383 – Peter Gerhardt of Rich Hill Park, NJ ED at Epic Schools, Author, Autism Expert & Disability Advocate – Part 2

Transcript:

Tom Couch: Special thanks to Amgen for sponsoring the Special Fathers Network Dad to Dad Podcast. Committed to unlocking the potential of biology for patients suffering from serious illnesses by discovering, developing, manufacturing and delivering innovative human therapeutics. Discover more about Amgen’s mission at Amgen.com.

Peter Gerhardt: By the time a kid on the spectrum turns 18, his parents have read enough to have a nursing degree, a law degree, an occupational therapy license, a speech and language license, like, because they’re getting all the information they can.

Tom Couch: That’s our guest this week, Peter Gerhardt. An internationally recognized and outspoken advocate for the disability community. Peter is the executive director of the EPIC School in Paramus, New Jersey, preparing individuals with autism to meet their full potential. This was a lengthy conversation, so we’re presenting it to you in two parts. This is part two. Now here’s the founder of the Special Fathers Network and host of the Dad to Dad Podcast, David Hirsch.

David Hirsch: Hi, I’m David Hirsch, host of the Special Fathers Network Dad to Dad Podcast. One brief message. The Special Fathers Network Mastermind Group experience is the most comprehensive program the 21st Century Dads foundation offers Dads raising children with special needs, meet virtually on a weekly basis and form meaningful relationships while sharing weekly wins, discussing books and sharing heartfelt challenges. One of the highlights of the year is attending the in-person weekend retreat scheduled this year from September 5th through the 7th. As you think about the year ahead, I invite you to join one of the existing or soon to be formed SFN Mastermind groups and join a group of like-minded dads to become the best version of yourself. It might just transform your life as it has done for so many others. For more information, please see the show notes or simply go to 21stCenturyDads.org.

Tom Couch: Now let’s hear the conclusion of this conversation between Peter Gerhardt and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Peter Gerhardt of Rich Hill Park, New Jersey who is Executive Director at EPIC Schools located in Paramus, New Jersey, author of dozens of publications and books, and internationally recognized and outspoken advocate for the disability community. Peter, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Peter Gerhardt: I am thrilled to be here, David, thank you for asking me.

David Hirsch: I put together a handful of questions, in no particular order of importance, and EPIC Inclusive Communities recently launched an adult day program. What are the goals of this initiative and how does it address the needs of autistic adults post graduation?

Peter Gerhardt: It meets the needs of adults because we really want to focus on independence and happiness. I think happiness is a vastly underrated quality in today’s world. Oftentimes like I’ll be at a conference and I’ll be speaking and you know, I’ll bring up the fact that if you ask any parent of any kid, what do you want for your son or daughter when they grow up? 99.9 times, you know, it’s, I want them to be happy. Yeah, that’s the big thing. But then I ask how many of you have ever written an instructional goal to teach happiness to your students? And If I have 100 people in the audience, maybe one person raises their hand so it shifts completely. Just the opposite. So we focus a lot on what is it that actually makes you happy? Is it having a certain music on in the background? Is it that you eat lunch after everybody else does? Because you know what, the crowds really sort of bug you so you don’t want to be sitting with everybody else. Do you like having a whole lot of verbal praise? Like one of my adults loves verbal praise throughout the day. I have another adult who just doesn’t, you know, it doesn’t register with. So that wouldn’t be something that we’re looking at. We do a lot with choice making, like having people be able to make their own choices because that’s essential to happiness. But we also then look at productivity and in the community, like we’re starting to look at jobs and how do we promote employment competence in the community, how do we capitalize on all this educational effort that went 18 years before we met you so that it makes sense for what you can do now, if that made any sense.

David Hirsch: Absolutely, yeah. I think that this, creating a handbook or guidelines, a framework for what does it mean to be happy and creating happiness is, it seems like a no brainer. It’s not something that is a one size fits all either. So I think what I heard you saying is that you have to identify what is it that

00:05:00

David Hirsch: makes people happy and then try to move in that direction or identify the attributes that are required.

Peter Gerhardt: Right. And if you’re happy, and we do this at the school too, you learn better. You know, you’re more engaged with your peers, you’re an active participant in your life. If you’re depressed or angry or sullen or just sad, you’re really not a good learner then. So we work very hard to bring happiness into each of our students lives.

David Hirsch: I love it. As the founding chair of the Scientific Council for the Organizations for Autism Research, how do you see the role of research in shaping effective ethical practices for autistic individuals.

Peter Gerhardt: I’ve been working with or for 20 something years now. you said the founding chair. It really started with three guys in a bar in Baltimore.

