Please forward to anyone and everyone you deem appropriate, especially if they’ve been following the DSM-5 debate closely . . .  

Dear all:

A second study that has just come to light claims that the DSM-5 will significantly reduce the amount of people (by 32.3%) who will qualify for an autism spectrum diagnosis. Furthermore, this study indicates that those whose diagnoses are eliminated by the newer criteria will include the more challenged, and not just the end of the spectrum that is better able to mirror greater society.

Given the statements of many DSM-5 Committee members since the story broke last Thursday, this study corroborates many fears, but it also raises new questions  (our summations will follow the study’s excerpts).

GRASP is grateful to authors, Dr. Julie A Worley and Dr. Johnny L. Matson of Louisiana State University, along with their representatives, for giving GRASP permission to post quotes from "Comparing Symptoms of Autism Spectrum Disorders using the Current DSM-IV-TR Diagnostic Criteria and the Proposed DSM-5 Diagnostic Criteria" (in press for "Research in Autism Spectrum Disorders").

Excerpts (2) from the final "Discussion" section of the study are as follows:

1. “The proposed revisions to the diagnostic category of ASD are significant . . . It was hypothesized that children meeting only DSM-IV-TR diagnostic criteria (APA, 2000) for ASD would score significantly higher (i.e., indicating more symptom severity) than children who were typically developing and significantly lower than those who met future diagnostic criteria for ASD on a measure of autism symptoms (i.e., ASD-DC; Matson & González, 2007). This hypothesis was only partially supported. That is, participants meeting only DSM-IV-TR criteria for ASD scored significantly higher than the typically developing children, but not significantly different than children meeting DSM-5 diagnostic criteria (APA, 2011). Thus, children and adolescents that no longer met criteria still had significant symptoms of ASD when compared to children who were typically developing. Even more concerning is that children and adolescents who met current, but not future diagnostic criteria had similar symptom severity of ASD when compared to children and adolescents who continued to meet diagnostic criteria. Therefore, the subset of children who met DSM-IV-TR, but not DSM-5 diagnostic criteria are experiencing significant impairments related to the core symptom domains of ASD. Thus, the proposed revisions may be decreasing sensitivity, suggesting that that the broader symptom definition utilized in the current diagnostic manual (i.e., DSM-IV-TR, APA, 2000) may be a superior classification system. “

2. “Ongoing research examining the impact of continued service delivery after early intervention services subside is urgent given the changing diagnostic categories and criteria of ASD proposed for the DSM-5 (APA, 2011). However, if ongoing treatment is necessary, who will pay for these services? Interventions currently utilized to treat individuals diagnosed with various ASDs are largely consistent and similar treatment methodologies should remain despite the newly proposed diagnostic category.  However, payment coverage for these children will likely become an obstacle. About a decade ago, the majority of insurance companies had exclusions for autism (Peele, Lave, Kelleher, 2002), but most now cover services for those diagnosed. However, it is probable that insurance companies will not provide treatment coverage for children who still exhibit significant symptoms of ASD, but no longer meet diagnostic criteria under the DSM-V definition of the disorder. 

            Another implication of the proposed diagnostic changes will be apparent in incidence and prevalence rates of ASD. With the proposal to narrow the symptom definition, fewer children will meet diagnostic criteria upon the publication of the DSM-5 (APA, 2011). Thus, a decreasing trend of incidence and prevalence rates should be observed once the DSM-5 is utilized diagnostically. A decrease in prevalence rates for ASD was observed in the current study when utilizing the DSM-5 diagnostic criteria compared to the DSM-IV-TR (APA, 2000). In the current study, the prevalence of ASD decreased by 32.3% when using the DSM-5 instead of the DSM-IV-TR. Although lower rates of both prevalence and incidence are pleasing, it may come at the cost of providing services to those who still require them.

            In closing, the proposed revisions to the diagnostic category of ASD are supposed to increase the specificity of the diagnosis. However, as observed in the current study, children and adolescents who met current, but not future criteria still exhibited significant symptoms. “

End excerpts.

GRASP’s commentary (and not necessarily the views of the study's authors) is as follows:

This study backs up some of the numbers that Yale's Dr. Fred Volkmar cited in his study as reported in the New York Times when this story broke last Thursday. Dr. Volkmar, who earlier resigned from the DSM-5 Committee, has had his study attacked by proponents of the newer criteria since then who seek to invalidate his findings. Two studies remotely corroborating each other (as we believe these two do) will be hard to attack.

GRASP has cited the disparity, and sometimes contradictory nature of damage control attempts by several DSM-5 Committee members in several media articles. But now that the evidence is quite strong that changes will be as drastic as feared, if not more so, it paints many in a negative light who have tried to downplay the level of change forthcoming, but it especially paints Dr. Brian H. Hunter in a poor manner. In what was a suspicious article to begin with (no contrary opinion provided—shame on author, Deborah Brauser), Dr. King's comments in last week's MedScape article should now be looked upon in the light of, at best, misrepresentation. Wethinks those who reassuringly tell us "No one will be left behind" really mean "No one will be left behind who deserves a diagnosis under the DSM-5 criteria."

PDF files of the entire Worley/Matson study are available to clinical or media professionals. You can request a copy by emailing press@grasp.org

What can you do if reducing the criteria threatens your child's special education funding, your services as an adult, or your self-esteem as an adult? Please maintain the following outline without letup:

1. Sign the petition found here, and forward the link with your appeal for people to sign everywhere and anywhere. Again: forwarding (especially through any and all appropriate social media sites) is arguably more important than signing.

2. Call the American Psychiatric Association (APA)—during normal business hours; once every day, if possible, at 703.907.7300. Yes, they are telling you to email instead. But we ask that you please instead be the articulate, impassioned, and peaceful nuisance that is needed in this debate, and not adhere to their instructions.

3. Email the your letters to apa@psych.org and to dsm5@psych.org

4. Check our Facebook page for updates, as well as to view the history and prior articles surrounding this issue since it broke 9 days ago. This is especially helpful for those of you who feel you need talking points for your emails to the APA.

Want extra credit?

Email angry but not irrational letters regarding Brian H. King’s comments and Deborah Brauser’s reporting techniques to Medscape at news@medscape.net. The people who comprise the DSM-5 Committee are probably smarter than 90% of us. But that doesn’t give them the right to insult whatever intelligence we have.

It’s one thing for the DSM to change in ways we don’t like. It’s another to be elusive or dishonest. They may have backed themselves into a conversation about their motives, that we need to initiate.

All we can do is facilitate. It’s you who do all the work.  It’s up to you, not GRASP, to stop this.

Best,

The folks at GRASP