389 – Dr. Robert Naseef of Philadelphia, PA, Psychologist, Author, Father Of Four Including One With Autism

Transcript:

Robert Naseef: I’ve been taking care of siblings ever since I can remember. And in a sense, I was helping overwhelmed parents my whole childhood. I grow up, I have an autistic son, and I wind up, helping the overwhelmed parents of kids with autism and other disabilities in their lives because I really know about overwhelmed parents.

Tom Couch: That’s our guest this week, Robert Naseef, a clinical psychologist, keynote speaker, author and father of four, including son Tariq, who’s autistic. Robert tells the story of his journey to help dads of kids with special needs on this Special Fathers Network Dad to Dad Podcast. Now say hello to 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 in Chicago. I invite you to attend the Special Fathers Network Mastermind group retreat. You’ll meet some extraordinary dads, exchange a lot of best practices, and recharge your fatherhood battery for the journey ahead. It might just transform your life like 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 this conversation between Robert Naseef and David Hirsch.

David Hirsch: Thrilled to be talking today with Dr. Robert Naseef of Philadelphia, Pennsylvania. A seasoned professional, psychologist, keynote speaker, author, father of four, including a son with autism. Robert, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Robert Naseef: My honor and privilege to be here.

David Hirsch: With you, David, you and Your wife Cindy Ariel have been married for 34 years. You and Cindy have two daughters, Zoe, 32, and Kara, 33. You’re also the father of Antonette, 43, and Tariq, 45, who is autistic. Let’s start with some background. Where did you grow up? Tell me something about your family.

Robert Naseef: I was born in a row house neighborhood of Philadelphia and actually in my aunt’s home. My dad, a World War II vet, was driving a taxicab in the daytime and going to college at night. Very humble beginnings. We all lived in one room in my aunt’s house. She was my dad’s sister and his caretaker because both of his parents Died when he was 6. So a big part of my story is growing up with a father, learning how to be a father, missing his father, like that whole scene. And it left a deep imprint on me when, and I know he did his best. That’s me, like in the fourth quarter of life as we were talking about. I know he did his best, but, at times it was really hard being his son because any disagreement, any, you know, tension was always met by, at least you have a father. At least you have a father. I didn’t. So you should just be grateful. And that really wasn’t a good way to have a conversation. But, you know, ultimately I think we got through it, but we had some tough, some really tough, arguments over time.

David Hirsch: You neglected to mention that, you have more than one or two siblings.

Robert Naseef: Oh, I’m the oldest. Oh, this is an important piece related to everything. I’m the oldest of eight kids and I’ve been taking care of siblings ever since I can remember. And in a sense, I was taking care of or helping overwhelmed parents my whole childhood. And I grow up, I have an autistic son, and I wind up, helping the overwhelmed parents of kids with autism and other disabilities in their lives because I really know about overwhelmed parents.

David Hirsch: Yeah, well, it’s your lived experience. I didn’t want to overlook the fact

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David Hirsch: that you’re the oldest of eight. You mentioned your dad was an orphan. He’s a World War II veteran. I think you mentioned in a previous conversation, he himself, suffered from what we know today as PTSD. So that obviously made things a little bit more challenging. But he went on to have a career. What was his career?

Robert Naseef: He was an accountant, and later in his life, a businessman. He had small businesses. He always wanted to be able to leave us with some kind of financial legacy. But he was also a gambler. I mean, my inheritance was $1,200, but I guess my real inheritance was I had an engaged father. And some of this I appreciated later. Like, he was the coach of my little league team. I would have never got to play if my dad wasn’t coaching. I mean, he was one of the more, forward thinking fathers that said, every kid has to get in the game. I mean, in the 50s, that was like, revolutionary. In my very last little league game, I caught my first fly ball and I, didn’t even know it was in my glove. I was so overjoyed. But I would have never had that opportunity without my dad. I was a long distance runner and track I was the co captain of my team. So my father’s belief in me, that I could achieve things actually drove me. I mean, fast forward. When I had a kid diagnosed with autism, I eventually wanted to tell this story. I wanted it written down. I wanted to. I wanted to express the depth of my feelings and have it in print. And I was driven for years to do that. Having that unwritten story drove me.

