Contributed by:
Stephanie Luallin, PhD, Psychology Post-Doctoral Fellow in Autism,
Department of Psychiatry, IU School of Medicine
Rebecca McNally Keehn, PhD, HSPP, Assistant Professor of Pediatrics,
Department of Pediatrics, IU School of Medicine
Noha Minshawi, PhD, HSPP, Associate Professor of Clinical Psychiatry,
Department of Psychiatry, IU School of Medicine
When parents/caregivers worry that their child has an Autism Spectrum Disorder (ASD), they often begin the work of having their child tested. Parents/caregivers looking for ASD evaluations for their children must know what a good evaluation looks like. Here are some tips on what you should look for in ASD testing.
A good ASD evaluation should include the following:
- An interview with the parent/caregiver. They will ask questions about your child as a baby and toddler. They will ask about their social and communication skills and any unusual behaviors the child may do. Some types of questions:
- When did your child sit and walk?
- When did your child start talking?
- How does your child do with daily tasks like eating, dressing, going to the bathroom?
- Does your child make eye contact?
- Does your child look when you call their name?
- How does your child play with toys?
- How does your child play with other children?
- Does your child repeat things you just said?
- Does your child really like unusual things, like lights, toilets, batteries?
- Does your child know a lot of facts about one subject?
- Does your child move their body in unusual ways? Do they flap their hands, spin in circles, rock back and forth, look at things close to their face?
- Observing the child. The doctor will watch your child play. They will also talk with your child.
- These tests will see how your child communicates, solves problems, plays with toys, and interacts with the examiner.
- Examples of some of the tests that are appropriate for figuring out if a child has ASD:
- Autism Diagnostic Observation Schedule (ADOS)
- Screening Tool for Autism in Toddlers (STAT)
- Tele-ASD-PEDS (telehealth assessment for toddlers)
- Asking how your child is doing in other areas, like:
- Self-help skills (toileting, eating, bathing)
- Medical concerns
- Language skills
- Problem solving skills
- Academic strengths and weaknesses
- Other problems that may look like ASD:
- Anxiety, worry, sadness, depression
- Trauma, abuse, or neglect
- Difficulty paying attention or being too active
An ASD assessment should NOT involve:
- Only talking with the parent/caregiver
- Only asking parents to fill out forms.
- Only be done at school. Schools can decide if a child meets the educational eligibility criteria for Autism Spectrum Disorder. This is needed for the child to receive services at school. Your child will need testing by a medical doctor if you want your insurance company to pay for services.
Who is qualified to make a medical ASD diagnosis?
You will need a doctor to test your child for ASD. This could be your child’s pediatrician if they have special training in ASD. You may also need to take your child to a special doctor, like a developmental-behavioral pediatrician, psychologist, neurologist, or psychiatrist.
Can my child do this testing with telehealth?
Telehealth tests for ASD are still being studied. Some telehealth tests may work as well as in-person tests (such as the Tele-ASD-PEDS). Your insurance company may want more information or an in-person test. Talk about this with your provider and insurance company before you start telehealth testing.
What should I do if my insurance doesn’t accept my child’s diagnosis? Insurance companies often put limits on what is needed for a “valid” ASD evaluation. These limits can be:
- Asking that a specific test is conducted
- Not accepting a diagnosis that has been made with telehealth, even if a good assessment was done.
- Saying your testing needs to be done by a certain type of doctor
- Wanting other evaluations (e.g., cognitive test, neurological evaluation, medication evaluation, etc.) along with the ASD-specific tests
- Having your child re-tested every 2-3 years
These limits may be unfair or even be against the law. Parents/caregivers must know that they have the right to ask for these decisions be changed. Important steps to take are:
- Call the person who did the testing for help.
- Learn about the steps for appealing an insurance decision at this website: https://casproviders.org/appealsguide/
- Call your local Family-to-Family network for help. Some groups in Indiana are:
Luallin, S., McNally Keehn, R., Minshawi, N. (2022). Autism spectrum disorder testing: what parents need to know. Retrieved from https://www.iidc.indiana.edu/irca/articles/asd-testing-what-parents-need-to-know.html
