Autism Village founder Topher Wurts says that with a special needs diagnosis, a parent’s “imaginary future child” dies all at once instead of by a thousand cuts over twenty years. In today’s show, Topher shares his family’s caregiving journey with son Kirby, who was diagnosed with autism at eighteen months old. From altered careers and tricky social situations to the all-autistic Boy Scout troop Kirby thrives in and balancing time with neurotypical son, Zandy, celebrating each day is what this family is all about. Topher also tells us how he used his background in tech media to develop Autism Village, a free, Yelp-like mobile app for autism families, and how his non-profit Autism Friendly is training businesses to better serve clients on the autism spectrum.
Download the free Autism Village app
More about Autism Village
Training for businesses: Autism Friendly
Additional Resources:
“Born on a Blue Day” by Daniel Tammet
“Ten Things Every Child With Autism Wishes You Knew” by Ellen Notbohm
Books by Temple Grandin
Learn about jazz pianist Matt Savage
Topher and his son Kirby
Music: “Woken With You” by Ketsa | CC BY NC ND | Free Music Archive
INTERVIEW TRANSCRIPT:
JANA PANARITES (HOST) – For most of us, choosing a restaurant, a vacation spot, or even one theme park to take your kids to is a pretty straightforward process. But for the 3 million families in the United States with autistic children, that process can be daunting. Just asked today’s guest, whose son was diagnosed with autism at 18 months old. Topher Wurts is an autism dad, who joins us from Chester Springs, Pennsylvania to share his family’s caregiving journey with their son Kirby, and to tell us about his new website and mobile app Autism Village, designed to help families find autism-friendly places and services. Topher Wurts, I’m so happy to have you on the show. Welcome to The Agewyz Podcast.
TOPHER – Thanks for having me. I’m happy to be here.
JANA – So before we talk about Autism Village, if we can I’d like to go back to the time of your son Kirby’s diagnosis. What do you remember about how you and your wife, Jana – who has the same name as me – what do you remember about how you and your wife reacted?
TOPHER – Well, geez, there’s a lot there. I’ll try and touch on a couple things, I guess, because I get this question a lot, especially from new parents or parents that are maybe trying to decide whether or not they believe, maybe, the diagnosis or what they’re seeing. So I would say that the diagnosis itself, we were very fortunate – and I wrote a number of blogs about sort of these things too, that are on the website, on Autismvillage.com. So but I’ll try and summarize it for your audience.
TOPHER – At about 18 months old, we had had our first child and our second child within 11 months, and Kirby was about 18 months old, and I was traveling a lot for my job. So we decided to see if we could get Jana some help, and we ended up with a young lady from New Zealand coming to do some nannying for us. And she had worked in a pre-school – her name’s Nikki – and to work in a pre-school and they had had some children with autism. So we were really, really lucky in that, essentially, Nikki, it was familiar to her and so she brought to attention to our friends that she thought maybe Kirby was on the spectrum. We didn’t call it a spectrum then, but, and they encouraged her to talk to us and supported her through that.
TOPHER – And then that led to us talking to Easter Seals. And, you know, that was tricky because as parents, you’re sort of dealing with a lifelong diagnosis. So I was resistant at some level, I think many parents are. And I continued to push the interviewer or the observer from Easter Seals about why she felt that Kirby was on the spectrum. I mean, he’s only 18 months old, right? And eventually, she said to me something, which at the time, really frustrated me, and now I completely understand 16 or 14 years later, whatever. And that is, Listen, I’ve been doing this a long time and I can just tell. And of course, she could just tell, and so could Nikki just tell, and now I can just tell. But that’s tough when you’re a parent. So that’s the first part.
TOPHER – So then I wrote a chapter for a book called The gift [INAUDIBLE] about the way parents react and what the, you know, emotions are around that. And part of the thing is that when we get a diagnosis – we all have this sort of imaginary future child when our children are born, they’re going to be astronauts, or physicists. And you get a special needs diagnosis, and that imaginary future child kind of dies all at once instead of over 20 years, by a thousand cuts as we do to our parents, right? 20 years on, they’re kinda like Well, Jana, I like you. You’re nothing like I thought you were going to be when you were born, but you know, you’re all right.