David Hirsch: Yeah. Well, thanks for sharing. I can relate to your baseball story about right field. not so much from being the right fielder, but one of my passions is baseball. I played baseball through high school. Certainly wasn’t good enough to go to college and play baseball. But, you know, as a little guy, a lot of people dream about being in the major leagues. And, that understanding of, passion for baseball led to coaching. I think it was 13, mostly travel baseball teams for my M2 boys. I was that type of coach like your dad. no matter what the talent level was, everybody has an opportunity to play, right? No matter what the situation is. And, you know, it wasn’t like everybody gets the same amount of innings or same amount of at bats, but. But, you know, if they were at the practices and they were consistent about their participation, they earned their spot on the team and they. They should play, right? And obviously you want to win. It’s not all about winning, but, you know, if you can set the team up for success, which means not only being successful from scoring runs and preventing the other team from scoring runs, but, you know, making sure that everybody felt like, they participated. So I’m thinking about your dad. You mentioned a couple things about him. I’m wondering if there’s any other important lessons learned or takeaways that, you’d like to share.

Robert Naseef: Well, he never told me he was proud of me, and I was always trying to get that out of him. And, you know, after he died, my mom told me, oh, of course he was proud of you. And my wife Cindy told me, oh, yeah, he told me once. But the takeaway lesson is to let your kids know you’re proud of them. Like, it’s so important. I mean, I was always striving for that. Like, if I got a 98, he’d say, like, why couldn’t you have just got a perfect score? Or, you know, like, there was always things like that. I mean, I’d go to the statewide science fair and I didn’t know he even noticed that. But near death, he remembered the name of my project, which actually warmed my heart at that point, you know, that was my dad. But I learned how important that is to give praise where it fits, where a kid has done their best, whatever that was.

David Hirsch: Yeah. Very insightful. Thank you. So you mentioned that your dad was an orphan, so that he didn’t really know his dad, growing up. That was on your dad’s side of the family. I’m wondering if your other grandfather, your maternal grandfather, played an influential role.

Robert Naseef: My grandpop was really special in my life, you know, and it was with, you know, my mom’s parents. I felt like really unconditional love from them. And I know all my siblings did as well. My grandpa, I really looked up to him. He was a leader in his trade union, which I became as a, social service worker in Philadelphia. And

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Robert Naseef: he didn’t read and write English too well, but he represented his brothers and sisters at grievance hearings, and he helped them understand the union contract. He told me about all these things. I really looked up to him, and I miss him. I miss my dad, too. I would say I’m still in relationship to him.

David Hirsch: Yeah. Well, thanks for sharing. So my recollection was from an educational standpoint. You took 2 degrees from temple University, master’s in education, Psychology of reading, and then, a PhD in psychology and education. And was there some work that you were doing between those two degrees? Where did your career take you?

Robert Naseef: Well, I did my bachelor’s in English, actually. And in between my bachelor’s and my master’s was when I was a social service worker and an activist in the union. And subsequently, I worked in a junior college, and I was in charge of the learning laboratory. And a lot of the students I worked with had, learning disabilities, and some had what I later learned to be Asperger’s syndrome. When my son Tariq is born and he’s not developing normally like I think I’m gonna be like Annie Sullivan was to Helen Keller. I’m gonna be his teacher. And I worked in a literacy program. I could teach illiterate kids from the inner city to read and get their GEDs. Well, I could help my son catch up. I was gonna fix him. I was gonna be his Annie Sullivan. so that’s where everything started coming together for me in terms of what later becomes my mission. To help parents understand their kids and raise them the best they can and grieve their losses, celebrate the kid they actually have who they love as much as life itself. That’s what I’ve seen over and over and over again.

David Hirsch: Yeah, well, what I think you’re talking about is the work, you do as a clinical psychologist in this private practice that you’ve had for more than three decades now.

Robert Naseef: Yes, yes, it’s been in my practice and at conferences and support groups of moms and dads, then specializing in support for fathers more so. But I’ve met a lot of people. I’ve spoken in a lot of cities and several countries, and everywhere, everywhere I’ve set foot. The love that people have for their kids, their desire to be the best parents they can be, is just outstanding. And they relate to me because I’m a fellow traveler.

