NeuroGuides: Helping People With Autism Succeed, with J. David Hall | EDB 175
In this episode: autism self-advocate and NeuroGuides CEO & founder J. David Hall
(28 mins) David has three children: Asher, Cherith, and Levi – all living with ASD. After becoming heavily involved in autism advocacy, David himself learned he was also on the spectrum. He is the founder and CEO of NeuroGuides, a 501 (c) (3) non-profit organization that provides consultations and life coaching for autistic people, and educates businesses on inclusion. David discusses how he received his diagnosis, the importance of maximizing the potential of people with autism, the importance of advocacy by people that are actually on the spectrum, and how a third party can sometimes help discover interests when parents have been unable to. For more about David and NeuroGuides, visit: NeuroGuides.org
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J David Hall: Guiding Autistics Towards Success
HACKIE REITMAN, M.D. (HR): Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains, and today, we’re going to have a lot of fun; I can tell already because David Hall, who is the CEO and Head of Neuroguides, and himself is on the spectrum, and who’s about ten times smarter than me…that’s who we’re interviewing today! So David, introduce yourself much better than I did.
J. DAVID HALL (JDH): Thank you, Hackie. Where to start with that- so I’m- yeah, you’re right. I’m David Hall. I’m founder and CEO of Lifeguides for Autistics, Neuroguides, and I’ve had my organization founded for about two years now, and we serve autistic adults. I’m delighted to be able to be here on this show today, and talk to Hackie. When he reached out to me, originally, he said, “David, you think like we do”, and that is important, and so I’m delighted to- to share uh unique minds on Different Minds today.
What is NeuroGuides?
HR: Well, what I love about Neuroguides and what you’re doing and everything in your statements, is you’re looking for positive tools. What can we do to help? What are we doing? What are our strengths? Where are we going here? Not- not a bunch of whining and this and that! What are -now how did you get into this?
JDH: The journey has been very interesting. About- so I have three children of my own, all diagnosed – all diagnosed on the autism spectrum. Aspies, all beautiful souls. You know I- I remember this sort of shock to my system about seventeen years ago when my first, my oldest, was sitting in his bouncy seat, screaming and shrieking at the whole world, because every time a light would come on, every time a car would drive by, something was setting him off, and this child could not be consoled by any traditional means, so I remember doing my research to find out what it was, as I knew I had heard all the old wives’ tales- that he was a cholic-y baby and all this. So, I remember going out and I was at a bookstore, and I’m looking up what could possibly be wrong, and I’m looking through other- every book there is, and I read lots and lots and lots of books, but someone walked up to me in the store and they said, “what are you looking for?” and I told him. and he said, “Have you heard of something called autism?” and I said, “I’ve never heard of something called autism. What would that be?” and they said, “Let me hand you a book,” so they got a book called ‘the Sensory Sensitive Child’. I don’t know if you know that one, Hackie. So I opened it up, and I’m starting to read these things, and I literally, in the store, stepped back and shouted, “That’s it! That’s it! I get it, now!”, and from that moment on, everything began to change.
The way I began to view my children, the way I began to understand. I will confess, at first, I-I was- I felt preyed to the deficit model thinking, which you know this. Deficit model thinking, now, deficit model thinking helps us in the medical field because we looked for broken things, broken bones, broken this, broken…but, when it comes to seeing neurodiversion people, autistic people, deficit model thinking is very painful and very raw um because it it’s the first step to closing the door to seeing unique minds and so, I begin this journey, this discovery process moving through all that – a lot of misunderstanding, a lot of miscommunication, a lot of bad information, and I beginning to gain foot holds to understanding neurodivergent thinkers, neurodiversity, the beauty of the unique minds. I read books by Barry Presant “Uniquely Human”. My big turning point book to read was my friend Steve Silverman and his book “Neurotribes”. That really opened my mind up. So Hackie, it’s been a journey for me. It’s been a journey.