TOPHER – But you know, when you get a special needs diagnosis, that future is just gone immediately. And so some parents struggle with letting go of that. I think it’s sort of a grieving process of the imaginary future, if that makes sense to you. And so I’ll say that about it. And then I’ll finalize by saying the advice I give parents now is, listen, the worst case scenario is that you get a diagnosis, and maybe you’re over diagnosing, but you’re going to get more support, and it’s not going to hurt your child. But if you get less, you’re losing precious time between the time they’re born and the time, sort of, when we’re in our late 20s, when kind of our brain is set and we are who we are. That’s an important time to help these kids make progress.
TOPHER – And so I encourage parents not to resist the diagnosis, but to get fully engaged. And then if it turns out that it’s not correct or not that much, the worst case is you just spend more time with your child helping them and educating them. That’s okay.
JANA – And did your wife react similar to you? Or, how did she react?
TOPHER – Well, we’re a pretty good team. I mean, we’ve stayed together. Obviously, you may know the stats: 68% of couples that get a special needs diagnosis divorce by the time the child’s eight.
JANA – Wow – I didn’t know that.
TOPHER – Yeah, 68% by the time the child’s eight. And so unfortunately, it’s the dads who mostly kind of go, and the majority, you know, vast majority of these kids are being raised by single moms, and studies shows that they often have a neurotypical peer more than 50% of the time, and hold them-
JANA -a neurotypical peer? I’m sorry, could you explain that?
TOPHER – Neurotypical peer. So, so you know, a brother or sister that’s just normal.
JANA – I see. OK.
TOPHER – Normal to drier setting.
JANA – Right. Neurotypical. OK.
TOPHER – Although, one could argue with the prevalence now of autism that what’s neurotypical today, tomorrow might be reversed. But in any case, they’re raising a brother or sister and they’re holding down on average one and a half jobs to make ends meet. And so there’s a vast population of single moms out there trying to make this work. So that’s noteworthy. We didn’t go that route, obviously.
TOPHER – So we work together as a team and we are pragmatists. And so we got, you know, we just accepted it. And one of the wonderful things that comes out of that, is that then you can celebrate every day. Instead of kind of – back to that death by a 1,000 cuts over 20 years comment – instead of being kind of disappointed that our kids aren’t working out the way we planned every day, we’re celebrating progress every day. So once you let go, there’s a beautiful silver lining to that.
JANA – Right, and I’m guessing that you’re your kid feels that positive energy. And that’s a plus. Like any kid would.
TOPHER – I think so.
JANA – So the autism spectrum is pretty broad. Can you just for folks who don’t know this, describe the different types, and where Kirby falls on the spectrum?
TOPHER – So the phrase autism spectrum, or ASD stands for Autism Spectrum Disorders, is relatively new, you know, and likely some of the levels of diagnosis that we’re seeing now are the result of more awareness and a broader definition. So it’s one in 42 kids now, being born, is being diagnosed on the spectrum, and three-quarters generally, roughly, are boys. So it’s really a big issue for boys.
TOPHER – The spectrum is quite wide. So at the one end you have people that are maybe just socially awkward, they don’t get the social cues. In their past maybe, they were they were sort of the geeks or whatever. You know, we go back to the big bang theory with, sort of, a bunch of scientists that maybe are on the spectrum with different levels, and sort of the cool neurotypical girl, you know, that is their translator, right?
TOPHER – And, you know, and at the other end of the spectrum, you’ve got kids that are nonverbal. It’s pretty common for the autism stuff to be mixed with some other disability. Commonly, seizures, disabilities include seizures and stuff. So you know, at the far end of the spectrum, you’ve got nonverbal, non-social, potentially, you know, fairly significantly intellectually-delayed kids maybe that have something else. So it is a very wide spectrum.
TOPHER – I guess I’d say Kirby is somewhere in the middle. I mean, he’s verbal, he’s not wildly conversational. He doesn’t really have any social issues though. He gets along with everybody, certainly. His learning is delayed. And one of the things that we, you know, that kind of – I’ve come to think about is, that kind of our education system is a little wacky in some ways in terms of when we, kind of, when we start and stop trying to educate kids. Because essentially what we know from brain scans now with the autism population is that the part of the brain that’s lit up is kind of the core and the stem, and not so much the frontal cortex is. And of course, that part of the brain is the part that doesn’t have any language. It’s the oldest part, it’s fight or flight.
