Many Factors Contribute to the Rise in Diagnoses, but what Causes Autism Remains Elusive

Various factors such as enhanced awareness, advancements in diagnostic criteria, and genetic considerations contribute to the upward trend.

Broadcast Retirement Network's Jeffrey Snyder discusses the rise in autism diagnoses with the Autism Science Foundation's Allison Singer.

Jeffrey H. Snyder, Broadcast Retirement Network

This morning on BRN, many factors contribute to the rise in diagnosis, but what causes autism remains elusive. And joining me now to discuss this is Allison Singer. She's the president of the Autism Science Foundation.

Allison, great to see you. Thanks for joining us on the program this morning.

Allison Singer, Austim Science Foundation

Happy to be here.

Jeffrey H. Snyder, Broadcast Retirement Network

Yeah, it's great to talk to you. Let's start off with a base question. Let's talk about the prevalence of autism, and your organization's heavily involved in this area.

How prevalent is autism in society today?

Allison Singer, Austim Science Foundation

Right now, the CDC reports that one in 34 children in the United States is diagnosed with an autism spectrum disorder, and that prevalence number has increased over time. Back in the 1960s, when my older brother was diagnosed with autism, autism was considered a very rare disorder. One in 10,000 were diagnosed.

But the prevalence has steadily increased to now, as I said, one in 34.

Jeffrey H. Snyder, Broadcast Retirement Network

And is that prevalence increased because we just have a better, there's better science and better awareness? We've had more time to study the diagnosis, and ability to do that has changed dramatically. Is that the reason why the prevalence has gone up?

Allison Singer, Austim Science Foundation

Prevalence has changed for many reasons. You're right, we do have better ascertainment. There's much more awareness.

There have been some societal changes that have increased the prevalence of autism. For example, we know that having babies when you are older, both being an older mom and an older dad, increases the risk for autism. We know that having babies prematurely increases the risk for autism, and now we're able to save babies who are born much younger.

But the biggest increase in prevalence, the biggest driver, has been the change in the definition of autism. In 2013, there were five different subtypes of autism that were included in the DSM-IV, including classic autism, Asperger's syndrome, and what we call PDD-NOS, Pervasive Developmental Disorder Otherwise Specified. In 2013, when the DSM-V came out, all of those definitions were collapsed into one autism spectrum disorder, and the diagnostic criteria were broadened.

So many, many more people in 2014 qualified for a diagnosis of autism, and I think we see this in society. We see people like Elon Musk, Jerry Seinfeld, saying that they have autism, when in fact what they have is very, very different than what we ever would have referred to as classic autism or PDD-NOS or profound autism, which is what my daughter, my 27-year-old daughter, is diagnosed with.

Jeffrey H. Snyder, Broadcast Retirement Network

I'm sorry. Finish your thought. I apologize.

Allison Singer, Austim Science Foundation

I was going to say the prevalence of profound autism is 26% of people with ASD are diagnosed with profound autism, and the prevalence of profound autism is very similar to the prevalence of what was autism back in 2013 prior to the broadening of the diagnostic criteria.

Jeffrey H. Snyder, Broadcast Retirement Network

My apologies for interrupting you. It was not intentional. Sometimes I have a hard time determining the start and stop.

But my question to you is going to be, you know, this broadening of the definition, I would view as a good thing because, and I'll just give you my thesis, and you can tell me if I'm right or wrong, in that we're able to recognize different tranches, I'm going to call it that because I'm a layperson, and be able to treat, even if it's a slight, you know, evidence of autism. Is that a good way of looking at it? So there's more prevalence, there's more, you know, ranges to look at people.

Allison Singer, Austim Science Foundation

I think the differences between people who are very high-functioning, like as I said at Jerry Seinfeld or in Elon Musk, their symptoms are so different than someone like my daughter with profound autism who has IQ under 50, who has minimal language, who has self-injurious and aggressive behaviors that prevent her from being able to participate in society. The symptoms of people with autism are so dramatically different that they really have very little in common with each other, and it really, in my opinion, makes no sense to refer to them both as autism. Now, I do agree with you that it is good that we're able to recognize higher-functioning people, offer them supports and services, provide accommodations for them in the workplace, work with employers so that people with higher-functioning autism are able to be successful in the workplace, have friends, have romantic relationships.

But the problem is that the conversation has been dominated by higher-functioning self-advocates who unfortunately are not advocating for the needs of those with profound autism. And so that has really fallen back to their parents to advocate for the people with profound autism who, as I said, have the most severe, significant and challenging needs.