HR: For our differentbrains.org audience – may go on “Neuroguides” on your website, what do they find and what do they do? Say I’m a parent and I have a kid or say I’m a neurodivergent eighteen year old. What do I do?
JDH: So, that website has been completely redesigned in the last three or four months, and I’m delighted with the people, as you said, way smarter than I; the people that are way smarter than I at doing social media things came along and redesigned it, and they told me and said “your message is very unique, it’s very powerful, profound- but you’re not telling it right. So what they did is if you go to our website at neuroguides.org, the first thing you see is a statement and I’m doing this from memory, but it said “For autistic persons, by autistic persons, we are an organization reaching out to equip, engage and encourage”, something like that. But it’s that statement that – for autistic persons, by autistic persons- and Hack as you know, the very first thing I did when I founded my 501(c)3 non-profit organization was, I sought out autistic persons to be on my board of directors- it was the very first thought I had. To me, why would we- why would we have an organization dedicated to serving autistic adults, and exclude autistic adults from being the very leadership and input for doing that. It didn’t make any sense to me, so I thought, “I have to start out with autistic persons on my board.” So everything we’re doing is autistic directed, it’s for autistic adults, and that’s the way we see things, and as you know, I have undergone my own personal journey in discovery about my own self on the spectrum in the last few months.
HR: Surprise, surprise! (laughs)
JDH: Yes, yes. Surprise, surprise! So about four months ago, I had just begun corresponding with my colleague, and just another beautiful, unique mind. Terra Vance- Terra is the founder of the aspergian.com; she’s the founding writer, and on the aspergian.com are over 100 now, neurodivergent writers, worldwide. These are some of the most prolific engaging amazing writers and minds, and so I began this dialogue and discussion with Terra, and she brooched the idea of me becoming the partner- a full partner with the aspersion with live guides for autistics – neuroguides- and I was going through the course of that discussion with Terra, and one day, so we’d been back from her (unintelligible) she is a euro-psychiatry consultant for organizations and companies worldwide, she’s a brilliant person, and she is also autistic herself! So, I’m having this conversation with Terra, and Terra gets really quiet with me, and I said, “yes?” and she said, “David, I want to ask you a question.” And I should’ve seen it coming, because she’s quite the diagnostician, and Terra says, “I want to ask you a question, here’s my question. David, how long do you intend to go on pretending to be a neurotypical?” and I said, “Oh no, no, Terra, you got this wrong. You see, I serve autistic adults in the United States” and began to give her my spiel, my elevator speech, and she said “no, no, no, no. You’re missing this.” She said, “let me ask you a question. When you meet autistic people-“ and Hackie I do this all the time, I met two autistic people on a flight here yesterday, and instantly connected with them on a very visceral, authentic powerful way. She said, “When you meet autistic people,” she said, “you are instantly connected with them. You have instant rapport. It’s like you’ve been friends forever.”
