← Chasing Life with Dr. Sanjay Gupta
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- [00:03]
Host
Hey there. Welcome to Paging Dr. Gupta. This is the place where we discuss the questions that matter the most to you. And today we decided we're going to do something a little bit different. We want to continue a conversation that I thought was really important based on a listener named Victoria. She had called in to ask about autism. She was very clear. She said she just wanted the facts. And for that we did an episode with autism researcher Dr. Matthew Lerner. And he reminded us to put this moment into important perspective.
- [00:35]
Dr. Joshua Ambar
April is autism acceptance month. But as the autistic people and families that I work with every day say, you know, every day is autism acceptance day in my life. So I'm hoping that, you know, we can keep having these conversations even, even beyond April.
- [00:50]
Host
And that made me realize that, look, this isn't just a one episode conversation. This should be a longer term conversation. In fact, Victoria had even more questions, especially when it comes to her 14 year old autistic son, Mason. What should families understand about how support needs can change as autistic kids grow into teens and young adults? What does happen? How do support needs change when autistic kids grow into teens and young adults? To dig into this specifically, we wanted to bring in someone who not only studies this, but but is living it.
- [01:25]
Dr. Joshua Ambar
I was diagnosed with what was then called Asperger's syndrome coming up on 20 years ago now. So I have this whole shtick of I don't do research per se, I do me search. And if the rest of humanity benefits, all the better for it.
- [01:41]
Host
That's Dr. Joshua Ambar. He's a public health professor at Arizona State University. He researches autism. He specifically researches how young people with autism transition into adulthood. So we thought he'd be the perfect person for today's episode. We're going to get into a lot of these questions and important developments right after the break. Stick with us.
- [02:09]
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- [02:41]
Dr. Joshua Ambar
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- [02:59]
Host
So back to Victoria's question. What should families understand as autistic kids grow into their teens and eventually become adults? First of all, remember this. No two autistic people are exactly alike.
- [03:14]
Dr. Joshua Ambar
It's very unique to the individual. There's a saying in the autism community. You've met one person with autism. You have met exactly one person with autism.
- [03:20]
Host
Again, that was Dr. Joshua Ambar. And I think it's a really important point, something to keep in mind as we have these conversations. It's very hard to broadly generalize when talking about autism. And there's something else you should keep in mind. For years, autism research didn't actually focus on people with autism themselves.
- [03:41]
Dr. Joshua Ambar
We have found that a lot of our research often focuses on parents, on caregivers, on providers, on. And we have found that they often ignore the autistic person at large. And that's not correct. Autistic individuals often have a lot to say about their care, about their goals, about what they want to do and what independent living means for them. And the research literature ignored that, really, until about 15 years ago when we started to realize that individuals with autism had a lot to say. They didn't have the tools to say it.
- [04:17]
Host
Dr. Anbar told us that when technology, like the iPad, for example, became widely available, it opened up new ways to communicate.
- [04:25]
Dr. Joshua Ambar
Given the tools, the proper tools to communicate, they will have a lot to say about their care and about what their goals and objectives in life are.
- [04:36]
Host
And that, I think, brings us back to the question, Victoria, as you think about how to support your son as he gets older, it starts with listening.
- [04:46]
Dr. Joshua Ambar
The top line takeaway is that you should interact with your son, Mason. You should ask what he wants. Don't just let it be imposed by a system around them. Our school system, through various federal and state laws, rules and regulations, focuses on what they feel the transition to adulthood should look like. This means some basic independent living skills. This means how do we make sure that they can successfully graduate or otherwise separate from secondary education? But that's not enough. We know that upwards of 80% of youth with autism intend to pursue some form of post secondary education. There is an aspiration among autistic individuals to live meaningful, productive lives, but it's what is meaningful and productive to them versus what is meaningful and productive to a provider. And that's a very different viewpoint.
- [05:42]
Host
Another point, Dr. Ambar makes is that it's going to be an adjustment for the entire family.
- [05:47]
Dr. Joshua Ambar
It's also respecting that individual's needs, wants and desires. And this is true for people who don't have autism. Families can relate to this all the time. Letting your children grow up, leave the house. I know it was very painful when I grew up and went to college and my parents very naturally struggled with that. It's a normal thing when we're dealing with somebody with autism. However, depending on their level of function and how much support they've had, it becomes much more compounded because you've spent 18 years, 20 years caring for somebody and being an advocate for them and it's hard to let go. It's hard to say, now you are the one who's in charge. So it is a process both for the parent, the caregiver, and broader institutions and providers. But it's also a process for the autistic individual themselves. The first time, in some cases, learning how to interact with the world around them in a way where their parents aren't serving as a mediator or an advocate who's right there by their side. This is a whole new dynamic and it takes a lot of time to adjust to it. And these are the things that everyone has to work out but are even more important for the autistic community.