JANA – The limbic brain, right?
TOPHER – The limbic brain, right. So autists tend to be more limbic. And the way the brain builds is, the brain cells swim out from the center, essentially. So there’s a view that in the autistic population, they haven’t swum out successfully to really get the typical prefrontal cortex development. And of course, the prefrontal cortex undergoes the last major makeover in the brain in brain development, which happens between puberty and sort of late 20s, which is why, you know, we have college-age kids jumping off a roof into three inches of snow, right? The reasoning isn’t quite there, right? We all know about the 20 year-old making bad decisions, or whatever.
TOPHER – But we stop really trying to educate the special needs kids at the end of middle school, and we switch to kind of life skills-based education, when there’s probably a possibility and potential to keep educating them probably, you know, into their 30s. And these kids, their frontal cortexs, are developing behind, but they will continue to develop into their 30s.
TOPHER – So there’s some thinking about brain development, and where Kirby is in the spectrum is probably about the middle, and we’re going to keep up the intervention, and keep up on him to grow right as long as we can.
JANA – Right. So how old is he now? How old is Kirby now? 15?
TOPHER – Yes, he’s 15.
JANA – He’s 15. So of course, your life has changed dramatically since the diagnosis. Can you give us an idea of how it’s changed, outside of the website, you started, etc. You were traveling a lot.
TOPHER – Yeah. So it’s kind of funny. I mean, Jana says to me, you know, you remember when we got this diagnosis and we were talking about it, that we said we weren’t going to be the family that made our whole lives around autism. You know, you said to me, she says. And then she says, but you, Topher, have actually started this nonprofit and turned it around. So it’s kind of a funny marital anecdote there, but everything, everything changes, it really does.
TOPHER – And you really have to get your mind into the fact that you’re in this new mode. So yeah, I left the job that I was in, which was a global job with lots of travel, so I could be closer and spend more time with the family. And-
JANA -was that hard for you?
TOPHER – I don’t know that it was hard, it’s just different. I mean, you know, you’re on one career path and then you have to make some pragmatic decisions. In the end, maybe I would say it was, it was better in many respects. And so that changed my, certainly changed my professional path, if you will. And Jana’s background is in the hotel restaurant management, and so forth, and really this meant that she changed her, kind of, professional trajectory too, to be at home more and focus on Kirby more. And there’s a little resetting of your own, kind of, how you measure yourself in that.
TOPHER – And then of course, Kirby’s a happy guy. He’s a very busy guy. And he’s a very curious guy. So there’s a whole series of blog posts about the day that you know, he tried to make his Thomas train, train stack smoke so he, you know, lit a bunch of trains on fire. You know, we had household smoke. Or the day he decided that he was really into Frozen, so he used baby powder to make it snow in the house. Jana loves to cook so all of her carefully curated spice collection gets mixed up into boxes to make train cars. Cool stuff. So you have all different stuff.
TOPHER – And then of course, in our case he has an older brother who’s neurotypical. So then there’s all the thinking about making sure that Kirby doesn’t expand to fill all the available air and energy in the room, and what’s it like to be the other one? So it’s really-
JANA -yeah, what is it like for him?
TOPHER – Well, you know, they’re buds, but there – it’s almost like raising two only children. They intersect and they enjoy each other, and Zandy will certainly come to Kirby’s defense and so forth. You know, but at times he’s also, you know, I think kind of feels like Kirby is the tail wagging the family dog. So it’s a tricky thing. We worked hard to try and make sure that Zandy doesn’t feel like this was a burden on him so that later in life – I mean, as parents we have to think about what happens when we’re gone, and Zandy is what is here for Kirby. So it’s a tricky thing, being the sibling, for sure.
JANA – Yeah. Your son’s name is Zandy?
TOPHER – Zandy. Yeah.
JANA – That’s a great name.
TOPHER – It’s a nickname, derived from a family name.
JANA – Oh, OK. I was just gonna say, that’s too cool to be anything but a family name or a nickname.
TOPHER – We started from the nickname and worked back. We knew a Zandy, we wanted to call him Zandy, and then we’re like, OK, what can we use that will get us there?
JANA – So what if any resources did you have in those early days?
