In our last blog, we talked about the reason you might want to get an updated diagnosis. Your next questions might be, “Who will give us an updated diagnosis? How do we do this?”
Testing By Itself Doesn’t Work
You might come to us and tell us that your child has autism and is receiving autism services in the school. To get these services your child had to be evaluated in the school. You have a list of the assessments that were done, and you probably have a 30-page report on the outcome of those assessments. You probably have a very long ARD in place. All this testing was just done—why wouldn’t this testing work to be able to access other services through your funding source?
Why Testing By Itself Doesn’t Work
The difference is that the funding source sees the school report as an educational report, rather than a medical report. Even though you may have an individual with similar credentials providing the educational assessment—you might even have a psychologist involved who did an ADOS—a funding source such as an insurance company would not accept that evaluation because it was done to determine educational eligibility. They do not actually diagnose in a school setting; they just determine whether or not a child qualifies for educational services.
When we talk about an updated diagnosis, we are talking about a medical need. The funding sources associated with medical services need an evaluation that shows that there is a medically-necessary service related to the diagnosis.
Why Your Family Doctor May Not Be Qualified
You might think, then, that you can go back to your pediatrician or family doctor, the doctor your child may have been seeing her whole life, and get a note stating that she has autism and needs this service. However, it’s not that simple. Your pediatrician or family doctor has an MD, but lately, we’ve been finding that several funding sources want to see these diagnoses made by doctors with specific credentials. Yes, your provider needs to have an MD, a Ph.D., or a PsyD, but they also have to do specific kinds of testing. While your family practitioner or pediatrician can verify that your child has autism, they do not normally do the kinds of testing that these funding sources require to show that yes, there is a definitive diagnosis of autism.
Who You Can Go To
So who can you go to? Typically the doctors who do these tests are psychologists, developmental pediatricians, neuropsychologists. There are other doctors you can reach out to as well, as long as they do autism-specific testing to show that, based on the child’s performance on these tests, and the provider’s clinical judgment, that the child meets recurrent DSM criteria for an autism diagnosis.
Another thing to be aware of is because there are often very few of these providers in a given area, and the demand for them is so great, there can be very long waitlists for this testing. Remember, some funding sources are requiring these updated diagnoses every 2-3 years. As a parent navigating so many different things, it can be difficult to keep up with testing that has a 6-month waitlist! You have to think about scheduling these tests far in advance of when you’ll need them. Hopefully, your constellation of caregivers can help you to navigate this and meet those timelines.
If there are any specific resources you’re interested in, please let us know! We are more than happy to share our resources with you!