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What difficulties in learning will your child with autism face?
In this episode, we meet Peter Gerhardt, who has been teaching kids with autism for over 40 years. He is a remarkable warrior with unique experience in educating kids who learn differently. Peter shares great stories that prove kids with autism may learn differently, but they do learn well.
Peter
One of our mantras is “Adulthood begins in preschool.” And if you look at typical kids, that’s what happens. You know, they pick up a lot of skills along the way just because they can. They learn a lot of things just around the house from mom and dad. Kids on the spectrum tend to need to be taught those things. They don’t just pick them up on the fly. But those are really, really important skills. Generally far more important than “Can you name all 50 states?”.
Gene
That’s Peter Gerhart. He’s the executive director at EPIC Programs in New Jersey, a school for people with autism. Today, you’re going to learn about challenges and successes of young adults thriving with autism. This is Episode Four of an introduction to autism, a series dedicated to helping parents whose children might be showing signs of autism. An Introduction to Autism is a compassionate, evidence based series that provides solid information, guidance and hope. I’m your host, Gene Gates. And this series is produced by Dr. Jane Howard and Coleen Sparkman from Therapeutic Pathways in Northern California. Peter, today you were talking about adults with autism. What ages are we talking about?
Peter
Well, usually when we’re talking about adults, there’s a legal definition of 18 and older. But for many individuals on the spectrum, they stay in school until the end of their 21st year. So that’s oftentimes what’s referred to as the transition to adulthood, when they go from school at the end of their 21st year into an adult service system. But then adulthood, it’s the longest part of your life, it just continues on. And we now know that people with autism can expect to live typically long lives barring anything that would happen to any of us.
Gene
Is their life expectancy on a par with someone who does not have a diagnosis of autism?
Peter
It does look that way.
Gene
Okay. Well, that’s good news, right?
Peter
Yeah. If you asked me that 30 years ago, I would have said no, but that’s because we know a lot more now. And people have better services now. So that’s made a huge difference.
Gene
So Peter, when you say 18+, but people on the spectrum tend to finish school in their 21st year, is that high school or is that some form of higher education?
Peter
It’s really high school. You know, sometimes people say “super seniors.” It’s still high school, but it’s really used to transition people into the world of adult living and employment.
Gene
And is that a traditional high school then at age 21? I don’t think so, right? Because you can’t really go to a regular high school at the age of 21. Can you?
Peter
No. If you’re in my school at 21 years, it’s not academic. We’re not working on academics, we’re working on life skills. We’re looking at real life skills out in the community, not in some fake little kitchen.
Gene
So if we think about autism on a spectrum, where someone you don’t even hardly know that they were ever diagnosed with autism, all the way up to kind of maybe, having trouble functioning on their own, and they probably need a little bit of supervision. For people in your school, where on the spectrum does this lie?
Peter
If you look at DSM-5, you know, our latest diagnostic criteria, there’s autism-1, which are very able, like you were saying that sometimes they’re indistinguishable in brief moments from their typical peers. Then there’s autism-2, which is a little more cognitive involvement, intellectual disability, and then you get autism-3, which is sort of a more involved and the kids in my program are usually autism-2 or 3.
Gene
So they would be maybe in the 2.5, and 3 range, right?
Peter
You can put it that way. Yeah.
Gene
Parents might want to know what to expect for their child. So, kind of at what age can you start to predict what the future might look like?
Peter
You know, I can’t predict the future for myself, let alone anybody else. But I can say, and this is gonna sound very weird, I think. But if you’re going to have a child on the spectrum, this is probably the best time ever to have a child on the spectrum. You know, today, we are so much more knowledgeable and enlightened and capable in supporting people to individually determined lives.
Gene
So I want to roll back a little bit and understand a little bit about your journey, Peter. How did you become involved with autism?
Peter
Completely by accident. That’s how I got involved. I was a junior Psychology major at Rutgers University. And in your junior year, you got to take what they called “Fieldwork Courses.” We theoretically worked one day a week in some aspect of psychology.
My dad worked one day a week at the Douglas Developmental Disability Center, which was an on campus school for kids with autism. I didn’t know what autism was. I sort of joke about it, but I walked into the classroom that day, with six adolescents with autism and never walked out. Honestly, I became fascinated with autism, that mysterious “disorder” and all that stuff. But then I just liked these kids, and then I became fascinated with what they really could do if you gave them a choice, if you gave them a chance. And that’s what’s kept me going for 40 years- is the potential of everybody on the spectrum to do more.
