Our guest this week is Dr. Eric Endlich, of Sonoma, CA who is an Autistic man, the father of two, a Psychologist, author and founder of Top College Consultants, an organization that serves students with Autism, ADHD and other learning differences, navigate the college admissions process.
Eric and his wife, Kristina, have been married for 35 years and are the proud parents of two children; Elyse (21) and Alex (24) who is Autistic.
Eric discovered late in life he is Autistic, which has helped him relate to his son and has shaped his career.
His book, “Older Autistic Adults In Their Words, The Lost Generation”, is available on Amazon.
We’ll hear Eric’s fascinating story on this Special Fathers Network Dad to Dad podcast.
Top College Consultants – https://www.topcollegeconsultants.com
Asperger Autism Network (AANE) – https://www.aane.org
Email – firstname.lastname@example.org
Book: Older Autistic Adults: In Their Own Words – https://tinyurl.com/5czzzyhf
Phone – (617) 515-3568
LinkedIn – https://www.linkedin.com/in/topcollegeconsultants/
Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast. Working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at horizontherapeutics.com.
Eric Endlich: Because autism isn’t something that we have, any more than your race or gender or sexuality is something that you have, that you caught, or that you can get rid of, or that can or should be treated, it’s just a part of who you are. I was born with a different brain. It works differently, so I’m autistic.
Tom Couch: That’s our guest this week, Dr. Eric Endlich, a college admissions consultant, a father of an autistic child, and a fellow who discovered as an adult that he himself resides on the autism spectrum. His book, Older Autistic Adults: In Their Own Words: The Lost Generation, is available now on Amazon. We’ll hear Eric’s fascinating story in this Special Fathers Network Dad to Dad Podcast. Say hello now to host David Hirsch.
David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.
Tom Couch: 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 connect with mentor fathers in a similar situation. It’s a great way for dads to support 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’d be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad.
Tom Couch: So let’s hear this illuminating conversation between David Hirsch and Eric Endlich.
David Hirsch: I’m thrilled to be talking today with Dr. Eric Endlich of Sonoma, California, an autistic man, the father of two, a psychologist and founder of Top College Consultants, an organization that serves students with autism, ADHD, and other learning differences, navigate the college admissions process. Eric, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Eric Endlich: Thanks, David. It’s great to be here.
David Hirsch: You and your wife Christina have been married for 35 years and are the proud parents of two children, Elise, 21, and Alex, 24, who is autistic. Let’s start with some background. Where did you grow up? Tell me something about your family.
Eric Endlich: Sure. I grew up in Southern California, Northridge, the famous San Fernando Valley in greater Los Angeles. I went to school at UC Berkeley, went east for grad school, and ended up staying on the East Coast in the Boston area for many years. I only recently returned to California, and it’s great to be back in the nice climate.
David Hirsch Did you have any siblings growing up?
Eric Endlich: Yeah, I have an older sister, Lisa, and a younger brother, Keith. I moved back for a few reasons, climate of course was just one, but most of my family is on the West Coast. My sister, who had been on the East Coast, recently came back to the West Coast, and my younger brother has been in the Reno/Tahoe area for a long time.
David Hirsch: Excellent. Out of curiosity, what does your dad do for a living?
Eric Endlich: So my father, who passed away a couple of years ago, was a retired radiologist, a physician who read x-rays and CT scans and that sort of thing. And he was undoubtedly on the spectrum too, which I only realized much later in life.
David Hirsch: Yeah, we’ll talk about that. How would you describe your relationship with your dad?
Eric Endlich: He was physically present, but otherwise sort of absent. He wasn’t really engaged as a parent. He lived with us, he was there every night for dinner, he didn’t work excessively long hours, but he just didn’t really engage with us.
He would be out on a bike ride, working on his car, doing crossroad puzzles. I don’t know. Always seemed to be doing something. Lots of exercise. Didn’t really seem particularly interested in his kids, or for that matter, his sister or his parents or his wife, unfortunately. My parents did eventually get divorced after I had moved out of the house, and they both actually happily remarried and stayed remarried for many years.
David Hirsch: That’s an interesting insight. Thank you. Was there any important takeaway or lesson that you learned from your dad that comes to mind?
