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Medical Diagnosis Vs. Educational Eligibility for Special Services: Important Distinctions for Those with ASD
Parents are often surprised to learn that a medical diagnosis of Autism Spectrum Disorder (ASD) does not automatically entitle a student to special education services under the Individuals with Disabilities Education Act (IDEA). Eligibility for special education services is based, rather, on an educational determination of a disability, which includes meeting not just the criteria for a specific disability (such as autism), but also finding that a student is in need of special services. Understanding the differences between a medical diagnosis and an educational determination of eligibility for special education services can help parents become better advocates for their children.
A medical diagnosis of ASD is made by a doctor or other specially trained clinician by using symptom criteria set in the Diagnostic and Statistical Manual of Mental Disorders (DSM), a book published by the American Psychological Association (APA). Many individuals with a medical diagnosis of ASD were diagnosed using the 4th edition of the DSM. DSM-IV, as the 4th edition is called, established specific criteria for diagnosing individuals with three different autism spectrum disorders: Autistic disorder, Aspergers disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). In May 2013, the APA published DSM-5, which eliminated these three subcategories and grouped all three conditions under the name of Autism Spectrum Disorder. Diagnostic criteria were also modified, and, going forward, doctors and clinicians will use DSM-5 criteria when determining a diagnosis. Under both DSM-IV and DSM-5, an individual must meet a specific number of symptoms, including repetitive behaviors and difficulties with social interactions, to be diagnosed. DSM-IV requires qualitative impairments, while DSM-5 requires that symptoms limit and impair everyday functioning, but this is to be interpreted broadly.
By contrast, educational eligibility is decided by a team comprised of various school professionals and a student's parents. The team must find that the student qualifies for services under IDEA. To be eligible, IDEA requires that a student have at least one of 14 specified disabilities and be in need of special services. Autism is one of the 14 categories, but the definition of autism varies from state to state. Some states follow the medical definition found in the DSM, but others have their own definitions. In fact, some states exclude students with diagnoses of Aspergers Disorder or PDD-NOS from the autism category (although some of these students may qualify under one of the 13 other category options.) (In Pennsylvania, all types of autism diagnoses, such as Asperger syndrome and PDD-NOS, are included in the state's definition.)
In addition to the possible disparity in the definition of autism, the primary difference between a medical diagnosis and an educational eligibility determination is the impact the condition has on student learning. The educational team (along with the parents) must conclude that autism symptoms interfere with learning and that the student needs special services in order to make academic progress. Because of this additional requirement, it is possible (and not infrequent) that a student has a medical diagnosis of autism (or ASD) but is ineligible for special education. Students who are found ineligible for special education may qualify for other services, such as accommodations, under the Rehabilitation Act of 1973.
Impact on Services
Parents need to understand how each service system – medical and educational – will address treatment of their child on the autism spectrum. The services and treatment options within each system are varied and target different skills. For example, the education system focuses on academic and functional skills, while it can be argued that the medical system attempts to address problems from a more global perspective.
Treatment within the medical system usually consists of therapeutic interventions, such as behavior therapy, speech therapy, occupational therapy, individual counseling, or medication intervention to treat symptoms associated with ASD. In the medical model, a diagnosis alone is usually sufficient to warrant treatment. (The exception is Behavioral Health Rehabilitation Services, BHRS, which are provided through the behavioral health system in Pennsylvania and other states and which have their own criteria for "medical necessity.")
As discussed above, educational services, by contrast, require more than just a diagnosis; they require a finding that a student is in need of special services. Once it is determined that services are needed, the particular services received will be determined by an Individualized Education Program (IEP) team. Services may include some of the same interventions as used in the medical system (for example behavior or speech therapy), as well as other supports and specialized educational placements as determined by the IEP team.
In summary, parents have a variety of options regarding treatment and have to decide whether to pursue treatment through the medical system, the education system, or both. If your concerns about your child are mostly behavioral and are mainly occurring in the home, then you might want to pursue psychological treatment first. If your child is having academic or behavioral difficulties at school, then you should pursue an evaluation through the school district to see what resources are available to your child. However, educational and medical services can be pursued simultaneously, which is often the best strategy for children on the autism spectrum.