Transitioning into Adulthood

Introduction

Hello and welcome to the Autism in Black Podcast. I’m Maria Davis-Pierre, a Licensed Mental Health Counselor in the State of Florida, and America’s number one autism advocate for black parents. I am the Founder and CEO of Autism in Black Inc., where we aim to include the excluded. Today, we have Dr. Tara Regan, who is the Executive Director and Founder of Autism Grown Up located in North Carolina. Autism Grown Up is a nonprofit organization that supports autistic individuals, families, and professionals, as they prepare for and navigate adulthood. Tara is an autism sibling to two autistic adult brothers and has been an autism professional for over a decade. From working at Camp Royall to direct care work to research in schools. She has worked in a variety of settings focused on supporting autistic individuals, find success in their day to day to building meaningful lives as adults. I’m really excited about having Dr. Tara on today’s episode.
Because a lot of times we don’t get the information in our communities about our children transitioning to adulthood. We don’t really know how to navigate that and what it looks like. So, I’m really happy to have Dr. Tara on to provide us with resources, to tell us how we can best support our children and our loved ones. Enjoy today’s episode.

Episode

Maria Davis-Pierre:
Hi everybody and welcome to the autism in black podcast. Today, I’m very excited. We have a special guest, we have Tara with the Autism Grown Up Podcast. Everybody said hi to Tara. Thank you for joining us. I’m super excited to have you here. As some of you know, I was on her podcast and I’m very appreciative for her to return the favor and be on our podcast to let us know about Autism Grown Up. Because that’s something in our communities we really don’t like to talk about. So, I have done the introduction in your bio already, but I want you to tell us a little bit more about yourself if you don’t mind.

Dr. Tara Regan:
Yeah, no problem at all. So, glad to be here on your podcast and that you have it going to be a guess on here is so exciting. Thank you. So, I am a lot of different things in the autism community of my sister and I are joking because she was putting together a panel for her Autism Club on Campus and she was like, you could really be any of the three, like a sibling, a family member, a professional and a researcher. But because I am all of those. I am an autism sister, big sister. I have two younger brothers on the autism spectrum that are both in the growing up stage. So, that’s why they are the main reason why I started Autism Grown Up. Tyler is 27 going on 28 in January and then Tanner just turned 19 in November.
Which is just so bizarre as a big sister to think about. And then I’ve been an autism professional in the community doing a wide variety of things from social work on direct care practice working in recreational therapy. So, I worked at a camp for many years, still do also participate in a lot of different training programs. And then, recently finished my PhD in Education where I focused primarily on the transition to adulthood and looked at self-advocacy and how factors may predict self-advocacy for teens on the autism spectrum. And, as I was looking out in the job field after my PhD, I realized there are very few positions focus on the transition to adulthood and just brought her lifespan and type of things. So, even just in terms of the lack of reach and lack of resources from any organizations not to mention just research centers is just a huge gap, it’s a huge cliff after high school. So, that’s where I started Autism Grown Up and we are now a nonprofit and we have a community all centered on getting conversations going between everyone within the autism community. So, we’re talking about adults on the autism spectrum, family members, professionals, all coming together in one place to talk about adulthood and day to day things. And then, we also produce a wide variety of resources through our resource center. And, one of the resources that we do offer is the Autism Grown Up Podcast.

Maria Davis-Pierre:
Okay, perfect. I love your resources because as you said when it gets to after high school things dramatically decline as far as resources. Even when I’m talking with fellow autism parents, they don’t think that our children actually grow up into adults and still need resources. Some of the waiting lists are like three, four years long and we all know that any kind of gap in services can have a regression. So, I think it’s wonderful what you’re doing and how you’re advocating out here. Another thing that I want to touch on with you is when do you think us parents of children who are autistic or caregivers, when should we start thinking about adulthood for our children and what that looks like for them?

