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« New Yorkers! Call Albany to Pass DSM5 Bills! | Main | The Side of Autism The Media and Others Don't Want You to See »

DSM-5 Proposed Autism Spectrum Criteria – Update

DSM-5 Proposed Autism Spectrum Criteria – Update - June 13, 2012
By Katie Weisman, Director of Communications

The autism community is extremely concerned about potential impacts of the proposed criteria for Autism Spectrum Disorders in the American Psychiatric Association’s Diagnostic and Statistical Manual – 5th Edition. The new criteria are supposed to be finalized by December 2012 for May 2013 publication.

In February, an article in the New York Times leaked data from a retrospective study indicating that the proposed DSM-5 criteria reduced the diagnosis in the sample population by 39.4% compared to the DSM-IV Revised criteria. The response from the DSM-5 workgroup on Neurodevelopmental Disorders that is writing the new criteria was that this was not an appropriate sample since the original diagnosis would not have captured some symptoms that are included in the new criteria. Since that study (McPartland/Volkmar) came out in April, there have been three more publications regarding the proposed criteria.

The Worley/Matson study showed a drop of 32.3% when using DSM-5 criteria vs. DSM-IVR criteria on a sample of 208 children and adolescents (Mean age of 8.28, SD 3.28). The study also found that those subjects who met the old criteria but not the new criteria “still exhibited significant overall symptoms of ASD.”

The Matson et al. study screened a population of 2721 toddlers (age 17-36 months) at risk for a developmental disability. 415 toddlers met the criteria for an autism spectrum disorder using the DSM-5 criteria and an additional 380 toddlers met the criteria for either Autistic Disorder or PDD-NOS based on the DSM-IVR criteria. The researchers assumed that any child who met DSM-5 criteria would also meet DSM-IVR criteria since it is less restrictive. Their conclusion was that, potentially, there could be a 47.79% decrease in diagnosis as a result of the proposed criteria. Children who met criteria for PDD-NOS were disproportionately impacted – 79.94% of them did not meet the proposed DSM-5 criteria for ASD. A weakness of this study is that it did not actually diagnose the children. The data was based on care-giver reports.



The Gibbs et al. study was just published. It was done in Australia and the team actually did new diagnoses on 132 referral cases. The subjects ranged from 2 to 16 years of age (Mean=6.06; SD=3.38). The ADOS and the ADI-R were administered to each child and their caregiver. 111 subjects were diagnosed with Autistic Disorder, PDD-NOS or Asperger’s Disorder using the DSM-IVR criteria. Of those, 26 did not meet the criteria for Autism Spectrum Disorder using the proposed DSM-5 criteria – a decrease of 23.4%. Again, the children diagnosed with PDD-NOS were most impacted – comprising about 2/3 of the decrease. This study identified the requirement for two criteria under the Restrictive and Repetitive Behavior domain as the most common reason for exclusion.

The Field Trials, as reported by Dr. Swedo at IMFAR, indicate that the decrease in the number of identified ASD cases using the proposed criteria would be in the single digits, but that this would be somewhat counter-balanced by the inclusion of some cases that had been missed by the DSM-IVR. I have not been able to get the exact numbers from Dr. Swedo, but I am still trying. The concern expressed in the Autism Speaks letter below is that the field trials included only 83 cases – all children.

The Bottom Line At This Point
We don’t have enough data to be sure of the exact impact of the new criteria on autism spectrum disorders, but the information so far indicates that there will likely be a drop in cases and that the drop will likely be significant. The studies indicate that the children formerly diagnosed with PDD-NOS will be the most impacted. Also, at this point, there is absolutely no data on how the proposed criteria will impact adults on the spectrum.

The primary concerns of the community are all still valid at this point:
1. That a significant portion of the ASD population may be excluded by the proposed criteria – thereby impacting educational and Medicaid services and insurance.
2. That the tracking of incidence and prevalence numbers will be impacted making it very difficult to continue to follow the trends in ASD diagnosis.
3. That there is insufficient research on this issue and that much more research needs to be done.


Take Action
1. Comment today or tomorrow on the APA website about your specific concerns. Go to dsm5@psych.org. Please put Autism or ASD in your subject line.
Public comments end on Friday, June 15th.

