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Medical or Educational: The Tangled Web of Diagnosing Autism
By Kristi | Published | No Comments
In 1998 my son received a medical diagnosis of autism. Back then it was the only path to receive supports and services of any kind. However, our insurance company denied ABA service, stating autism wasn’t a recognized disorder and then once I proved otherwise, said our coverage did not include neurological disorders. It was a tangled web to say the least, so I decided to start some spinning of my own.
Enter Early Childhood, birth to 3 recommended by the diagnosing psychiatrist. The therapist came to my home to evaluate Jonathan. As I watched her introducing tasks and Jonathan’s frustration mounting as he struggled with each one, eventually leading to a major meltdown, it became very clear—we were spinning two different webs. Moving forward, my handiwork needed to capture both to ensure the best outcomes for my son.
Next, I began investigating state programs and insurance for children with disabilities. Since my private insurance was basically useless, I uncovered other alternatives. In fact when we moved to Wisconsin, I applied to a program that was geared specifically to services for autism. With his medical diagnosis, Jonathan was accepted and three months later we began our in-home ABA program with that funding.
So what are the advantages and disadvantages of medical and educational diagnosis of autism? Let’s clear away some of the cobwebs. A medical diagnosis most often comes from a developmental pediatrician, child or adolescent psychiatrist or psychologist or pediatric neurologist. A series of evaluations are conducted to observe behaviors, communications skills and how the child interacts with their environment. Additionally in -depth interviews with parents and caregivers as well as observations of the child in various settings aid in providing valuable information towards an accurate conclusion. The medical diagnosis is essential in order to obtain comprehensive access to supports like ABA therapy, speech, occupational and physical therapy as well as disability benefits like social security income (SSI and social security disability income SSDI). An educational diagnosis is typically conducted through a team comprised of a school psychologist, special education educators, as well as speech and occupational therapists who evaluate the child. Assessments typically focus on academic performance, social skills and behaviors in the classroom setting. To be clear, an educational diagnosis does not necessarily confirm the presence of ASD, but assesses eligibility for special education support under the Individuals with Disabilities Act known as IDEA. Once that determination is made, an Individualized Education Plan or IEP is then tailored to support the child’s specific learning requirements. The advantage of the educational diagnosis is geared to providing those supports in the school environment.
While the pros to medical and educational are somewhat obvious, what are the cons? A medical diagnosis does not guarantee a child special education support and most often, an educational evaluation is required. The diagnostic process can be a source of anxiety, confusion and yes, grief for families. Having been there myself 28 years ago, I remember all too well the conflicting feelings, emotions wrapped up in a list of what behaviors could be a sign of autism. Going back and forth with the yes, he does do that and no, he doesn’t, could he be, or maybe he isn’t and clinging to any hope that what I was seeing wasn’t autism. One doctor telling me he was more ADHD than autistic, yet another telling me to institutionalize him. It was heartbreaking and gut-wrenching.
The biggest con of an educational-only diagnosis is the fact that this does not qualify your child to receive medical and insurance covered therapies—ABA, speech OT/PT and autism waiver services provided by state and local agencies that serve individuals with disabilities. Add SSI and SSDI to that list as well. Supports are limited to the school environment, so access to community based supports, social skills and vocational skills are often curtailed. It’s important to remember once your child exits the educational setting those resources abruptly come to an end and they are now adults. Knowing your options once it does is critical moving forward.
My son is now 30 years old. While his diagnosis was medical, it did lead to educational supports as well. Both have been crucial to obtaining the resources and programs he has needed educationally, medically, vocationally and as an adult. The blend has met his needs in the long term as well as in moments of crisis. Each of us needs to determine what is best and necessary for lifetime goals.
As the parent or caregiver of a loved one on the spectrum there are so many aspects and intricacies along the way. Much like a spider’s web, it’s delicate, yet unyielding even in the face of harsh outcomes and realities. When knocked down, we rebuild or move to a safer location. It is a lattice work of love, dedication and perseverance. All of us construct our own web to support what is optimal and essential for those on the spectrum to thrive and flourish.
Equally as impressive as a spider’s, each and every web we weave is truly a beauty to behold.
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