David Hirsch: Yeah, well, that lived experience gives you an extra level of authenticity. But another clinician, no matter how well educated or, committed they are to their practice, they just don’t have that. And that’s not good or bad. That’s just the reality of the situation. So I think that you bring that authenticity card with you that people can relate to. And I’m sort of curious to know what percentage of your practice is dedicated to or includes, individuals with autism or other developmental delays for that matter.

Robert Naseef: I mean, it varies from time to time. I mean, it used to be mostly all parents and some kids, and now it’s a mixture of autistic adults and parents. And, I also do adult diagnosis. currently we have a lot of people who were missed in childhood, realizing sometimes after they have kids on the spectrum that they have a lot in common. So my practice now is a mixture of autistic teens and adults. I mean, and some of the kids I sat on the floor with are still in my practice as adults with jobs and doing whatever they’re doing. I mean, I’ve sort of learned, starting with kids, what autism looks like through the lifespan from individuals very limited in their abilities, like my son Tariq and others who, you know, go on and go to college and have jobs and yet still struggle to fit into the world as it’s constructed.

David Hirsch: So I’d like to,

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David Hirsch: reflect on your experience from a personal perspective. And I’m sort of curious to know, before Tariq’s birth and separate from the work that you had started to do around that same time, did you have any connection, directly or indirectly, to the disability community?

Robert Naseef: Well, my personal connection was with my cousin Gregory, who’s about, four or five months older than me. And, we were playmates. And at the end of first grade, he didn’t get promoted. And I was asking all the grownups, like, why didn’t Gregory get promoted? And nobody would Tell me. I mean, it turned out years later. I forget how many my grandparents told me, well, he’s slow and he was diagnosed with, mild mental retardation at that time. Now fast forward with the book that you read comes out. He had self diagnosed himself with autism because he’d been, listening to me and talking to people and listening to stuff on the radio and the Internet and he self diagnosed himself and boy, he’s perfect fit. So whenever I had an opportunity to go to Florida, we would spend time together. We both liked to take pictures. And he was really my first connection to the disability world. But I didn’t know it at the time. He was just my cousin and my playmate.

David Hirsch: Got it. So what is Tariq’s diagnosis and how did it come about?

Robert Naseef: Well, his initial, his initial diagnosis was mental retardation. That didn’t explain everything to me. I pushed for another evaluation and he was diagnosed autistic at the center for Autistic Children in Philadelphia. I mean, he was in an early intervention program prior to that, and then he was at the center for Autism until he was almost 9 years old.

David Hirsch: I know it was some 40 plus years ago, but what were some of the fears, if you can remember way back when, that you had coming to grips with that diagnosis?

Robert Naseef: Well, a number of fears. Tariq is black. I wondered how, from his first breath, what experience he would have in the world, who would accept him, who would reject him, who would hurt him, who might kill him. All these thoughts ran through my head. And once his disability really fully emerged, he was always a threat to get out of anywhere. I mean, his pediatric neurologist said he was like Houdini. And I mean, one time I’m at an IEP meeting at his school. everybody thought, he was safe. He was in class, he went to the bathroom and climbed out the bathroom window. Now there was plenty of ground around there. They came and got me. And from years of him getting out and me trying to find him, I kind of know how he goes. I could still run at the time, which I can’t do now. But anyway, I caught him and brought him back. But I always felt like his, his life was in imminent danger, you know, for different reasons. But, eventually, because he got out of everywhere. I mean, he got out of the apartment where Cindy and I were living through the fire escape, because you can’t lock down the fire escape. The refrigerator was padlocked, the door to the apartment was padlocked. But he got out. I found him in the playground about A half a mile away, which was on a bus route, happily swinging, just with such pure innocence. And I thought my heart was going to just burst out of my chest. I mean, I was in a full panic. And that’s not the only time things like that happened. Eventually the only way to keep him safe would have been a residential placement which his child psychiatrist supported. That was Dr. Burt Rutenberg, who was an autism pioneer. And he believed autistic kids could learn. He believed Tariq could learn, but he also knew Tariq couldn’t be safe outside of a residential setting. That was the hardest thing I ever had to do at like 9 years old to pack him up and know he wasn’t going to live with me again. I wept and wept

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Robert Naseef: and I think by then or around that time I started working on my doctorate. And in my dreams he came to me because I didn’t know if I was doing the right thing. He came to me and he told me it was okay. He told me it was okay. I mean, Cindy and I used to sleep on the floor outside his bedroom so that he couldn’t get out of the house without us knowing we were on edge all the time. His mother had partial custody, but I was the main caregiver. So I’ve helped other people on, that kind of a journey. And it’s, I’m one of the few therapists they can talk to who understand it, lived it and can help them with their feelings about it.

