Podcast Episode 31. “We all want friends, a misconception about people on the spectrum is that they don’t want friends”Jamie Wheeler tells us in this week’s podcast. Jamie runs Austen’s Autistic Adventures, based in Richardson, Texas, a social group where people over the age of 18 can meet friends and engage in fun activities to develop their social skills.
Jamie explains that when her daughter graduated from High School, she lost her peer group as people moved on with the next stages of their lives. Where her daughter had once found comfort in the school choir and theatre groups, there was suddenly a void.
Determined to ensure that her daughter didn’t remain alone, she gave up her career as a college professor and launched a programme that was financially accessible to all and provided daily activities to allow members to experience real friendship relationships and reap the benefits of being part of a social group.
Jamie talks about the challenges of setting up the project and the ongoing battles she has with funding. She talks about the difference it’s made to young people’s lives and the future, as well as top tips for anyone who’s considering setting up something similar.The main struggle Jamie faced when setting up was not knowing where to find people. She faced this challenge head on by using social media, setting up a website and getting the programme out by word of mouth.
Jamie tips for setting up similar groups include
1. Stay community-based
2. Talk to small businesses
3. Have a great social media presence
4. Be truly dedicated to it – don’t be afraid to talk to others
Jamie believes that daily interaction with others, both on and off the spectrum, improves social functioning. This is the case at home and in the community. Furthermore, by going out every day, the community at large gets to know people with autism as individuals, which leads to more, and better, employment and volunteer opportunities.Show Full Transcript
DEBRA: Welcome to episode 31 of the Journey Skills podcast. Jamie Wheeler runs Austin’s Autistic Adventures which is a social group for people over 18 where they can make friends and engage in fun activities so they can develop their social skills. Jamie explains more about it so there’s a link in the show notes to the website if you want to read more about the project, how it got started and a little bit about what they do.
If your children are older, I think you will resonate with what Jamie talks about where she says once you live education, your friendship network can write down quite quickly and just disappear. This kind of applies to everyone when they move on from school anyway and go to university or go to work and what’s different is that now children will not move as seamlessly into another friendship group.
I’m already thinking that in a couple years when my daughter finishes full-time education, it’s going to be a pretty big upheaval for her. She’s been in her school for a number of years and build up some friendship groups there. And while they see each other at school every day, they don’t live that close to each other so once this chapter of school finishes and then they won’t necessarily find it that easy to keep in touch. I’m not sure my daughter will keep the friends she has made in school. I certainly try to help her but relationships don’t come easy to her and I wonder if it will become a case of out-of-sight out-of-mind.
So, a group like this would be incredibly valuable for my daughter and maybe when the time comes, I or someone I know will create something like this based on the templates that Jamie can give us.
Jamie also talks about the challenges setting up a project in the ongoing challenge of all finding enough funding. She talks about the differences it has made to young people’s lives and the future the project. And she gives some top tips for doing something like this.
Jamie has a fantastic focus and enthusiasm and I have no doubt that the plan she has for the future will come off and that she will continue to make a massive difference to young people’s daily lives.
DEBRA: Today I’m talking to Jaimie Wheeler who’s the founder of Austin’s Autistic Adventures which is based in Richardson in Texas. Welcome, Jamie.
JAMIE: Hello, thank you for having me.
DEBRA: Can you tell us a little bit about your organization? How you got started?
JAMIE: Sure. My daughter is now 20 years old and when she graduated from high school, she immediately lost her entire peer group. She was involved in choir, she was a little bit in theater, she didn’t have one companion anymore because people graduate and they go off to college and they get jobs and they move away.
Also, I don’t know how it is for where you are but in Texas there are many things to do for kids on the spectrum when they’re under 18 but once they hit that 18-year-old wall, these things just go away. So even religious organizations like she’s involved in Young Life, they now have a cut off of 22 and I wanted her to have something in place so that when she turned 22 and got kicked out of the only remaining social group she had, there would already be something very much in place for her so she didn’t feel abandoned once again.