TOPHER – Boy, you know, the amount of resources we had and the amount of resources today are just – and then there were parents that had gone before us that really were trudging through the resource desert. I mean, we did not have a lot, but there was enough to grab on to that we were able to try and inform ourselves, and we were curious people, we took a very positive, how-do-we-make-the-best-of-this kind of approach.
TOPHER – So we found resources and it was, you know, a friend from my professional life whose wife was a Special-Ed attorney or is a Special-Ed attorney in Connecticut, who was the one who coached me as I now do other parents about, don’t worry about an over-diagnosis, you know, as I said. Better to have too much support than too little. So, you know, we had support like that. We were able to find the Easter Seals organization. That led to what there was in the school system. But, you know, it was pre-iPad, pre-iPhone. And so devices that were very expensive, specialized devices to help kids, a lot of the resources were analog, you know, little cards and print pictorial cards to help the kids.
JANA – Right – flash cards.
TOPHER – Yeah, they called them text cards, because they could make sentences out of pictures. So you know, all that changed dramatically with the advent of the iPad. And likewise, the amount of presence on social media certainly has grown a lot. There are more autism-related nonprofits in the United States than any other category. So it shows you that there’s a lot going on there. So it’s really exploded. A parent starts today, also, you know, on a journey of discovery, but with a lot more stuff in the support area than we had, for sure.
JANA – Mm-hmm. I did not know this, but autism is the fastest growing developmental disorder in the United States.
TOPHER – So in my birth year, it was one in 2,500 diagnosis. I’m 51. So now it’s one in 42. And you know, there’s an MIT researcher hypothesizing that it’ll be half of all births by 2020 or 2025. So, you know, it is, it’s growing fast. Of course, it’s a wide spectrum, as we said. So, you know, if you’ve met one person with autism, you’ve met one person with autism.
JANA – Right. So tell us about the Autism Village project, I guess you could say. How it started – its genesis and its progress. Take us through that.
TOPHER – So I guess I would say that it really started at the transition meeting with our school district, when Kirby was going to be of school age. And Jana and I went. We left Kirby with a babysitter and we went to find out what the school program might be like. And when we got there, we were confronted with a room full of women with children at their feet, typically their autistic child, and often with a peer, brother or sister. And it was like sort of walking into a land of single-mom zombie families. And I remarked to Jana, you know, the tragedy of this is that given our background, our experience, our professional life, we’re going to advocate for Kirby and he’s going to get great support. But you know, there’s probably somebody in this room that has a kid that could go further, who’s just so stretched so thin, that she’s just not going to be able to advocate and get the level of intervention for her kid, who maybe could go further than Kirby could. And I say that was the genesis because, essentially, I tinkered around with how to use technology.
TOPHER – My background’s technology, technology startups, media. So how can we use some of the mobile web technologies to support this community? Lots of people were working on educational materials and causes, and cure research was common in the big nonprofits, but nobody was really working on the day-to-day practical challenges. And as we went through the process, what I realized that the first thing autism parents talked about when we met was, do you know of… or where do you go for… you know, a dentist, a doctor, a restaurant, a safe playground or park, a school, a teacher, whatever it was – that was the parents’ water cooler.
TOPHER – So we looked at, how can we use technology to kind of preserve that and democratize that, make it available to everybody? And we were Yelp and TripAdvisor users, and it became quickly obvious to us that one way to do it would be to use a mobile approach where parents could share those ideas, ratings, reviews, and others could discover them, that was location-based, that was in their hand.
TOPHER – So essentially, Autism Village is an app for iPhone and Android, and for iOS and Android and the web, that provides a global water cooler for the autism community. And not just parents are using it, but adults on the autism spectrum are putting in employers, or pubs or restaurants that they find more or less friendly towards them as a place to work or congregate. So it’s been really exciting. It works everywhere in the world. We’ve got about 25,000 active users a day sharing stuff and discovering stuff. It’s a lot of fun.
JANA – It sounds it sounds great. And did it start with the Kickstarter campaign? And is that still going?
TOPHER – It did. The Kickstarter is not still going, but it was how we started. A Kickstarter lasts 30 to 60 days. I think ours was 45 days long, about two and a half years ago. And I had been working on things, but wanted to really kick off the project with something that really galvanized the community around it. So we did the Kickstarter. It’s the largest crowdfunding that’s been done for an autism cause. Mind you, they’re all much smaller than floating kittens or, you know, games or whatever. So we raised about $75,000 on Kickstarter. And that’s what allowed us to build the initial versions of the mobile app.