David Hirsch: Well, it seems pretty obvious that one of the more difficult decisions you’ve had to make was the residential placement. Right. Because that’s just not a typical way of looking at parenting. Right. You just assume that your kids are going to live with you until whatever age 18-21 or beyond. And I’m wondering if you can shed any light on the decision making process that you and Cindy went through.

Robert Naseef: Well, I mean, part of it was, and Cindy helped me with this a lot, that he would a, be safer, but more importantly be happy by having round the clock care and being able to, to live more freely actually than our lifestyle where, you know, we’re barricading the door with our bodies so that he can’t get out of the house at night. In a residential setting, somebody was on duty by the door and they could get him and they’d take him for a walk. They kept him safe, but he even got out of there a few times. He turned up at the 7/11 a mile away on a busy road eating some chips. Another time he turned up in somebody’s house who didn’t lock their door, and he was running the bathwater. Like, fortunately, the police in the area around the Devereaux campus knew and had been trained to some extent and just safely, you know, got him back to where he belonged. But, I, mean, his ability to get out of place is one of his skills, you know, so to be in a place where someone’s always awake and can help him if he needs a walk or he just needs to be awake was. Was a gift. And actually less restrictive. That’s what Cindy helped me see. He was actually in a less restricted environment than our family home. I can’t put it any other way. That made rational sense to me.

David Hirsch: Yeah, well, thanks for sharing. I’m sort of curious to know what impact Tariq’s situation has had on his siblings, his three sisters, your marriages. Or your extended family, for that matter.

Robert Naseef: It had a negative effect on my first marriage. I mean, being left to make all the decisions, arrange all the care. Like, his mom was kind of paralyzed, and I understand it now, but like other parents, she just had a really hard time with it, and Antonette had a hard time with it. She’s a very artistic kid. I mean, you know, he’d pull her artwork down. He’d kind of destroy it. He was really tough for her to live with. My younger daughters only knew him as a visitor to our home or as visitors to where he was living. So, I mean, they got the good side of this, in a sense of. They got the awareness of, having a family member with a disability without the danger and the disruption that, you know, Antonette lived with. So, by the book you read, Antonette did not want to be mentioned in it because she didn’t want to be known as the sister of an autistic person. She just wanted to

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Robert Naseef: be known as herself. So I certainly honored that.

David Hirsch: Yeah. Well, thank you for sharing any impact on, the extended family. You have a lot of, siblings, no doubt. There’s some cousins, you know, your brother and sister’s children.

Robert Naseef: It’s. It’s hard to say, frankly. You know, people would ask me in my extended family, how’s he doing? But when they would say, how’s he doing? It was more like he had a cold. Did he get over it? Did he change a lot? And it would often just leave me speechless. I wouldn’t know how to explain it except to say, he was the same. He was safe. He’s happy most of the time. I think it sensitized all of them to autism and to people with Disabilities. I mean, they all came to my book signings and, they all have my books on their shelves. One of my cousins was actually a one on one support to him. We had a 20th birthday party for him. She did a great job. One of my nieces, like, when she graduated, either college or I think medical school, she asked for donations to autism charities, in his name. I think everyone was impacted. Some can talk about it, some not. And I don’t think I was so great at talking about it to them. I really don’t. I mean, I was grieving too much for too long.

