How to Test Your Child for Autism — What I Wish I’d Known
I’m going to cut to the chase in the first sentence: if you want to qualify for Medicaid or other benefits, only the ADOS test will get you that — at least my state, but I suspect it’s similar elsewhere. So if that is your goal, insist on it, and early. I did not know that my own daughter, Emmy,* could qualify for disability waiver Medicaid until two years after her initial diagnosis (via a different test). But I get ahead of myself. First let’s talk about the types of tests you might encounter:
At this time, there is no medical indicator of Autism: genetic testing, blood tests, and MRI’s cannot tell you, definitively, that an individual has autism. I imagine, in time, as we understand both the brain and genes more, that might change. But for now, there are only screenings and evaluations. I am not an expert on them by any means, but there are many types of screenings and evaluations that may be recommended, and it helps to know what is being offered to you.
Early Screenings
First you will probably be offered some type of autism screening. Some pediatricians may do screenings at different aged well-child check-ups automatically, or at the request of a parent. Others may refer you to a developmental pediatrician or neurologist. A more complete list of these screenings (and tests) is available at the CDC, but a few acronyms to listen for are the ASQ (Ages and Stages Questionnaire) and the PEDS (Parents Evaluation of Developmental Status). These are general screenings and will not end with an official diagnosis, but rather can point your doctor towards suggesting a more in-depth evaluation. If they perform one of these at a regular well-child visit, then it shouldn’t cost you anything or take up too much time. If you need to schedule another visit, hopefully it won’t cost you more than another co-pay and take a few more weeks.
Diagnostic Evaluations
Full evaluations may take a little longer to schedule, which is why I urge parents to try to get a referral as soon as possible. Many developmental pediatricians have new-patient wait lists of 12, 18 and sometimes even 24 months! That’s right, it could be two years before you even get an initial appointment, and so you want to make the appointment count!
Emmy has been tested for autism three times. Knowing what I know now, I would have skipped the first test, and flipped the order of the second two. Emmy was first diagnosed using the DSM-5 criteria.The DSM-5, or American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition, covers standardized diagnostic material for a wide range of psychiatric conditions. It is a well-respected benchmark, but I found out after the fact that, at least in our state, it is not an accepted diagnostic tool for qualifying for disability waiver medicaid.
Second, Emmy had a Vineland Test. This also tests for autism, but is more like a growth chart. You know the height and weight growth chart they show you at your child’s annual check-up? The Vineland Test measures children’s social-emotional growth similarly, showing where, as a percentage, they stack up against peers their age. It can be very helpful to track not only overall social-emotional performance, but also growth. For example, say your child is only in the 20th percentile for receptive language, but at their next Vineland assessment they are following a similar growth curve for that skill, it helps to understand how they are learning and growing, and identify areas that need support.
Finally, at long last, we were suggested for an ADOS test. I almost refused it, having already received two positive diagnoses. But when the doctor said it would qualify her for disability benefits, I wondered why we hadn’t been offered this test, first. The ADOS is, according to the CDC “A semi-structured, standardized assessment of social interaction, communication, play, and imaginative use of materials for individuals suspected of having ASD. The observational schedule consists of four 30-minute modules, each designed to be administered to different individuals according to their level of expressive language,” and I don’t have much to add. I took Emmy to her appointment where a paraprofessional set up several play situations and interacted with her using a script while I answered a few multiple choice questionnaires about her abilities, sleep habits, and sensory needs. We got the results six weeks later, and I used the doctor report to apply for medicaid.
Getting Tested or Avoiding Testing
There are valid reasons to not get tested: testing can be expensive and time consuming, and that alone, unfortunately, is a barrier in this country. A positive diagnosis also means there is a label in your medical history. That may not seem like a lot for a four year old, but it can affect things like qualifying for life insurance later in life, or how much your health insurance costs if the autistic individual does not, for whatever reason, qualify for medicaid. Also, sharing a diagnosis with educators can, sadly, lead some of them (definitely not the majority, but some) to immediately think of your child as a “problem” and treat them as such.
Overall I think the benefits of testing outweigh the downsides, but it’s important to know what you are seeking before you agree to a test. Are you seeking medicaid benefits for your child? Then make sure that the first test is the right test to qualify you in your state to save yourself a lot of time and hassle. Are you seeking access to an IEP, or individualized education plan? IEPs tend to accept a broader range of diagnostic criteria, but again, make sure you ask BEFORE scheduling the test. Are you just looking for an explanation as to why your child is the way they are, or does certain things that they do? Then really any evaluation, perhaps even the self-led online evaluations will do. There is a growing movement amongst the autistic community of validating self-diagnosis, as many people lack the resources to access more clinical evaluations. A self-diagnosis (or parental diagnosis) will not qualify you for anything, but it may provide a level of understanding and acceptance that wasn’t there before.
After the Test
Whatever you decide to do, keep in mind that your child is the same child they have always been, regardless of diagnosis. Your doctor will have recommendations on what to do post-diagnosis, and they are usually a good resource. But remember, you are the parent and you know your child best. If something doesn’t seem right to you, seek a second opinion. Do your own research, try your own therapy. I’ve written about what you can do immediately with both younger children and older children while awaiting diagnosis. You can continue doing those things with them while you await your first “official” therapy appointment, whatever that may be. For those who want to dive deep into the therapy world, I’ll write next about the four things that made the most difference in my own daughter’s growth. Good luck to your and your family!
*names have been
Annie Newman is a substitute teacher, mom, and aspiring children’s book author raising two children: one neurotypical and one autistic. You can also follow her day-to-day learning on Instagram and on Tiktok.