Eric Endlich: Hmm. Used to say the apple doesn’t fall far from the tree, which is kind of interesting, because there’s a relatively well-known book called Far From the Tree, which is about how certain things get passed on, like autism. So kind of ironic there. I’d like to think that I was nothing like him. But of course, as you grow older, you realize you have more in common with your parents than you realize.
David Hirsch: Yeah. Well, the way I like to think about it too is that we learn from role models, right? You try to emulate the ones that got it right. You want to be more like them. And then maybe, like you were saying, if your dad was not as involved, when you look back on it, well, you’re going to do something about that. You’re going to be a more involved dad, right? You’re going to be more present. And I think the pendulum in certain respects swings in maybe the opposite direction, if you have the awareness to do something about it.
Eric Endlich: Yeah. That was certainly a goal, to do a different kind of job than my parents did. They certainly did some things right, but there’s a lot of things I would’ve done differently and tried to do differently with my own kids. But then when you become a parent, you find out it’s an incredibly hard job, and so really you never master it completely.
I mean, I was just talking to my wife Chris today, literally, about how to be more effective parents with our son. So we’re always learning. I think if you have that attitude, that you’re always learning, that there’s always room for improvement, then there’s always hope. As you say, it’s never too late to have a happy childhood. Maybe it’s never too late to be a good parent.
David Hirsch: Yeah. Well, along those lines, I think we’re all works in progress. Thank you for your authenticity.
So my recollection was you took a degree in English language and literature from UC Berkeley, and then you did your master’s work at New York University in psychology, and then you got your PhD in clinical psychology at Boston University. And then you pursued a career that had everything to do with your studies, and you were a clinical psychologist for the better part of three decades.
Eric Endlich: Correct. I still am a clinical psychologist. I’m just working in a different capacity. I worked in a variety of settings, including employee assistance, hospitals, clinics, private practice. And then a few years ago I discovered and fell in love with the field of college admissions consulting, and I’ve been doing that ever since. But I’m still a psychologist, and those skills really inform my work with students.
David Hirsch: So when you were practicing over those decades, what was the primary focus of your work, and what type of clientele did you have?
Eric Endlich: Well, I would say I started out as a generalist, working with teens and adults and couples on the sort of garden variety stuff that people bring to therapy: depression, anxiety disorders, substance abuse, relationship problems, work stress. I did a bit of sports psychology for a while, working with athletes who were having performance issues particularly, and a lot of those were teens.
Over time I started working more with teens, and I really, really enjoyed it, which was one of the things that kind of propelled me into college admissions consulting, because I just loved working with that age group.
But also after my son was diagnosed with autism at age two and a half, I got increasingly involved in the autism world. And over time, I started having a larger clientele that was on the spectrum. So I worked with quite a few autistic teens and adults as my practice progressed.
David Hirsch: Excellent. So let’s switch gears to special needs. I’m sort of curious to know, prior to Alex’s diagnosis, did you or Christina have any real exposure to the world of special needs?
Eric Endlich: Not really, not until his diagnosis, but that was 22 years ago. So we’ve had a lot of practice now. And once he was diagnosed, it was a life changing event. It’s a rare event, or at least it has been in my life, where something happens, and you know at the instant that it happens, your life is never going to be the same after that.
And when the doctor looked at us and said, “Your son has autistic disorder,” which is what they called it at the time, I just knew immediately, everything’s different. And it was.
We threw ourselves into the world of autism, started going to conferences, reading books, going to specialists, bringing therapists into the home. It completely changed our lives. Initially it sort of felt like a negative, but of course, in retrospect, I can see many, many benefits to having the experience of being in the special needs world.
Certainly as a psychologist, it has helped me to be much more able to empathize with other special needs parents, to understand what they are going through, and really help them in emotional and practical ways. That’s a long answer to your question. No, we did not have prior experience, but after that, we were definitely full-on special needs parents.
David Hirsch: So, how did the diagnosis come about, and how did things transpire since then?
Eric Endlich: When he was maybe 15 months old, my wife and I both worked full-time. She was a biologist, a scientist in biotech industry. We had him in family daycare, and the wonderful family daycare provider said to us, “It seems like he might have a hearing problem. He’s not responding when I call his name,” and she demonstrated it. And I’m like, “Oh, no, no. The TV’s on. He’s watching that. He’s distracted, he’s just engaged in other things.”