David Hirsch: Well, you’re right about that in your book, the Grieving Process. We’ll get to 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: You’ve written a couple of books, the first of which came out in 2001, special challenge Parents the Struggles and Rewards of Raising a Child with a Disability. And then the second book, the one that I read, had the opportunity to read is Autism and the Family Caring and Coping Together, which came out in 2013. And I had a lot of takeaways, what I might refer to as pearls of wisdom, that you were just dropping chapter to chapter. And I just wanted to share, a few thoughts before I ask a few pointed questions about the book. I love the photos of you and Tariq, other family members. It really personalized things. It’s one of the most thorough books I’ve read on the topic of autism, written from perspective of a parent or a father in particular. And these particular lines, if I can call them such, really touched me. The first of which, in no particular order, is. I’ve learned that accepting is about opening up and being in the present moment as, an inexperienced. Another is denial buys time to discover the inner strength to a hidden problem. Never thought about that. Another one is sometimes anger leads to isolation because it may seem that no one can possibly understand can relate to that. Another is, in some respects, acceptance is not just a stage, but a way of living mindfully, which I thought was really insightful because people think about the grieving stages and like you just pass through and you don’t go back to that. Another is accepting your pain in yourself leads to enjoying your child. And that awareness is the gateway to love and wholesomeness. I also hadn’t read before, didn’t remember that boys are diagnosed at a rate of 5 to 1 versus girls with autism, which I knew it was a larger percentage, but I wasn’t sure. And then the last that I made a note of, it’s hard for parents to accept their powerlessness over autism. Yet, they do have an influence over their relationship with their child, which I thought was really, really insightful. And you made reference to this yourself earlier about you’re going to fix Tariq, right? You’re going to be able to overcome this diagnosis that he had. And at some point you just have to accept the fact that that’s just not reality. Right. And you can kid yourself or you could continue to go down that path, but it’s not going to lead to positive outcomes. And I

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David Hirsch: know that other parents really, really struggle with that and not to seek professional advice, you know, is part of the challenge that they’re facing. So I’ve prepared a few questions, in anticipation of our conversation. You wrote candidly about your own experience as a father of an autistic son. What was the most emotionally difficult part of the journey to include in the book and why did you feel it was important to share?

Robert Naseef: The hardest part was the residential decision. So just chronologically, the hardback version was actually 1996. And I hadn’t written about the residential decision until the 2001, book that you mentioned.

David Hirsch: So that’s the second edition. The paperback was the second edition.

Robert Naseef: Right, right. I hadn’t processed it enough to write about it at that point in time. I mean he was in a residential setting. But I couldn’t, I couldn’t write about was too raw. But one of the things that happened after the hardback came out was I started to get invited to speak at conferences out in Portland. The director of this program there said, she introduced me and she said I had a foot in both worlds. And it helped me realize, you know, I’m called to do something here. I’m called to talk about some really hard things and to do it well. And the more people I met, the more lives I touched. I almost got I think I got stronger in me to put words to the difficult things. I mean, and when I think about men generally, I think it takes a lot of courage to open up. Actually reminds me of E. Cummings. In my dad’s eulogy at his funeral, I read this poem from E. Cummings. It takes a lot of courage to grow up and be who you really are. And I thought I was getting that courage from loving my son and meeting other parents and professionals who were doing their best. And everybody telling me their story, like, why do the professionals do what they do? How do the parents live with their challenges? Like, the, writing opened me up to a world of learning too, and then putting that into words, on and on.

David Hirsch: Yeah. Well, thank you for being open, and authentic. if I can paraphrase what you’ve said, this book that we’ve been talking about first came out in 1996, the hardware cover edition, and then it was reprinted in 2001.

Robert Naseef: Yes.

David Hirsch: And it was that book, the first book that, you sort of had the epiphany or insight that you were being your more authentic self by including reference to the fact that, you know, Tariq was living in a residential facility. And, I can relate to that. I remember for the first, maybe 16 years of advocating for fathers and children through the Illinois Fatherhood Initiative, whenever anybody asked me about my dad, I always just started talking about my grandfather, my maternal grandfather. He was the one that played that important role in my life, that father figure role in my life. And it was a much more pleasant thing to talk about because I looked up to him. I admired him not just as a little guy, as a 6 year old when my parents divorced, but he died at age 93 when I was about 40. And we enjoyed a very, very close relationship. It wasn’t until I was, doing a cross country bicycle ride from Santa Monica to Chicago, and people started asking me about my relationship with my biological dad. And I don’t know that I was forced to talk about that, but, you know, it gave me the license or agency to, you know, start discussing that and some of the challenges that I felt. And, that’s really been the rocket fuel for me to be an advocate for fathers is that there’s way too many single moms raising kids and, you know, we could do a better job as a society. And I never really talked about my own personal experience. I always just spout off a lot of statistics about what happens when dads aren’t involved. You know, I, I sense that, you had that comparable experience, you know, being able to talk about more fully, the experience that you and Tariq had experienced in that residential facility. You know, I’m just projecting. Maybe you Were embarrassed. Right.

