Raising An Autistic Child [Interview Transcript]

Topher_Wurtz_Autism_Village

Presenter: Neal Howard
Guest: Topher Wurtz
Guest Bio: Topher Wurtz is an autism dad and a career media and technology company exec. He is applying his professional experience to a very personal issue, autism, to improve life for millions of autism families. He is the Autism Village founder and offers a better understanding of the obstacles in daily life for the 3 million U.S. families who are living with autism. Autism Village is in the midst of it’s first release of a new Mobile App that will work like Yelp or TripAdvisor to help everyone in the autism community.

Segment overview: Topher Wurtz discusses some of the challenges associated with raising an Autistic child and how his newly developed App can help.



Transcription

Health Professional Radio

Neal Howard: Hello and welcome to Health Professional Radio. I’m your host Neal Howard, so glad that you could join us today. Our guest in studio today has a very unique mission. His name is Topher Wurts and he is an autism father. Fathers an autistic child and a career media and technology company executive who’s applying his professional experience and knowledge to a very personal issue that being autism in an attempt to improve the lives of millions of people that are dealing with autism with their children or as adults. How are you doing today Topher Wurts?

Topher Wurts: We’re doing great. Thank you.

N: Most of our listeners are health professional themselves in some capacity or another. Many of which may be extremely familiar with autism but for those of us that aren’t familiar or maybe have a very limited knowledge of autism, based on your experience as an autism dad what is exactly is autism?

T: Well autism now refers to a broad spectrum of essentially neurological differences. So the children appear to be born with different neurology than what we would consider a typical peers. And as a result of that, they can be anywhere from sort of just unusual or quirky individuals, maybe they have some social challenges. They don’t make as much eye contact, that sort of thing all the way to kids that maybe will need support for their entire lives to live. So many are non-verbal, and some also combined, other situations like seizures or diet issues, allergies and such. So it’s a quite broad spectrum based on a neurological difference.

N: Now talking about, say, diabetes – you have pre-diabetes or diabetes type I, type II, and things of that nature. Does autism have such designations as to the severity or the degree or the types of the behavior that one would display or there’s different levels that are identifiable by other means than just the displayed behavior?

T: Nothing specific … you’ll hear folks talking about more or less eye functioning or more or less deep in the spectrum. But autism doesn’t have anything specific as diabetes. Maybe autism would be better correlated with something like Alzheimer’s or ALS or a neurological challenge where you have different maybe in those cases the things progress, whereas with autism maybe they’re more static within a life the person but nothing as specific as type I, type II, that sort of thing. You know thing bad it is, is that a lot of the folks that diagnose in autism spectrum with a fairly intensive and consistent social behavior, educational intervention from the time that their diagnosis is made maybe less than 2 years of age to when we all kind of become who are more less gonna be in our mid 20’s – with that intervention they can change quite a lot and we can help these kids to kind of live and succeed right just like the rest of us.

N: You are an autism dad. How many kids do you have?

T: I have two boys. And now they’re 13 and 14 that actually they’re 11 months apart and the younger of the two boys Kirby is autistic, he’s probably, he has a Classical Autism diagnosis. He might be considered moderately autistic or recently high functioning. He is verbal, we do have language and so forth but he goes to have challenges, learning, and so as a result he’s in specialized support classroom and so forth. Physically he is a very healthy kid, he swims, he runs like wind and so forth but when it comes to relationships with other peers at his age or his own brother and sort of, he has sort of social challenges there.

N: Now you know saying that he is the youngest of the two kids. There are tests through amniocentesis to that I guess identify certain genetic markers, is that something that you were never told about or is it something that you figured was not necessary to look into base on the fact that you had your first child and everything went okay or is it even a genetic disorder?

T: Well there’s a lot of work being done on genetics. Certainly there is a project between the big autism, non-profit autism speaks and Google to do like deep researching into the genetics large sample of the autistic population. I’m not actually aware of a marker, maybe I’m uninformed here in the you know what you could get from amniocentesis that might warn you of this like you could have with down syndrome. Currently you seem to be relatively typically developing in many of these kids are like this until he was about a year and a half or when we start to notice some differences. There’s lot of ideas about what might cause autism and some of them are kind of cooky, some of them makes some scientific sense but none of them seem to have been proven out yet. For our point of view, both myself personally and what the project does in Village, we’re not so focused on processing cures. There are lots of smart researchers working on that and we’re focused on trying to help families navigate the day to day challenges and then autistic adults navigate the day to day challenges of sorting world which is a little difficult to them.

N: What are some of the challenges for autism families and for the people who have autism themselves just in doing you know everyday things? But what are some of the challenges that you encountered that prompted you to create Autism Village and the app that we’re gonna speak about momentarily?