I said, “See? That’s my gift as a neurotypical to be able to do that. Isn’t it amazing that I as a neurotypical could do that?” She just laughed this thick belly laugh. She said, “Alright, I can see you’re going to be hard headed about this. I’m going to get you to take one of three diagnostic tools/instrument to show you and to demonstrate to you that you are on the spectrum, and so, you know the one I’m talking about, it’s the first one -it’s the RAATS, and so I took it and ‘course the first thing I did say was, “Well, look, all I have to do is get a score of 64, mean score or below, and that will prove to the world that I’m a neurotypical who has a huge heart for autistic people. So I scored 129, and from that point, and now this is where it also- I want to speak to the audience and say I do not in any way delineate or compartmentalize anyone in any way that has not gone through a formal diagnostic. I think that we are all on a journey, and I want to encourage everyone to ask these questions about yourself. Ask questions about how your mind is uniquely made. From my part, and as being the CEO of an organization serving autistic adults, I needed that just for my own- my own knowledge, my own knowing. So I went to a neuropsychiatry group in Austin- they were so warm and so wonderful and I took a stack of diagnostic tests, and at the end of it all, they said “David, you’re on the spectrum, and we’re excited about the work you’re doing, and now I’m beginning to consult with that group, so…
HR: My aha moment in realizing that this should be by the self-advocates, it should be by the neurodivergent came and about- I think it was 2015 I was giving a keynote speech out at the USAA, The United States Aspergers, Autism, and I was a keynote speaker with Temple Grandin, and my book was right next to hers, so I was like- it was like meeting Mickey Mantle! You know what I mean? It’s like what am I doing here? You know when I had my 26 Pro heavyweight fights when I used to get to spar with world champions, it was like, wow! So they have a speakers reception, and after the reception in a surrealistic moment, I end up sitting at the bar with Temple Grandin. I asked Temple Grandin, “Would you mind speaking to my daughter Rebecca?” Whose on the spectrum, whose the inspiration for all this, and they had a 10 or 15 minute talk and they’re just jabbering away and they’re instantly connected, and I-I wrote an article about it for different brains, that this is the league of champions that I’m not invited to! I can’t be there, you know?
JDH: Yes! I appreciate you saying that so much, Hackie. You know, Steve Silverman said recently about his book “neurotribes”, and he said to everybody, “calm down! I’m as neurotypical as can be! I just have a passion for serving you folks.” he said I wrote “neurotribes” as a rocket ship, I built that for you, for autistic advocates to take this neurodiversity, this- this- this understanding of how unique-unique minds work to a whole different level, he said “I built that for you.” So, in essence, that’s what I’ve been building too. I-I set out from the very start even not knowing that I too was on the spectrum, I wanted to create something in this- this gets little into the nuts and bolts way that I do, I wanted to create a- an instrument, a tool. You know, we use the word organization, we use all the big structure words- that wasn’t what I was trying to do and it’s not what I’ve done. I’ve created very unique instrument because as I looked at the landscape of- of in this country especially of where autistic persons are, I’m now looking at outcomes for autistic persons. I did a lot of research going into this and what I’ve discovered, and you know this too, the hard reality- the hard truth of the landscape for autistic persons in the United States is, as children diagnosed or not diagnosed, there are a lot of resources; now I’m not going to get into it today talking about the validity, the effectiveness of those-those resources but what I will say is there a lot of things for children, for autistic children. so by the time they get to 19-20 years old they’re aging out out of everything. There is nothing left for them, and so autistic adults- and I’ve worked with dozens and dozens of them myself personally, autistic and seniors- autistic adults are facing chronic anxiety. Very staggering rates of depression; we know from the research we’ve done in the last 3 or four years, there are somewhere between 80% and probably 90% unemployment rate, including soft employment, which is bouncing from job to job to job. So we know that, and Hackie, this is the one that gets me up every single morning. This is the fuel that gets me out of bed every single morning of the day to do this. There is a suicide rate that’s estimated to be nine times the national average for autistic adults. So autistic adults in the United States are shutting down, disappearing and taking their lives in droves, and I refuse to let it happen.
HR: God bless you, and let me tell you something- we as a society- I agree 100% of inadvertently and with all the best of intention, discriminated against adults, so we here at different brains, our internship is for 18 years old and above. okay? That’s what we do. But what I’d want to do by month to partner with as many organizations like yours who are professional and know what they’re doing, because you are the self-advocates. You and Marcy and all the people like my daughter, like so many others. You know stuff we don’t know, and you should be master of your own fate in many ways too. That doesn’t mean we should- we should discount everybody whose not blessed with a divergent-neurodivergent brain, but all our brains are neurodivergent anyway, but that’s a different discussion.
