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.

If you’re in the mood for some deep reading, I have just the thing. As director of communications for Erik’s Ranch & Retreats, I follow news about autism fairly closely. Several weeks ago, in this blog, we focused on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM-V, with the most recent changes, one regarding removing a diagnosis of Asperger syndrome. This change generated a lot of public concern. Then, just the other day, I found this article in the New York Times. It cited Dr. Thomas R. Insel, director of the National Institute of Mental Health (NIMH). He said the DSM-V suffers from a scientific lack of validity.

He wasn’t advocating ignoring the DSM-V altogether, because it is what we have. However, he indicated that science needs to go beyond diagnosing symptoms and focus on biology, genetics and neurosciences to get to the cause. As a result, Dr. Insel announced on April 29 that the NIMH has launched the Research Domain Criteria (RDoC) project “to transform diagnosis by incorporating genetics, imaging, cognitive science and other levels of information to lay the foundation for a new classification system,” and subsequently, more effective treatment. The RDoC is not a quick fix. It will take time to change the way research and diagnosis are conducted. But, it was heartening to learn that emerging data will be used instead of relying on static categories. It will also be interesting to watch and see the outcome of this endeavor.

Shortly after reading Dr. Insell’s announcement, I ran across this article in the New Yorker outlining how the RDoC will change the way diagnosis and subsequent treatment will be reoriented. I gleaned that the NIMH has implemented the RDoC project to continue to move research forward as well as the keep in mind the treatment of unique individuals, and I was encouraged. Which brings me to this story about Kevin, whose doctor already treats people, not just symptoms.

My whole point here is to reiterate that individuals with autism are unique and should not be defined by a diagnosis. When you look closely, you will find that extraordinary potential is not being tapped, and that’s a shame. Looking beyond a category and seeing a person will help foment change in perspective and treatment. That’s why the at Erik’s Ranch & Retreats has been not only to serve those on the spectrum, but to advocate on their behalf.

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