JANA – Mm-hmm. And is it widely available now?
TOPHER – Absolutely. It’s absolutely free, and it works on the web at AutismVillage.com, and it’s a free download at the iTunes Store or the Google Play Store. And so it’s a free resource to the community. What we do is, is that we also have built a training, a basic training program about how to-
JANA -for businesses…
TOPHER -interact, yeah, for businesses, right. It’s called it’s at Autismfriendly.com. So it’s an online, self-paced training. It takes less than an hour. And it helps the people that work in the businesses that serve the public, to understand the autism community and how to be successful.
TOPHER – So as I said, in my birth year it was one in 2,500. And if you think about, for example, I’ll pick on museums for a minute. If you think about a museum, the volunteers who are docents at most museums are grandparent age, so they did not grow up with this. So when they see a child on the autism spectrum struggling with a crowded room or a loud noise or something like that, they see a poorly behaved child, or bad parenting or an indulgent parenting job. And they don’t understand the spectrum because they didn’t grow up with it. So one of our big supporters at Autismfriendly.com are museums, that get the training to share with their volunteers and their staff. Likewise, restaurants, amusement parks, anybody that serves the general public, can come in there. And we charge a small fee to businesses for the training, and that’s what allows us to keep the main, ratings and reviews, service free.
JANA – Can you give us an example of the reaction that you’ve gotten from some families?
TOPHER – You know, if you look at our social media presence and the comments there, the comments, we struggle a little bit in the Google Play Store, because there’s so many variants of Android that the app doesn’t always work perfectly, but we, you know, we try to respond to them. But everywhere else, if you look at the comments, you just see wonderful, quotable testimonials and ratings and reviews. And, as I said, my background is media, specifically financial media. So I joke, it’s much better to wake up every day and get love mail from families who are using the app, than it is to go to work and get hate mail from traders that the product is glitched, or caused trouble.
JANA – I’ll bet.
TOPHER – But our parents just love what we do and they tell us every day, and it really keeps us going.
JANA – Well, you know, so many apps that are trying to make headway into the healthcare space. I don’t know. I question the user friendliness of them, what they’re worth. I think the cool thing about this app is that it’s very practical and it was designed by someone who comes from the place of need. So I like the practical aspect of it. And I like the fact that it’s kind of a Yelp for autistic families. It’s just, it’s brilliant.
TOPHER – Well, thank you for saying it. That’s exactly what we tried to do, right? We just tried to solve, we, again, we just tried to apply technology to what the community was demonstrating that they needed, whenever they met, so.
JANA – So I want to know more about Kirby. What are his interests besides wearing lots of hats at once, which I noticed in the Kickstarter campaign, which is so cute. I love that.
TOPHER – [LAUGHTER] You’ll hardly ever see Kirby without a hat, or multiple hats. So one of Kirby’s things is, is that he’s a very sensory-centric kid, and he lopes, which means he runs away. And when he has an urge to run, I mean he just needs to run. And he doesn’t really pay attention to safety or direction, or have a destination in mind, but he’s taken recently to wearing sort of a nautical captain’s hat, which is quite helpful when I need to call in, you know, the National Guard – well, I’ve never had to go to that level, but – to help search for him because it’s like well, he’s the kid wearing the captain’s hat from Gilligan’s Island or whatever.
TOPHER – But anyhow, he does love his hats and he’s a huge fan of, of trains and Thomas the Tank Engine in particular, and, in this group, in this population, are a lot of kids that love the cartoons that are essentially machines with faces. So you have a huge Thomas following, a Bob the Builder following, you know, these sort of things. And the reason is simple: facial expressions are very complex and difficult for these kids, and in this case, but they desire friends, and they have the same need for friendship that we all do. So a face that is quite structured and codified so that there’s only so many expressions, is easy for them to understand. So he’d loves that stuff.
TOPHER – And he’s a member of a Boy Scout troop for all kids with autism.
JANA – I read about that. How did you find that?