But it just sort of sparked a question in our minds, and we started noticing certain things. That was the first indicator. What I really noticed that was the cue for me, was that even though he was amassing vocabulary at a really good pace—he knew numbers, colors, letters, you name it—he was not using language the same way that other children did. He only used language for one purpose, which was to label objects.
So if you asked him, “What’s this?” He could say, “It’s a pencil, it’s a cup, it’s a dog,” what have you. But if he was thirsty, he would never say “juice.” If he wanted to be picked up, he would never say “up.” Even though he knew those words, he didn’t make requests, he didn’t ask questions, he didn’t point.
So there were lot of things missing in his use of language. And it was one of those things where you just sort of intuitively knew something wasn’t adding up. Also the words he was acquiring. Like his first word was cat. I was there when he said it. It was a very exciting moment at the vet’s.
David Hirsch: Did you have a cat at the time? Is that why a cat?
Eric Endlich: Yeah. I picked up the cat, and I showed it to him, and I said, “Oh look, Alex.” And he said, “Cat.” And I’m like, “Oh my God, you talked.” So that was an exciting moment. But he didn’t say “mom” or “dad.” He was picking up these other words. Cat was the first one. I forget what the other first 10, 15 words were, but he hardly ever said “mom” or “dad.” He certainly didn’t say “mommy” or “daddy” to get our attention. So he wasn’t using words in that instrumental way.
I mentioned that to the pediatrician, and the pediatrician was like, “Oh, well.” We actually went through three pediatricians. The first one didn’t seem at all concerned. We switched pediatricians because we felt like he wasn’t taking things seriously. The second one said, “Let’s wait and see. Some kids progress at different rates.” This was back when “wait and see” was kind of the predominant approach, but they would never do that now.
Then, when he was two and a half and he still wasn’t really saying “mom” or “dad,” and more and more things were kind of coming to our awareness, at that point we had early intervention come in, which was a free service provided by the state. And you could just see from the looks on their faces that they were really concerned when they evaluated him.
We thought, “Oh, he has ADHD, maybe he’s a little hyper and doesn’t focus very well.” But they said he was delayed across the board. He was our first child. So even though I was a psychologist, I felt kind of dumb, like we should have picked up on this. How did we not know that he was so delayed? And so immediately he started getting services, and one thing led to another when you have a formal diagnosis.
David Hirsch: Well, thanks for sharing. Very interesting. Was there some advice you got, once a diagnosis was made, that you look back on and say that was really helpful or instrumental?
Eric Endlich: Well, it’s easy to point out the unhelpful advice. The doctor who diagnosed him was kind of like, “Here’s a book you can read, come back in six months, and I’ll take a look at him again.” And we were like, “Oh, my God, that’s it? Just give us a book and come back in six months?” So as I said, we started going to conferences and reading books and going to other specialists. And she also mentioned the possibility of institutionalizing him, which again was not helpful.
So we did find lots of good clinicians and lots of good professionals and organizations. The Asperger/Autism Network, which I continued to be involved in, was hugely helpful. We may come back to that in our conversation.
I also ran across a therapy called Verbal Behavior, which is not especially well known, but I got some training in it myself, because we had seen it in a conference and we were really impressed with what it could do. And so I got trained in it myself. I came home, I started working with Alex, and literally within an hour I could see the effects.
So this is a kid who at that point, we’re probably talking three and a half, four years old, had not asked a single question. I started teaching him to ask questions, and just within hours he was catching on and starting to ask questions. So that was very useful. And of course he’s never stopped asking questions since.
David Hirsch: That’s what happens when you unlock the door.
Eric Endlich: Yeah. Be careful what you wish for.
David Hirsch: Yeah. So, not to focus on the negative, but just to be authentic, what have been some of the biggest challenges for you and Christina over the years raising your son?
Eric Endlich: Well, sometimes the challenge is getting the right services, initially when he was in the school district. They had really good services for him in preschool, it was a great experience. Kindergarten was okay, and it sort of went downhill after that. And I don’t blame the professionals. I think by and large, people who work with kids really love kids and are doing it because they’re highly dedicated.