David Hirsch: This is not the beginning of a joke. I’m hoping you’re.

Peter Gerhardt: One was a rabbi, one was a priest. But it really was a lot of the research at the time was looking at etiology, cause and cure research. Like, let’s find the cure for autism. Let’s find the cause, let’s. And a group of people, group of parents, parents of older kids got together and said, you know what, Even if they find the cure, it’s not going to help my kid. So let’s look at raising money and fund research that’s intervention research, that teaches skills, that gives people new competencies, that gives us new understanding of what it’s like to be a person on the spectrum. And we started out and funded two grants, $25,000 each in our first year. Right now we’re in the middle of our applied research competition where we had over 200 applicants for maybe 10 awards.

David Hirsch: Wow.

Peter Gerhardt: But because especially in the political climate, like the research, money is getting cut, so we might be the only game in town for some of these things. But what’s really nice is when you see a research project come through and then it actually leads to changes in curriculum, to changes in lifestyle, and, you know, at least one project a year results in something like that. And even if it’s, like you said, a manual that can be used across different schools and different classrooms. And I, think research is so important, and I think the next big area, excuse me, of applied research, what we look at is going to be virtual reality, immersive reality.

David Hirsch: So what are the most significant challenges you see in the field today and what gives you hope for the future of services for individuals with autism?

Peter Gerhardt: Everything gives me hope. I just think there’s so much potential for our field to make such a huge difference. Yes. Do I get depressed about certain aspects. And right now with talks of cuts to Medicaid and all these other things, it’s a little bit of a frightening time. But I still have hope for the best of the best of the best for all the people that we, we work with. Yeah. I just think we know so much more today. And I also know that we’re. The field is so broad now that the idea of, like, working collaboratively with very able people on the spectrum. So one of their whole things is nothing about us, without us. If we’re going to do research in autism, we really should Be consulting with people with autism and find out if this is the right way to go about this. I think that that is an incredibly important change in the field, this collaborative effort with people on the spectrum. We talk not just about consent, but assent. What is it about this instructional program that the students would want to learn? And how do we know if he’s interested in learning it? And so can he or she give assent? And everybody can. We just have to figure out how they’re doing it and what it means. I think 20 years ago it’d be like, oh, well, he’s just trying to escape this task. That’s why he’s having a meltdown where today we’re saying he’s just trying to escape this task. Maybe we shouldn’t be teaching this task. You know, it took us 20 years to get there. You know, Ah, you would have thought, you know, and the community, like, I live in, you know, North Jersey, Ridgefield Park. I work in a town called Paramus. We joke sometimes when it’s like, Autism Awareness Month. And now it’s Autism Acceptance, but there is not a more aware area of the country than here. Like, I don’t have to worry about anything with my students as long as they’re, like, not dangerous or sexually explicit or anything like that. Because people know autism and they accept it,

00:10:00

Peter Gerhardt: you know, it’s not a big deal. Everybody in this area knows somebody who knows somebody with autism. So the community has come up to be so supportive. And that, I think, was the biggest challenge was to change the rest of the world to help people on the spectrum and not just leave it to the professionals, but leave it to the cashiers and the clerks and the booksellers and the, you know, let them do some of this, because that’s how it’s supposed to work. That’s how the world’s supposed to work.

David Hirsch: Yeah. Well, about a year ago last summer, the 21st Century Dads Foundation Special Fathers Network hosted a panel discussion. We had well over 200 people sign up for this virtual experience. And the topic of the conversation was learning about autism from autistic adults. We had, three, I think, very well recognized autistic individuals. Temple Grandin, Eric Enlik, and Sam Farmer, who’ve also all done interviews for the Special Fathers Network Dad to Dad podcast and have been very generous with their time.

Peter Gerhardt: Okay.

David Hirsch: And it was a very enlightening conversation. And whether it’s accurate or not, what I’m coming to learn, Peter, is that professionals have a lot of information, whether they’re academics or medical professionals, and they’re a great resource, but they’re approaching this field of work or study not from a lived experience like an autistic individual can articulate. And I’m wondering if you can shed any further light on the importance of parents reaching out to autistic individuals to be of assistance to their young sons and daughters.

