If you're a member of the autism community, you've probably already heard the news. The American Psychiatric Association has developed a new diagnostic manual - number five, to be precise. The DSM 5, like its predecessors, will redefine a whole range of brain-related differences and illnesses, reconfiguring the face of mental health medicine.
Some disorders will be redefined. Some will be added. Some will disappear.
Among the disappearing disorders is Asperger Syndrome, presently a discrete diagnosis under the umbrella of autism spectrum disorders. Instead of Asperger Syndrome, high functioning individuals with the core symptoms of autism (now defined essentially as repetitive behaviors and perseverative interests combined with sensory issues) will probably receive an "autism spectrum" diagnosis. It's also likely that they'll receive some sort of yet-to-defined extra term such as "without intellectual challenges."
I am presently researching and writing a series of articles on the changes in the diagnostic criteria, which are sure to have a profound impact on the world of autism. Existing information and research about prevalence, trends, treatments and causes are likely to be outdated. Existing services and programs are likely to change. Certainly, anyone with Asperger syndrome will wind up with a different diagnosis, either within or outside of the autism spectrum.
As I put together articles based on interviews with the APA and others, I'll let you know that they're available on this site. The first asks two key questions about changes to Asperger syndrome.
If you have concerns about the new DSM 5 and changes to the autism spectrum criteria, you still have two weeks to comment (until July 15). Changes to the DSM are anticipated to go into effect in May, 2013.
Lisa, Thanks for doing this.
Just out of interest, did you ask some similar questions about PDD-NOS? That is, does the APA expect a child who demonstrate less routinized behaviors to remain under the autism spectrum, but with an extra term such as, say, “with less adherence to routine”?
Malia – yes. I did ask about PDD-NOS and will be publishing responses shortly.
Basically, they feel that PDD-NOS had become a sort of diagnostic dumping spot for kids with a very wide range of issues, so they have narrowed the criteria for ASD and then created additional diagnoses that may more closely fit kids with other but related issues.
My son, whose disorder is largely related to social communications issues with a significant chunk of learning disabilities, but who has few perseverative or sensory issues, would likely lose the ASD dx and gain a new “social communication disorder” dx. I’d also expect that he’d wind up with some sort of learning disability dx.
It does make sense overall, but it will blow the whole “is autism on the rise” question right out of the water. Even now, it’s hard to get a handle on “what exactly do you mean when you say autism;” in a couple of years it will become impossible to compare rates over time.
Lisa
This looks like another attempt by the Medical Spectrum Community to manipulate Autism numbers in a way that will likely be of no positive service to individuals and families affected by Autism, make services harder and more costly to obtain and be a political and financial boost for the health insurance carriers.
The powers that be likely will not be satisfied until they can break Autism down into many unrecognizable new categories with new names unassociated with the term Autism. They will be able to say Autism is not on the rise and the statistics can read “the Autism rate is back to 1 in 10,000″. Sad.
The autism rate is now at an epidemic level in the U.S., affecting one percent of children, including almost 2 percent of boys. No official can tell us why. The Centers for Disease Control and Prevention is still trying to figure out how much of the increase is real and how is just “better diagnosing” by doctors. The current rate of one in every 110 children is based on studies of eight year olds back in 2006. The true rate is unknown. No one at the CDC has ever called autism a crisis; the strongest language they ever use is “serious health care concern.”
Meanwhile Dr. Thomas Insel, head of the Interagency Autism Coordinating Committee (IACC) created by Congress to deal with autism, has said that 80 percent of Americans with autism are under the age of 18 and he warned that we need “to prepare for a million people who may be in need of significant services.” Nothing is being done to prepare for the approaching tsunami of dependent adults that will descend on social services in the coming years. The IACC now calls autism “a national health emergency.”
A 2006 study from Harvard researcher Michael Ganz found that lifetime cost for ONE INDIVIDUAL WITH AUTISM is $3.2 million. Others put the cost at between $5 and $10 million PER PERSON.
Considering all these facts, it’s really hard to imagine why the American Psychiatric Assoc. thinks playing with the definition really matters.
Anne Dachel
Media editor: Age of Autism
annedachel.com
Anne and Paul – I really don’t think the APA is giving a whole lot of thought one way or another to the politics of autism, except insofar as they are asking people with Asperger syndrome how they feel about no longer having a discrete diagnosis.
Nothing in the DSM relates to prevalence, causes, or physical co-morbidities. In fact, they’re very careful indeed to stay away from those issues.
The reality, however, is that changes in the DSM will have a profound impact on our ability to track or study the disorder we now call “autism.” In some ways, it may make it easier, since it will narrow the definition of the term. In other ways, of course, it will almost certainly change the prevalence – very possible making it “go down” when there’s been no absolute change in the number of people who WOULD HAVE BEEN diagnosed with autism under the DSM IV.
Lisa
I think I am a living example of such a disorder (Asperger), ADHD, tourette syndrome, obsessive compulsive, creative and innovative (both scientific and artistic), poor social skills with insatiable need to learn. ASK anything.
Wesley, You are the first person I read that has more then Asperger’s. My adult son has also Aspie’s, OCD, ADDHD, Epilesey(nonconsulsant type) and delayed sleep phase. I’m glad I’m not alone.
I have a son with Aspergers Syndrome. He receives SSI for it. What will happen if they drop it. He is now a adult and very aware of his dx. How can you tell them that they no longer have it when they were told it is a lifelong syndrome. This is crazy. He has had enough struggles in his life to get to where he is today. I am sure I am not alone in my worries.
Looking for best information on ASD and females? Dr Tony Attwood has been a major contributor to the debate in Asperger’s Syndrome in women and girls. This Aspergers, an autism spectrum disorder, has been underestimated in females. In the past women and girls have been undiagnosed and mis-diagnosed in this field of autism.
Medical-rights.com