The alarm being generated and flames that continue to be fanned over the change from DSM-IV to DSM-5 scheduled to happen in May of 2013 is troubling to me. As a licensed psychologist who has worked with children on the autism spectrum for 30 years and who is well-known and respected as a staunch advocate for children with disabilities of all kinds, I object to what appears to be the creation and nurturance of an untterly unnecessary state of fear among the parents of children with autism spectrum disorders by some popular but misinformed advocates. Similarly zealous people lobbied furiously for state laws that would “force” private insurance companies to cover the treatment of autism, which has resulted in little more than the elimination of Medicaid funding for those same children, to the delight of the state Medicaid agencies that seem to have been the only substantive beneficiary of these lobbying efforts and laws. That this terrible disservice to the parents of the children with autism was perpetrated by “advocates” who were ignorant of (or overtly hostile toward) Medicaid funding that had existed in all 50 states as a Civil Right prior to their exertions is a dreadful irony, in my professional opinion. Parents literally gave up their entitlement to treatment funding under the EPSDT mandate of Medicaid in exchange for the opportunity to beg private insurance companies for funding. Worst of all, these same “advocacy” organizations continue to believe that it is “philosophically inappropriate” to expect Medicaid to fund autism treatment. Even after they’ve won their battles in 29 states to get private insurance to cover autism treatment, they still don’t think it’s important to help autistic children from impoverished families get the treatment funding they’re entitled to under Medicaid. Unconscionable.
Undoubtedly, some clinicians have, and will always, use diagnostic tools for nefarious purposes (especially those who work for organizations that exist for the sole purpose of reducing or eliminating funding for treatment — Managed Care organizations, for example). On the other hand, responsible and ethical clinicians will continue to use tools for the benefit of their clients/patients. DSM-IV is being misused now, and DSM-5 will be misused in the future, without a doubt.
The good news is that DSM-5 is actually less likely to be abused than DSM-IV in many ways. I believe that DSM-5 is a tool that will not result in the wholesale devastation of the poplulation of children with autism spectrum disorders that is being projected by others with backgrounds in law, nursing and other fields while exceedingly well-qualified mental health treatment professionals in the field of autism treatment are trying to quell these misplaced fears. I am one of them.
I presented information in support of this position during the program regarding DSM-IV vs DSM-5 issues at AutismOne in Chicago in May in a panel discussion with several people who were expressing alarm over the impending DSM-5 implementation. We presented our opinions in a congenial panel that offered opposing views of the probable impact of DSM-5. AutismOne offered a free download for the presentation regarding DSM-IV vs DSM-5 (presented on Thursday, May 24th at 9:15 am) which documents the strong consistency between DSM-IV and DSM-5 (and the actual improvements that DSM-5 makes). It is available here.
In my professional opinion, it is not appropriate to present just the portion of a set of facts that causes people discomfort and fear; one should present the entire set of facts and let people judge for themselves whether or not a reason for fear exists after considering the opinions of other responsible, reliable and conscientious professionals, especially those with a proven track record of advocacy for children and more than 30 years of clinical experience using tools like DSM-IV to benefit children.