Jeffrey H. Snyder, Broadcast Retirement Network

So let's talk about the needs of those with profound autism. What do these individuals need in order to be successful in their lives, to have good quality of life?

Allison Singer, Austim Science Foundation

When you're talking about profound autism, you're talking about individuals who require 24-7 supervision simply to maintain their safety, to prevent them from injuring themselves, to prevent them from running out of their household into oncoming traffic. Elopement is an important issue. These are individuals who have seizure disorders.

These are individuals who don't sleep. My daughter, for example, would sleep two hours a night, and somehow she was able to get by with two hours of sleep a night, but I was not. These are individuals who have, as I said, seizure disorder, gastrointestinal disorders, other comorbidities like catatonia.

These are individuals who are suffering with significant medical issues who need attention, medical attention, and who need to be represented in autism research. Unfortunately, over the last, I'd say, eight years, at the National Institute of Health, people with profound autism were not included in research. It's very difficult to include them.

A lot of the research criteria requires you to have IQ of 70, and these are individuals, by definition, who have IQ under 50. I understand why researchers are reluctant to include them. It's hard for them to stay still on the scanner, things like that, and it's much easier with the broadening of the diagnostic criteria to fill research studies with higher-functioning people with autism who are able to complete surveys, who are able to communicate with the researchers, but that has to change because if we are not including people with profound autism in research, then the research we're doing does not apply to them. So one of the areas where we are very focused on in our advocacy at the Autism Science Foundation is making sure that the 26% of people with autism who have profound autism are able to participate in research and that research funding is set aside specifically to look at issues specific to profound autism.

Jeffrey H. Snyder, Broadcast Retirement Network

Allison, in terms of supporting parents and loved ones of these family members, are there initiatives that we need to take? So you mentioned the grants to study profound autism in terms of research, but what about supporting the parents and the loved ones, the caregivers?

Allison Singer, Austim Science Foundation

I think we have to do a much better job in this country at creating resources and supporting families. I think we also have to do a better job at making sure everyone understands the very early warning signs of autism and profound autism because we know that still the best weapon we have against autism is early intervention. And so the earlier we're able to diagnose children, the sooner they can begin early intervention services.

So it's always interesting to me that new parents and new grandparents always know the physical milestones for a new baby. They know when the baby should roll over. They know when the baby should pull up.

They know a baby is supposed to walk it around on its first birthday, but it's just as important for parents and grandparents to know the early language milestones and developmental milestones. For example, by nine months of age, babies should respond to their name. They should show expression in their face like joy.

They should be able to play simple interactive games like peekaboo. By a year, they should be waving bye-bye. They should be pointing to things in an effort to share their enjoyment or show that they see something and want to share their attention with you.

So there are important steps that all parents and grandparents can take to make sure that autism is recognized and diagnosed as soon as possible.

Jeffrey H. Snyder, Broadcast Retirement Network

And so it sounds like we need to do more education, I'm not saying me, but societally, we need to do more education for new parents, grandparents, basically everyone to help with this identification.

Allison Singer, Austim Science Foundation

Well, I appreciate that you're doing that by having me on your podcast. But yes, I think it's also really important for grandparents to understand that they play a really critical role in the lives of their children, their grandchildren who may have autism. First, with regard to diagnosis, studies show that grandparents are often the first ones to notice the early warning signs of autism, most likely because they have raised children of their own so they know what to look for.

But they've often told us that they are reluctant to share any concerns they have with their children, particularly a daughter-in-law, because they don't want to be seen as interfering or destroy relationships. But we always encourage parents to speak up. Your kids may be upset when you first tell them, but a year or two later when that child is in early intervention and gaining skills, they will come back and they will thank you.

But it's tough, particularly tough for grandparents when the child is diagnosed. Grandparents, I think they grieve twice. They grieve first for their child with autism who is going to have all these challenges, and then they also grieve for their son or daughter whose life is going to be made very different by virtue of having a child with autism.

But they have a very, very critical role to play.

Jeffrey H. Snyder, Broadcast Retirement Network

Yeah, they certainly do. Well, Allison, you're doing great work. I don't need to tell you that you know that and you're making a big impact.

We appreciate you coming on the program. And look, we look forward to having you back again very soon.

Allison Singer, Austim Science Foundation

Happy to come back. Thank you for having me.

Jeffrey H. Snyder, Broadcast Retirement Network

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Until then, I'm Jeff Snyder. Stay safe, keep on saving, and don't forget, roll with the changes.