Dr. Tara Regan:
So, this is not an easy answer for a lot of parents here sometimes especially, I’m in North Carolina and we think that we have a lot of resources here because we have the teach center. We have a variety of other big autism resources in the community, but I always like to say, you should start as early as possible. So it was just start today, whatever age your child is, you should be start thinking today. So, when I have at a table out at a conference or an event and I see some families come up to me, they start turning away. Because they’re like, oh no, my child is 5, 33. I’m like, no, come back. You need to come over and talk with me because you need to start today. And there are so many different, not to mention you already said the wait list can be very long. The wait lists are actually up here in North Carolina, 10 years to get services.

Maria Davis-Pierre:
Oh, my goodness.

Dr. Tara Regan:
So, they have these families should be applying for the Medicaid waiver as soon as they possibly can. And then when they finally do get those resources, hopefully those would link up with what they’re currently doing in the community. So, I always encourage families when they’re thinking about adulthood to think about specific skills and the supports that will be promoting success and adulthood. So, these are things like self-advocacy and daily care skills, independence, independent living and then supports of like getting out in the community and knowing who your people are that you go to, who are the people that you can turn to in, maybe it’s a store that your child likes to go to all the time or a restaurant or the other like local small businesses. Those are great places to have people that you know, are on your side that you’ve developed relationships with. There’s a lot of great meetup groups now, so I point those actually to a lot of my families now.

Maria Davis-Pierre:
Perfect. And we’ll have some of those resources in the show notes for everybody as well. I know for me and a lot of the parents that I’ve talked to when dealing with our children and advocating for them, everything is so present focused for us like we’re in the moment. So, a lot of times it’s hard to think about two years from now, three years from now and also because things change so much with our children. My daughter changes so much in a year that sometimes it’s hard for me to even think about, what the next steps are because sometimes I just don’t know. So, for the parent who just doesn’t know where to start, what can they start doing today? What are some of the things that they can say, okay, this is something that will help my child in adulthood?

Dr. Tara Regan:
Absolutely. There are a few things focused on independence that I always like to hone in on. Because without us realizing we can take some time to route to take stock of what are the things we’re doing for our child today that we would want them to be doing by themselves. And the next couple of years. We tend to give a lot of prompts. This is something that special education teachers take a lot of data for themselves on, in terms of IEP goals. Ideally, they’re supposed to be putting those in there but those are things that encourage parents to be thinking about too. Like how many times are you’re telling your child to brush their teeth in the morning? What are ways to back off from that? So, they don’t become prompt dependent over time because that’s also the shadow side of not building independence skills over time is that your child can just eventually become so dependent on you telling them to go brush their teeth. So, something that could help with that is creating a visual support or a checklist that your child can go through. So, independence is a main thing. And the other part of it is self-advocacy, so providing choices, giving opportunities for your child to make their own decisions and ownership of that can help them along the way too. And that also increases their motivation for doing some other activities that they’re not the biggest fans of too.

Maria Davis-Pierre:
Perfect. I love that you talk about the self-advocacy portion and getting their opinion. I think a lot of times that because, our children, our siblings, people in our family have the diagnosis of autism. A lot of times we think that they are not able to think for themselves or have an opinion. And a lot of times, when I’m asking my daughter’s opinion and, giving her that time to process people are you’re asking her, she has an opinion, but she does have an opinion. And I want to include her in those things. So, I’m very happy you brought that piece up. And then the independence. So, in the black community, this is where things get tricky sometimes with the independence and the self advocacy, because our children are 18, but a lot of times we’re thinking if you’re still in our home, you are still a child as well as the caregiver portion of it and letting those rains go. So, in the black community a lot of this talk is difficult for us thinking about our children growing up and then being 18 and technically being an adult, but I still having to make decisions. So, how do you navigate that when you work with black families and what advice do you give them?

Dr. Tara Regan:
This has definitely become a major theme that I focus on probably first with black families, because it does increase like they’re buying towards thinking about other people coming to come to services too. Because I think a lot of families, I’ve worked with not just black families, but also families of color broadly do not really apply for the medical, the Medicaid services, at least the families I’ve worked with because they are unsure what those looks like too. But so eventually we get to that point, you’re talking about that, but the main thing is breaking down what chores and what day to day things could look like and start with those first steps there. And also bringing, and if they have a chance to come see the student in the classroom, I found that can be really helpful too.