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David Hirsch: You didn’t want to acknowledge publicly that your son, you know, was in a residential facility. And it’s a fact.

Robert Naseef: Well, there was shame and rejection around it. People in the local Autism Society said, I put my kid away. And look, some of these same people I know years later, and their kids are in residential, some of them. But there was rejection at the time. I mean, institutions were Willowbrook and others. All the scandals about institutions, you know, that happened in the late 70s. So it was hard to talk about. It was hard to find people who understood it. And I really needed to get stronger and put this into words that people could understand.

David Hirsch: Yeah. Well, thank you for doing so, and.

Robert Naseef: Thank you for what you’re doing. I’m touched by what you’re doing as we talk here and the parallels in our lives, you know, different, but as men, these sort of parallel themes of, becoming our best selves through hard work. Really hard work.

David Hirsch: Yeah. Well, it’s the challenging experiences that I think shape our character. And, you do need to be able to articulate what these experiences are about so that others can relate to it. And I think our younger selves maybe didn’t have the vocabulary, at, least from speaking for myself, to be able to make those expressions.

Robert Naseef: Oh, I think it’s true. I mean, I tell people now, I said, you may read other things I said or you may see some YouTubes. That was the younger me. This is the vintage me.

David Hirsch: In the book, you emphasize the unique emotional journey of fathers. What are some of the most, common challenges that dads face when raising a child on the spectrum, and how can they begin to overcome them?

Robert Naseef: Well, we think we’re supposed to fix it. We don’t know how to talk about things we can’t fix. We jump into fixing. Traditionally, we’re the disciplinarian. And then when we have a child who’s tantruming, there’s a lot of shame and embarrassment and fear of what people are thinking. And I developed ways to, talk about that. I mean, I tell people, like, who were we before we had a kid like this? If you would see a kid tantruming in the supermarket, would you judge their parents?

David Hirsch: Oh, yeah.

Robert Naseef: Well, of course you did. And now it’s you, and people are looking at you. So, maybe you could. Let’s try to let go of judging yourself. This is a difficult situation you’re in, and who knows what people are thinking? You think you know what they’re thinking. Maybe they’re thinking of you with Compassion, maybe they want to help you. There’s many things they could be thinking. So I’ve, you know, kind of developed ways I can talk about all these things. Things by listening to people, by listening to my own heartbeat. You know, it’s a combination of, things. You know, I didn’t volunteer for this.

David Hirsch: Yeah, well, one of the thoughts that comes to mind is that, the sooner that a parent, mom or dad, atypical or typical kids can get to the point where they don’t really care what people say or think or do and not be offended by that, the better place it is.

Robert Naseef: Oh, yeah. Oh, yeah. That’s sort of accepting not just ourselves and our kid, but the world around us. And the world wasn’t set up, for kids like ours. So that’s ableism. And really we’re marginalized. And once we understand that and we’re in community with each other, it’s not as heavy a burden.

David Hirsch: Absolutely. You highlight the importance of acceptance in families. How do you guide parents from the initial grief or shock to a place of deep acceptance and joy in their child’s identity?

Robert Naseef: Like I ask them, I have sort of, like if I’m counseling somebody, I have a series of ways. I try to explore it. So I start with, what was it like when you held your

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Robert Naseef: child for the first time? I mean, for some people, if there were complications in birth, that was where their journey started. But particularly with autism, most were seemingly normal at birth. And often professionals don’t understand this, but, parents bonded right away in most cases. So I asked them to go back there and remember what that felt like. And that, the child they have now is the same as the baby who breathed their first breath and who they held next to their heart. That’s the same child. And that’s where I start with people. And it’s powerful to think about it that way. And I’ll ask them to show me pictures and you know, of course they’ll be talking about all the difficulties, but I’ll ask them, and this is the biggest question. And people usually stop on this, what do you enjoy doing with your child? When are you happy together? And that starts to light up. what’s going right? And being able to recognize that and love in the moment what’s going right. I got this idea from a mom who asked me, what’s the vitamin we need? Like, I’d already been thinking about this, and I said, well, the multivitamin is, when are you enjoying your child? What do you like to do together. And the more of that you have, the better life you’ll have as family.

