If the Proposed DSM-5 changes have the effect predicted by the New York Times article, New autism definition may exclude many, study suggests, then these changes will cause a huge upheaval in the lives of many families who struggle with Autism every day. According to the New York Times Article:
Hundreds of thousands of people receive state-backed special services to help offset the disorders’ disabling effects, which include learning and social problems, and the diagnosis is in many ways central to their lives.
The diagnosis of autism is unfortunately the gateway to many state and medical services. In an ideal world it shouldn’t matter what the label is, if the child has a need for services they should be able to access those services. As we all know we don’t live in an ideal world. While the diagnosis of Autism is the gateway to state and medical services it does not work that way in Public Schools. You see there is a HUGE difference between a medical diagnosis of autism and an educational definition of autism. Before I expand on this point let’s look at the proposed changes.
The proposed changes can be found in a guest post on our site written by Lee Anne Owens entitled, Proposed DSM 5 Changes and Autism: What Parents & Advocates Need to Know. While Lee Anne does a wonderful job explaining the proposed changes she also says:
The situation for a student with a current (DSM IV criteria) based autism diagnosis may be vastly different. Children who do not exhibit significant difficulty with sensory or perseverative issues could be diagnosed with a Social Communication Disorder, and not an ASD. If a student is recategorized using the DSM 5 criteria for an ASD, then he or she could be denied access to services such as Occupational Therapy or Physical Therapy which they have received through their IEP in past years.
The above statement is true in concept, School Districts may try and use this information to reduce or deny services, but the Individuals with Disabilities Education Act (IDEA) does not let labels drive services. Needs drive goals and goals drive services in an Individualized Education Program (IEP). This means if your child qualifies for an IEP, no matter what disability category they qualify under, if they need a particular service to access the curriculum then they are entitled to that service. Furthermore, the School District cannot remove a service like Occupational Therapy or Physical Therapy unless there is no longer a need. This is true for any child who qualifies for an IEP.
Now getting back to my original point, there is a HUGE difference between a medical diagnosis of autism and an educational definition of autism. Even if a child loses their medical diagnosis of autism that does not mean they lose their IEP or even that they can’t still use the disability category of autism in their IEP. IDEA has a federal definition of autism and each State has an even more specific definition of Autism built into their education code. I have included the educational code definition of autism for both California and New York below:
California Educational Code Definition of Autism:(a) For purposes of this chapter, a “pupil with autism” is a pupil who exhibits autistic-like behaviors, including, but not limited to, any of the following behaviors, or any combination thereof: (1) An inability to use oral language for appropriate communication. (2) A history of extreme withdrawal or of relating to people inappropriately, and continued impairment in social interaction from infancy through early childhood. (3) An obsession to maintain sameness. (4) Extreme preoccupation with objects, inappropriate use of objects, or both. (5) Extreme resistance to controls. (6) A display of peculiar motoric mannerisms and motility patterns.
(7) Self-stimulating, ritualistic behavior.
New York Educational Code Definition:Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a student’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. The term does not apply if a student’s educational performance is adversely affected primarily because the student has an emotional disturbance as defined in paragraph (4) of this subdivision. A student who manifests the characteristics of autism after age 3 could be diagnosed as having autism if the criteria in this paragraph are otherwise satisfied.
As you can see it is much easier to meet the definition of a child with autism in the educational setting then in the medical setting. Especially in California where they have specifically included the language, autistic-like behaviors. But even in New York there is no language that requires the child to have a medical diagnosis of autism in order to be categorized under autism in an IEP. That is the key concept to remember that there is a big difference between autism the IEP category and autism the diagnosis. The first thing I recommend is to look up your State’s educational code and search for the definition of autism. Remember, knowledge is power, the more you know the better.
While, the proposed changes to DSM-V might have disastrous effects on State and medical services it will not necessarily have the same effect in the educational setting. Focus on the legal definition of autism in your State and build your argument around that definition. Even if the disability category labeled in your child’s IEP ends up changing that is okay as well. Consider that disability category as the entrance into the “House that IEP built.” Once you are in the house needs drive services not labels.