But he started kind of diverging from his peer group who were getting into more sophisticated interactions and conversations that he couldn’t keep up with. I went and visited him at school, and I could see this. I thought, this is just like babysitting. They’re really not doing much for him. The other kids are just kind of moving ahead, and he’s just sitting there, out of it, not really knowing what’s going on.
And the school district didn’t really see eye to eye with us on that. They just asserted that they were doing a perfectly good job. So ultimately we ended up pulling him out and putting him into a special needs school. And after there was turnover in the public school system, we ended up working with some wonderful folks in the special needs department who were super helpful to us. He was in a number of special needs schools, which were tremendously helpful for him.
David Hirsch: I am sort of curious to know what impact Alex’s situation has had on his sister Elise, your marriage, or your extended family for that matter.
Eric Endlich: Yeah, I could spend the whole time talking about that. There’s kind of a stereotype that if you have a kid on the spectrum or with special needs, that you’re likely to get divorced or what have you. I’m not sure that that research has even been validated. I think in a lot of ways it brought us closer together, because parenting is a huge shared project to begin with, but then when you have additional challenges, it needs to be kind of all hands on deck.
You never kind of get into cruise control where you can just sit back and be like, “Ah, this child’s just going to take care of himself,” as with our second child, who just kind of flourished with much less effort on our part. Although, of course she had her own challenges. But that being said, Alex can be challenging in certain ways, certain attitudes and behaviors. So our frustration with that I’m sure occasionally put a strain on our relationship.
I think, as a younger sister, it ended up being an interesting situation for Elise. Even though chronologically she’s the younger sister, psychologically and emotionally, she’s more like the older sister, even from a pretty young age. And this is partly I think her innate personality, as she’s really a take charge leader kind of person. You see that in other areas of life too.
But with Alex, I think from an early age, she just sort of took over and was like, “I’m going to give you guidance and take you under my wing, as if you’re my younger sibling, even though you’re my older sibling.” And that’s a mixed thing, of course, because it means that the sibling ends up being parentified a little bit, or ends up having more responsibility than you would ideally like them to. You want your kids to be able to grow up and just be kids through the bulk of their childhood, and not have to be surrogate parents or not have to watch their siblings or worry about them, make sure they’re not getting into trouble.
But it is what it is. So I think it has all kinds of effects. She’s now a senior in college. She’s actually doing a rather ambitious research project, which is studying autistic students. So clearly it’s impacted the direction of her interests. There’s lots of stuff that’s come out of it, and I’ve ended up working with autistic students myself.
As far as extended family, I think the grandparents just didn’t really know what to do with him. They didn’t quite know what to make of him.
David Hirsch: Okay. Well, I love your authenticity. That’s one of your superpowers.
So have there been any supporting organizations? You mentioned the school district. Are there any specific organizations that have been instrumental, either for Alex specifically or for your family?
Eric Endlich: Well, I mentioned AANE, the Asperger/Autism Network. Years ago, it had a different name, but it was still called AANE. It happens to be headquartered in the Boston area. So it was very convenient for us, because we could go to events, conferences and so on in person, back before everything was virtual. We got a lot out of that organization, and I subsequently did volunteer work for them and have presented at their conferences and so on. I would say that was one of the more helpful ones.
Certainly the schools he’s gone to have been really helpful. He went to a series of schools that provided him a lot of help and guidance. Community Therapeutics Day school, Cardinal Cushing Center League School of Greater Boston. We were in the Boston area, so of course they’re all based in the Boston area.
David Hirsch: Excellent. So I’m sort of curious to know what role spirituality has played on your journey.
Eric Endlich: I am Jewish. My wife is Catholic. Because we were so focused on kind of keeping up with Alex, keeping him out of trouble and trying to see what was around the next corner, we didn’t end up being very involved in a congregation. We never really stuck with anything, as it seemed like there was always so much on our plates.
Ironically, when Elise was well into high school, she kind of discovered her Jewish roots, and dragged us to temple, of all things. But I think we have our own kind of brand of spirituality. My wife and actually have been practicing meditation lately. I’m very connected to nature. I was really into nature photography for years before the kids were born, and I’m really happy to be living in an area where there’s a lot of natural beauty right now.