- [07:01]
Host
And for some families, this can be particularly challenging. Here's why. Sometimes young autistic kids with aggression issues become young adults with aggression issues towards themselves or even towards others. And this does happen. My daughter's close friend, who is now a young adult, struggles with this aggression issues. And she told me it can be really hard. He's a big guy now, he is strong and he sometimes becomes aggressive with his parents, in particular his mother. So we looked into what is out there and actually there have been some worthwhile developments. Autism research expert Dr. Matthew Lerner, who we just spoke with on our last episode, told us there's a great emotional training program. It comes out of the University of Pittsburgh and it's called Ease E A S E. It's still in clinical trials. It's not available to everyone yet, but initial studies suggest that it's really good for helping people to build their own self regulatory skills. And there are a couple other approaches he mentioned as well. There's this early intervention program called Ruby that was for young kids with aggression, but it's now been scaled up for adults as well. There's also a company called Catalyte C A T A L I G H T that is also working on this. Dr. Lerner is involved in a clinical trial with them, and he told us that it basically involves engaging parents, friends, and kids, caregivers, in sort of a support scaffold and network for the autistic person, while also helping the autistic person build their own skills. So, look, I won't minimize this, but I think it's worth pointing out that there are some promising programs and resources out there. Those are just a few that we mentioned, but I hope that's helpful to anyone who's wondering about this. All right, when we come back, we're going to tackle some of the biggest misconceptions about autism and. And growing up. That's after the break. All right, there goes the pager, which means it's time to get to Victoria's next question. What are some common misconceptions about independence, college work, and adulthood for autistic young people? All right, let's go back to the expert. Dr. Ambar.
- [09:21]
Dr. Joshua Ambar
The first biggest misconception is that once somebody successfully gets to adulthood, we assume that they have solved their autism or that we assume that they have successfully made it to adulthood. Therefore, they don't require any additional supports. That's not true. And B, it is not a disabling condition in the way that the media or Hollywood will stereotype it. As you can successfully live life while also being autistic, the transition to adulthood may look very different. It may be extended, it may be rocky, but it can and does happen every day successfully.
- [10:03]
Host
Dr. Ambar says the problem largely is that the system, the way it stands now, isn't really built to support that transition.
- [10:11]
Dr. Joshua Ambar
We have developed a system that provides wraparound services if you get a special education, exceptionality for autism, if you have a clinical diagnosis of autism, but all of that disappears once you leave secondary education. Our system is not set up to accommodate adults with autism in the way that we accommodate them as kids.
- [10:30]
Host
And therein lies the disconnect, which incidentally feeds into another myth, which is that autistic people cannot live independently.
- [10:40]
Dr. Joshua Ambar
On the flip side of that coin, though, we have this tendency to say, well, you have autism. This is a disability. Therefore, you can't successfully gain employment. You can't successfully live independently, and that's just factually untrue. Are there some individuals who may not be able to hold jobs because of their autism? Certainly, but this is not necessarily everybody. With autism, you can be gainfully employed doing all sorts of job functions, whether it's blue collar jobs, service jobs, information technology jobs across the economy. This is all very doable.
- [11:16]
Host
So, yeah, again, look, there can be real challenges, and some people will need more support than others. While we started this conversation by reminding you that no two people with autism are exactly the same, but there are also real possibilities. There are real jobs, real independence. It's something Dr. Ambar has experienced firsthand as someone who has autism. He is now a college professor. So, Victoria, we told him about you, and he wanted to give one final piece of advice.
- [11:46]
Dr. Joshua Ambar
You're already loving and supporting. I think that's far and away the most important thing. I think beyond that, it's not underestimating your son Mason's ability. When I was in high school, I certainly did my fair share of messing up, and I think that there's a lot of that underestimation that goes on. And when we start underestimating people, we start setting them up to not succeed in the way they want to. Having that conversation, what does success look like for you? So, Victoria, when you're talking to Mason, what does this look like for you? What do you want to do with your life? How do we get you from where you are today to that end point? And knowing that maybe the destination will change over time, but understanding that we can have that conversation, that we can set reasonable goals, aspirational goals, and that we can meet them. But it's having that conversation and not underestimating the ability of the person in front of you, understanding that the pathway for that individual to get to the end destination is going to be their own path. And how can you best support them along that journey? I think that is the critical thing to do, and I think it's something my parents did very well.
- [13:08]
Host
That idea, that idea of not underestimating an autistic person, I think that's huge because expectations really are the key here. They shape what people even get a chance to try. So, Victoria, keep having the conversation with Mason. What does he want? What does his version of growing up really look like? Because that's how you start to build the right support around him. And, Mason, incidentally, If you're listening, Dr. Ambar had a message for you as well.
- [13:37]
Dr. Joshua Ambar
Teenagers all across. All across the world and throughout time and space think parents know what they're thinking. They don't. That's something I've learned, and it's something that I've only come to a realization of as I exited my 20s and entered my 30s. So, Mason, have those conversations with your mom. Listen to your mom. She loves you.
- [14:04]
Host
If you want to get a glimpse into the lives of Victoria and Mason. We've decided to create a photo essay based on a day in the life with them and we'll link it in the show notes and Victoria Mason, thank you for your questions. Thank you for trusting us with your story. Really is an honor to hear all your questions and frame this discussion. We take them seriously. So thank you. And if you're listening at home right now and you're thinking, hey, I have a question as well, send it to us. We are listening. We might just feature yours on the next episode. Reach out, record a voice memo, email it to paging Dr. Gupta.com. that's paging Dr. Gupta.com or give us a call 470-396-0832 and leave a message. Thanks so much for listening. Influential journalist Kara Swisher is taking a hard look at the longevity industry. There's so much bad information that the really good information gets drowned. The new CNN original series Kara Swisher wants to live Forever now, streaming on the CNN app.