I was a professor when I started this. I was still teaching and I just thought there has to be others out there like her but I didn’t know for sure. So, it’s just kind of taking a chance and then 5 months later, it became very apparent that I could either teach or do this but I couldn’t do both. So, I took another leap of faith and turned down my summer classes and told my husband, “We’ll see how it goes over the summer. If I think we can make this successful then I won’t go back to teaching.” By July, we had all kinds of media coverage and just I couldn’t believe how fast we got up and running but, in a way, I’m not surprised because there’s nothing out there; social wise for people over 18.
Things that she can’t attend occasionally like an art class or something like that but not something where she could have peer group back in place. So yeah, I wanted to start a program I wanted to do. There were things that she had attended before like week-long camps. Those camps were very expensive. So, when I designed my program, I made my activities five days a week to have that consistency of experiencing social skills with other people on the spectrum. I also made it all a cart so if you wanna come bowling but you hate roller skating, you don’t have to pay for roller skating, you just come to the things that you want to come to. I also decided that my program would be very affordable. While there are some things for people that are of high means, I guess, make a lot of money, there’s nothing for people that aren’t so fortunate and I wanted everyone to have a chance at experiencing friendship and getting the benefits of having a social group to do things with.
So, we go out five days a week to maintain that consistency and we make things affordable and like I said you can choose what you do. I even have the option of coming or not coming right into the last minute. Our events are about $20 for 2 hours, we go all over the city, we do all kinds of things to make sure that they’re getting a variety of experiences and that our community gets to know our group and they get to know them and vice versa.
Another important component of my program is having the community members share their skills and passions with us so while we do to find things like bowling, (yesterday we went to an art studio and made art) we also have people share their skills with us. So just all kinds of things, we’ve had shops, cooking with us, we take corporate tourists, we toured the corporate offices of Chucky Cheese. We’re about to tour at a fast food corporate office called Raising Cane’s but we just try to go everywhere and do everything. I also try to mix up their experiences so that they’re always being challenged in a new social situation.
We do have some recurring events because they’re just popular like art or swimming or bowling but I really go and spend several days looking for new opportunities.
DEBRA: How many people have you got involved now? How many young adults are you helping?
JAMIE: We have about 45 enrolled in the group. We have about 25 to 30 that are active and when I say active, they come 2 to 3 times a week. I never make a demand on anyone that they have to come. But to get the full benefits of the group, coming 2 to 3 times a week to spend time with those friends and do things, I think has been important. The other 15 to 20 they can come occasionally and well that’s fine, in my opinion, they are not getting the full benefit of what I’m trying to do here. But if that’s all you can do, that’s all you can do. We hope to encourage those once or twicers to see how good the experiences for them and to come more often.
DEBRA: What were the biggest challenges when you were setting it up?
JAMIE: Honestly not knowing how to find people. My background is in literature and like I said my entire peer group is professorial and academia so I didn’t know where to go. So, I created a website and then it just kind of grew from word of mouth.
Our biggest challenge right now is funding because I keep the prices so low and because this has to be my full-time job, we are kind of struggling once a month just to keep things afloat and we are trying to become a public 501(c)(3) rather than a private. That’s kept us out a lot of grants and other opportunities. We also need to have been in existence for 3 years to get some of the bigger grants so just kind of dog paddling until those kinds of things can happen but I really don’t have any doubt that they will, it’s just kind of a nail-biter sometimes keeping the program funded.
DEBRA: How do the young people find you?
JAMIE: Well, as you know, a lot of people that are moderate to high functioning to Aspergers have great social media skills so I made sure my social media was very prominent. Every single day, I post up pictures of our events on our Facebook page so that they see them, their friends see them. It’s really just been a complete grassroots effort. I go out and talk to every all small business owner in our community. They know people. It’s not hard to build that up because everyone I know knows someone with autism. It’s just incredible everywhere. I keep brochures and business cards in my purse because somebody will say, “Oh my cousin has autism or my niece or nephew” or what have you. So yeah, that’s not been a problem. Right now, we’re trying to manage the growth right now actually.