David Hirsch: So, let’s talk about the work that you do. I’d like to drill down on Top College Consultants. How did that organization come about? What’s the backstory?
Eric Endlich: So, as I said, I discovered college admissions consulting later in my career and just kind of fell in love with it. I had always enjoyed working with teens. I had been working with folks on the spectrum, and I’m a lifelong writer as well. I sold my first story to an article at age 13, and I just realized that this field would sort of bring all my interests together. I could work with students with various challenges, including autism. I continue working with teens, work with them on their stories, on their writing. As you said, I had an undergraduate degree in English.
And it gave me the opportunity to travel around the country, going to colleges, which I found was more fun than sitting in an office all day long. People say, “Oh, how can you listen to people’s problems all day?” The work itself was enjoyable. It’s just the working conditions of just being in a chair, not going anywhere all day long
When I kind of got into college admissions consulting, and started going to conferences, and collaborating with colleagues, and traveling to colleges, it was like, “This is really fun.” And my psychological counseling background turned out to be hugely helpful too, in of all things, helping kids with their essays, helping them reflect and become more self-aware and think about what they want to share with colleges about themselves.
I also help families with the stress of the college admissions process, which is infamous for being a very stressful process with lots of uncertainty and lots of demands and moving parts. As college admissions consultants, we do the work so you don’t have to. As a parent, you can’t be an expert on everything. But as a consultant, I’m traveling around touring colleges, reading about colleges, learning about what the latest developments are in the admissions process, so that families don’t have to become experts all of a sudden on the fly.
David Hirsch: Yeah. Well, I love the work that you’re doing, and two thoughts come to mind. The first is, I was a Neanderthal as it related to thinking about using college consultants for our five children. And the thought was, “No, there’s a lot of information out there. We don’t need to hire somebody to do this.” And my wife was, “No, I think we should hire somebody.” And we went back and forth, back and forth for a while, a long while because of my ignorance, and maybe my denial about the value that somebody like yourself brings to the table.
And then I realized it’s incidental to spend a couple thousand dollars upfront to help a child, a young adult, to better understand objectively. I became a big believer. By investing a little time before you invest your money, which is the way I think about it, this is money very well spent. So that was my first thought.
Eric Endlich: First of all, just to be clear, of course, people don’t need to hire admissions consultants. I have no illusions about that, any more than you have to pay for a lawyer to create a will, or you have to pay for a realtor to sell your house, or a plumber to fix your plumbing. If you want to figure out how to do it yourself, you can figure out how to do lots of things yourself, especially now with the internet. Absolutely.
And in fact, I wanted to sell our house myself. I didn’t want to hire a realtor. My wife talked me into hiring a realtor, and I’m really glad I did, because we found out there’s a lot that they know that I did not know. You don’t know what you don’t know until you hire an expert, and you find out like, “Wow, there’s a lot more to this than I thought.”
And it’s the same for college admissions. As parents, you might know a few good colleges for your kids to apply to, but there may be other colleges out there where they can study what they’re interested in. Which by the way, they may not even have figured out yet. Maybe we can help kids figure out how their interests might apply to what colleges might be a good fit, where they might do well financially, where they might do well in terms of their challenges.
If a kid has ADHD, autism, dyslexia, other challenges, we can help find the right match for them. And sometimes it also pays off financially, too. I mean, I’ve helped families appeal financial aid and get financial aid awards that were many times the amount of the fee they paid me. Or I help kids figure out where they can get lots of really good scholarship aid.
So I think of it as measure twice, cut once. Lots of kids transfer colleges. They start at one college, they’re not happy, and they end up transferring, which can be very costly emotionally, financially, time wise, and they don’t get all the credits transferred. And by helping them find a place where they’re really going to thrive, ideally they’ll stay there and get their degree.
David Hirsch: Well, thank you for adding that. And then the second thought was, you mentioned helping with the college essays. And the fundamental question that comes to mind is, “Does the individual mention their autism, their ADHD, whatever their difference is, or not? Is there a right way or a wrong way to be thinking about this? And what algorithm or tools do you use to decide yes or no?”