TOPHER – Well, my younger son was interested in scouting. I never did it. And when I called the local council, they asked if I had any other kids. I said I did, but the other one was on the autism spectrum. And they said, Wow, we have a dad who started a troop. So we found it that way. And Zandy’s in, kind of, the partner, typical troop, and they go on camping trips together. And the typical kids are like big brothers that teach the kids with autism. Scouting allows folks with disabilities to continue past the age of 18, so we actually have found other troops in the Maryland area and across the country that were very progressive, that have 50-year-olds that are on the spectrum, that are still working on their requirements, and working towards-
JANA -that is fantastic.
TOPHER – It’s a great program and of course, it’s topical because it’s on my mind, given a lot of what’s in the news cycle today. I did not do scouting, I’m not, as they say, a green-blooded scout. But my own experience of my boys has been that the organization has been incredibly accepting, and a wonderful resource to teach life skills and quality behaviors to both my special needs son and my typical son. So it’s a great – he loves that. He loves to go and camp, and do all that.
JANA – I’m guessing that your social circle has changed a bit over the years. How has it changed? And when you go out, how has your perspective shifted, based on how folks around you respond to Kirby?
TOPHER – So the isolation that comes with the shrinking social circle is a challenge for the community, in general. We’ve done a little better there, we’ve got a good core group of friends, but it certainly you know, has shrunk some. We don’t get out as much, and we can but it’s hard to find babysitters for special needs kids that [LAUGHS] lope in the middle of the night, or whatever. And I’d say we’re at the luckiest end of the spectrum.
TOPHER – But there’s a lot of very lonely, very isolated single moms, which is why the social media in the community is so strong. It’s tough, it’s tough for sure. And the trick is, is that even the folks that are empathetic, struggle to kind of understand the reality of day-to-day life with a special needs child. So it’s tricky. I mean, it really is. And as far as my perspective going out, obviously I’ve become an advocate for acceptance. I also am pragmatic and understand that a kid having a sensory meltdown in your restaurant is maybe difficult for your other customers, and how do you deal with that? And so forth. So it’s a tough time. For the most part, I’d say that we experience more acceptance than not.
TOPHER – I would say that the younger the folks are, you know, the better it gets. Like the kids that have grown up with these special needs kids, so in general, the millennial generation is more accepting maybe than the grandparent generation, just because they understand it, and so forth. And occasionally we have a bad experience. And those make me angry, and sad.
JANA – I can imagine. Can you give us an example?
TOPHER – Yeah, I would say that we were with the grandparents in Cape May, New Jersey, and we took Kirby out. Kirby loves to dance. He’s got one of my friends who’s a musician, and we take him and we dance. And we’ve had a number of experiences where folks have been critical of him or my parenting in that scenario. So you know, we had this example in Cape May, where an older gentleman at a table there by the dance floor sort of did the, you know, the circle with the finger and pointed at Kirby – you know, next to his head, pointed at Kirby. And all Kirby was doing was dancing. He dances differently, but he was just having fun, and I found that sad, you know, insulting… I was angry about it.
TOPHER – We had another situation, which is quite interesting, where I had him out with our friend who plays music, and we were in that sort of eight to midnight window. Kirby’s a night owl, he doesn’t sleep anyway. Three, four hours a night is all he sleeps. And he was dancing, and there was a table of young people there, and a young lady came over to where we were sitting and declared that she was a Special Ed undergraduate at the local college, and that what we were doing was cruel, and how can we keep him out? And he’d been covering his ears, which is how he manages sound level, and really, really lit into us for essentially being abusive parents to Kirby, when actually he was having the most fun he ever has with his uncle Dan playing music and doing all that. So that was tough.
TOPHER – I mean, that one had a positive outcome in that, at the end of the night Uncle Dan went over and explained to her, While your motives might be great as a Special Ed undergraduate, you’re not a Special Ed parent. And you’re not a special needs parent. And here, let me tell you, what you don’t know about what just happened.
JANA – Great.
TOPHER – Yeah, I think she and the entire table, who were all students in the same Special Ed department, took something away from that… that what they thought they saw and what was really happening weren’t the same.
JANA – Well-meaning, too, probably – the criticism, but still.
TOPHER – Sure it was.
JANA – That’s tricky.
TOPHER – Tricky would be a word we use a lot.
JANA – [LAUGHTER] Yeah, tricky. By the way, for listeners, I want to remind everyone that Topher’s wife has the same name as me. So when you hear him saying Jana, he’s talking about his wife, not me.
