A few weeks ago I did a vlog called “What is autism?” and I covered the signs of autism in young children. One of the things I didn’t mention on that video blog was that the lengths of most waiting lists are huge and so long. So I wanted to cover today some of the strategies you can use while you’re on a waitlist for an evaluation.
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Back when my son Lucas started showing signs of autism in 1998 and then when he was diagnosed 1 day before his third birthday in 1999, I was in denial for over a year. This started when my husband first mentioned the possibility of autism when Lucas was just 21 months old.
Back in the late 1980s, autism affected about 1 in 500 children and now the rate is about 1 in 50 give or take. Most studies show 1 in 59 but some studies show 1 in 40 or 1 in 29 even. So we’ll just say that the rate of autism went from 1 in 500 two decades ago to about 1 in 50 now. Once I finally got out of denial about autism back in 1999, it took about 2 to 3 months to get an appointment with a developmental pediatrician at the children’s hospital. And once that developmental pediatrician recommended ABA treatment, I took us another 2 to 3 months to get that intensive ABA treatment to start as well. So, in the end, I waited about 4 to 6 months for treatment to start once I got out of denial.
Flash forward to now, 20 years from Lucas’s diagnosis, and as I said, the rate’s about 1 in 50 and because everyone knows someone with autism now and people know the importance of early intensive therapy to help children reach their fullest potential, autism is not as stigmatizing as it was back in the late 1990s. There’s even some knowledge by pediatricians at least, and other health care workers about the importance of ABA treatment and even insurance reform has taken place over the past decade so that most insurance in most states have to cover autism treatment, that being ABA or Applied Behavioral Analysis treatment. But the waitlist for a developmental pediatrician evaluation is now almost always between 9 months and 2 years in length. That’s what I’ve been hearing from multiple sources across multiple states, right within the United States.
Parents are usually waiting 9 months to 2 years for just an evaluation and then an additional waitlist to get ABA treatment, which can also be really lengthy. I feel a little helpless about the waitlist, especially because this is all across the United States. I just can’t imagine if you thought your child might have some type of cancer and you were told that you had to wait 9 months to 2 years to even see if it was cancer. You would be very angry and you would find another way.
Even if it’s 4 months, it’s still 4 months and you’re missing a critical window of time. The sad part is the children are missing this critical window that’s really important, the first few months, the first year when they start to show delays. Kids are waiting for a diagnosis, not getting the kind of intensity that they should be to reach their fullest potential. So what can you do?
Psychologists, psychiatrists, neurologists, and some general pediatricians with advanced training can also diagnose autism. So these might be good options to look at as another way to get a diagnosis. I would also recommend getting on several waitlists. If the waitlist at the children’s hospital is 6 months or 9 months and the waitlist at another hospital in a nearby state is also 9 months or a year, apply to both. Fill out the paperwork even though it’s a pain. Fill out the paperwork and get on several waitlists so that you can get in as soon as possible to someone. But while you wait for an evaluation or some more treatment options, there are several things you can do.
First of all, you can call your local early intervention provider to get free or low-cost multidisciplinary evaluation and/or services. People like speech and language pathologists, occupational therapists and teachers. Now know that this is not intensive behavioral treatment, which you’re going to need as the most evidence-based treatment for autism. But that can get you started. It can give you the evaluations to show the discrepancy between typical milestones and what your child is, is performing at.
When I took Lucas for an evaluation to see if it was autism, the doctor had the early intervention reports that showed that his language was that a 9 month old or 12 months old even though he was 3 years old. It helped him to make the diagnosis easily because he saw these big discrepancies. So I think having early intervention providers in your community do baseline assessments and get started with some therapy can help the situation while you wait.
The second thing you can do is you can download a 3 step guide that I created called Turn Autism Around, which includes a 1-page assessment, a 1-page plan, and an easy way to start taking data on a calendar. So when you download the guide at marybarbera.com/join you’ll also have the opportunity to watch a free online workshop and to learn more about joining my online course and community where we can provide you with more support and more step by step guidance of ABA that you can put into place on your own while waiting on a waitlist.
The third thing I would suggest is to really consider joining my online courses and community even without a diagnosis yet. Even if it turns out to just be a speech delay or hyperactivity or learning disabilities, the information you can learn within my online courses and community are easy steps you can take with materials that you might already have in your home, like a shoebox, dollar store flashcards, and Mr. Potato Head. You can learn how to become your child’s best teacher and best advocate and you can get into the captain of the ship mode and to learn how you can navigate the system and get your child the help he or she needs as soon as possible even while you’re waiting for a diagnosis.
Even if it turns out not to be autism and your child catches up developmentally and no longer needs diagnosis or loses the diagnosis, my courses and materials can help you while you wait. It just really teaches you how to be a better parent, better teacher, and better advocate for kids with all kinds of special needs. And even for typically developing kids it can’t hurt the situation. So I hope that you’re more inspired not to just sit and wait and worry, but to actually take action and to learn some of the techniques by getting my free three-step guide at marybarbara.com/join. If you liked this video blog, I hope you’ll give me a thumbs up, leave a comment and share with others who might benefit and I hope to see you right here next week.