Peter Gerhardt: You know, I think it’s so important. One of the things that I teach all my staff, because everybody’s trained as problem solvers, you know, so we go into situations and mom and dad says, oh, well, you know, he’s still wetting the bed and this and that, as opposed to saying, right away, we jump in and try and fix it. We give a solution, as opposed to just listening for a bit and saying, I can see how that might be really stressful for you. How do you think we should go about fixing this? Let me get your opinion. To become more collaborative, even with families. But when you can bring in that person on the spectrum for their particular point of view on the scientific council of or. One of our researchers is on the spectrum, and she does a lot of research on suicidality and how people on the spectrum have a higher rate of suicidality. Like, because they don’t get the services they need, they don’t get the supports they need, they feel left alone. They feel. Especially if they’re in this very able group, because people look at them and they say, well, you have a college degree. Like, you don’t have a disability. Like, what is your. Like, you’re just lazy. You’re just, you know, uncaring. You’re just rude. You’re just as opposed to saying, no, I have a neurological disorder that makes it hard for me to understand social nuance, you dope. So the more we can involve members of the community, no matter where they are in the community, I think the better off we will be in doing this. They’re the ones. I work for them. They don’t work for me. I work for them. And like I said, my job is to put myself out of a job. And I only can do that if I listen to my students, if I listen to my adults, if I listen to my friends on the spectrum, and my colleagues on the spectrum, I can’t do it if I don’t continue to get better at listening, to our autistic constituents.

David Hirsch: Yeah, well, thank you for, endorsing that.

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick Message please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey will receive a great dad coin. Thank you. Now back to the conversation.

David Hirsch: I’d like to switch gears and talk about, some of your publications. you’ve, authored, co-authored dozens and dozens of publications, including a number of books. And one of the books that caught my attention is entitled Make it Meaningful: Creating Programs that Matter into Adulthood for Learners with Autism and Related Disorders, which, was published in 2024. And I’m wondering if you can just provide

00:15:00

David Hirsch: a brief overview of that publication.

Peter Gerhardt: That was really a labor of, of love. Dr. Shana Barry, who’s my co author on it. We talk about that. It was 24 months of writing, six months of editing, and 40 years of my life went into that book. And it was really Shana’s idea that, you know, I would go to conferences and I would talk about this stuff and leave. And people weren’t left with like the tools to do this. So she really pushed me. She was a doctoral student of mine who now has her doctorate and who just became a baby. So I just became a baby, just had a baby. So congrats. She kept saying, like, we want to preserve the legacy. We want like, like you have 40 years of experience that you have to like put down somewhere so people can benefit from it. And she came up with the title actually make it meaningful because that’s really what it’s all about. And I taught so much dumb stuff over my career. I once taught a 15 year old, 15 year old how to recreational color. So I would like do a, draw a circle and I give him a crayon and he would color in this. Like he is 15, you know. Now if he has really good art instincts, that’s that’s one thing, but otherwise he’s never going to go, oh man, I want to color today. You know. And so what? Again, I wasted his time teaching something that had no meaning in his life whatsoever. You know, just because we can teach something doesn’t mean we should teach something. And I think in my own life, you know, I’m theoretically smart enough that I could have been an accountant, but instead I ended up in this weird, funky little field where I get to do things in a very, very different way and still be an academic, you know, but each of us develops into their own thing in their own way. Like that’s what really making meaningful is about. It’s like, how do we help people find themselves, find their own life, find their own way, and give them the skills that they need across the spectrum so that they’re going to be able to live that life as happily, as safely and as productively as possible.

David Hirsch: So is that book directed at practitioners or parents or both?

Peter Gerhardt: It’s directed at both, actually. You know, the, the line between parent and professionals, especially beyond like the age of like kids are like five or six. Parents are a really well read group, like know they know their stuff. So to say that like, well, you know, that’s just apparent is completely inaccurate. You know, somebody once told me, and I don’t know if it’s true, but I would bet it is true, that by the time a, kid on the spectrum turns 18, his parents have read enough to have a nursing degree, a law degree, an occupational therapy license, a speech and language license, like, because they’re getting all the information they can. so that line between, that mystical line between a mythical line between professional and parent has definitely weakened, which I think is a good thing too.

David Hirsch: Yeah, well, thanks for emphasizing that. Another book that caught my attention is the Handbook of Quality of Life for Individuals with Autism Spectrum Disorder, which came out in 2022. And I’m wondering if you can provide a brief overview of that publication.

Peter Gerhardt: It’s an edited book that I did with a couple colleagues out of Autism Partnership foundation out in California. And the idea being that quality of life should be this overarching goal for everything we do, whether we’re talking about, quite honestly about teaching math and reading. I like to read, but I like to read what I’d like to read when I like to read, for as long as I like to read. You giving me something that you want me to read isn’t going to like, really make me happy. It’s like looking at across the board, whether it’s quality of life through academic instruction, through, adaptive behavioral instruction, through social skills, through the development of more competent language. I have a chapter in there about like, curricular demands, and I have a chapter in there about sexuality and quality of life. And that should be all that we talk about really in my field, which is behavior analysis, we call it social validity, but it’s really quality of life. It’s like, will this improve the quality of his or her life if he or she acquires this particular skill? And if the answer is maybe that’s okay. If the answer is yes, that’s a definite go. If

00:20:00

Peter Gerhardt: the answer is no, then why should I teach it?

