Jon Owen, the president of the Utah Autism Coalition, was asked whether he wanted his son Ben at age three to receive an autism diagnosis. You won't have insurance coverage here, he was warned. Learn about the hard choices the Owen family made for their son:
We thought we were doing everything right.
We had found a great pediatrician for our first son, and took baby Ben to see him. At 18 months, he told us, “Kids develop at different rates, but to be safe, you should get Ben evaluated with the early intervention folks.”
At first, all we knew was that he was developmentally delayed. He didn’t sit up, crawl, or start to walk at the times most kids do. Words were not coming. Once he did start to walk, it was like he had a different relationship with gravity--clumsy, and easily distracted. He did not sleep well, and neither did we...nor would we for the next 4 years.
We started to receive speech therapy, OT, and PT through the state’s early intervention program - a couple of hours a week, in our home.The therapists were wonderful people who established a rapport with Ben and really cared about him for the short time they spent with him each week.
Our year-long experience with early intervention later expanded to include “kindermusic” and a directed play group. All of the people involved were wonderful...obviously caring and enthusiastic people. Ben made some progress, but still only had a few words (primarily “More!”).
Unfortunately, early intervention services in Utah end at age 3. A fellow parent told me, “You might want to get Ben on the waiting list at Pingree (an autism treatment center) - the wait is about 18 months right now.”
Are you sure you want this?
About this time, we got our official autism diagnosis. We were told “Are you sure you want this? He has autism, but getting it diagnosed may not be helpful - you won’t have insurance coverage for it here.”
We asked about ABA, and were told, “That will cause you serious financial problems, and he seems to be on the verge of speaking. Wait and see - try the public school system - you can at least get speech and some other therapy through there.” My wife and I talked about it, and decided that we wanted Ben to have the correct diagnosis.
I still feel that this was the right choice, although I’ve since learned that having an autism diagnosis can lead to claims being rejected for anything from well-child visits to a broken arm. Speech, occupational, and physical therapy are things you can have access to for other conditions, but not if you have an autism diagnosis. Medication for issues that come along with autism can be expensive and are sometimes covered...but not if you have an autism diagnosis.
We enrolled Ben in the local public school’s special education preschool. The staff was great - they loved him and I know they did their best by him. However, he made almost no progress -- our Ben at the end of that school year had the same abilities as when he started.
'I love you, Mommy'
But we had made it through the waiting list at Pingree, an autism treatment center where they practice a form of behavioral therapy. They know autism and how to deal with all the issues that come along with it. It felt safe and secure...around half of kids with autism are prone to wandering, and Ben was no exception. Ben made huge progress right away. After only a few weeks, Ben spoke his first full sentence out of the blue at dinner one night: “I love you, Mommy.”
Ben’s progress didn’t stop - he made huge gains that year - enough that we were willing to pay the steep cost for another year there. We refinanced our house to afford it. We traded the only real savings we had - our equity in our house -- for one year of treatment. We were fortunate that we had time to build a career and buy a home before we had a child with autism. If that had happened when we were just starting out, I don’t know how we’d have dealt with it.
But here's the thing...
Here’s the thing though - I don’t want people to pay attention to our one experience. People should be paying attention to the big picture…they should listen to the American Academy of Pediatrics and the ridiculously long list of other endorsements. There have been hundreds of papers written on ABA and those people know how to interpret them. They’re the experts.
Since joining the Utah Autism Coalition, we’ve heard many stories of what other Utah families have sacrificed to pay for therapy - they’ve sold their houses, cars, furniture, anything of value. They’ve gone into debt, missed house payments, and gone bankrupt. That’s a bitter pill, particularly when you have health insurance and faithfully pay your premiums.
Halfway through Ben’s second year at Pingree, his teacher told us that she thought he needed to be in a classroom with typical kids. That way, he could model their behavior. We got Ben in to see one of the few developmental pediatricians in Utah who is an expert on autism. He directed us towards behavioral therapists.
Can I have a playdate with Ben?
We contracted with a behavioral therapy provider and started prepping Ben for school over the summer. He started this fall, with support from therapists in the classroom. I won’t say it’s been without bumps here and there, but he’s made dramatic progress. He has friends now, can carry on a conversation, and loves to be a part of the classroom. Today when I picked him up, a boy said, “Can I have a playdate with Ben?” That’s the first time.
It can be hard to find doctors and therapists who deal with autism. Why would someone specialize in something that’s not covered by insurance? In Utah, we are actually pretty good at training people to provide therapy. It’s a rewarding, well-paying career. If you want to practice that profession, though, you probably want to move to Colorado, or Arizona, or Nevada, or Texas, or any of the 34 states where autism is covered by insurance.
Paying for this out of pocket has been difficult, but I have no doubt that it’s been worth it. We don’t know what Ben will be like at 8, much less 18. We are sure that his chances of leading an independent life are much, much greater since we took the steps we did. I just wish we’d started sooner.
We paid our premiums, but were excluded
What’s our story? It’s this: We did everything we were supposed to do within the system, only to find out that the system was broken. Our society has a health insurance industry that spreads the cost of medical treatment across all of the people who participate. We paid our premiums and when our moment of need came, we found out that we were excluded. Thousands of Utah families are in the same boat.
I don’t want to have to tell the insurance industry how to do their job, but I will...because they are not doing their part. Listen up and fix it.