Elevating Autism Acceptance to Autism Appreciation – Podcast

Jason Dorow 

Welcome to another episode of the Champions of Homecare podcast. David, I don’t know about you, but I’m so excited that spring has finally sprung in Minnesota; it’s starting to warm up. It’s coming around here in the Great North, and April means a lot more than just showers for May flowers. April is also Autism Acceptance Month.

David Hancox 

Yeah, that’s very true. And you know, whether you know it or not. And I would say this to all of our listeners, whether you know it or not, you know someone who is either experiencing autism, or has a significant relationship with someone who identifies, has autism in their life, but you know someone who is affected in some way by autism. In Minnesota, 1 in 34 individuals is diagnosed on the Autism Spectrum Disorder. And this month is an important occasion to recognize and celebrate all those folks with autism who are absolutely worthy of acceptance. We know that all of our friends, colleagues, neighbors, who are part of this autism community, are important to us. So luckily, Accra has an amazing partner organization in the Autism Society of Minnesota or AuSM, which is dedicated to empowering people in the autism community with the resources that they need to live participatory lives in the community. And we’re so glad that the society’s Community Resource and Policy Advocate, Jillian Nelson, is joining us today to talk about all things related to autism acceptance. So Jillian, thank you for being with us today. And how are you today?

Jillian Nelson 

I’m fantastic. It’s such a pleasure to be here with you, these are my favorite conversations during my favorite month of the year.

David Hancox 

Wonderful, wonderful. Well, we really appreciate your taking time. I know this is a very, very busy week for you with the conference and with cutting down to the final days of the legislature and etc. So we really appreciate you taking the time. And you know, as a person who not only works professionally, representing individuals with autism and their interests and needs and wants in the community, but also somebody that self identifies as someone with autism, what does autism acceptance mean to you personally?

Jillian Nelson 

This has been a huge thing over the years. When I first was diagnosed autistic, we had Autism Awareness Month, and for a long, long time, that really just kind of rubbed me the wrong way. Because like, Great, fantastic, you know I exist after like, I don’t know, the first couple Autism Awareness Months. Everyone should know autistic people exist. And that’s when we really have to start talking about what do we do with them now that we know they’re here. And for me, that’s really what autism acceptance is about. Autism awareness means you know I’m here. Autism acceptance means you’re happy to see me, it means that you’re welcoming us into the community and into the spaces, that you’re open to accommodations and understanding. And I hope that after we get there that the next stage of this will be Autism Appreciation Month, and that we can really start celebrating the amazing things that the autism community brings to this world. 

David Hancox 

Yeah, I like that. It reminds me of, I’ve always, over the years, talked about the difference between integration and inclusion. Because integration creates a presence. It creates, as you were saying, it creates a presence. But inclusion connotates participation, and involvement and so forth.  

Jillian Nelson 

I’ve been advocating for years thatt April 2 World Autism day is a cake and present holiday. I know it’s past this year, but next year, be prepared, that it’s the day that you’re supposed to give your loved ones with autism cake and presents. And it’s the day that we celebrate autistic people kind of like Mother’s Day or Father’s Day. 

David Hancox 

I like that. Are there specific ways that people could think about becoming involved in this month to support Autism Acceptance Month?

Jillian Nelson 

I really encourage people during Autism Acceptance Month, I mean, and also every single other month, like, really look for the predominant autistic voices in your community or even the not so predominant autistic voices. Like if you know someone with autism, talk with them about hey, what does this mean to you? Tell me about your life. How can I support you? But also like, we have a ton of fantastic autistic people that are writing books, that are doing podcasts, that are speaking nationally, that are showing up in our media and it’s a time that we can really really celebrate them. I can’t speak highly enough of authors or bloggers like Fidgets and Fries or Neurodivergent Rebel. Special shout out to Autism On The Go, that’s my personal blog. But then also we have some fantastic things happening like we have authors like Devon Price, and Eric Garcia that are talking about phenomenal theories around autism. And then this year, one of the biggest things I think happened is we for the first time saw a Broadway show come and spend several months on Broadway. A show about autistic people, played by autistic people. Based on a documentary How to Dance in Ohio. Probably one of the most profound shows I’ve ever seen in my life.

David Hancox 

Yeah, I’m dying to see that show. I saw some clips of it on a couple of different new shows, but haven’t had the pleasure of seeing it in person yet. And I would really love to see that. You know at the risk of, I don’t want to be too intrusive, but I’m curious. What was your reaction? What was your sense of self appreciation or self awareness when you first were diagnosed, you first learned of your diagnosis of autism. 

Jillian Nelson 

My coming to autism was a little bit muddy. I grew up with a lot of challenges. And I was in special ed, I was diagnosed with ADHD at six. I later had an IEP for emotional behavioral disorders. I was in and out of the mental hospital dealing with a lot of really serious thoughts and depression. And I just, I couldn’t figure anything out. Yeah, and then my little brother was born. And he was in preschool, and like, his preschool teacher started to notice that he didn’t quite interact like the rest of the kids. And they suggested that my mom go get an autism assessment for him. And she took him to the same doctor she had taken me to for years for mental health stuff. And they diagnosed him with autism. And that same doctor suggested to my mom that maybe that’s what had been going on with me all those years. And that we just didn’t know what we didn’t know in the 80s and early 90s, especially as a girl. So he suggested that I go get an assessment as an adult. And I was actually a homeless drug addict at that point. And I had just gotten clean, I was like, maybe three months clean. I was living in a transitional housing program. And like, where I had to follow all these rules, or be discharged, and I went, and I got assessed, and all of a sudden, like, everything about everything in my life suddenly made sense. But at the time, I also wasn’t really okay with it. Like I didn’t talk about it, it was a secret. I didn’t understand. But in that era, and it was the era where we were really starting to see the first introduction of all of the autism acceptance and autism, well, not autism acceptance, but autism awareness. And like, it was really coming into frame for looking at autism and talking about autism. And I went to the bookstore to try to understand because this was back when we still went to the bookstore. And I couldn’t find a single book about my new diagnosis that was about adults. So everything I learned about myself based on a parent, but a book for parents. And it was another seven years after that diagnosis before I met another woman with autism. And it was Temple Grandin. Not someone that I get to be best friends with, but it kind of all changed when I went to take a class, my mom actually made me sign up for Partners in Policymaking. The deal was if I did this Partners in Policymaking class, I could live at home and go to college for free. And I was like, Oh, this doesn’t apply to me. Like this has nothing to do with me like, I’m not going to talk about my disability. But I really didn’t want to pay rent. So I agreed to sign up for it. I figured it would help me in my goals and working with gay youth that were homeless. And then I stepped foot into that classroom and it was the first time in my life that I was celebrated for being there because of my disability and the perspective I had as a person with a disability, rather than in spite of it. And I got to learn so much about our community and our culture and our history. And I really changed my whole perception on being a person with a disability, it changed my whole perception, or what I want to do with my career. As you know, David, I switched from wanting to work with gay homeless youth and I ended up as an intern at Metropolitan Center for Independent Living, and like really trying to build a career around the independent living philosophy and then shifting that into the Disability Justice Model. And just being this determination of that nothing about us, without us and everywhere that we’re working, everywhere that people are working for us, there should be people that are living the life, helping make the decisions and the prices and the changes. 

David Hancox 

That was one of the most profound experiences that I took away from my time at the Center for Independent Living as well, was the Nothing about us, Without us. I just, that still just rings so true to me. And I don’t know if you knew or not, maybe you did, or do Jillian, but between 1988 and 1995 I coordinated the Partners and Policymaking program. Yeah, I coordinated here. I was working the DE Council at the time. And actually, Dr. Wick and I co authored, she wrote most of the grant, but I had some input into it, and got a national grant so that we could train other states how to new Partners in Policymaking as well. And I did a lot of that training.

Jillian Nelson 

Absolutely a life changing program.

David Hancox 

Isn’t it? My younger sister who’s a parent to two children with significant disabilities went through the Partners Program in Pennsylvania. And it like you, as you’ve described, it was a life changer for her as well. So little shout out to Partners and Policymaking. 

Jillian Nelson 

I had the coolest experience just a couple of weeks ago. I was in a hearing on Capitol Hill doing my job. I had actually gone to that hearing it was regarding sub minimum wage, and I had intended not to testify. And then we had, there were a couple public testifiers that came up and then things went a little wonky. So I needed to step up and say some things just to clarify some points and reiterate things. And it ended up being a pretty passionate testimony I made. And I walked off and I went back to my seat and there was this group of people right behind me. And they were just kind of doing the arm motion like that. I kind of blushed I was like, and then as they were walking out, about 10 minutes later, I caught one of the their name tags, and it was Partners in Policy. Sure, it was this year’s class and I followed them out. And I was like, Hey, you guys are from Partners. And they’re like, Yeah, I’m like, Well, I just want to let you know that everything you saw up there, I learned how to do that at Partners. That’s where I got my start for my career. And they were so excited. And it was such a like a really cool moment to like, connect with the new class as an older class and like really give them a lot of hope for everything. And they can go on and do with what they’ve learned in that program, that it’s not just about advocating for your own child going forward. But like you literally can get out there and change the world with what you learned in that classroom.

David Hancox 

Yeah, it’s a fantastic experience. You know, Jason, we should make a note of that, that might make a really good future for the podcast is to talk about Partners. But back to Jillian, talk about, if you would for a minute, because I know that one of the important focus of this particular month is to kind of point out and try to eradicate some of those lingering myths and misunderstandings about autism. What are some of those myths or misunderstandings that you still encounter on a regular basis as a person with autism?

Jillian Nelson 

I think the biggest one I encounter is that, now, I want to preface this by saying I detest functioning labels. And I really don’t think we should label people as high functioning or low functioning because it’s very misleading. But because I appear to society, like anyone who isn’t well versed, would label me as high functioning. And that means that they assume that I have very low support needs, and that I don’t need a lot of help or I don’t need a lot of assistance when in fact, I have a full waiver. I have PCA support. I see our emotional therapist, I have a job support professional and I appear to be high functioning to the outside lens to someone who doesn’t know much about autism. Not because of who I am, but because I have all the supports and services in place that allow me to really, really do the things I want to do, that without those, everything would just kind of crumble and fall apart. I think there’s also a lot of misconceptions about what autism looks like. If I had $1 for every single time I was told, Oh, but you’re a girl, or Oh, but you speak or Oh, but you live by yourself. Like I could probably fund Accra and AuSM for a full year. If I had $1 for every time I got one of those answers. There’s a lot of perceptions about what people with autism are capable of in the world, like in terms of employment or driving or having relationships or having families. And it’s just wild to me. And then there’s just a lot of the stereotypes that if you aren’t like Sheldon Cooper, or the kid on the Good Doctor, that you’re not actually autistic. Fun fact, not every autistic person is great at computers or science. If we didn’t have a tech support guy that took care of my computer, things would go south very, very quickly. I am not a techie autistic person.

David Hancox 

Yeah. Jason, you’re being awfully quiet.

Jason Dorow 

Thanks for segueing me inm David. Jillian, you mentioned earlier that when you were looking for resources about adults with autism, you found you know, just quite a dearth or absence of books, even that you can read. And I’m guessing there are some myths and understandings, misunderstandings, that need to be cleared up around adults with autism too, are there other things that come to mind in that realm?

Jillian Nelson 

I mean, there’s this crazy concept that is still sometimes seems to be fairly new to most of the world. And it’s this idea that autistic kids do, in fact, grow up to be autistic adults. And actually, if with much luck, they will be autistic adults far longer than they were autistic kids. But unfortunately, we lack a lot of the services and supports that are available for children, you kind of get cut off at 18. There’s this huge service cliff, accessing services and supports for a lot of people with autism, it kind of creates this world of forced povertization, where you can’t earn too much money or you’re limited in what you can and can’t do. And Minnesota is starting to change that with our Medical Assistance for Employed People with Disabilities Program. And some reform that’s been happening over the last couple of sessions, there’s actually no longer an asset limit. So individuals can receive services and support and actually save money. But there’s still some barriers, like you can save money if you have extra money, but people still have to pay into that program in order to receive their services. And it’s often a really, really high premium, they create some barriers. 

David Hancox 

Jillian, if you don’t mind, my interjecting here, you know, whenever I talk with families or individuals who are experiencing some of those barriers as you identified them. And it doesn’t matter whether it’s in the educational setting or in housing or employment, transportation, whatever it is, I always remind them that those barriers, that it’s not about their disability. It’s about discrimination.  You don’t have to apologize, or, you know, make excuses for the fact that you are a person with a disability. This is discrimination. So change the D, it’s about discrimination. So what would, how would you advise folks to kind of approach that or take some of the power out of that discrimination? 

Jillian Nelson 

I think one of the things we can do is keep advocating for the change. The hard part is, is that change, at a systemic level, change needs to come with data. The problem here is that a lot of places aren’t tracking disability when it comes to data. Like we don’t track how many people with disabilities use public transportation outside of things like Metro Mobility. We don’t track how many people with disabilities are applying for food stamps separate from a waiver system, we don’t track how many people with disabilities have diabetes, we don’t track income and job success rates for people with disabilities outside of systems like sub minimum wage. And if we’re not tracking data, then we don’t know where there’s disparities. I think in 2020, I may have probably said it 1 million times, but lack of data is a form of discrimination. And I think every time we’re filling out a survey or every time we’re looking at a research study, we need to make sure that disability is included in the people that we’re counting and the way that we’re looking at disparities, and that we’re not skipping over our community just because we think like, oh, well, this isn’t something that impacts people with disabilities. Literally everything in the world impacts people with disabilities, whether it’s transportation, like going to the grocery store or going to the library, going to the theater, rent increases, the environment, global warming, all of it impacts people with disabilities, because we’re people. But we don’t track how people with disabilities are drastically impacted by that. And that’s kind of what continues to perpetuate that discrimination is that we’re building systems around this idea that it’s going to work for everyone but we’re not getting information from the disability community. I have told people that are doing system planning and system design that if you want to create a system that’s going to work for everyone, it’s unnecessary to talk to people without disabilities; you only need to talk to people disabilities because what works for people with disabilities will work for everyone. 

David Hancox 

It will work for everyone, right? My dear friend of mine, and one time mentor of mine who is unfortunately now deceased, Ed Roberts. He, the the shorter part of a very long story was he said, You know, it always fascinated him. Because on a daily basis, we make thousands of accommodations for people who are able bodied, people who don’t identify as disabled, we make thousands of accommodations for them every day. And nobody says a word. Nobody even notices. But the time that you try to apply one accommodation to an individual with a disability, all of a sudden, it becomes a big deal. We have to pass laws, we have to allocate funds, we’ve got to do all this, jump through all these hoops. And it just adds to that insult of the discrimination itself.

Jillian Nelson 

So then let’s take Ed’s experience, Ed Roberts is one of the people that I look up to so greatly in this world. But Ed had a very visible disability. And this is actually one of the biggest challenges that the autism community faces is accessing accessibility because often for a lot of people with autism, autism is an invisible disability, right. So we ended up having to fight incredibly hard for any accommodation we need, because people can’t see the reason we need it. And this is actually one of my big, like, forever dreams is that I want to hopefully someday pass legislation that mirrors the ADA, but creates guidance and requirements for accessibility beyond those needed and those outlined in the Americans with Disabilities Act, for people with physical disabilities. Because right now, there’s no guarantee. A couple years ago, during the pandemic, when they started opening gyms back up, a friend of mine went to the pool gym with her PCA and went swimming and had zero problems. And she’s a wheelchair user. I came in 20 minutes after her, like enough time that after I changed into my suit, walked into the pool, she was leaving from her workout as I was entering. I also came with my PCA. Five minutes into my workout the managers at the pool asking me to get out of the pool because I wasn’t allowed to have my PCA with me. Because like, and I had been a part of the group that wrote the recommendations for gyms from the governor’s office that said that you’re allowed to have your PCA, but because they couldn’t physically see the reason I needed my PCA, they were telling me that I couldn’t have my PCA in that space.

Jason Dorow 

Oh my gosh.

Jillian Nelson 

Which I mean realistically, my PCA is there to keep me on track because I get very anxious and overwhelmed. And then I just kind of get stuck. So like, it’s a really good reason to have someone there during COVID. Without a PCA it takes me two hours to leave the locker room, if I’m there with a PCA, I’m out of the locker room in 10 minutes.

David Hancox 

Yeah, you know, I had a similar encounter, in fact, it was during the Partners and Policymaking event in South Dakota, years ago. And after the Friday evening activities were over, we all decided to go in the bar and have a drink. And one of the self advocates that was with us ordered a drink. And the waitress turned to everybody else in the group and said. Is it okay if he has a drink? Yeah. And I remember looking at her saying he’s an adult, clearly, he’s an adult. Well, but you know, I don’t want to. She said I don’t want to cause a problem by serving him a drink if he can’t. I said he’s an adult.

Jillian Nelson 

Yep. 

David Hancox 

He gets to have it, if he wants to have an alcoholic beverage. That’s his right. And it was it was just a really, really odd, much like you experienced. it just made no sense to me. 

Jillian Nelson 

And I mean, it’s just this duality between visible and invisible disabilities, it runs so rampid and it really probably is one of the biggest impairments of discrimination for the autism community. It so often we have to prove that we need an accommodation or that we need support. It’s wildly frustrating.

David Hancox 

I can appreciate that it probably is. I haven’t experienced from the disability side so I can’t say that I understand because that would be disingenuous, but from other aspects of my life, I can appreciate that differently, I think but yeah, the frustration that it must cause and and you know, not just frustration, but the, I don’t want to sound overly sentimental, but the heartbreak that it might cause. I’m not trying to sentimentalize anything here but I mean it really, that would cause me such, not just frustration and anger, but sadness and despair almost you know? 

Jillian Nelson 

You worry a lot like there are things you want to do but if you need accommodations to do it like, are you going to be able to do it? Or how is it going to go down? Or how are people going to react to it – there are so many things that having to fight for accommodations that you really do end up missing out in this world, and or just not able to go because someone’s not willing to provide accommodations, or you’re just not willing to take on the fight because sometimes it’s a huge fight, like after going to the gym, like I fought with the gym for three months, try to get reasonable accommodations to be able to work out with my PCA. And I finally just gave up. Because what was the point. I just, I found another gym that wasn’t going to question it.

David Hancox 

And to that point, it’s got to be absolutely exhausting. 

Jillian Nelson 

It is. And there’s one of my favorite autistic people is an author, and speaker, Lydia X.Z. Brown, and they came to AuSM’s conference during the pandemic a few years ago. And they talked about how we don’t actually know what autism looks like by itself in adults, because most adults with autism also have trauma. And that trauma comes from trying to navigate this world and exist in this world, and navigate accommodations and fight for accommodations on a daily basis. I mean, I saw a stat recently that like over 40% of autistic adults are diagnosed with PTSD or CPTSD. And that’s not because like, we were all in some horrific incident, it’s because we just exist in a world that wasn’t made for us. And it’s those micro traumas, like the constant bullying or having to fight for accommodations, or being doubted or having to prove your support means that it just wears on you over time.

David Hancox 

And I would think that some of those traumas are not really micro. I mean, when I think about the constant bullying, and things like that. Each individual event might be identified as micro, but when you add them all up, and the impact that can have lifelong.

Jillian Nelson 

Yea , because we think bullying stops when you graduate high school, but that’s not actually how that works exactly. Especially not for the neurodiverse community. I mean, and that’s part of that story. And like that reality is part of the reason why I work at the Autism Society, and why I built my career with this amazing organization. Because it’s a safe place, it’s a place where I can shine. It’s a place where they hired me for a job I was horrible at, and then figured out customized employment for me to like, really cash in on the skills that I was good at, and allow me to use those to serve my community. It’s because I can have a really rough day and I’m gonna get support from my leadership team, or because I don’t have to try to hide that I’m autistic, I can show up exactly, autistically wonderfully as I am. And it’s appreciated, not just tolerated.

Jason Dorow 

So Jillian, with all the work that has to be done here and Disability Justice and helping people advocate for themselves and fight for those accommodations, like you were talking about. What does your work look like at AuSM, and what’s AuSM doing to help people?

Jillian Nelson 

My role is the Community Resource and Policy Advocate, which is kind of two jobs in one. I do all of our information resource hotline work. So when people are going through something or newly diagnosed or looking for information, I’m the person they talk to, and I help them kind of figure out what’s going on and what’s next, or even just kind of offer some comfort that you know, this isn’t the end of the world, you have a whole new community, now here are some resources. And then after I talk to the community, and I find out what’s going on with the community and what’s working for the community, and what’s not working for the community, then I head on over to Capitol Hill over here in St. Paul. And I work with our amazing legislative allies and I write some bills, and then we try to pass those bills. A lot of it is pertaining to accessibility, making sure that we’re creating a more accessible state. We’ve done some work in police reform, where we wrote them at the Autism Society about the most innovative law enforcement bill ever passed regarding autism that requires four hours of training every single licensing cycle, and it’s the first bill that requires that people with autism be involved in that training and developing that program. We’ve been working with, well, we helped create the Minnesota Coalition for Disability Wage Justice, and we’ve been working for a number of years on equity issues, pay equity issues and ending the use of the section 14C certificate and making sure that people with disabilities are being paid at least minimum wage. We’ve worked tirelessly with SEIU and making sure that our home health care workers have the pay and the benefits that they deserve, so that they can really, so the PCA work can become a sustainable career. I think if there’s really anything up at the Capitol that involves disability, we’re probably in the room or peeking our head around the corner being like what’s happening over here. I’m kind of nosy like that. So trying to bring people with disabilities, other people with disabilities besides myself, along on that ride, so that we really have people telling their stories, and that we’re working on things that are meaningful to the community that we’re serving. 

David Hancox 

Well, and I know firsthand that Jillian brings her voice into a variety of different settings, because we sit on several committees simultaneously. So I, her voice is there. And Jillian, to that note, I know you need to get to the Capitol, I know you’ve got a conference this week. So we’re going to wrap up here so that you have time to go there. But in closing, because you do have the conference this week, and it is April is the Autism Appreciation Month. What are you looking for? What’s going to be the most outstanding event at the conference? What do you think is going to be one of the big takeaways from the conference this week?

Jillian Nelson 

Oh, god, it’s hard to really pin it down to just one. I think the biggest takeaway from the conferences is always just bringing the whole community together. We aren’t a conference that’s just for parents or just for providers or just for autistic people. We bring all the players in the community into one room and really give people a chance to listen and learn from each other. We have speakers from all of the different stakeholder groups, and we have attendees from all of the different stakeholder groups, and just becomes this really beautiful community interaction where people can really connect and learn from one another. And one of my favorite things is hearing parents at the event, they talk about they’ll attend a session with autistic speakers, and then they’ll be like, Oh, that person really reminds me of my kiddo. And like it starts to change their perception of who their kids can be when they grow up.

David Hancox 

That’s marvelous. And I’m very, very proud to say that Accra is one of many sponsors of the conference. And it will also have an information booth at the conference.

Jillian Nelson 

Accra’s information booth is one of my favorite places to swipe candy from throughout the conference. 

David Hancox 

I’ll mention that to my co workers here to make sure they keep a fresh stash there for you. So that’s great. Well, Jillian, listen, I know you’re very, very busy right now again, with the legislature as well as with the conference and everything. So, again, thank you so very, very much for taking some time out of your very busy schedule to spend some time with us this morning. And what a wonderful conversation. I feel like I’ve learned a great deal more and have a different appreciation. So thank you so very much.

Jillian Nelson 

It’s always a pleasure to sit down and talk with friends, both personal friends, but also, Accra is definitely a friend to our organization. And we appreciate all of you. 

David Hancox 

Well, thank you again, Jillian. Thanks so very, very much. And please say hi to Ellie for me when you see her at the conference. 

Jillian Nelson 

Absolutely. I’ll see her bright and early tomorrow morning as we start to get ready for the big event. 

David Hancox 

Great. Well, have a great week. Good luck at the legislature today. And I hope the conference goes really really well. Thanks again for for being with us today. 

Jason Dorow 

Thanks Jillian.