David Hirsch: Yeah. Very insightful. I’m sure she was looking for something that she could give her kid, like, once or twice a day.

Robert Naseef: No, no, she was looking for. She was actually looking for what I gave her.

David Hirsch: Oh, really?

Robert Naseef: She was relieved. She thought she might be doing something wrong. What are we missing? What are we missing? And the problem clinically is professionals are always talking about the problems and behavioral interventions and, you know, they’re often missing what’s going right because of their training, not because they’re bad people, but because of their training in solving behavioral problems. And not that that’s bad. It’s not bad. But when you miss the core of the relationship, you miss the people.

David Hirsch: Very big insight. So many couples raising a child with autism struggle with relationship strain. What advice do you give parents to help maintain a strong and supportive partnership?

Robert Naseef: Well, I’m not hawking the book, but I do have a chapter on this. But both want to be appreciated for what they’re doing. That’s what is the medicine, for the marriage, the relationship, whether they’re legally married or not. That’s the medicine, is to show each other appreciation for all they do. That’s, the feeling they need. And they need some time together as a couple. And having a child with a disability with special needs of any kind, it’s not romantic. And that’s a problem because for men, sex helps us feel better. For women, we want to feel better before feeling romantic and wanting physical contact and even sex. So we’re kind of predisposed by nature and nurture. More nurture than anything. More how we were programmed. We’re programmed in ways that don’t work that well. And we have to learn how to work it. And mutual appreciation is how to work it. And for men, learning to just listen without trying to fix. So I reframe listening as action. That’s a doing. If you’re listening to your partner, you’re doing something. And if you listen really well, she’ll tell you what she needs you to do or would like you to do. And sometimes it’s just to listen.

David Hirsch: Yeah, Very important.

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David Hirsch: We do have two ears and one mouth. And I know that there’s a thought about using those in the ratio that we were given them.

Robert Naseef: That’s a good one. I haven’t heard that.

David Hirsch: Looking back, since you first started, the writing these two books, what’s changed most in the way that society views autism and what still needs to Change particularly around how families are supported.

Robert Naseef: Well, there’s been incredible awareness about autism, that really exploded with the movie Rain Man, and that’s led to just awareness all around the world. But the services that people raising autistic children have are very difficult to access and for people of color, even more difficult to access. So, recent statistics important. Finally, in the last two CDC, prevalence studies, children of color were diagnosed at a very slightly higher rate than white children. So enormous progress due to awareness, due to people asking questions, and due to professionals listening to the answers. So this is huge. But access to care is not equal and not enough in almost any community. I used to think I, was a great advocate for my son. I came to find out, I’m a decent advocate, but it’s because of my privilege of being light skinned and I’m really committed to social justice issues. And my name, Naseif in Arabic actually means justice. So I think I was really born into this. You know, I didn’t know it for a long time and I’ve been able, because of my Arab, heritage to be invited to the Middle east many times, I think over 10 to lecture and train and give second opinions diagnostically. And it’s really, inspired me seeing programs popping up all over the world and being able to make some small difference bringing whatever wisdom I have to those situations. But we have a long way to go and currently the administration in power is cutting back Medicaid services. And, families raising kids with autism depend a lot on Medicaid services for their children that pay for behavioral supports, health care and other things. So the social justice issues are really prominent right now. I’ve been speaking on them and I’ve done some other interviews on this. But what’s really encouraging is I’ve been in the Autism society of America 40 years for the first time. In those 40 years, all the major autism organizations have come together as one. And I find that really hopeful, really inspiring. That, sense of community and those artificial barriers of what organization you’re in. We’re talking about Autism Speaks, the Autism Society of America, the arc, and a whole long list of organizations, disability organizations coming together as one. It’s inspirational.

David Hirsch: Yeah. Well, I think that, when I look back over the last 10, 20, 30 years, there’s much higher level of acceptance and inclusion than I think there’s ever been.

Robert Naseef: Yes.

David Hirsch: Particularly here in the US I know other countries, you know, it’s a little bit of a mixed bag, you know, as far as where they are on their own trajectory. But like you said, there’s so much more work to be done. I don’t know that it’s all about financial resources. I think part of it has to do with education and empowering parents, like you’ve been suggesting, to better understand, their children and meet them where they are, as opposed to looking for cures or looking for absolute solutions. So thank you again for sharing those thoughts. You gave a TEDx talk entitled How Autism Teaches Us About Being Human back in 2017. And I’m wondering if you can reflect on that experience.

