The waiting is the hardest part…
One of the things I think about when I look back at our family’s autism journey is all of the waiting.
The waiting to get a diagnosis was difficult. Multiple visits, multiple questionnaires, culminating in the last diagnostic visit when we got the confirmation of what we already suspected. Fast forward 19 years and I've waited in doctor’s offices, therapy clinics and school conference rooms more times than I care to count. It’s one of the reasons that I became a knitter, at least my hands had something to do during all this waiting. The knitting, as I eventually came to realize, is a sensory/anxiety/boredom coping strategy- but that’s a that’s a completely different blog post. Tom Petty is singing in the background as I’m writing today and he summarizes this well, “The Waiting is the Hardest Part.” You’re welcome for the earworm.
So, let’s get back to the original purpose of this blog post, shall we? Waiting. Do any of these scenarios sound familiar?
You need speech, OT, ABA, behavioral, recreational or music therapy- “We don’t have availability right now. We’ll put you on our wait list.” Ugh, waiting…
Your child needs supports at school- “We need to do an educational evaluation, and we have 50 instructional days to make that happen. We’ll let you know when we can do the evaluation.” Ugh, more waiting…
“I suspect that my child has autism”, you tell the pediatrician. After waiting a few weeks for the appointment, he replies, “Here’s a list of possible options for diagnosis. Be sure to call your insurance to see where you have coverage!” Ugh, more work on my end… and more waiting!
You finally find out where your insurance will cover a diagnosis and then hear something like this when you call the provider to schedule- “We’re booking appointments 9-12 months out.” WHAT? WHY? My kid is struggling today! How am I supposed to wait another year!
Perhaps then you start thinking about taking short cuts. “Maybe we don’t need the medical diagnosis, we’ll just take the supports the school offers.” Let me tell you right now, that’s a bad idea. Because school will address ONLY school related issues. Trust me, you’re going to need help for issues in the home and community settings. Also, you cannot access lifelong supports for your autistic child without getting a medical diagnosis. And you guessed it, here in Indiana, there’s a waitlist for those supports.
Maybe, you find someone sharing a resource via social media, “Look, here’s someone who says I can private pay, and I can get in right away!” Please be careful and understand the licensure that individual holds. If your child doesn’t have autism, can they tell you what the underlying problem is, or are they going to refer you somewhere else? Insert more waiting here… Or worse, they diagnose your child with autism, and they don’t have autism. Which will result in you spending time and money for treatment that may not be effective. What if your child has autism AND another co-occurring condition? A whole and complete diagnosis is going to get you the best outcomes for your child.
So, we’re back to What and Why. What should an autism diagnosis look like? Why does it take so long? To help answer those questions of why getting a good medical diagnosis for autism is so challenging and lengthy, we asked our partners at Fort Wayne Neuropsychology to help.
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
And as always, if you have questions or need additional help, we’re here for you! Email us at info@myautismally.org or call us at 260-207-4686.