Eric Endlich: Yeah, that’s an excellent question. It’s one I get asked not infrequently. And as with many things in our field, the answer is, “It depends.” The shorter answer is yes, if there’s something on the application that needs explaining something, that’s confusing or puzzling, that the admissions committee would be scratching their heads over.
Why did this kid suddenly change high schools in the middle of high school? Why did their grades suddenly go up or down? Things like that. There could be reasons to disclose a diagnosis, because it would explain something, and those are real examples, by the way.
I had a student with ADHD who went on medication in middle of high school. His grades went way up. I’ve had kids whose grades went up when they were doing remote learning, because they had social anxiety and they were less anxious studying at home. And a student who changed schools because the school he was in wasn’t giving him the support he needed for being on the spectrum.
So sometimes it just helps kind of round out the picture for an admissions committee, and there’s no reason to think that disclosing is going to help or hurt your application. It just may help explain to the committee and help them understand your story better.
The other situation where it comes up is in the essays. That is a very personal decision, which to my mind is up to the student, not even the parents, but really up to the student. And some students feel that their story…so let’s say their autism, or it might be being gay, or another aspect of their story, is a central part of their identity. And they may feel like, “Hey, if you don’t know this about me, you don’t know me, and if you’re going to admit me to your college and I’m going to be living there, you need to know who I am.”
So I’ve had students who wrote about being on the spectrum because they felt like that’s just the heart of their story, and it wouldn’t make any sense to leave it out. Plenty of other students don’t mention at all. They don’t need to. They can apply like any other student, and sort of fly under the radar whether they disclose it or not.
There’s another point after they’ve gotten admitted. If they do need accommodations and services, they should absolutely disclose it at that point. Once they’ve put down the deposit, and they’ve sort of secured their spot at the school, if they need accommodations or services, they should absolutely disclose. Go to the Student Disability Services Office and start making a plan, if they haven’t already started.
David Hirsch: Yeah. Well, thank you. And I love the way you started your response, “It depends.”
Well, let’s switch gears and talk about your book. I love this book. Older Autistic Adults: In Their Own Words: The Lost Generation is the title. It’s co-authored by you, Dr. Wilma Wake and Robert Legos. I know the backstory because I’ve read the book, but I think it would be important for our listeners to understand, how did the three of you come together? What was the backstory there?
Eric Endlich: Well, it is in the book, so I hate to be a spoiler. But gosh, I have to backtrack a little bit. So we did talk about how my wife and I were immersed in the autism world. And years after our son was diagnosed, we were sitting in an autism conference, as we were wont to do, and listening to the keynote speaker Sarah Hendricks, who is herself on the spectrum. She’s an entertaining, funny, informative speaker.
And as we listened to her, she talked about her own journey, and how after being in the field for years, writing books on autism, working with autistic clients, she figured out herself that she’s on the spectrum. It sort of clicked, and my wife and I simultaneously realized that someone else in our family besides our son was on the spectrum, that is to say—me.
And that really shifted things for me. So I got even more involved in the autism field. There was a group for mental health professionals on the spectrum at AANE, so I showed up, I met Wilma there, and the rest is history.
David Hirsch: How old would you have been at that point in time?
Eric Endlich: Mid-fifties, maybe 54 or so.
David Hirsch: Okay. So you met Wilma in this group, and it was a relatively small group. How did things transpire that led the two of you to collaborate like you have?
Eric Endlich: Well, one of the ways autism kind of manifests in me is being very intense and driven and focused on things that I’m interested in. And autism became one of my special interests when I discovered that I’m autistic. I continue to be very involved in the neurodiversity world, in the autism world. And I’d always wanted to write a book. As I told you, I was writing stories from my early teens. I still write regularly for different purposes.
And she told me about this book that she was starting to write, that she had devised this survey for older autistic adults. And here we were, she and I, two older autistic adults, discussing it. I’m like, “Well, if you ever need somebody to work with you on that book…” And she welcomed the help.
Really, it was a huge project. She had already designed this survey, but hadn’t really figured out how to distribute it. She’s a little bit older than me, and maybe not quite as internet savvy. And so I sort of took it and ran with it. We were able to get 150 adults around the world to respond to the survey. And then we had a huge data set for our book. The book is a combination of facts and figures about what we found, about what people reported, as well as narratives of their individual stories, and of course our own stories as well.