Robert Naseef: So for TED talks. You pretty much have to memorize

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Robert Naseef: it.

David Hirsch: Oh, yeah.

Robert Naseef: You know, because you have your time limit. And I memorized it. I practice it. I had a few three by five cards, I guess, with an outline and I had some pictures of my son. And I thought I was ready. And as soon as I opened my mouth, the tears, came out. My voice broke. And then I went on and gave my talk. But I didn’t expect that. I wasn’t ready for that. I thought I practiced. I’m good. But really that made it better. I’m Robert Naseef. Let me start out by saying I was not a young father. My son Tariq is 37 years old. Please don’t do any quick math. what I’ve learned from him I’m going to try to put into words about autism, and what it means to be human. He wasn’t the son I expected. He wasn’t the son I dreamed for. My hope. He would be proud of the man and the father I became in the process of raising him.

David Hirsch: Well, I do remember watching that and thinking, you know, you got emotional really fast. I’m thinking, wow, this is going to be a long 15 or 18 minutes if something doesn’t, change. But, I think once you got over that hurdle, if I can call it such a. You did a brilliant job of telling, the story and inspiring people. I know it’s been viewed tens of thousands of times, so I’ll be sure to include a, link to that in the show notes as well. I’m thinking about advice now. I know you’ve already offered some, but I’m thinking specifically about parents and dads in particular. If there’s any other, thoughts that you’d like to share.

Robert Naseef: For dads, it’s really important to connect with other fathers. There’s a kind of validation in there, in that experience that I think can set men free to an extent. I mean, I’ve been doing father support Groups off and on for, oh, I don’t know, 25 years. And, you know, some guys come once, some come all the time. But, when I ask them why they came or at the end, what did you get out of it? What invariably guys say is, I’m not alone. I’m so glad to know that. So I know you have a big audience. I want to encourage anybody listening to this to meet other fathers. And, many of the fathers that come to these groups, they’re pushed to do it by their female partners. So I’d say, like, listen to your female partners who want you to have support, who want you to learn how to talk about your feelings, and it’ll help you to be with other guys in our ongoing monthly group that comes out of Philadelphia. It almost never fails that one father of a newly diagnosed kid kind of loses it, starts to apologize for losing it, and then the support just flows because that sense of, I’m, not alone anymore heals really helps to heal a broken heart. It takes time to heal a broken heart, but that’s a really, really big piece of medicine.

David Hirsch: Yeah. Great advice about the importance of being in community with other dads. So I’m sort of curious to know, why is it you’ve agreed to be a mentor father as part of the Special Fathers Network? You’ve been doing it already for, like 25 years, maybe longer. Right. So it seems like a natural extension of just who you are. Right?

Robert Naseef: Yeah, it is. It is. Could I say no to that? No, I can’t say no to that.

David Hirsch: Is there anything else you’d like to say before we wrap up?

Robert Naseef: Just thanks for having me. Thanks for listening to my voice. Man to man, listening to my voice. And I’ve enjoyed listening to yours. And I know you’re really present in this conversation. I mean, that’s precious.

David Hirsch: You’re very kind. Let’s give a special shout out to one of our mutual mentors, the late James May, as well as Louis Mendoza, who succeeded James at the, Washington State Fathers

00:55:00

David Hirsch: Network for helping connect us.

Robert Naseef: James is great. I miss James. And I met him through Stanley Klein in the Exceptional Parent magazine. Stan also now transitioned to wherever, but also, a mentor to me.

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

Robert Naseef: My email, my name Robert.naseef@gmail.com. I get that all the time. I answer it all within a couple days. Usually my website or our practice website, alternativechoices.com has a, a lot of information about me I have a blog site, drrobertnaseef.com with a hundred or more blogs on different topics related to autism and other disabilities.

David Hirsch: I’ll be sure to include that information and some other in the show notes that will make it as easy as possible for somebody to follow up with you. Robert thank you for your time and many insights. As a reminder, Robert is just one of the dads 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 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 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. Robert, thanks again.

Robert Naseef: Thank you David, and peace.

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. Tune in again next week for another intriguing conversation on the Special Fathers Network Dad to Dad Podcast.

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