A few weeks ago I did a vlog called “What is autism?”
And I covered the signs of autism in young children.
And one of the things I didn't mention on that video blog was that the length of most
waiting lists are huge and so long.
And so I wanted to cover today some of the uh, strategies you can use while you're waiting
for an evaluation or for more, uh, aggressive treatment.
Hi, I'm doctor Mary Barbera, autism mom board certified behavior analyst and bestselling
author of the verbal behavior approach.
Back when my son Lucas started showing signs of autism in 1998 when he started showing
signs and then when he was diagnosed 1 day before his third birthday in 1999, I was in
denial for over a year 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 there.
Most studies show 1 in 59 but some studies show 1 in 40, 1 in 29.
So we'll just say that the rate of autism went from 1 in 500 2 decades ago to about
1 in 50 now.
And 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 children's hospital.
And then 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 4to 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 rates about one
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 insurances in most states have to cover autism treatment, that being ABA,
applied behavioral analysis treatment, the, but the wait list for a developmental pediatrician
evaluation are 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.
So waiting 9 months to 2 years for just an evaluation and then additional waitlist to
get, um, ABA treatment, which can also be really lengthy.
And I, I feel a little helpless about the wait list, especially because this is all
across the United States.
And I just can't imagine like if you thought your child might have some type of cancer
or if you thought your 2 year old had some kind 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 a, you would find another way.
And, and a lot of parents are waiting and worrying during this, even if it's 4 months,
it's still 4 months uh, and missing a critical window of time.
The sad part is the children are missing this critical window.
This, this really important first few months, first year when they start to show delays.
And I did a video blog on recovering from autism and I didn't realize back in late 1990s
when Lucas was diagnosed, um, that recovery from autism was even possible.
It was proven that it was possible back in the late 1980s by Dr Ivar Lovaas um, from
UCLA.
And now it's still possible, but kids are waiting for a diagnosis, not getting the kind
of intensity that could lead to recovery.
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.
You also, I would recommend getting on several wait lists.
If the wait list at the children's hospital is, is you know, 6 months,9 months and the
wait list at another, you know, 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 wait lists so that you can do, um, 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 or and/or services.
People like speech and language pathologists, occupational therapists and teachers.
Now know that this is not intensive, usually intensive behavioral treatment, which you're
going to need as the most evidence based treatment for autism.
But treatment can, 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.
So having, like when I took Lucas for an evaluation to see if it was autism, he the doctor had
then the early intervention reports that showed that his language was that a 9 month old or
12 month old even though he was 3 years old and 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, some therapy can help the situation while you wait.
The second thing you can do is you can download a 3step 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 you
wait.
And the third thing, um, I would suggest is to really consider, um, 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, easy, uh, steps you
can take with materials that you might already have in your home, like a shoe box and dollar
store flashcards and Mr. Potato Head and you can learn how to become your child's best
teacher and best advocate and you can get into the, 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.
And even if it turns out not to be autism and your child catches up developmentally
and there's no longer needs a 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, better advocate for
kids with all kinds of special needs.
And even for typically developing kids a, it can't hurt the situation.
So I hope that you're not, 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 joining, getting my free
three step guide at marybarbara.com/join.
If you'd like this video blog, I hope you'll give me a thumbs up, leave a comment and share
with others who might benefit.
And um, I hope to see you right here next week.