2 Decades in the Autism World and Not Many Positive Changes to Report

A few months ago I did a keynote presentation in Australia where I had the privilege of presenting the lessons I’ve learned on my personal and professional journey with autism.  At the end of day I also participated in a panel presentation where I was asked a question something like this:

“After spending almost two decades in the autism world what changes have you seen?”

It was a great question that I had never been asked before and here is what I said:

When Lucas was starting to show the earliest warning signs of autism in early 1998, most parents and professionals were clueless about what autism looked like in a toddler. The rate of autism back then was 1 in 500 and early detection and screenings were not done routinely.

Over the past two decades the autism rate has continued to climb with estimates with at least 1 in 68 children being diagnosed. As the autism rate has escalated there is certainly more awareness of what autism looks like in a baby or toddler, thanks in part to almost everyone knowing someone with autism and also due to several sibling studies which are done at many University teaching hospitals in the United States. Back when Lucas was diagnosed, we knew that siblings were at a higher risk but the most recent studies show that approximately 20% of siblings of children with autism will also be diagnosed.

While I have seen more awareness of autism and less stigma attached to getting the diagnosis early, the waiting lists for autism evaluations are several months or up to two years.

After getting diagnosed with autism, children often must wait months or years to get treatment. But, there are some changes. One positive change is that now more insurance companies are covering ABA treatment but the early intervention system, which services kids under three in the United States usually does not include providing kids with the most evidenced based treatment which is early intensive behavioral intervention at 20 or more hours per week.

So this is perhaps the most disappointing thing I’ve seen in my two decades in the autism world – very young children with early warning signs of autism are receiving the same crappy services that Lucas received when he was two such as one hour of speech therapy, an hour of occupational therapy and/or an hour of teacher time. A behavior analyst is only brought into the situation if a parent knows to ask for it. Also, because three hours of non-behavioral therapy won’t usually make a dent in the child’s progress, the gaps become wider and the problem behaviors usually increase while the parent waits in line for an autism diagnosis or for more intensive treatment. Since the brain is the most plastic early on, we continue to miss this critical window of time when kids can make the most gains.

Because of the dramatic increase in children with autism since the early 90s, school systems are stressed more so than they were 2 decades ago and the adult autism systems in the US are ill-prepared for the influx of adults with autism that has already begun.

So, in summary, I’ve seen a few changes in the past two decades in the autism world and most of them are not positive:

There’s been a huge increase and the number of children with autism with an estimated 1.6 million children living with autism in the United States.

With this rise autism there are very long waiting lists for evaluations and treatment.

Children with the early warning signs of autism continue to not being treated with an intensive early behavioral intervention and instead are receiving one to 3 hours of eclectic treatment per week during the most critical time of their development.

The school and adult systems are stressed trying to meet the complex and varying needs of children and adults with autism.

This blog is sounding pretty depressing so let’s not end with all doom and gloom.

I’m tired of waiting for changes in the system so I’ve set a new goal—to turn things around for 2 million kids with autism by 2020 through online training and advocacy. I already have two course to help both parents and professionals learn how to better teach their children and clients who are already diagnosed with the goal to help each child and adult reach their fullest potential and to be as happy as possible. Now, I’m offering a brand new course to teach parents how to treat and hopefully reverse the earliest warning signs of autism.

Let’s not let another 2 decades go by without major positive changes for everyone.