TOPHER – That’s right.
JANA – A very strange coincidence. How have you changed, over the years of being an autism Dad?
TOPHER – Well, I’d definitely say that I have accepted a level of flexibleness that maybe I didn’t have. I mean, I’ve always been… geez, I’ve always been a go-er and a do-er. I started a software company when I was in sixth grade. We sold early on. And so I’ve been a student of Business and Technology, and sort of had deep admiration for the leaders in the tech space, people like Steve Jobs and so forth, and imagined I would do great things one day. I didn’t imagine it would be a social engineering project for the autism community. And maybe – and I don’t know if that you can qualify.
TOPHER – But you do have to adjust your perspective on your ability to control and so forth. But there is a component of really coming to understand what the phrase carpe diem means, because we live for the day here, every day. And there’s a release in that, but it’s not always easy to let go of where you thought you were going, or the level of control or the speed at which you can get there. And so I would say the biggest change in me is, kind of a lot of work around my own ability to be flexible and adjust the play according to kind of what we’re dealing with on that day.
JANA – If Kirby doesn’t sleep much, are you getting up in the middle of the night, the two of you?
TOPHER [LAUGHTER] – Well, Kirby’s sleep pattern is a funny thing. I worked for a guy that only needed one sleep cycle, he slept four or five hours a night, and he didn’t have a family or spouse or anything, and it always seemed like he had a full day on me when he got to work. So it prepared me well for Kirby. There are lots of people that of course don’t need a full night’s sleep, that sort of one sleep cycle is enough. Kirby would be one of those, whether that’s from the autism or just who he is, I don’t know. So in the early days, we would do shift work, you know, one of us would stay up late, the other would get up early, and we would each get kind of our eight hours, but Jana staggered.
TOPHER – And later we did look for – as things got crazier and crazier, you know, Kirby `does receive a little drug called Clonidine at bedtime now, which is essentially a heart pressure medication that they use as adults, which for him, gets him through that wakeful period after his first cycle. And so we often now do get a second cycle, or part of one, so he’ll sleep six, seven hours.
TOPHER – And it’s tricky because we went through a phase where he would leave the house in the middle of the night and go to the 24 hour convenience store down the street, and how do you manage that? As they get older, they can figure out their way around most locks. You can’t lock the house down too much. What if there’s a fire? And anyhow, he’d shoplift the same three things, and the night clerk would call us up and we’d go over and pay up, early in the morning.
TOPHER – So these are the things – and these are just our things. Every family has their thing, if you’re raising a kid on the spectrum.
JANA – What are your hopes for him for the future?
TOPHER – It’s funny, you know, I remember telling the Easter Seals person when she asked that question, Well, you know, we hope we can, you know, really get him the support he needs early on, and he’ll be able to go to college and have a job and do these things, you know. And at this stage, we’re just hopeful that he has a happy, healthy life. And we adjust our hopes for the future kind of daily, because we don’t know where he’s going to end up, and probably won’t for another 15 years. As I said, You’ve got that huge makeover, the prefrontal cortex, between sort of 15 and 30. And so we’re only halfway down the journey. We’ll see what he can be.
TOPHER – But I have two themes. One is I don’t want to stop trying to educate him on reading and math, you know, the basic things that you need in life until we’re further down the track. That was my remark about our education system stopping too soon, switching to life skills. And we have a number of our circle of friends who are in the various trades. And you know, I like to do trades-oriented projects, like plumbing, carpentry, woodworking, different things. And, you know, he comes along, and he’s a helper. And you know, I could imagine a time when, you know, he was under the wing of somebody, and he was the person to help carry, and hand tools, and do this and do that. Maybe not the person with the expert knowledge, right?
TOPHER – So it would be nice for him to find some gainful employment, some way to feel – because this population also wants to feel, again, they have social needs, they want friends, they want to feel like they’re contributing. So finding a way for that to work is important. And that’s kind of one of the future things that we have in line for Autism Village. So as the community grows, and as we get some more small businesses that maybe people put in that are naturally friendly towards the autism population, and as we have more businesses that come into our autism-friendly program, we hope to put up a job board.
JANA – Oh, that would be cool.