JDH: That is- you are absolutely right, and that is the core understanding behind neurodiversity, and I’m gonna- I’m gonna answer your question but I’m gonna start big, I’m gonna start with the actual concept of neurodiversity. For some reason that has become very complicated, very situational, there seems to be a lack of understanding about what we mean when we say there’s neurodiversity. I call it myself, I call it “true neurodiversity”, I want to stand apart from all the conflicting thoughts and the conflicting information, I want to make it very easy for people. First things first- no autistic person who thinks this thing through, is saying, “we’re not disabled”, okay? It is a disability. In fact, I believe personally that it is a disability in particular because of a very misunderstanding, misaligned, misdirected and miscommunication culture. I see it every day. I see it again and again when an autistic person walks in the door with a big smile, and their resume under their arm, and their head is full of dreams, they’re ready and dedicated, they wanna get that job, and they’ve got ten times the gumption than that neurotypical person who kind of flits in, they go in and they run into a workplace culture that from the start, and it’s hiring practices, in it’s processes, begins to crush them, and crush them and crush them.
Where’s the disability? Where is it, and then you have folks who have a lot of co-occurring medical conditions. There are a lot, and you even have autistic people who are intellectual disabled, ID, there are those too. It’s- we see autism as an autistic person, we see autism as a disability- plain and simple. Now, here’s where we really get going. Understanding that, and understanding the conflict we face with a culture and a misunderstanding culture, I believe personally, this is David Hall’s view of neurodiversity- I believe that all persons, regardless of the ordering of their bodies or their minds, are each- are each worthy of being seen as of great value, of infinite value, of being given opportunities for work, for service, for love and for connection. Each of us, each of us, no matter where we are on the neurodiversity spectrum itself, whether we’re neurotypical thinkers or whether we’re neurodivergent autistic thinkers- all of us are worthy, and all of us should be given value as fully human persons. I carry that every day, Hackie. Every day.
HR: I believe that everyone deserves the opportunity to maximize their full potential. Our job as a society is to give them that opportunity.
Maximizing Abilities and Interests
HR: They gotta walk through the door, they gotta take the opportunity, whatever their abilities are, whatever their differences are- when you walk in this inclusive office for an internship, it’s like “what do you like doing? What are you interested in? But it amazes me when I talk to a parent about their adult progeny, and then I meet the individual themselves, it’s like two different people!
JDH: Hackie, I love what you just said. I really appreciate what you just said, because you’re right. We’re saying the same things. So, I wanna answer that, then I wanna ducktail that back into your original question which was “Give me some advice of what we’re doing?” So, I tell people, when I meet with parents all the time. Now, there are occasions when I start to work with an autistic adult, when that’s not the case. So let me just talk- let me talk about something that occurred yesterday at an airport.
So I’m sitting down and I met a lovely young group from Austin, they were traveling and having this great conversation, and when they asked what I did, “Well I have this unique organization that works with, serves autistic adults socially/occupationally/ relationally, we engage, we equip and we encourage people” They said “That’s very unique, I’ve never heard of anything like that and you do that one on one with folks?” I said yes, and sitting two seats down from me in the airport, this woman looks up, and she’s looking at me kind of from the side of her eyes, she’s watching me, then I’m speaking and I got to this one point where I paused for a minute, and she said “I’m so sorry I have to interrupt you. I’ve been listening to what you’re saying” and I said, “That’s fine”. “I’m the parent of an autistic young woman, and she’s just about to leave high school and- what you’re saying is opening my mind just listening to you speak, and she said, “Can you tell me more about what you did?” So fast forwarding, the young woman comes and sits down, and she’s got her- she’s got her iphone/smart device in front of her, and she’s working on some kind of- something or other, and she’s very intent at it, and I told the parents, they said, “Well we’re just frustrated” The dad’s an engineer, and the mom taught right, and we’re just frustrated because we don’t know what to do”, and I said, “It’s okay.” And I gave them a bit more, and they said, “Well we’re just so frustrated” then I said “listen. First of all,” I said, “you have to forgive yourselves and just find peace with this.” I said, “This is not about you”, I said, “you love your daughter, you’re looking for opportunities. The universe profited and just introduced us.
