Why Parents are Begging for an Autism Diagnosis

Broadcast Retirement Network’s Jeffrey Snyder discusses the financial implications of an autism diagnosis with Behavioral Therapist and Pediatrician Lawrence Diller, MD.

Jeffrey Snyder, Broadcast Retirement Network

Well, joining me now is Dr. Lawrence Diller. Dr. Diller, great to see you. Thanks for joining us this morning.

Sure. So let’s talk about autism and autism diagnoses. This is an important part of the process, doctor, but according to a recent blog post, a recent article you wrote, people are actually coming to you and I don’t wanna put the word begging in, but they’re actually asking for an autism diagnosis for financial reasons.

Why is that?

Lawrence Diller, Behavioral Therapist and Pediatrician

Well, the autism diagnosis confers a status where insurance companies in particular, and less so school systems, will offer a payment for treatment for autism where actually the treatment called Applied Behavioral Analysis, or ABA, is likely good for a range of children, toddler children, preschool children’s problems. However, the insurance company will only pay for it if there’s an official autism diagnosis. This creates a financial incentive.

I’m not blaming the parents here. I’m only stating something that hasn’t been stated enough to the media.

Jeffrey Snyder, Broadcast Retirement Network

Yeah, and the services in general, I would imagine, are cost prohibitive to the average family, and therefore it behooves the family to go through insurance.

Lawrence Diller, Behavioral Therapist and Pediatrician

That’s right. An estimate would be for 30 hours a week of this treatment, and it’s basically a behavioral reinforcement kind of treatment, it would cost a family $70,000 for an annual treatment, and the treatments may run a year or two for more severely affected children.

Jeffrey Snyder, Broadcast Retirement Network

Yeah, I mean, obviously that’s a lot of money, and I guess only the wealthiest among us will be able to pay that out of pocket. How long does it take? So let’s just say, and hypothetically, anecdotally, if I come to you with a child and I need to get them diagnosed, is that a long process?

Is it a process that takes a week, a month, two weeks? How long does it generally take to do it?

Lawrence Diller, Behavioral Therapist and Pediatrician

And I know, you know, I would start with a visit with the parents first, then one family visit, all right? That includes the child and all the sibs. If the child is six or older, there would be a visit for the child themselves, all right?

And then a visit to go over my findings with the parents. It would be a three or four visit process. My fees would come in at about $1,000.

There are much, much more detailed evaluations that sometimes the insurance company requires, which the parents alone would be spending three or four hours, and those can track up to $2,000 or $3,000 for the parents, and they would probably have to pay it themselves. This is in order to get the diagnosis.

Jeffrey Snyder, Broadcast Retirement Network

And does the cost vary depending on what state you live in, what city, or does geography matter or not matter?

Lawrence Diller, Behavioral Therapist and Pediatrician

I think geography matters some, but not a lot. I’m talking about most of the specialists are only in major metropolitan areas, and they tend to be more expensive.

Jeffrey Snyder, Broadcast Retirement Network

Yeah, so people maybe in non-popular areas maybe don’t have access to this. They would probably have to come visit a provider in a major city in order to get this diagnosis. In terms of the process, so the parents are armed with this, maybe that’s not a good word, but they’re armed with this diagnosis.

They’re now able to go to the insurance company. Are they able to take this diagnosis and then come up with a plan for their child?

Lawrence Diller, Behavioral Therapist and Pediatrician

Yeah, so that’s the idea, okay? And again, the only proven treatment for autism, and it’s not a surefire treatment from a very severely affected child to appearing normal, but the idea of improvement is fairly common, all right? So most children will improve with an intensive program here.

And again, the program is generally where the child is reinforced in terms of with rewards, food rewards, positive praise and such to stay connected with the therapist or his family, all right? Because the basic problem with autism, my view is like you and I are looking at one another right now. If we did a staring contest, one of us would eventually look away.

But for a very severely affected autistic child, this eye contact is overwhelming, all right? So the trainer’s basically getting the child to get used to this contact. And if language isn’t there, also adding language training to the child, okay?

So if the child is able to do this for 10, 15 seconds, they might give the kid a food reward or let them self-stimulate because that’s the other thing. The children will, in order to avoid this, may smack themselves on the face or do something odd that looks very odd, all right? And they really would like to do that, but they’re restrained by the trainer until they give you the 15 seconds of eye contact.

And then if they wanna smack themselves, that’s the reward to smack themselves. That’s one example. I don’t wanna do that.

But the basic idea is to keep the child engaged by using primarily rewards and not allowing the child to escape to self-stimulation. I don’t know if that makes sense.

Jeffrey Snyder, Broadcast Retirement Network

No, I mean, it makes sense. Obviously, I don’t practice what you do, but I think anecdotally, and it makes sense to the lay person like me. In terms of, at the beginning of our conversation, we talked about the cost.

It’s so cost prohibitive. Is there a way over time to bring those costs down? More behavioral therapists, more people that are following you and your lead into the training that you have.

I know you have over 45 years of expertise and experience, but are there ways that eventually maybe the cost can come down?

Lawrence Diller, Behavioral Therapist and Pediatrician

Well, the training actually is done by much, much less experienced people. And indeed, that’s become a problem. I think this ABA treatment has become less effective over time in terms of getting watered down in the people who are delivering it.

So the costs are an issue, and I’ll bring it on the side to you that I wasn’t covering, but it’s become a big deal here, Jeff, which is a fraud. And here, the fraud, you may have heard about the Somali community in Minneapolis being analyzed for fraud based on clinics that are supposedly delivering these treatments, but are not doing it. But last week, there was a major Wall Street Journal front page article on the widespread potential fraud in terms of fake diagnoses, weak treatments, and this would be Medicaid payments going to companies.

I wasn’t necessarily kind of following up on that. My interest was simply, there is a financial incentive in terms of the diagnosis.

Jeffrey Snyder, Broadcast Retirement Network

Yeah, absolutely. I mean, if you care about your child, you’re gonna do everything and anything to get what they need so that they can be treated and be productive members of society. Dr. Diller, we’re gonna have to leave it there. Great to see you. Thanks for joining us, and we look forward to having you back on the program again very soon, sir.

Lawrence Diller, Behavioral Therapist and Pediatrician

Okay, bye-bye.

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