Gene
How are these kids, thinking back 40 years ago, how were they different from the other kids? And what about them stood out to you to make them interesting? Or seemed like they were worth your time, and as it turns out your whole life, right?
Peter
Yeah, pretty much. Back in 1980, if you had a diagnosis of autism and you’re an adolescent, you were a pretty involved individual. Like you had a lot of behavior challenges, very, very few social skills, a lot of repetitive behavior, insistence on sameness. Today, those are still hallmarks of autism but within each of those, there’s still this diversity. So some kids have a lot of problem behaviors, some have none. Some kids have severe social deficits, some have only minor social deficits. You know, Stephen Shore, who’s an adult on the spectrum, he’s a professor at Hofstra, one time said, “If you met one person with autism, you’ve met one person with autism.” That’s because everybody is so different, everybody is so unique. To try and quantify that experience across everybody, I think is an impossible task.
Gene
You sometimes hear that people that have autism as a diagnosis also have very high IQs and they’re brilliant, they just lack social. Could you elaborate a little bit on that?
Peter
You know, it’s as much a mythology as it is a truth. Every student that I work with, no matter where they are on the spectrum, is smarter than all that their test scores say. You know, test scores, I consider the worst the student can do under the worst possible circumstances. They’re not the best, they’re not maximals, they’re not the worst.
So while there are people out there who are brilliant, there’s nothing about having an IQ of 240, that would mean you wouldn’t also have an autism spectrum disorder label. They’re not mutually exclusive. There are a bunch of kids out there that test out as more intellectually challenged, but also, when motivated, can do pretty amazing things. It’s just, my job is to try and find the motivation to do those pretty amazing things.
Gene
So I want to talk a little bit about you, the executive director at the EPIC programs. What is that?
Peter
We are a small program in Paramus, New Jersey. We have a school which is based on polite behavior analysis. For 34 students with autism, ages… well we’re licensed for 3 to 21. We have an adult program that should be opening in September. We have a foundation and we have other little tiny things that go on. So we really try to cover a lot of aspects of life with autism.
Gene
And this is again on that two and three scale that we talked about earlier, right? And so for someone who’s diagnosed on the two scale, let’s just say for purposes of discussion, and I realize that’s still a range, even though it’s a number, it seems quantified but there’s still quite a range, I would imagine within the two, right? What does life look like, independently for that individual, usually?
Peter
The trick is – well, not the trick. What we do that I think is different from other schools or programs is, with even our youngest learners we focus on adulthood. One of our sort of mantras is, “Adulthood begins in preschool.” And if you look at typical kids, that’s what happens. You know, they pick up a lot of skills along the way, just because they can. They learn a lot of things just around the house from mom and dad, right? Kids on the spectrum tend to need to be taught those things. They don’t just pick them up on the fly. But those are really important skills. Generally far more important than “Can you name all 50 states?”.
So what we try to do is focus on those skills that are going to make a difference in his or her life, farther down the road. And with little kids, like we’re still doing academics, and we may still do academics with some of these older students. But there are also academics in a way that they’re going to use them. Even our younger students have some community based instruction, because –
Gene
What does that mean? Community based instruction?
Peter
It’s teaching outside the classroom. So we should be successful in our classrooms, we should be, like we control every variable. We have a lot of resources. We have dedicated parents, dedicated teachers, cool kids. We should be successful. I think the only true measure of our success is how well our students do outside of the classroom. So even for seven year olds, they’re going to 7/11, one day a week to buy a snack. So they’re learning how to navigate because you know what, typical nine year olds go to the 7/11 with mom and dad and buy a snack for themselves.
Gene
So I like the fact that you’re working with even preschool kids to teach them and visualize themselves living a life. They must understand that they’re, “different?’
Peter
Some of the students I work with do, some of the students don’t. I also think some of the students I work with just don’t care. Like they’re kind of happy with who they are, which is really a gift. Like, they’re not worrying about comparing themselves to this other kid. They just want to be themselves.
Gene
And they don’t do that because they have autism, or that’s just their nature?
Peter
I think it’s some combination of both. I think it’s autism and their nature, that they’re just very comfortable in their own skin.