David Hirsch: So what were your findings? If you had to identify, say the top couple, three findings, what were the big takeaways?
Eric Endlich: One that comes to mind is that the most common reaction that people had to being diagnosed was relief. So this is 150 adults over age 50 on the spectrum, and virtually all of them had been diagnosed after age 40, in their 50s, 60s, even in their 70s. We all had the common experience of growing up at a time when autism was not very well known. So virtually none of us were diagnosed in childhood
But when we finally figured it out in adulthood, the most common reaction was relief. And so that was noteworthy, that the most common first reaction was not a negative one, and that the vast majority, well over 90% of the respondents, came to see autism as a very positive part of their life and embraced their autism. Unfortunately, not a hundred percent, but most of us in the group saw autism as a very positive thing.
There are much higher rates of gender diversity, much higher rates of folks who are LGBTQIA+, which is a well-known finding in the autism world, and much higher rates of being atheist or agnostic. But among folks who identified as female, they were much more likely to self-diagnose, much less likely to be diagnosed by professionals. And I think this speaks to the difficulty women experience getting recognized and diagnosed. So that was a pretty noteworthy finding too.
David Hirsch: Yeah. Well, thanks for sharing. One of the things that I took away, either from the book or our conversations, I can’t remember, is what is generally referred to as use of the first person in the world of special needs. And I’m wondering if you can shed a little light on that, Eric.
Eric Endlich: Absolutely. Yeah. So I think professionals who work in the field—teachers, counselors, educators, other professionals—are frequently taught that it’s more respectful to use what’s called “person first” language, that you are a person before you are a label or a diagnosis. So you would say a person with autism.
But in fact, if you ask adult self-advocates, if you ask autistic adults what they prefer, the most recent survey that I’ve seen was that well over 80% of adults on the spectrum prefer “identity first” language, which is to say, “I’m an autistic adult. I’m not an adult with autism.” So number one, you need to look at who you’re talking to and find out what they want to be called. Don’t just assume.
And I’ve actually had people correct me when I use identity first. “Oh, you’re not supposed to say that. It’s actually person with autism.” And I just kind of have to laugh inside and say, “Well, I wouldn’t tell a gay person how to identify themselves. I wouldn’t tell a black person what terminology to use to describe themselves. Why would you decide for an autistic person what terminology should be used? That should be up to the person themselves.”
So most of us prefer identity first language. That’s not a hundred percent. Some don’t care. Some actually prefer person first language. But when in doubt, ask someone.
David Hirsch: Yeah. Well, thank you for the illumination.
Eric Endlich: I just want to say one other thing about that. It’s not just terminology. There’s a reason for it. It isn’t just like, oh, it sounds better. Because autism isn’t something that we have, any more than your race or gender or sexuality is something that you have, that you caught, or that you can get rid of, or that can or should be treated.
It’s just a part of who you are. I was born with a different brain. It works differently. So I’m autistic. It’s not something I have that needs to be fixed or treated. It’s just a difference.
David Hirsch: Yeah. Well, thank you for the point. It’s a really important one. There’s a really fascinating story that I read in the book. It has to do with the conversation that you had with your dad. I’m wondering if you can recall that. It was a Thanksgiving setting, a fall walk with your dad. And I thought that was really fascinating.
Eric Endlich: It’d be easier to read it out of the book, but essentially we were going for a walk, and unfortunately in his last few years, he developed dementia. It’s unclear why. It wasn’t typical Alzheimer’s dementia. Some of us think he didn’t take care of his body. He went to extremes with his eating and exercise habits.
But at any rate, his memory wasn’t what it used to be. And I was going for a walk, and I had realized that I was on the spectrum. I lived in Boston, he lived in California, and he came out to visit. So this was sort of like the key time to have this conversation.
And I said, “I took this test, and I figured out I’m on the spectrum.” And he was really curious. I have to give him credit for that. He was open-minded. “How did you figure that out?” “Oh, I took this test, and here’s some of the things that I found, and here’s some of the qualities that made me realize that I’m on spectrum.”