T: Well there’s really a whole host of things that as an autism parent you’re suddenly confided with so instead of just sort of pediatrician you may have developed and pediatrician that you then decided to purse some sort of pharmacological intervention, you’re gonna have a psychiatrist at school, you’re gonna have a special education teacher and specialists, potentially through the wrap around their behavioral support services of the state. At home you may have staff working with your child and you’ll be supervised by a psychologist and a behavioral support specialist and there’s lots of interesting therapies to trying to help the kid break out, sleep therapy, equestrian therapy, all those sorts of thing. So the first challenge is that you go from what would be a typical parenting scenario to one where you have a lot a lot of resources that you have to identify and coordinate. On the more practical side you know you may have to find a school place that works, you may have diet situations where the child seems to have an allergy to gluten or caffeine and you try to use a special diet. So you need to identify restaurants when you go out that will support that because the kids have lots of sensory issues – the light, sound, different things like this can challenge them and certainly crowds and so forth. So finding a dentist that understands autism and can work with this kind of kids or your regular pediatrician or you know like a barber, because a lot of them have hypersensitive to haircut – those things. So identifying places, resources whether it’s a school or doctor or just a restaurant, a barber or even a playground – a lot of them elope they run away. So that’s gonna be safe and work for you, is a challenges. So those are some of the practical challenges that are different when you’re raising a child on the autism spectrum.
N: You were in situation where you found out early on. Are there instances where a child isn’t diagnosed until later, say as 11, 12, maybe 15 years old or is this something that is easily identifiable at an early age such as your son?
T: You know it really depends on where the child is on the spectrum. So a very high functioning child may grow to adulthood. There are many adults that now believe that they’re on the spectrum and were never diagnosed. Children that show more classical autism and maybe a little deeper in the spectrum don’t become verbal on time. So for those children who are often diagnosed, they know it straight away at a young age, typically though sort of a year and a half old is about the earliest that you get enough, serves enough information to diagnose whether a child maybe autistic or not. The early diagnosis and early intervention professionals in many states they’re run by Easter Seals or some other organization are really quite good. They’ve been doing it for a long time and they can generally identify a lot of the things and of course one of the things that I tell parents you know it’s a tough diagnosis to get and so parents get defensive sometimes about it, and one thing that I tell parents is it’s better to be wrong and over diagnosed than to loss critical time when you could make a difference trying to help the child at a young age to adapt to a world that’s a little difficult for them. So I really encourage new parents not to be afraid of the diagnosis.

N: Autism Village, is that sort of a take on the fact that it takes a lot of people and a lot of resources? Tell us a bit about Autism Village.

T: In a way we did, we did take that. I think that if we trace that back long enough to may even go back to an old African proverb. But what we learned is it that there’s three million families raising kids in the autism spectrum, that’s growing now at 168 per one and half percent of at birth are being diagnosed such as autistic, it’s 1 in 42 boys. So it’s a lot of boys that have this challenge and it really is a community and it’s one way when autism families gather. We swap stories back at school, to dentist, to parks and so forth. And so we did take a play on that to create an app that would help really spread that word and help families all over the world to identify autism family places and that places of businesses and schools and services.

N: And this app that you’ve developed, it is integral in finding this resources, yes?

T: Yeah and the app is only really a vessel. So just like an app or service like Yelp or Foursquare, TripAdvisor. It really is dependent on the autism community to adapt it and to put places in and made and review them. But we have an enormous response through the kickstarter and all that is, our website – we have people adding businesses, adding parks, adding doctors, and restaurants and all manner of things with readings and review. So the idea of being a crowd source, the ratings and viewers from the autism community. And then when you’re traveling on your smartphone, you can see autism friendly places that are nearby you and likewise you can have add them, rate and review. So it really is a community service, we’re just the vessel for all that information.

N: And where exactly can our listeners download the app?

T: Yeah, you can go to autismvillage.com as our home page for updates and information. The app will launch in the summer of 2015 but online capabilities like the abilities to rate and review places are already up on our website and that’s the best place to keep track of what’s going on.

N: Some really great information. You’ve been listening to Health Professional Radio. I’m your host Neal Howard, in studio today it’s been our pleasure be talking with Topher Wurts. He’s an autism dad and a career media and technology company executive who is applying his professional experience to help to improve the life of millions of people who are dealing with autism – Autism families and autistic adults. And we’ve been here talking a little bit about what autism is and some of the challenges that those suffering from autism phase. And also about this brand new app that’s going to give people who are looking for autism friendly businesses and resources a leg up in their search. It’s been great talking with you today Topher.

T: Thank you so much.

N: Thank you. Transcript and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm and you can subscribe to our podcast on iTunes.