So these are good things. But I said “I struggle as a parent of three autistic children myself”, I said “The magic of what I do is when I can work with someone else’s kids!” Because I don’t have to deal with a lot of the social structure, the family structure that you do. I can come at this with a whole different perspective and a whole different set of eyes. So, keep in mind the young lady is sitting across from me in the airport, she looks up over her device, and she looks at me, and I look at her, and we lock eyes, and for about 10 seconds, thousands of things are communicated, and she puts that down and she gets this sort of smile and said, “well let’s talk a little bit” and I said “let’s do that”. So we started this talk, and I find out she’s interested in impromptu theatre, she’s an artist, all these things are starting to fall out, and the parents are watching and thinking, “what are we seeing here? This guy’s not a therapist, he’s not a trained- he’s just- he’s talking in a way to her, and by the way everything I do is strengths based, everything I do is strengths based, I’m looking, searching, I’m like a detective, looking for strengths. Looking for points of engagement, So I, in a few minutes time, I’m finding out this young woman. So, long story short is it looks like I’m gonna be working with her from that little dialogue in the airport. So that’s-
HR: How cool, how cool. Well what we’re trying to do here, all of our media is produced by our wonderfully neurodivergent interns who come and go and go on to bigger and better things and some of them are going to school, some of them have big big ideas, Michael whose doing the audio on this right now, he’s a- he wants to be the next Elon Musk, you know? He’s- why not? Give it a shot, right Michael?
Letting the Neurodivergent Grow
JDH: (laughs) thank you Micheal. Well let me encourage you, yes, and here’s my advice piece with what you’re doing, what you’re doing is amazing Hackie, and Micheal and all of you guys over there. What you guys are doing is amazing. The culture cannot help itself, and I mean that, I’ve seen this demonstrated hundreds of times- parents, well meaning parents, loving parents think that they need to kind of lead the way, wrangle their son or daughter into social situations than to even relational situations, and circling it into occupational job situations, they feel like they just have to wrangle them in, and what happens is, with autistic persons, and Hackie mentioned it yourself, when you see them just sort of shut down, they wall off, is when the parent comes in, you’ve been well meaning, loving parents, and I’ve seen so many of these autistic social groups, I see ‘em pop up on you know, Facebook or meetup, or whatever they pop up, and the first thing you see is it’s organized by these adults, these parents, and so what they do is hustle their kids in, they sit them down and say, “okay billy, now we’re gonna do this” and by the way Billy probably speaks russian and german and is also working outside “Okay here’s what we’re gonna do now, we’re gonna do this thing, let’s get our crayons or whatever,” and it becomes- it’s repressive. Autistic persons don’t want that. They want to avoid that. They want to be known.
Going back to Steve’s book, they’re looking for their neurotribe, they want to be known and valued, and so in the social things that I’ve done, I have freed myself from parental oversight; I come in just on the outside, get them together and going, and then I’m out of there. I step out of the picture. So what you’re doing- this is my advice is do more of that. Any time you can take yourself out of the picture, anytime you could put the autistic persons you serve, these neurodivergent persons at the forefront and give them the ability to lead and grow, take every opportunity you can to do that and see that happen. Because you will be rewarded, and you’re gonna get to see Hackie, you’re gonna get to see this brain child of yours, these different minds, flourish and grow. You know, the gardner doesn’t stand over the plants, it fertilizes and he watches this stuff go. Every now and then he picks a few weeds out, but flourish, grow, nurture, that’s the way to go.
HR: Well, on that note, we’re gonna have you come back for sure, but I’m gonna end today, here, because that’s- on that very positive note, as we all strive to have everyone maximize their full potential with the gifts that they have! You know, and we’re all different, we’re all different.
JDH: Thank you for having me here today, I so appreciate it, and I think very highly of you, and I look forward to that good synergy, and building one another up for the work we do.