Maria Davis-Pierre:
And then for our autistic individuals who are 18 and they’re going to college, where the parent doesn’t even have a lot of say, because at that point the child has to take the reigns over. So, the parent can’t be there’s no IEP meetings, families for a college level, for those of us who don’t know that there’s no IEP meetings, IEP does not go over into the college level, the five or four plan does. So, usually we’re so used to having the meetings yearly, having these goals created. And then when, your child goes to college that all stops. So, how does the parent prepare for that as well as preparing the child for that?

Dr. Tara Regan:
That’s a great question and this is also a tricky area too, but I tend to like to introduce us, as early as possible. So, parents get more used to this by the time their child is reaching 10th, 11th, 12th grade is getting their child to come to the IEP meeting. It doesn’t have to be the whole meeting, it could just be a segment of it. A lot of times, I’ll have a student just prepare like a quick PowerPoint or drawing. Just the things that they’re interested in, some of their goals, those types of things. And of course, grows in intensity or more involvement from the student as they get older, to get them more involved in the IEP meeting, getting them more involved in the goal writing process and make it a meeting at sophomore student focused and sometimes a little bit smoother overall for everybody if the students in the room.
But that also helps a lot of families especially a lot of black families I’ve worked with, I actually had a separate IEP meeting. We didn’t call it an IEP meeting at the time because of course you have to have everyone in the room, but introduce the idea of the IEP meeting with the student being there, involved in the process and that helped a lot of parents.

They tended to find the idea more of something of interest for them, or more motivating to have their student in the room, because then they knew that they would be on their side too. So, then also getting students to advocate during those processes and high school on building upon IEP meeting and maybe getting them to request their own accommodations and building upon helping them advocate for their needs while in school can promote them being more successful in college in requesting their 504 plan and their accommodations, because that’s also on them. Like the parent cannot have any input whatsoever, once our child gets to college, it’s all almost student.

Maria Davis-Pierre:
And I think that so not what we’re used to. And I love the idea of having the child in their IEP meetings, which, starting at 16, they’re actually supposed to be in the meetings because that’s when transitional planning should start. But, I always recommend if you guys can start in middle school around that age, that have your child start to attend the meetings at that point. Because, as Tara has said it’s never too early to start thinking about what the future may hold for your child. So, as early as possible and have them in the meeting. And, I love that idea about the PowerPoint for them to express what they’re into and things like that. I love that idea.

Dr. Tara Regan:
Make the whole thing a lot smoother overall for everybody.

Maria Davis-Pierre:
Yes. I never would have even thought about a PowerPoint. So, I’m actually going to start telling the parents that I work with and, to have their child create a PowerPoint, even a social story, anything that, they’re able to do to show what their interests are. I think that’s a great idea to have them showcase that in that way. Because a lot of times, some of our children don’t want to be talking and have that center of attention in those meetings. It can cause anxiety. So, I love that. Those are different ways that they can still communicate and get across to the team what they’re interested in. So, for the child who’s, let’s say it’s 21 and their parent hasn’t even thought about this transition to adulthood, even though they’re in adulthood, what would you suggest for them to start doing to today to help them with that independence level and the self advocacy and what resources are out there for them that they can go to? Because at this stage at 21 a lot of things are not out there for them. So, what would you suggest if the parent has not done anything?

Dr. Tara Regan:
They haven’t done anything. They can definitely come to the Autism Grown Up website. We’ve got a lot of great resources on this particular stage and because a lot of families are in this boat. Unfortunately, they are learning that special ed services. And at a particular age, maybe they didn’t know some families, unfortunately don’t know that they can go until 21. And it’s too late in their child’s about to graduate or thankfully they’re able to extend until 21. So, that’s our site is definitely more of an online resource. We are able to contextualize based on where you live. If you get in contact with me, I’m happy to chat with you all about that. There are a lot of also great resources from local autism societies about this, especially the autism society of North Carolina. I found that they have a lot of great transition to adulthood resources out there. Just like a checklist. One of the main things that we have is a lifespan checklist. So right at 21, we have a whole thing of user the things take looking at where you are with services in the community. Have you applied for the Medicaid waiver and social security income because that’s also a financial support that many adults with disabilities, including adults on the autism spectrum can apply for. And then looking at options in terms of, do you want to pursue any further postsecondary education with your child? Do they want to go look for a job? There are a lot of great job resources out there now. There’s a great one called Higher Autism, and I can send you the link for that. And they have a lot of great information on career exploration. If your child hasn’t started thinking about careers at all whatsoever, they’re a great resource for that. And they also give you a set of ideas of what it takes to get to the point of developing career interests helping your child along the hiring and interview process for getting a job. Jobs are a major thing, especially for adults on the spectrum, because even researches shows that even like six years out of school, only 10 to 20% of adults on the spectrum are employed whatsoever. So, if they’re unable to get to any work-based experiences before 21, that’s totally fine. That’s still something they can start then. So, those are kind of the main areas on looking at career experiences, looking at postsecondary education options and then community services.

