How do I get a medical diagnosis of autism?

Specific tests are used to determine if an individual falls on the autism spectrum. These tests are administered by qualified mental health professionals and require multiple visits. A caregiver questionnaire or interview is also administered. Your primary care physician or pediatrician may say they think your child is on the autism spectrum, but you will need to get a complete medical diagnosis from qualified professional in order to obtain services from your insurance- whether its private or public in the state of Indiana. Don’t delay! In many areas it could take 6 -12 months or even longer to get that first appointment! The Indiana Institute of Disability and Community has a list of doctors in your community that can diagnosis your loved one here https://www.iidc.indiana.edu/pages/how-and-where-to-obtain-a-diagnosis-assessment-in-indiana

Why does it take so long? What does a through autism assessment look like? Our community partners at Fort Wayne Neuropsychology helped us out with a detailed description about what to look for when obtaining an autism diagnosis.

Important components of an autism evaluation:

Comprehensive – there are many conditions which have symptoms that mimic what is seen in an autism spectrum disorder. There are also numerous co-occurring conditions that need to be considered. Doing an evaluation that consists of only a test for autism (i.e., ADOS-2) and a rating scale does not suffice to adequately evaluate for the presence of autism versus other diagnoses and/or other co-occurring conditions. Additionally, it does not give information about other factors (e.g., intellectual functioning, language skills, emotional distress) that should be considered when choosing treatment options and developing a treatment plan.

Trained professionals – There are specific professionals who are recognized as competent, qualified and able to make a diagnosis of autism. This includes a physician/pediatrician/psychiatrist and Health Service Providers in Psychology (HSPP). Even within these professional groups, it is understood that only those with special training in neurodevelopmental disorders have competency to provide this diagnosis (see information from the IU School of Medicine website). Currently, to obtain ABA services through Medicaid, you must have a diagnosis made by a Qualified Medical

Professional - This does not include educational evaluations done by the school OR diagnoses made by a BCBA (as they are not permitted to make this medical diagnosis).

Tracking over time - Ideally, you would want to work with someone who will be able to establish a long-term relationship with your child and family. This allows you to have support and guidance through all the developmental phases of this diagnosis and into adulthood. It is not a one and done process. There are multiple things that need to be evaluated over time as an individual is ready and depending on their developmental level.

Time - Faster does not always mean better. It takes time to make a diagnosis. We know there is a need for more providers, but to accomplish what is outlined above, it cannot be done in 60-90 minutes. At minimum, it involves taking a detailed history, conducting testing and observations, and providing follow-up with patient specific recommendations and resources. This often takes anywhere from 3-8 hours to accomplish. Taking an adequate amount of time also ensures that you are seeing the patient and assessing their behaviors, symptoms, etc. over multiple moments in time, which gives a clearer picture of the individual and allows them time to acclimate to the testing environment. It is a process and this leads to a clear and accurate diagnosis. For this reason, please understand that time is taken with each individual patient to ensure that a proper diagnosis can be made.

For more information, please reference the links below:

American Academy of Pediatrics 2020 Publication

Indiana Resource Center for Autism - Diagnosis

FAQ about Medicaid Coverage for Autism Treatment

HANDS in Diagnosis - Screening and Diagnosis

If you have more questions about diagnosis or need additional options in your community, contact us at info@myautismally.org

How is an educational evaluation different from a medical diagnosis? Do I need both?

Many people are naturally confused when it comes to understanding the difference between having a medical diagnosis of Autism and getting services at school for a student with Autism.   It is important to know that a medical diagnosis of a disorder or syndrome does not automatically get a student services at their school.   This is not just true for Autism but for all disability labels specified in Federal Special Education law.

Receiving a medical diagnosis of Autism Spectrum Disorder for your child in an important step in identifying services that are deemed as a “medical necessity” and that can potentially be covered by certain insurance providers.  This step is also required when applying for the Family Support Services Waiver and Social Security Disability.

The purpose of an educational evaluation is to assess areas of educational need. The school must look at the student’s academic achievement and functional performance to determine whether the student’s disability has an impact on the student’s educational performance.

However for a student to get services at school, an evaluation has to be completed by a multi-disciplinary team by the relevant school/district staff.  There are 13 specific Federal definitions called “exceptionalities” that are listed in the Federal law called the Individuals with Disabilities Act (IDEA).  The team must use these exceptionalities in order to determine if a student might qualify for Special Education services.  

The word "might" is used here because it is possible that a student could meet the Federal definition of a student with a disability and not get services.  This is possible because the State Law regarding Special Education called Article 7, requires that the student meet the qualifications of an exceptionality, but also that this disability academically or functionally affects their education and/or the education of other students.  This is how our “higher functioning” kids on the autism spectrum don’t qualify for services. They academically perform well, it’s their social skills or sensory difficulties that are at issue. This is where families need to access services using their medical diagnosis and get help outside of the school setting.

This is a confusing and complex topic for many parents and caregivers.  If you are still unsure about the differences between a medical diagnosis and an educational evaluation, please contact My Autism Ally at info@myautismally.org or 260-207-4686.