What are some reasons why an autism evaluation is delayed?
One question, infinite answers. Before we dive in, feel free to check out my previous posts on Signs of Autism in Toddlers Age 1 and Up, and Diagnosing Autism at One-Year-Old.
Infinite reasons, yes, but a very very short list would include: stigma; lack of access to medical care; wait lists; finances; language barriers; an initial diagnosis of another issue; the autistic individual “masking” their behavior to appear more neurotypical; or having your concerns dismissed by a medical provider (or other individuals).
So…lots of reasons, that can vary from person to person. Many times, an autism evaluation is delayed from a combination of these causes. This post will only deal with a couple of these issues that Lina and I have personally experienced, and I encourage you to read up about the other reasons as well!
Concerns about autism are dismissed by medical providers or other individuals
For us, even though we were *extremely fortunate* to be in a position for an early diagnosis, it was not an easy road. Whenever I tentatively mentioned any concern about Lina’s development (without even mentioning or thinking about autism), I heard the usual, “She’s fine, kids develop at their own pace, you’re reading too much stuff on the internet.” Yes, of course kids “develop at their own pace,” and of course Lina was “fine,” but she also happened to have significant delays in various areas, and those delays were starting to add up to challenges for her and for us. I didn’t want platitudes. I wanted answers. Was I being hysterical? Was there a medical reason behind Lina’s differences? And what could I do to support her? I can remember so clearly certain moments that made me realize, again and again, that Lina was different from her peers: seeing another kid in her daycare nonchalantly feed herself with a spoon when Lina struggled to swallow solids a tiny portion at a time; watching kids younger than Lina wave hi and bye to their parents, while Lina didn’t seem to notice a rotation in the guard; worrying that Lina’s hands would be crushed as she tried to crawl around a room where the other kids her age were walking, running, or generally stomping without compunction.
But don’t get me wrong, it’s hard to ignore the well-meaning advice of family and friends. I thought maybe they knew better, since I was a first-time mom with little basis for comparison. All I had to go on were the CDC milestones–and yet when Lina didn’t reach those milestones, even her pediatrician said, “Wait and see.” When she was nine months old and checked many of the boxes for early signs of autism in a toddler (didn’t have any form of communication, didn’t babble, didn’t point, didn’t respond to her name)…wait and see. Meanwhile I looked at babies her age and what they were doing, and I couldn’t help but think that either I was a terrible mom or Lina was…different. But who was I? Just a new mom. Doctors know better, right?
Luckily, my sister, who also happens to be a pediatrician, gave me better advice: “If you’re worried, call Early Childhood Intervention and ask for an evaluation.” Never having heard of this group before, I asked a million questions, including, “Why have I never heard of this group before?” So if you aren’t familiar with them either, don’t feel bad–you’re not alone. Here’s a link to more information by state. The important thing is they will evaluate your kid if they are under three, at no cost to you, to see if they have developmental delays in a bunch of different areas (social, communication, motor skills, etc.). If your child meets a certain threshold in their delays, they qualify for therapy services, and parents’ costs are either covered or on a sliding scale based on income. Early intervention will not dismiss your concerns without taking the time to actually evaluate your child.
If your child is older than three, and you’re struggling with your doctor or with the doubts/”reassurance” of family and friends, trust your gut. Find a new doctor if you have to. Even if it turns our your child is not autistic, you will have more information than before. And that is invaluable.
Wait lists cause delays in autism diagnosis
But let’s circle back to another pesky reason for a delayed diagnosis: wait lists. The wait list for an ECI evaluation was almost two months in Texas. When Lina was finally evaluated, we learned her delays were significant enough to qualify for some therapy. Therapy took another few weeks to coordinate. We thought we were on the right path to get Lina the assistance she needed. Then a few MORE weeks later, the ECI coordinator on Lina’s case gently explained that she thought Lina could benefit from another evaluation, this time for autism, which ECI was not qualified to diagnose. We’d have to get on a different wait list, and this time, the list was even longer. Even in a major US city, with access to top quality medical care, you could wait a year OR LONGER to see a doctor qualified to diagnose autism.
Nonetheless, I put us on every wait list in the area, while continuing to question my own sanity. Sure, she met nearly all the signs of autism on the CDC list. Sure, ECI told me she should be screened. Sure, my motherly instincts told me Lina was different. But what if I was being an overprotective helicopter/tiger/bulldozer mom? What if everyone telling me to “wait and see” was right? Was I going through all this drama over nothing?
In spite of all the signs telling me to go ahead with an autism evaluation, I almost let myself be talked out of it. In fact, the only thing that convinced me to go forward was a Facebook discussion. I had recently joined a group for moms of autistic children/children awaiting evaluation, etc. After pretty much deciding I was being hysterical and there was no need for an autism evaluation or screening, I posted in the calmest language possible, “Hey my kid is a little over a year old, and ECI says we should screen for autism. Everyone else thinks I’m nuts. Thoughts?”
The comments on this post were universal and said, in summary, “Um, why not screen? Get an answer and ignore the haters.”
Wow. To have a level-headed and open-minded response to the potential autism question…from moms who had been there…was liberating. No judgment. No shame. No questions about my parenting abilities. Ladies and gentlemen, this is why it’s helpful to talk to people who have been in your shoes.
If you’re a concerned parent or guardian reading this post, please take these words to heart: there is absolutely no harm to come from putting your name on a waitlist and seeing a doctor/qualified medical professional for an autism evaluation. There is no need to “wait and see.” If you were waiting for a sign…this is it: