Episode 9: Empowering Individuals and Building Community at Asperger/Autism Network (AANE) – with Brenda Dater
Jordan: Welcome to the Plan for Special Needs Trusts podcast presented by PLAN, the Planned Lifetime Assistance Network of Massachusetts and Rhode Island. Our plan is your plan, and I'm your host, Jordan Ridge. 

On today's podcast, we're joined by another wonderful partnering organization with PLAN of Massachusetts in Rhode Island. It's the Asperger Autism Network, which provides individuals, families and professionals with information, education, community support and advocacy and has made such a difference in the lives of those with Asperger's and autism and their families. 

Today, I sit down with the new Executive Director of AANE. Her name is Brenda Dater, and everyone at PLAN is certainly excited to be working with her. Delightful to welcome you, Brenda and congratulations on your recent promotion to Executive Director status, following the founder of the organization. Tell us a little bit about her and about that. 

Brenda: Oh, sure. Thank you. And it's such a pleasure to be with you. Tanya Jacko was our founding Executive Director, and she founded AANE over 26 years ago. And I have worked with her for the past 15 years on staff at AANE. She was incredibly inspirational. She was incredibly innovative, and she created this very strong and unique organization. And a few years ago, she started thinking about her retirement. And at that time, I was on staff as Director of Children & Teen Services. I moved into an Associate Director role and worked very closely with her, partnered with her on that. And about a year and a half ago, we started doing a succession planning process with the board. That was a really robust and interesting process, really thinking about the future of the organization and where we want to go. The succession planning committee back earlier in 2021, a few months ago, after going through an interview process, offered me the position, and I gladly accepted. And so then Donnie and I worked very closely together the last few months, especially preparing for the transition. It's been very smooth. 

Jordan: That's great. Well, Congratulations. And it's interesting if you take a look at where it all started about 30 years ago and what people were talking about, I'm talking in the general public what people knew about the terms and even hearing the word Asperger's was rare back then. So you've probably noticed in the 15 years you've been involved, quite a bit more attention given to this, at least in the public eye. 

Brenda: Oh, sure. Back in 1994, Asperger's syndrome became a diagnosis in the Diagnostic and Statistical Manual. And Tanya and a group, a small group of people, realized there was this whole group of individuals who weren't being served and held a conference about Asperger’s syndrome and thought, oh, maybe we'll get a handful of people. And they were standing room only because there's never been a conference like that. There hadn't been a gathering. And at the end of that conference, one of the questions they asked people who were there was, is anyone interested in forming an organization and doing something. And people stayed. AANE back then, we were the Asperger's Association of New England was formed. And through the years now, this is not Asperger's, and autism is not an uncommon thing to hear about. It's not an uncommon thing to see in the public eye. And certainly we've seen quite the evolution of language. Asperger's is now out of the Diagnostic and Statistical Manual that's the manual that provides diagnoses. And so people are that language is evolving. People use Asperger's somewhat still, people use autism, they say, on the spectrum. But at Amy, all we care about is people use the language that works for them. 

Jordan: Very much so. This podcast, like all podcasts, can go anywhere. And so our discussion will focus locally, but also broadly because what you're doing is so important and there are so many millions around the world impacted by this. So we really appreciate you sharing a bit with us before we get to some of the interesting things that your organization is doing. And we'll talk a little bit about how PLAN has helped out with some of the folks you work with. You yourself have a child who has dealt with this situation. And maybe you could just share a little bit of your own personal story, if you'd like. 

Brenda: Sure. Yeah, I'm happy to. So I actually came to AANE as a parent. That's how I first learned about the organization. So back in 2005, I was a mom of three young boys. My oldest son at the time, he was nine years old. He was diagnosed with Asperger's when he was three. And my husband and I were considering a move from New Jersey to Boston. And I thought, I cannot move to another place with three young children and an autistic son on the spectrum without knowing what supports are there. So I Googled, like many parents do, in the middle of the night when my kids were asleep and I found AANE, and the next day gave them a call, and I just felt like I found my home. They understood what my situation was like. They understood the stress I felt about change that I might be putting onto my child, who really couldn't tolerate much change at the time. And so I thought, you know, I said to my husband after that initial phone call, okay, we can move to Boston and we're going to move next door to AANE because I have found my place and I haven't left since I joined as a parent. I started volunteering, and then a couple of years after that, I was asked to join the staff. So for me, the organization certainly helped me as a parent. But I think what I loved so much about AANE was that it's very holistic. It serves adults, it serves teenagers on the spectrum, and it serves families and professionals. And so it's all of us together. And I think that makes the organization much stronger. And I loved as a parent of a young child that I could come to AANE and I could see autistic adults, and I could talk to them and I could see what their lives were like, and I could see a future for my son. And it just warmed my heart to see this community where people were accepted and understood. Everywhere else I went, I felt like my son had to pretend to be something he wasn't. And at AANE, he never had. I didn't have to pretend about him. And now he's an adult and he comes to things here and he doesn't have to pretend. 

Jordan: It's a community, Brenda, and it's a thriving one. And we'll talk now about, if you don't mind, some of the free programming, because so much of it is available to people. AANE.org. I'll repeat that again later, of course, but talk a little bit about some of the programming because it's very innovative and very helpful. 

Brenda: Oh, thank you for saying that. Yeah. I've always been so impressed with the creativity of the staff. So much of what we do really comes from the community. We're talking 500 or 600 people a month reach out to us by phone, by email. So that's absolutely a free service. They can call, they can ask questions about resources. They can go off. And we get phone calls and emails from people saying, I think I might be on the spectrum. I think I might be autistic parents calling about their kids who just got a diagnosis and not knowing where to start. It can be very overwhelming in the beginning of a diagnosis because you get a lot of different recommendations from different professionals, from your family and friends who saw a TV show or read an article and tell you this is what you need to do. So we hear a lot about what's on people's minds. So those 500, 600 calls and emails a month, that's one way people reach out to us, the other really big way that people reach out to us, and another free service, the online support groups and interest groups. So me and me like you said, 

Jordan: You said it beautifully. 

Brenda: I don't even need to be here. You're like the best promoter of AANE. 

Jordan: You're Flattering, the host, and he loves it. But go ahead. 

Brenda: Yeah. No, it's great. It's the community building. So we have 60 to 70 groups running at any one time. They can be interest groups, things like music lessons online from the Berkeley School of Music that are offered free for autistic adults. We have a writers group. We have an outdoor enthusiast club that meets and goes hiking or fishing or Newing or all kinds of outdoor type activities. And so a knitting group, a book group, you know, sort of any topic or interest that people have. If we can find the facilitator and we have the resources to it, we can provide it. So those exist for the autistic adults in our community. And then we have support groups for parents, for adults, for teens. I think one of my favorite things about support groups is the intersectionality. So we were one of the first places that did groups specifically for autistic women. For many years, we thought of not we it was thought of as so many more boys and men were diagnosed than women, and we see that they were undiagnosed misdiagnosed. And women finally can find a place, they can come to a group and say, oh, my gosh, these other women have experienced what I've experienced. So that's a particularly strong area for the intersectionality of gender. We know that gender diversity and autism are highly linked, that there's a higher proportion in folks who are autistic who are trans or nonbinary, and vice versa. So AANE is one of those places where people can find a group. They just don't exist that many places. 

Jordan: That's right. And you've also tying it into what we're doing with PLAN. You've reached out to organizations like PLAN so that adults, whether they be autistic or not, need to concern themselves with their financial future and parents of autistic children or Asperger's children, whatever. Talk, if you will, with us about your relationship with PLAN and how that works. 

Brenda: Sure. No, I'm happy to. Yeah. PLAN one of the programs we have here where we have two very individualized programs for adults. One is Life Map Coaching that provides coaching on any type, whether it's employment or independent living skills or relationships. That's a very popular program and is available anywhere because we can do it virtually. And then we have a Life Net independent living case management program for adults who want support on how to live more independently. That's also a very popular program offered through AANE. And in both those cases, a lot of those families, those adults and families are looking for questions about what do I do when my parents aren't managing my expenses and my money? If I do it myself as an adult, can somebody help me with that? A lot of people have special needs trusts set up, and PLAN is very instrumental in managing the supports, those trusts. And one of the most popular programs we have is our benefits conference. And PLAN has always been a supporter. Actually, you probably know more than I do, as I'm new to the Executive Director role. But the number of years we've been connected to PLAN, I love to hear that number. 

Jordan: PLAN recently celebrated a 50th birthday and life begins at 50, they say. But I know one of the reasons that we're inviting people like you to join us on these podcasts. And I'm the moderator, and I love this gig is to just allow you to introduce yourself to a broader community because the PLAN community, with a lot of organizations has been thriving, and we are thrilled to do that. And to that end. There's something on your website that I wanted to focus on. And it's one of the things that I enjoy about meeting people who have Asperger's because I have friends who do have Asperger's. And that is, as it says on the website, the possible strengths. I think there are actual strengths. But can you comment a little bit on that, Brenda? Because so many people are so talented in so many ways, and they just may be a little different. Tell us more. 

Brenda: Yeah, that's beautifully put. People talk a lot about all the challenges, and there are very real challenges for people. But at AANE, we've always recognized the strengths and talents in people as well. And that environment, the right environment often is what's needed to bring out the strength. And so, for instance, we have an artist collaborative of very talented artists. Their art lines our walls. It's all for sale. People can come into the office and look at it or go to the online gallery. But when you have an outlet and you have an environment where you're understood, your strengths can shine. A lot of times there is this view that there's a strong connection between tech and Asperger's, and people are very good at coding and computer work and things like that. 

Jordan: Right. 
Brenda: There's a stereotype out there. And for some people, that's true. But we see tremendous talent in writing and the humanities, in philosophy and science. I mean, there is no field where there isn't a connection. Somebody with autism who's really interested and talented in that field. And often it's just finding the place where you can be your authentic self and be understood and we can accommodate and make a place where you can fit in. Often it's all the things that we expect in the workplace that are not really set up for someone who's neurodiversion or on the spectrum, like having the water cooler talk and having to sit in meetings in a certain way. 

Jordan: No, I understand makes sense. 

Brenda: And one of the nicest things actually, pandemic has been tough for our population just like everyone else. But one of the nice things is with remote work, people are feeling less stressed because they're not in the office all the time and having to interact all the time, even though they're close to people and they like to be with people. Yeah. There's no limit the strength, I think. And I hope we'll come to a day when we get away from the feeling like it's all one or all the other. Everyone has a mix of strengths and challenges in them. And what can we do to me, I think what can we do to make our environments autism-friendly so that people can their strengths can come through.

Jordan: If there is a lobbying effort or if there is a wish list for lobbying, let's say the public institutions out there that deal with education, that deal with healthcare and so forth, what would you like to see happen for this community? 

Brenda: That's a great question. I mean, one of the things I would love to see happen is for us to train mental health providers on the intersectionality of mental health issues and autism because there are great mental health providers out here. They're out working, but they don't all have the autism expertise. And there's so much co-occurrence of autism and anxiety and autism and depression and OCD. And we need providers. There is such a dearth of providers who really understand both things. 

Jordan: Well, that's a very good point. Yeah. Diagnoses that get blurred because of other issues. And there are a lot of them in a lot of cases in other areas of neuroscience and medical science where this happens. And it's important to distinguish the pandemic. We have to mention it again because it's the big elephant in the room, has impacted everyone, as you said. But is your organization done additional outreach, and if so, what have you tried to do to help people get through all this? 

Brenda: Yeah, well, we pivoted we were very much an in person organization. And in March 2020, we'd always had some online activities. We moved everything online, all our groups, support groups, coaching everything. So we didn't get rid of any services. We just moved it all online. And when we did that in the last year, we had 70% growth of new people coming. We've never seen that kind of growth before. You’re smiling. 

Jordan: I'm smiling because I've talked to so many people in the course of a day. And some people say it was just the opposite. People didn't want to sign on and so forth. But I think there's something safe in some respects and comforting, as you say, to be in your own home, for some of these people to be in your own environment. But that is incredible. 70% uptick. So what can the public do to support AANE.org and the efforts? If you have fundraisers or if you have drives or need for volunteers, please let us know right now and see if we can rustle up some help. 

Brenda: Oh, that's great. So we're just building a more robust volunteer program. So if people have time and energy they want to give, we always have projects and work we need support with so they can reach out to us on the website. In terms of donations, I mean, one of the things we did when the pandemic hit was we also reduced or removed our fees for services and programs. So we made all our programs, group programs for adult autistic adults and teens completely free. And what we found was that people actually wanted to donate more money because they were so behind the effort to remove that financial barrier. We have a long wait list for more groups. We have many more people come to us looking for service than we have groups. And to me, that's a resource issue. If we have funding to hire people and train them and run quality groups, then we can do more groups. So if people would like to see us expand in that area, we're happy to take donations and we are very grateful for those and they go directly to serving the people we serve.

Jordan: Well speaking for my colleagues at the PLAN executive office who are so excited to bring people like you to the floor and have you on their podcast, I just want to say congratulations. The short time you've been there only several months I'm sure you've seen a lot of activity. People are excited about new steps forward and we can only hope that people discover if they haven't already the website which is so easy to remember aane.org that's the Asperger autism network. It covers a lot of ground but you've got your staff working hard and we really appreciate you joining us and wish you the very best. 

Brenda: Oh, thank you so much. It was great to be here. 

Jordan: We want to thank you for listening to the Plan for Special Needs Trusts Podcast presented by PLAN The Planned Lifetime Assistance Network of Massachusetts and Rhode Island. PLAN is a 501(c)(3) nonprofit company where the goal for every one of its clients is always to preserve assets, protect benefits and live well. For more visit PlanofMa-Ri.org we invite you to subscribe to the download, rate and review this podcast and thank you for sharing it with others. Our plan is your plan.