Gene
So it’s interesting that you say that, Peter, because you could measure success with IQ. You could measure it with annual income, there’s a lot of different kinds of metrics you could use to determine success. But the word you used, it’s a word I love, Peter, and that’s happiness. And so, even our Founding Fathers put life, liberty and the pursuit of happiness. So what does happiness look like to an adult living with autism?
Peter
You know, in many ways, it’s the same as happiness for anybody. Like, are you doing things that you like doing? Do you have people in your life that care about you, and that you care about? Like, some of the research on ‘quality of life and adults with autism’ looks at employment as a metric of a positive quality of life. But the fact is, if you’re at a job that sucks, that doesn’t improve your quality of life. The goal is to find jobs for people that they want to do, that they’d like to do, that they feel valued at, that they’re competent at. It’s not just having a job, it’s having the right job. And those are the things that when you put them all together, you know, form the basis of happiness.
Gene
So you said that at your school, you start working with children as young as the age of three, that’s very young. As parents who are living across the country, what should they look for in terms of a school like yours?
Peter
Parents should look for programs that have a high teacher to student ratio; we’re a one to one program.
So for every student, there’s an instructor or teacher. I’m a behavior analyst. So I tell parents to look for a good behavior analytic program. And not one that says, “Oh, we do ABA for an hour a day.” It’s like, “No, you either do it or you don’t do it.” You know, nothing you can put into like a little box for an hour.
Look at staff turnover, it’s a problem for every program out there, including my own. But if there’s an awful lot of staff turnover, maybe there’s a reason why, maybe that’s not the program you want your son or daughter in. And ask other parents. Parents are really smart, you know. So get in touch with other parents who are in a particular school and just ask them, “What do they like about it? What don’t they like about it?” They’ll tell you. And they’re probably the best judge for another parent about what the program is really like.
Gene
What about resources that you would recommend to parents who are starting this journey?
Peter
Read a lot, but double check everything on the internet, I would say, because there’s a lot of misinformation out there. There’s a great group that I’ve been involved with going on, I think 17 years now. The organization for autism research, they have a lot of free resources for people websites, www.researchautism.org.
Network with people. Don’t try and do this alone. Talk to other people. There are a lot of people out there who are willing to help, who are willing to lend a hand, but you got to reach out. And also I think the biggest challenge that we all face is, teaching the rest of the world that people with autism are pretty cool people. Because they still see it, the rest of the world still sees it as a significant mysterious disorder. No, it’s just, he has autism, he’s still a cool kid. He’s got a sense of humor. He likes who he likes. He doesn’t like some people. You know, if you really want to do something, you have to ask him nicely, like don’t use a harsh tone because he doesn’t like that. And once you learn all the ins and outs of this kid, you realize that there’s something important there. I tell new staff all the time that, if one of the students in our school likes you, he or she just likes you. They’re not after your hot sister, they just like you. And there’s something honest about that. There’s something genuine about that. And I think sometimes we don’t think of those things when we talk about people on the spectrum. But people with disabilities are people capable of having their own dreams and fulfilling their own dreams. And sometimes they just needed a ramp to be able to do it. Sometimes they just need a talker to be able to do it. How can I help you achieve your goals? That’s the thing.
Gene
That’s a good mantra. How can I help you achieve your goals? That’s a good mantra to live by, right? Peter, it sure has been nice getting to know you and to hear more about your work with these kids and how well they’re doing. You said you’ve been doing it 40 years. So I can’t imagine how old the oldest living person is that you’ve worked with or has touched your life. Do you have any idea?
Peter
As far as I know, the person who was first diagnosed with autism back in 1943, by this guy, Leo Kanner, is still alive and lives in Georgia. And there are movies, documentaries out, based on the book In a Different Key that he’s kind of at the center of. So when it’s available, people really should check that out.
Gene
It sounds interesting. Hey, I appreciate you spending so much time with us today and sharing your story and giving us some insights into the world of an adult living with autism. Thank you so much.
Peter
It’s been my pleasure. Thank you very much. Bye, bye.
Gene
That was Peter Gerhart, executive producer at EPIC programs in New Jersey, a school for people with autism. Coming up next on An Introduction to Autism, you’re going to love meeting 20 year old Lucas and his mom, Carolyn. Now Lucas was diagnosed with autism at a very young age, and he’s rocking it today. I love this family and I think you will too. Now if you want to stay in touch with best practices to give your child their fullest life, subscribe to the podcast. You’ll also get great resources in the show notes and at www.tpathways.org. Until next time, I’m Gene Gates.