2. A parent workgroup lead by SafeMinds and the Holland Center is developing an online survey to collect our own data in the “real world”. Watch for announcements and please help us distribute it to as many clinicians as possible for their input. The more data we can collect, the better able we will be to take action to resolve this issue.

3. Read and consider signing the GRASP petition to the NDD workgroup within the blog post linked below.

4. Support state legislation in New York, Illinois, New Jersey and other states that are attempting to protect insurance coverage for those with ASD. Sign up for alerts from the Autism Action Network at http://ssl.capwiz.com/a-champ/home/

Resources:
SafeMinds – www.safeminds.org – to sign up for our newsletters and updates
APA Website with both sets of criteria: http://www.dsm5.org/proposedrevisions/pages/proposedrevision.aspx?rid=94
Most recent Autism Speaks letter to the workgroup:
http://www.autismspeaks.org/blog/2012/06/11/dsm-5-update-our-letter-revision-committee
Most recent blog by Michael John Carley at GRASP:
http://grasp.org/profiles/blogs/dsm-5-update-less-press-more-talking-and-heavier-critiques?xg_source=activity

References:
Brief Report: An Exploratory Study Comparing Diagnostic Outcomes for Autism Spectrum Disorders Under DSM-IV-TR with the Proposed DSM-5 Revision.
Gibbs V, Aldridge F, Chandler F, Witzlsperger E, Smith K.
J Autism Dev Disord. 2012 Jun 8. PMID: 22677932
DSM-IV vs DSM-5 diagnostic criteria for toddlers with Autism.
Matson JL, Kozlowski AM, Hattier MA, Horovitz M, Sipes M.
Dev Neurorehabil. 2012;15(3):185-90. PMID: 22582849

Comparingsymptoms of autismspectrumdisorders using the current DSM-IV-TR diagnostic criteria and the proposed DSM-V diagnostic criteria

Worley, J., and Matson, J.L.

Research in Autism Spectrum Disorders. 2012; January 26 Science Direct

Sensitivity and specificity of proposed DSM-5 diagnostic criteria for autism spectrum disorder.
McPartland JC, Reichow B, Volkmar FR.
J Am Acad Child Adolesc Psychiatry. 2012 Apr;51(4):368-83. PMID: 22449643


Comments

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He is 26 now Kim.
Someone asked the other day if you could be young again would you. I said no, I have lived my life and I don't want to relive it.
There is a lot of water under the bridge here.
Lots of professionals; unbelieveable amounts.
Now all said and done the schools did the best job with him. Second only to what my son's entire family did for him.
It is just none wanted to educate me on PDD-NOS untill the school psych at an eighth grade meeting.

Meanwhile; I had long since took it upon myself to go to autism meetings, -- told his peds that I thought he had autism in which they laughed and assured me he did not. I don't think they knew that PDD-NOS was autism either.

During all this we also had epilepsy; again the medical profession not the teachers laughed, and assured me he had no epilepsy as he did the absentee seizures and myclonic jerks in front of them -- apparently they only recognized the full blown tonic seizurs. .

the professionals teased out other stuff though like tourettes, OCD, Attention deficeit, something about not static in his learning although immature all that and more - just not seizures and an explaination of what PDD-NOS was

To Benedetta, you really should have a Board Certified Developmental Pediatrician diagnosing you child NOT THE SCHOOL!!!!!

I don't know - the whole thing is messing with our heads.
Has been messing forever - because it was years after the schools dignosed my son with PDD-NOS that I did not know that was a form of autism??? I kept thinking to myself and I had friends and neighbors that would say --- it looked like autism to them. But I would say; Oh, no the schools say it is PDD-NOS-- what ever that is????
Then a new school changed it to apsergers - then much later after highschool it is back to PDD-NOS and good gosh - I am tired.

but where are they going to place PDD-NOS and aspergers if not on the autism specturm? I mean -- Lay people, without college educations - friends, and neighbors were telling me it looked like autism to them????

The main idea for the

"Autism Spectrum Disorders in the American Psychiatric Association’s Diagnostic and Statistical Manual – 5th Edition"

is to move the goalposts, redefine everything... and then state the "real Autism numbers" are not actually real.

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