Maria Davis-Pierre:
And, then for the autistic individuals who don’t have the support of parents and caregivers and they’re navigating it on their own with those same supports, be resources, be available to them to go to and look at and help get their resources for employment, or if they want to go to college or, whatever they want to take to their next step.

Dr. Tara Regan:
Yeah. They’re actually, most of these resources are written like directly to be adult on the spectrum. So, parents who are looking for this information could actually pass this along to their adult children too.

Maria Davis-Pierre:
I love that. And that also reinforces, independence and things like that. Because I know, a lot of times, we want to be careful of parents. I’m talking to myself and you out there of ableism and how we don’t think that our children can do certain things, but they’re perfectly capable of doing these things and having the independence. If we just let the reigns go just a little bit, I know that’s scary for a lot of you including myself because I am a helicopter parent and not just to Malia, but to my twins as well, I’m always hovering, so I have to get used to their independence and it is scary for me, but it does also show that we have prepared them to have that independence. So, just let it, let the rain fell just a little bit.

Dr. Tara Regan:
I let it go just a little bit and you can see that you’re close enough to see what happens and if they fail, that’s okay. That’s totally fine. Especially when they’re so young too, but also when they get older as part of like, just accepting that person’s dignity and understanding who they are and looking back on yourself, that when you were their age, you were also making mistakes too.

Maria Davis-Pierre:
Yes. And I have made a lot of mistakes, but that might be for another show. So, what advice do you want to leave for our listeners about adulthood and transitions?

Dr. Tara Regan:
Absolutely the main thing is to start today in terms of thinking about adulthood and also start thinking about that with your child on the autism spectrum. And, other family members involved because they’re a part of the support network too. And, other people that are a part of your support network, they are part of your child support network as they get older, it’s all takes a village for sure. And start working with your child and thinking about what are their goals for the future. You can be having these conversations with them in whatever ways that you connect with them best. And just keep having conversations, keep trying to find ways to empower them, to make their own decisions, whether that is starting small with just giving choices at different meal times or different things at night when they’re getting ready for bed, do they want to read a book or watch the show with you? That type of thing, and that will build over time.

Maria Davis-Pierre:
I love that. So, tell the listeners how they can find you.

Dr. Tara Regan:
So, they can find me, I’m all over every social media platform, just to get our word out. But the main place that they can find me is on Instagram, where I am on at Autism Grown Up. And then they can also go on our website, which is www.autismgrownup.com

Maria Davis-Pierre:
Yes, and can you tell us a little bit more about your community? I have to tell you guys, I’m a part of her community and I get a lot of information from her community. So, if you have the chance, please join, you can join now. Like I said, Malia is seven, but I’m already a part of her community.

Dr. Tara Regan:
Yes. We are so happy to have you in our community because we are growing, we have almost 200 members and its people from all over the world too, who just want to connect and learn more about adulthood and we would love to have you there.

Maria Davis-Pierre:
Yes. And I will have all of the resources we talked about today in our show notes, as well as all of Tara’s Instagram, Facebook, website, all of that will be in the show notes. So I just want to thank Tara for coming today and talking with us and sharing all of this great information.

Dr. Tara Regan:
Well, thank you. Thanks so much again for having me.

Maria Davis-Pierre:
And thank you all for listening and I hope to see you in the next show.