David Hirsch: I love it. Thank you. There are a number of other publications, dozens and dozens of them. One that caught my attention again is Transition to Adulthood for Adolescents and Young Adults with Autism. Can we improve outcomes? What was that paper about?

Peter Gerhardt: You know, it’s attributed to Einstein, but I’m sure it’s not. The definition of insanity is doing the same thing over and over again and expecting different results. That. That’s pretty much what we do in our field. And the field has changed dramatically in terms of early intervention. And we know so much more about early intervention than we ever did. And in terms of developing language, we know more than we ever did did. And in terms of teaching social competencies, we know so much more. And then we get to adolescence and transition and we do the same old stuff that we’ve always done and expect there to be a different outcome. And it doesn’t work. Like, you have to change things up and maybe it doesn’t work, so then we change it again. You know, Skinner is quoted saying, a mistake may not always be the failure. It may simply be the best one can do. What maybe the best one can do under the circumstances, provided the real mistake is to stop trying. And I think that that’s what that paper is about, that we need to look at where we are and change and grow and try new things. And if it doesn’t work, we try other new things. And if they don’t work, we try other new things. Corporations, because what we’re doing right now isn’t resulting in the most glamorous of outcomes. Just so I could use the word glamorous. That’s all.

David Hirsch: Thank you. So there’s workshops that you’ve put on for years and decades entitled Bridges to Adulthood for learners with ASD. It’s a seven hour workshop on behavior analytics. Could you describe for our listeners what that’s about?

Peter Gerhardt: Yeah, it really was designed to sort of take both professionals and parents through the lifespan of a person, but also across the multiple dimensions of transition. So there’s a section on unemployment and a section on social skills and a session on inclusion in early elementary school and how do you become more socially included? But it followed this progression across the lifespan of each individual and how the curriculum and our interactions with the individual has to change in order to actually be as supportive and proactive as possible.

David Hirsch: Is that something that’s open to the public or how would somebody take advantage of that workshop?

Peter Gerhardt: It’s probably online somewhere. Quite honestly, I haven’t done it in a while just because I’m 65 now and doing a seven hour workshop is a bit of, an effort, much more effort than I care to admit, quite honestly.

David Hirsch: We’re not as young as we used to be, Peter.

Peter Gerhardt: No, that’s the problem.

David Hirsch: There’s a movie that caught my attention entitled In a Different Key and I’m wondering if you could describe for our listening audience what that movie is about and what role you played.

Peter Gerhardt: Friends of mine, Karen Zucker and John Donvan. Karen is the parent of a young adult on the spectrum. John was with ABC News, I think they were both with ABC News. That’s how they met. But they wrote Life in A Different Key, A History of Autism, which was shortlisted for the Pulitzer, I guess probably four years ago, five years ago now. But then they decided to turn it into a movie and so got some backing and got a producer and got a director and Wynton Marsalis did the soundtrack for it. And what’s really fascinating is they went back and they found the first person ever diagnosed with autism. He was living in a small town in Georgia where literally everybody knew him. And in 1943 he was one of Leo Connors 11 kids with autism that he identified. He lives independently, he has some help. But it’s such a great story, just about what’s possible when the community comes together, you know, and supports this person because he’s autistic. Like he is. He, he’s very able, but he’s also very autistic. So that’s one of the things I like most about the movie is, is it’s not so competent that you think, well, maybe he’s not really autistic or not. It’s like, no, he’s really autistic. But I recommend to anybody if they can catch a screening of it to please to. To go. I was just, I. My part is that they asked me a couple of questions sort of like this, but on screen, you know, and I answered a couple of questions for him. That’s all. It really is their, their baby, so. But it’s a great movie.

David Hirsch: Did you have to get a Screen Actors

00:25:00

David Hirsch: Guild card to be in the movie?

Peter Gerhardt: No, I didn’t. Damn. I was hoping, you know, that would have been my next career.

David Hirsch: Then there you go. So, you’ve been involved on a lot of national advisory boards, including the Autism Society of America, the Organization of Autism Research, the one we’ve been talking about. Oar Rethink Autism Cambridge center for Behavioral Studies, Secondary Education for Students with Autism Spectrum Disorder. Is there any one of these that you know, you’re particularly proud of or that you’ve been more involved with than the others?

