Monday, January 23, 2012

We Found the Cure to Autism! All We Needed to Do was Change the Definition?

As many of you have heard, the proposed changes to the definition of ASD in the Diagnostic Statistical Manual (DSM) have recently been shared.  Here's a link to the New York Times article in case you haven't read it: . Many individuals (parents and professionals alike) have expressed concerns about the new definition because children who currently have a diagnosis of Asperger Syndrome or PDD-NOS may not be diagnosed with ASD with the proposed changes to the definition. This could mean that these children, teens, and adults would no longer have access to supports and services that they currently receive (ex. special education services, medical services, social services, employment services, etc.).  I would like to take a few minutes to share my concerns with what I have read about the new definition to facilitate some discussion among those who advocate for individuals with ASD.  In no particular order, here are my concerns:
  1. Every year we learn more and more about ASD.  Since the revisions to the DSM in 2004, we have learned so much more about the differences among the three disorders (Autism, Asperger Syndrome, PDD-NOS), we have learned much more about the unique characteristics of individuals with ASD, and we have learned much more about necessary treatment and interventions to improve outcomes for these individuals.  I have been eagerly awaiting for the new definition of ASD thinking we would actually see more differentiation among the three diagnoses and more descriptive characteristics that were not previously included in the definitions (i.e. sensory issues, emotional regulation, anxiety/fear).  Instead what we are seeing is no differentiation (just one diagnosis: ASD), no expansion on descriptive characteristics that were not included before, and a study documenting that at least half of the people diagnosed with Asperger Syndrome and PDD-NOS would not even meet the diagnostic criteria for ASD with the proposed changes to the definition.  I have book shelves full of resources that indicate differential diagnostic information regarding the three disorders and intervention approaches that can be utilized to enhance the life of people with ASD.  We know these individuals, whether they are high functioning or not, have a need for intensive interventions to be able to deal with the challenges and the social demands our world presents. Removing labels and denying services and supports seems like we would be taking many steps backward.
  2. When I was a classroom teacher, I remember the frustration of dealing with the fact that many children would not be eligible for services under intellectual disabilities because their IQ's were not low enough.  So, kids who were struggling academically would not get needed services and supports because their IQs were in the 70's not the 60's.  These kids are often referred to as "slow learners" and usually do not receive the interventions and supports they need to reach their potential.  I am worried that this same thing will happen with kids currently identified with Asperger Syndrome or PDD-NOS.  Because they are not "autistic enough" they will not receive a diagnosis and the support they need.  That is really unfortunate.  These individuals have so many gifts to bring to this world, and we should be providing what we know they need to allow them to become meaningful contributors to our society.
  3. What is the motivation of these proposed changes? To reduce the numbers of kids identified with ASD so we can "cure the autism epidemic?" To save money on services and supports? Well, removing labels does not eliminate needs. 

1 comment:

  1. I am speechless over this. This will only cut many needed services and supports that children with this disability need. How in the world can this happen when there is so much evidence based research that supports the success of students with ASD, PDD-NOS, and related spectrum disorder when interventions are implemented. This will only cut out programs and will not eliminate the disability. The government has been complaining that too many children are being diagnosed with Autism. Too many are not being diagnosed we are just recognizing and better able to diagnose Autism than before. There is no way these students will be able to grow up and be self sufficient and contribute to society if we do not support them as growing individuals.