TOPHER – We can – yeah – so that we can match the community sharing ratings and reviews with work opportunities. And, you know, there’s lots of big companies that are doing this. Microsoft and others have programs to hire people on the spectrum. But you know, not everybody’s ready to move to Redmond, Washington, or not everybody has a software savant with a higher functioning level of the spectrum. But there are a lot of kids that would happily assemble pizza boxes and help in a pizza shop all day long. And so the idea of a job board that’s very Craigslist-y, that connects our community with businesses near them that are willing to take on somebody on the spectrum, is definitely on our roadmap.
TOPHER – And what’s great for the businesses is that these kids find basic work rewarding in a way that a lot of other kids maybe don’t at their at their age or older, and they come with a support group, generally, to help them be successful. So when you hire somebody on the autism spectrum, you often get family and friends that are there to try and support them and make it work. And so to the extent that you can be flexible some, you’re maybe getting a whole lot for a little bit of money when you hire somebody from the autism spectrum.
JANA – And I think we can learn a lot, the rest of us, what you call the neurotypical crowd. There’s just so much to learn, what’s important in life and slowing down, and it’s amazing what we can be taught through folks like Kirby.
TOPHER – Yeah, I think that’s right. I think there’s life lessons exactly like that. I also think there’s some fascinating stuff to learn about ways that different brains work. We start to talk about this as neuro-diversity instead of disability. Because these folks have abilities. They’re just different abilities. And if you read books like from Temple Grandin, who’s an autist, maybe the most famous one, taking in textures, or some of the books she’s written about how animals, maybe and the visual part of the animal brain and the autist brain are similar – of course, there’s some savants in the autism spectrum.
TOPHER – I caution your listeners that, beware the inverse of the corollary. So an unusual number of savants are on the autism spectrum, but a very small number of people on the autism spectrum are savant. So don’t go and say to your parents and friends who get an autism diagnosis, like well, is your child brilliant at math or what? Because the inverse doesn’t work. But you know, the large majority of autists are just typical people. But interestingly, there’s a math savant that’s on the autism spectrum, that wrote a book, “Born on a Blue Day,” fascinating view into how his brain works.
JANA – “Born on a Blue Day” – is that what it’s called?
TOPHER – “Born on a Blue Day” is his book, yeah. There’s an amazing jazz pianist, Matt Savage, who’s an autist. And so there’s interesting views from the higher-functioning crowd that can articulate the way their brain works. And there’s more and more books coming out. And I think it’s fascinating for us neurotypical folks because, you know, we really do get a view into a completely different operating system in these in these brains.
JANA – I love the phrase neurodiversity. I’m learning all kinds of new phrases here. Topher, what do you want people to know about autism that they may not know, other than what you’ve shared?
TOPHER – Geez, I just want them to be aware and curious, right? Because the level of understanding is still low, and as parents and as a community, what folks with autism and families with levels of autism really need is a world where people understand and so can at least, when it’s appropriate, help make things work out for a positive outcome. So there’s a wonderful book from an author, her name is [Ellen Notbohm], called, “Ten Things Every Child with Autism Wishes You Knew.” And there’s a free abstract to that on our website, you can Google it.
TOPHER – But you know, what I guess I want people to take away is, listen, this is a large and growing population and be curious about it and understand it just a little bit. Because most of the time just offering a hand or a kind word or something is all that’s needed, versus kind of putting your head in the sand because you don’t really know what you don’t know and you’re afraid to do the wrong thing. So I guess that would be my final thought on what I hope folks take away.
JANA – And where can listeners learn more about Autism Village?
TOPHER – Autismvillage.com is the main website for the Yelp- like service, and the apps are free on iTunes and Google Play. And then Autismfriendly.com is the main access for the training for anybody that’s interested in taking the training or businesses that are interested in it for their staff.
JANA – Topher Wurts. He’s the CEO and founder along with his son, Kirby, of Autism Village. We’ll have a link on the Agewyz website to the books etc. that Topher has mentioned during the interview, and you’ll find links on the Agewyz website to Autism Village, Autism friendly… Topher, thanks so much for being on the show and keep up the great work.
TOPHER – Thanks for having me. And obviously I couldn’t turn down an interview opportunity from somebody named Jana. [LAUGHTER] So – it was great to be here.
JANA – Thanks, Topher.
Scattered: My Year As An Accidental Caregiver is available in paperback and eBook at