DEBRA: That’s why the questions I was gonna ask, you said about funding but where do you see the future? You wanna get more funding, do you wanna expand the group?
JAMIE: Yes, we want to. We’re actually in talks with an organization called 29 Acres here in Dallas. They bought 29 Acres in a city near Fort Worth Denton but they’re gonna have permanent housing for people on the spectrum because our biggest fear as parents, as I’m sure you know, is what happens to us when we can’t take care of our children. So, they came to us. They found us online and want us to provide the social component for their program and what we have we hope to grow it is by having groups like mine in other parts of Texas, other states, and perhaps all over the place; teaching my model to other people who are interested in doing so because right now, Texas, as I’m sure you know, is a huge state but I have people driving an hour and an hour and a half to come to my events every day. Well not every day, but every time they come. But I have people in Fort Worth and Arlington and all these surrounding areas that will drive to me because there’s literally nothing else. We are the only daily meeting social group of its kind in the country. Nobody else is doing what I do. So, I think that makes us, of course, unique.
I wish I had parents around me right now to testify as to the help the good it’s done, how it’s improved their family life, their child is happier, more outgoing because we all want friends. I think the misconception about people on the spectrum is that they don’t want friends, that they don’t care, they’re isolated, they’re interior but that’s just not the case. They actively look at my events every day to see if their friends are coming. Even though the group changes from day to day because some people come on one day, some people come in another day, they all know each other now and they’re excited to see each other.
So, we want that same experience to be available in different quadrants so our events are 2 hours long; 90 mins to 2 hours and some people say, “Well why can’t you do this all day?” and I say, “Well, first, it would kill me.” [Laughs] “Secondly, that’s about how long our kids can tolerate.” So, 2 hours seems to work perfectly and I’m sure you’ve been with people on the spectrum, they’ll tell you when they’re done, right? “I’m done! Time to go” 90 minutes to 2 hours seems to be that perfect window for having that daily experience of social practice but not going overly long so that they don’t get overwhelmed and don’t want to come back.
DEBRA: You mentioned there about trying to, so I suppose so much like a franchise, isn’t it, where you can expand it out so more people can use it? What would be your top tips for people that is trying to do something similar, you’ve been through it, you know what it’s like.
JAMIE: State community-based talk to small businesses, get a good social media presence out there; Instagram, Facebook especially. Be dedicated to it, don’t be afraid to knock on doors and be afraid to talk to people. I guess, I don’t know what really to say. You have to be really dedicated to it. It can’t be just like a meet-up group that occasionally comes together and I think for them to really see the benefits, it has to be something that you’re committed to on a weekly basis. It requires a lot of effort to go out and just make sure there’s appropriate things for the kids to do and to be there with them and to see if they are having a good time.
For the kids, I think what they see is just the tip of the iceberg. They just see themselves going out and having a good time. But we, as parents and caregivers, know that talking to one another, practice having interactions, practice being social in different environments all the time, and practicing social skills with each other, not just the outside world.
Our trips are usually in the city within 30 minutes but we like to go and take some day trip sometimes too, so one day, we were going out to this tiger preserve. It’s about a 90-minute drive from Dallas and because it was far, I took a bunch of kids in my car with me on a small SUV. It seats 5 uncomfortably, so I have 3 autistic adults at the backseat, my daughter in the front seat. I was driving and we hit some construction and our 90-minute drive turned into two and a half hours. So, at first, they were all talking. Talking, talking, talking over. They were all talking about their individual interests, talking over each other. Nobody could hear what anybody else was saying and they just figure out about half an hour if they didn’t shut up, that they would not hear. They would not be able to say what they wanted to say and nobody else would be either. So after about the first half hour, they started naturally taking turns, talking. And then on the way back, there was a rack so we had another two and a half hours on the way back, and they practiced again. So that’s not something that you can control or it’s not something that will happen in a classroom. I mean, you can sit on a social skills group and say, “Okay, well, what do you say if someone says this?” Right? But for us, it’s letting these things happen organically. Practice their social skills. If they’re in a noisy place, getting used to that but not letting it overwhelm you, not having mom take you out the second you feel uncomfortable. Just kind of working through those feelings like anybody does, I guess, they get scared by something.
