Now that the DSM5 re-definition of Autism Spectrum Disorders (excluding Asperger disorder and PDD-NOS) is a done deal, the question is what will this mean for those previously diagnosed with one of these conditions under DSMIV criteria and for individuals in the future who would have satisfied DSMIV criteria but who will not meet the DSM5 criteria?. Dr. Catherine Lord who was one of the main forces behind these changes has attempted to reassure the field that these changes will not disenfranchise most people with Asperger disorder or PDD-NOS. As in most things in life, the devil is in the details. While Dr. Lord’s data suggest there will be few people with Asperger disorder excluded using the new criteria, several other studies by highly credible researchers indicate a substantial number of children with Asperger disorder and PDD-NOS will, in fact, no longer meet the DSM5 autism spectrum disorder criteria. Insurance companies and Medicaid looking to save money would now be able to deny reimbursement for services to such people since they would no longer be considered ot have an ASD.
Moreover, public schools may argue they do not need to provide special education services to such children. My question is, how long will the American Psychiatric Association take to decide they made a mistake with the new criteria? Are they going to wait five years during which time many thousands of children will be denied services? Anyone who has worked with individuals with Asperger disorder can tell you most children with this condition require additional supports and treatment and to deny it is ethically troubling.
Another less obvious implication is that studies of treatment outcomes will be limited to more severely affected individuals, since it appears higher functioning persons with better prognoses will no longer be identified as having an ASD. The net result is that treatments such as Early Intensive Behavioral Intervention may suddenly appear less effective since the results will be based on a more severely affected population. That could have the pernicious effect of making it easier for third party payers to deny coverage of the cost of EIBI for individuals with autism. I doubt that is what Dr. Lord and her DSM5 colleagues intended but it is very likely to be the effect nonetheless.
Lord, CE and Mahjouri, S. (2012) What the DSM-5 Portends for Research, Diagnosis, and Treatment of Autism Spectrum Disorders. Current Psychiatry Rep. 15: 739-47.
McPartland, JC, Reichow, B and Volkmar, FR (2012) Sensitivity and Specificity of Proposed DSM-5 Diagnostic Criteria for Autism Spectrum Disorder. Journal of the American Academy of Child & Adolescent Psychiatry. 51: 368-83.
Matson, JL et.al. (2012) DSM-IV vs DSM-5 diagnostic criteria for toddlers with autism. Developmental Neurorehabilitation. 15: 185-90
My wife Anneke Thompson and daughter Andrea Thompson are both special education teachers with years of experience working with kids with autism, and I have worked in a consulting capacity with public schools for many years. In reality is many public school programs have insufficient trained personnel and resources to adequately meet the needs of students with autism spectrum disorders. In working with schools, try to find out what kind of specific training your child’s teacher has in autism. When training opportunities arise in your area, talk with him/her about the upcoming event and encourage them to attend, especially if it s practical workshop on behavioral techniques for the classroom. If possible, attend the workshop with your child’s teacher so you have an opportunity to partner with the teacher rather than be seen as a parent who is just making unreasonable demands. While you can’t legally pay the registration, ask the teacher if it would be OK to mention it to her/his principal, to put in a plug for it. Always better to find a way to work together than find yourself in conflict. It’s always easier to settle differences with someone you get to know personally than simply to see them as an obstacle. Think of it as your own personal “beer summit.”
If the eighteenth-century was the Age of Reason that followed the mysticism and superstition of the Middle Ages, 21st century America, at least for a slice of the US, has lapsed into a New Dark Ages that rejects objective scientific evidence and rational thought. They haven’t resumed witch trials and burning at the stake quite yet, but they have, indeed, purged their ranks of reasonable women and men not willing to participate in their madness. I have written elsewhere pointing out that there is no actual fiscal crisis. Nothing terrible is about to happen with the US economy unless the House Republicans make it happen. The only crisis is one created by the House Republicans refusing to increase the national debut limit, though Republicans in the House voted to increase the debt ceiling 19 times under George W. Bush to the tune of $4 trillion. A substantial number of Tea Party Republicans are willing to allow the country to fall into another recession, even a more serious and prolonged depression, in order to avoid more equitable national tax policy. They appear to be on a religious crusade, not taking part in pragmatic governance. The disastrous consequences of slashing Medicare, Medicaid and Social Security funding and public school funding for people with disabilities, including children, adolescents and adults with autism spectrum disorders would be unconscionable and indefensible. How many lives must be damaged to prove their point?
What I’m Up To.
I’ve spent the past few days participating in the semi-annual meeting of the Association for Behavior Analysis International Executive Council in Minneapolis, as a Member at Large. Much of on day’s meeting was devoted to planning upcoming conferences. ABAI is the largest organization of behavior analysts in the world and includes around 8000 members from all US states and 1200 in other countries. A substantial aspect of ABAI’s activities include promoting research, teaching and practices to improve the lives of individuals with autism spectrum disorders. Two upcoming ABAI conferences are especially relevant.
The 7th Annual ABAI Autism Conference Novel Autism Solutions for Practitioners, Parents, and Researchers will be convened, Friday, January 25–Sunday, January 27, 2013 Portland Marriott Downtown Waterfront Hotel, Portland, OR. http://www.abainternational.org/Events/autconf2013/index.asp The first day includes two workshops intended for practitioners focusing on strategies for promoting parent involvement in their child’s services. Day 2 will be devoted to science-to-practice mainly for and practitioners, college faculty and researchers. The third day is intended for parents addressing common issues of concern, such as sleep and feeding challenges and including school to adult transition.
The other upcoming meeting is the ABAI 39th Annual Conference to be held in Minneapolis, May 24-28th at the Minneapolis Convention Center in downtown Minneapolis. A large portion of the program is devoted to autism presentations, workshops and related events. If you have questions about registration for either conference check with the ABAI office at firstname.lastname@example.org I’d be glad to hear from you if you have questions about the content and speakers at the Autism Conference in Portland, which I’m coordinating.
Quotes of the Week by Alfred Bernard Nobel (21 Oct 1833 - 10 Dec 1896), Swedish chemist and philanthropist whose fortune has been used to fund the Nobel Prizes.
“I am not aware that I have deserved any notoriey, and I have no taste for its buzz.”
In Robert Shaplen, 'Annals Of Science: Adventures of a Pacifist', The New Yorker (22 Mar 1958),
“The capital (referring to his profits from sale of dynamite and other munitions) ... shall form a fund, the interest of which shall be distributed annually as prizes to those persons who shall have rendered humanity the best services during the past year. ... One-fifth to the person having made the most important discovery or invention in the science of physics, one-fifth to the person who has made the most eminent discovery or improvement in chemistry, one-fifth to the one having made the most important discovery with regard to physiology or medicine, one-fifth to the person who has produced the most distinguished idealistic work of literature, and one-fifth to the person who has worked the most or best for advancing the fraternization of all nations and for abolishing or diminishing the standing armies as well as for the forming or propagation of committees of peace. [From will (27 Nov 1895), in which he established the Nobel Prizes, as translated in U.S. Dept. of Commerce, Consular Reports, Issues 156-159 (1897), 331.]