Earlier this year, revisions to the autism diagnosis in the Diagnostic and Statistical Manual, Fifth Edition (DSM-V) were announced. Parents of children diagnosed with autism were concerned that this change would affect services provided to their children. Even though the new criteria for diagnosis are touted as an improvement to diagnosis, which will provide better services, these parents’ fears seem to be justified.

After merely three months since the DSM-V came out, the Autism Action Network sent an action alert requesting information about how services are being eliminated for individuals with autism. It seems that there are institutions and organizations that have taken the DSM-V criteria and used it to say, “you no longer have autism; so you no longer receive services.”

I have to lament here that the funding battle to help our children just never seems to end. I believe unreasonable thinking has sentenced this population to warehousing or to depression, incarceration and even suicide. From the DSM-V standpoint, it seems we value money far more than the lives of these individuals—we are unwilling to incorporate changes that would make a space for different abilities.

So much of the battle has to do with misperceptions and misunderstandings and staying silent about them. There are ways to foment change and many are incremental. However, if we don’t raise our voices, little will change. Advocacy starts on an individual level and will not reach a global level until our voices are heard.

The Autism Action Network is one voice that is raised. Send your stories to this group and help turn the tide.

Advertisements

At the end of November, the American Psychiatric Association (APA) approved eliminating Asperger syndrome from the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-V). Instead, the disorder has been absorbed into the diagnosis of autism spectrum disorder.

David Kupfer, MD, chair of the task force revising DSM-V and psychiatry professor at the University of Pittsburgh, says the change aims to ensure that affected children and adults receive a more accurate diagnosis for the most appropriate treatment.

Because the DSM is the authority by which providers and insurers make treatment and service decisions, uppermost in the minds of members of the autism community is how this change will affect services. That question forms the basis for a letter from Geraldine Dawson, PhD, chief science officer, Autism Speaks to the APA. She urges open-minded, ongoing review of six pertinent points before committing to this decision.

Fred R. Volkmar, MD, director of the Child Study Center, Yale School of Medicine, resigned from the DSM-V task force earlier this year because he opposed the change. He says, “The new definition will end the skyrocketing autism rates … But at what cost? The major impact here is on the more cognitively able.”

On the other hand, others, including Sally Ozonoff, PhD, professor of psychiatry at University of California Davis, support the new diagnosis believing it will expand services and improve therapy. She wasn’t involved in redefining Asperger syndrome, but she wrote in an email to the New York Times, “… I can state that the intentions of that group, and of most professionals in the field, would not be to exclude anyone from services or to tighten criteria to reduce the number of diagnoses.”

This is a hot topic and will continue to be one until there are tangible results for comparison. As Dawson admonishes in her letter to the APA, “It is crucial that the impact of the proposed changes be closely monitored and assessed.” Only time will reveal whether the new definition is a benefit or a detriment.

Share your thoughts about absorbing Asperger syndrome into autism spectrum