I have so many stories. We have a kid with us now who’s a very soft spoken and we played bingo together once a month and he got to be the bingo caller a couple times ago and his friends couldn’t hear the number he calls like I-20 or what have you, unless he spoke up and nobody had to say to him, “Logan, Logan, Logan, speak louder.” Well, they kind of do because they’d say, “What? What?” So, he now calls Bingo man, you could hear him down the block. He’s so loud now.
Every single one of my kids has a story like that where they’ve learned to either speak louder or not speak at the same time or getting over a fear at something, conquering some phobia. Honestly, if I had my parents around here, I could sit them all in this chair and they could each tell you about how this has improved, not only their kids’ life but their family life.
A kid that wasn’t able to go to restaurants a year ago, now happily goes with his family all the time and that’s not something you know that I did as an ABA therapist, we just went to restaurants and he works through it. He didn’t get his French fries cut the way he wanted to, life goes on. That’s what we do; just practice, practice, practice being out in the world.
DEBRA: Yes, those real-life experiences, aren’t they? Because I mean you mentioned before about children like these being seen at home once they get to 18. We have exactly the same problem in the UK that there’s nothing after 18.
JAMIE: And the thing is that, they’re not unhappy being in their room, necessarily. My daughter, she’s happiest when you leave her alone with her laptop in her bedroom. But like Dr. Grandin says, “The best thing you can do for people on the spectrum is to introduce them to new things.” So that’s what we do, new things, new things, new things all the time. Not letting them get in that comfort zone. It’s nice that the group always changes, so it’s not the same click of friends every single time. And the location always changes. Even if we go do bingo, it’s not always on the same day, might be on a different time. So, kind of always shaking up that rigidness that a lot of them experience and had been catered to because we know it’s easier sometimes to give in to their demands. And I’m not saying I’m perfect. I mean, I’m like sometimes I go like “Oh, whatever! Go in your room” for my daughter, it’s good for her. She loves being the ambassador of the program. She loves that her name is on it. She is my best person when we go out to visit people or do fund-raising, she’ll get right in their face and say, “Hi, I’m Austin and we need money for our program, will you give us some?” [Laughs] It’s hard to say No to her.
DEBRA: Thank you so much for talking to me about this. I love the idea when I found this and I thought this is brilliant. And I hope when people listen, they get some ideas for doing it themselves because I think that’s the key, isn’t it? Sort of helping people do something similar.
JAMIE: Yes, it is. That’s what I want to do. I do have kids, like you, contacting me from all over the world. I have a kid on Instagram that knows everyone in the group now. He lives in North Carolina but if somebody hasn’t been in the group in a few weeks, “Where’s Matty? Where’s Joseph?” So, they’re hungry for that, all over the world, not just here, of course. So, I hope this has helped in some small way, encourage you and your listeners to go to my website, my Facebook page. I don’t think what I do is proprietary. I think anybody can replicate it, it just requires some dedicated effort and it can’t be just the “Oh, this looks fun”. It is a full-time job for me. More than a full-time job, I work 7 days a week to make it successful.
DEBRA: Well good luck with your fund-raising. You certainly deserve to raise those money. Thank you very much for speaking to me.
DEBRA: Key takeaways? Think local if you’re thinking of doing something like this. Find support from your own community. Do your research. Funding is going to be key. Reach out to people like Jamie who have done what you’re looking to do.
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