And he was like, “Really? That’s interesting. Some of that sounds like me too. I should take that. I’d be interested in taking it as well.” And I had actually already taken it for him in my head. I had sort of scored, “Well, how would I score my dad on this?” But when we got back to the house, I went through it with him. I kinda had to read it, and score it for him, because he was somewhat declining at that point.
But he did in fact score as being on the spectrum, a higher score than I got, and almost exactly the score that I predicted actually. And then the next day, I think it was, I asked him if he remembered our conversation, and he was like, “No, why? Was it anything important?”
And so I’m glad we were able to have that conversation, and that I was able to confirm that his impressions of himself were that he was on the spectrum, but unfortunately it was sort of lost on him because of his memory.
David Hirsch: Yeah. Well, thanks for sharing. It’s a very, very illuminating conversation, and there’s so much more that we could talk about. But you’re in a unique situation. You’ve raised a son on the spectrum, and then you learn much later in life that you’re on the spectrum as well. And I’m wondering, under the banner of advice, what advice you can offer parents who are raising a child with autism?
Eric Endlich: Well, one has to go back to that neurodiversity paradigm, that it’s diversity. It’s not deficit. It’s not a disease. It’s not something that needs to be cured or eliminated. Those of us who are neurodivergent—about one in six in the population, whether it’s autism, ADHD, dyslexia, other brain differences—we have a lot to contribute to society.
And when you’re raising a child, and they’re not reacting the way you think they should, all you see as a parent is the challenge. Why does it have to be so difficult? Why can’t they do this like other kids do? Whether it’s making friends or whatever it might be. It’s harder at that point to see that they also may bring something unique and valuable to the world.
And employers have started to realize that. Some employers are proactively recruiting job applicants on the spectrum because of the strengths they bring of being loyal, detail oriented, having low turnover, being honest and trustworthy. Lots of strengths as employees. And many of us are inventors, entrepreneurs, artists, sure, yes, lots of us are scientists too, and nerds.
We come in all types. There are actors, musicians, writers. We have a lot to contribute. So you may not always see that when you’re in that situation as a parent, but be patient. Your child will continue to develop and express who they are, and you just don’t know what’s to come. So just hang in there.
It’s hard. But there’s also lots and lots of support out there. There’s other parents who’ve gone through it before. You don’t have to go through it alone. Join a support group, connect with other parents who are going through it or who have already been through it, so that the path is easier for you.
David Hirsch: Well, that leads right into my next question, which is, why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?
Eric Endlich: If there’s anything I’ve learned that I can contribute to others, then I want to give back. You asked about spirituality. All I know is I’m here to make the world a better place, to make the world a more beautiful place, and to bring hope to others. So if there’s anything I can do to make that happen, I would like to.
David Hirsch: Yeah. Well, we’re thrilled to have you. Thank you. Is there anything else you’d like to say before we wrap up?
Eric Endlich: We talked about my work at college admissions consulting. We talked about hiring a consultant. I want to be clear that I understand it’s not just whether folks choose to hire a consultant. Not everyone can afford to, and because of that, I try put as much information out there for free as possible. So I have a lot of information and resources on my website. I do lots of webinars and write lots of articles, so that folks can access the information, whether or not they decide to hire a consultant.
David Hirsch: If somebody wants to learn more about Top College Consultants or contact you, what’s the best way to do that?
Eric Endlich: Well, go to topcollegeconsultants.com or email me at email@example.com.
David Hirsch: We’ll be just sure to include all that in the show notes so it’ll make it as easy as possible for somebody to follow up. Okay. Let’s also give a special shout out to our mutual friend, Dr. Hackie Reitman at Different Brains for helping to connect us.
Eric Endlich: Yeah, he’s doing great work.
David Hirsch: Eric, thank you for taking the time and many insights. As a reminder, Eric’s 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 from your own, please go to 21stcenturydads.org.
Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501(c)3 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 acceptable contribution? I would really appreciate your support.
Eric, thanks again.
Eric Endlich: Thanks for having me, David. Great talking to you.
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 firstname.lastname@example.org.
Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Thanks again to Horizon Therapeutics, who believed that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at horizontherapeutics.com.