Peter Gerhardt: Like, we went from, like I said, a bar in Baltimore to this year, we’ll have funded over $6 million in the research, and it’s like $30,000 a grant at a time. We only recently went up to 40,000. So that I’m actually very proud of. My association with the Cambridge Center I’m very proud of because that’s a behavioral analytic organization with some of the finest minds in the field who are part of it. Although I don’t put myself in that category. It’s nice to be able to hang out with that category. So that’s probably my other favorite one would be the Cambridge Center.

David Hirsch: Yeah. Well, thanks for sharing. I’ll be sure to include information about each of those organizations in the show. Notes for those that are more curious.

Peter Gerhardt: Thank you.

David Hirsch: So I’m thinking about advice now and I’m wondering, specifically what advice would you offer parents, perhaps dads who have a child or children on the spectrum?

Peter Gerhardt: You know what? I’m going to first go to Rocky Horror Picture show and say, and say, don’t dream it. Be it like whatever you can envision for your son or daughter, you can make it happen. Now. There’s going to be slips and falls and, and missteps and, and, and errors, but just keep pushing forward and keep your eyes on the prize. And you know what, if you do that, even if you don’t reach your goal, you’re going to end up at a better place than you would have. anyway, fathers are an interesting group sometimes. Historically, like moms have been the major agent of change in autism families. But over the past decade, more and more fathers are getting involved. And I’m seeing more and more fathers at conferences and they’re very involved. And it’s really important considering that like three out of four kids on the spectrum are male. So they need that, that male role model, that need that male companionship. They need that male ego to help them along sometimes. And I think it’s really important. You know, autism is a stressor and it stresses families. And some families can’t take the stress. most families can, but it’s still difficult. But it’s a product of working together. You know, the mother, the father, the other kids, you know, the neighbors. Don’t isolate, don’t self isolate, you know, stay part of this big community that you live in. You Know, visit your church or your temple or whatever your house of worship is and stay involved. Like, don’t self isolate. That’s the worst thing you can do. But just one step in front of the other, that’s all.

David Hirsch: You know, if I could paraphrase, at least part of what you’ve said is that, you need to be willing to engage, take some risk. Right. Don’t be afraid to fail.

Peter Gerhardt: Yep.

David Hirsch: And, by all means, don’t isolate. Right. for whatever rational reason that it might seem logical to isolate. Right. I don’t want to be embarrassed or I don’t want to cause any disruption or however, you know, our minds work. You know, I think that we have to err on the side of engaging and being part of the general population. And, you know, there’s something to be learned all the way around. And, you know, it’s easy to talk about. I think it’s more difficult to implement.

Peter Gerhardt: Yeah, no, I agree. I agree.

David Hirsch: It’s like a muscle. You have to exercise that muscle, you get stronger and stronger. Becomes sort of second nature after a while.

Peter Gerhardt: You get used to it.

David Hirsch: I don’t know if it’s muscle memory, but I think there’s something to it.

Peter Gerhardt: Yeah.

David Hirsch: Let’s give a special shout out to Tim Kane, one of our Special Fathers Network mentor fathers who was featured in episode number 368 of the Dad to Dad Podcast for helping connect us now.

Peter Gerhardt: Tim is a great guy. I love him to death.

David Hirsch: If somebody wants to learn more about your books, hiring you as a speaker or to contact you, what’s the best way to do so?

Peter Gerhardt: Just go to our website and there’s a contact button on it and I’ll get the information then.

David Hirsch: Okay, I’ll be sure to include that. I have your email address if that’s okay to include as well.

Peter Gerhardt: Oh, yeah, please.

David Hirsch: Peter, thank you for your time and many insights. As a reminder, Peter is just one of the individuals who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from

00:30:00

David Hirsch: a mentor father with a similar situation to your own, please go to 21stCenturyDads.org. Thank you for listening to the latest episode of the Special Fathers Network Data dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads foundation is a 501c3 not for profit organization, which means we need your help to keep our content free. To all concerned, would you please consider making a tax actable contribution? I would really appreciate your support. Peter, thanks again.

Peter Gerhardt: Thank you very much. It was my pleasure.

Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stCenturydads.org.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to david@21stCenturyDads.org.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Thanks again to Amgen. Committed to unlocking the potential of biology for patients suffering from serious illnesses by discovering, developing, manufacturing, and delivering innovative human therapeutics. Discover more about Amgen’s mission at Amgen.com.

00:31:45