Comparative Studies - PDF