The last few years have been difficult for many reasons. While the CDC has ended the federal Public Health Emergency for COVID-19, it doesn't mean the impact is over. In fact, for many families, the issues caused by the pandemic have been broad and far-reaching, especially if they were attempting to get an autism diagnosis.
While wait times for proper diagnosis and treatment have never been short, at least not where I live in Idaho, the impact of the coronavirus pandemic on wait times for autism diagnosis and services has been severe. Read on to discover what you can do, how to get your child the proper diagnosis and support they need, and what you can do while you're waiting.
The process of getting an Autism Diagnosis.
There are many misconceptions about Autism Spectrum Disorder. Some people believe those who are diagnosed with Autism are all the same and that there is no hope for improvement.
The reality is very different! There's a wide range of symptoms and a wide range of severity and support needs. It's one of the things that makes getting an accurate diagnosis a challenge for some.
If you think your child needs to be evaluated for autism or another developmental delay, your pediatrician is the first person you should talk to. From there, you will most likely see a neuropsychologist, development specialist, psychiatrist, or possibly even someone from your state's early childhood intervention program.
Many providers are qualified to make the diagnosis. Unfortunately, your pediatrician probably isn't one of them, and they will need to send a referral to a specialist. The assessment may involve a single provider or a team of specialists who will meet with you and your child, assess the paperwork and questionnaires you submit, and work to make a diagnosis.
The impact of COVID-19 on an already stressed system.
It took almost 2 years to get my children evaluated for autism, and that was in 2018 before Covid was even a thing! Wait times for proper evaluation can be long under the best of circumstances. Covid caused those delays to become much worse in many locations.
According to this article from The National Library of Medicine:
"The COVID‐19 pandemic has superimposed profound disruptions to usual care pathways in already strained service delivery systems. Traditional face‐to‐face ASD assessments, which were associated with extremely long wait times before COVID‐19, have become more difficult to access, or entirely untenable in some settings."
That's fancy talk for you were kinda-maybe going to wait before, and you're most definitely waiting a long time now. Wait lists are long, more children are showing signs of delays that could be signs of autism or could be signs of stunted development due to the pandemic and lack of social interaction. And there are even more requests for evaluations being made today.
Either way, a few things are clear...the pandemic caused significant delays in getting an autism diagnosis for many families. More families need assessment. The wait times are getting longer.
Is it a developmental delay that will resolve on its own, or do you need an autism diagnosis?
Autism symptoms usually show up, in some form, in early childhood. According to the Centers for Disease Control and Prevention (CDC), one in every 36 children will be diagnosed with autism by their 8th birthday.
The symptoms of autism vary widely from one child to another and often include a combination of delays in social interaction, language, and communication. The CDC notes that while many autistic children show normal development in other areas, like motor skills, social skills, and imagination, these delays may affect their ability to live, learn, and engage in daily activities.
Unfortunately, some of the symptoms we typically see with autism are showing up in young children who may or may not be autistic, but who were limited in their development due to pandemic restrictions and mandates. Children may be delayed in language, have trouble with social skills, or struggle to focus in a classroom (all signs of autism).
It can make it hard to tell what was pandemic related, and what needs to be evaluated as a possible developmental delay. So what's a parent to do?!
What parents need to know (and do!) now.
Glad you asked!
The #1 thing I tell everyone who thinks their child may need to be assessed for autism is to ask your pediatrician for a referral ASAP. If you have to argue with them about it, do it. If they refuse to send you the referral, ask them to document in the chart that you requested the referral, and that they refused...this trick works almost every time to get you the referral you asked for.
9 times out of 10, if you think something is going on for your kiddo, it probably is. This is a great time to search out local parent support groups in your area to find resources that are specific to your state or city. Just search on Facebook for "autism + your area" and I'm sure you'll find a few groups to choose from. They may even be able to help you find a practice with shorter wait times or have advice about which clinics can get you in sooner.
What if you're thinking, "The wait times are long, and developmental delays are something some kids grow out of, why should I bother with all this?!"
The issue is you don't want to wait for them to grow out of something, taking a year or two to "wait and see," only to realize your child really does need an evaluation...then having to wait 6 months-2 years for them to get it.
Better you "wait while on the waitlist." Worst-case (best-case?) scenario, when it's your turn for an evaluation if your child's delays have resolved, you can decline to schedule the assessment appointment and the next family will move up that much quicker.
Conclusion
The right type of early intervention is key to helping autistic children thrive. Getting an accurate diagnosis is the first step in that process. While Covid-19 has caused some significant delays, getting your child evaluated is a very important part of the process of getting them the support and therapies they need.
I know how stressful the process of getting your child diagnosed with autism can be! As we see clinics and practices clearing out their backlog of assessments, even more children are likely to be diagnosed in the near future. If you're supporting your child and your family through this process, you need to practice some serious self-care to keep yourself sane…turst me, I know!
That's why I wrote a FREE mini eBook titled "7 Simple Ways to Reduce Your Stress: A Guide for Parents of Autistic Children.” You can download your copy by clicking here. I hope it helps you manage your stress during this challenging and chaotic time of assessment delays and diagnosis deluges.
The next few months may be a challenging time, but with the right resources, you and your child can thrive amid the chaos.
Meet your self-care coach!
