Many autistic children are underestimated or misjudged, and those assumptions can be even more misplaced for autistic children of color. We spoke with writer, public speaker, and autism self-advocate Gyasi Burks-Abbott about growing up Black and autistic in a much less autism-aware era, and how he was able to thrive thanks to the guidance of his intuitive and supportive mother.
Thinking Person’s Guide to Autism: It’s really good to talk to you. Let’s dive in. You were diagnosed with autism at age 17. Do you feel as though you missed out on supports that could have benefited you due to not being diagnosed during childhood?
Gyasi Burks-Abbott: When I was first diagnosed, I would have said a definite yes. It felt like I had missed out on a lot, and I was bitter. Even a psychiatrist at that time suggested that, actually, I benefited from not having been diagnosed as a child, because I basically had a normal childhood.
I really disagreed with that concept, but over the years, I’ve come to see that he might have a point. I guess where I am now is I want to find a Goldilocks principle, where for instance, you have the diagnosis so that there are no recriminations, but that diagnosis doesn’t prevent the child from having as normal a childhood as possible.
In other words, the child should still have all the developmental stuff. They should still have extracurricular activities. They should still have family outings and family vacations, even in terms of areas in which they need help. They should do things that are therapeutic for them, even if it’s not a designated autism therapy. That’s what I would say about that.
TPGA: That’s a great answer. If I could expand on that, I’m wondering if you think they actually understood enough about your childhood to declare it to be a “normal one,” because, a lot of times, there’s a lack of understanding about how autistic people experience the world, and you often get judged by neurotypical standards and nobody even bothered to ask you if you thought it was [laughs] a normal childhood. You know what I mean?
Gyasi: Yes, I’m glad you mentioned that, because when I said a normal childhood, I guess I didn’t have a completely normal childhood. You could say I was a normal kid with problems. In other words, I was identified as having problems at a young age. Actually, at three days old, I turned blue. Later, I’d be diagnosed with minimal brain dysfunction. I had a diagnosis of mental retardation at three and a half. At 11, I’d be diagnosed with “autism residual state.” I would spend the first to third grade in special education. I would be partially mainstreamed.
I guess my childhood wasn’t perfectly normal. What I mean by normal is, I really wasn’t considered different to the extent that I basically had all the experiences that any child growing up in the ’80s had. In other words, I went on family trips. I was in the Boy Scouts. I went to summer camp. In other words, I had all the usual experiences—even things where I did need help.
I was a victim of a bully once, for instance. My mom wanted me to make sure I could defend myself, so I took taekwondo lessons. Or, my father wasn’t really in the picture, so I had a big brother from the Greater Big Brothers of Los Angeles.
In other words, I had normal experiences that were therapeutic in their own way. Obviously, I wasn’t “normal.” Yes, I sometimes did have a therapist. Yes, that’s true. I was in special ed but, basically, my life went along in a normal trajectory. As normal as possible.
TPGA: So you had ups and downs, but a personally satisfying childhood?
Gyasi: Yes. Actually, that’s another thing I want to emphasize for people, especially as you get older. When I was actually in my 20s, I used to think that I had a bad childhood. My perspective has changed and I would actually now say that I had an excellent childhood. I think that what comes with age and perspective is important, and that’s something I think people can look forward to. As you get older, the world doesn’t necessarily get easier but you’re more able to deal with it. You’ll get stronger. The world doesn’t get easier but you get stronger.
TPGA: I think that’s a really important message for younger autistics to hear from somebody who has had a lot of life experiences. You’re 49, did you say?
Gyasi: Yes, I am. I’ll be 50 in May.
TPGA: Yes, I think that’s a great message for people to hear. I appreciate that. Let’s get to the second question. You remarked in your article called A Theory of Mine that before your autism diagnosis, your academic struggles were inaccurately attributed to your race or to your “laziness” rather than disability. What are some key points you would like to convey to racially marginalized and disabled students about how to face school?
Gyasi: I guess what I would say about that is a little, I guess, more global than specific, because there is a problem of [autistic] people of color of being diagnosed later. Part of it, at least, is because a lot of behaviors are interpreted differently based on who’s doing them. In essence, I guess I have more a message for practitioners and administrators, and even parents, to look out for—for instance, looking at behaviors. I think this goes for women too who tend to be diagnosed later. In essence, behaviors are interpreted differently based on whether it’s being done by, let’s say, a White boy, a Black boy, or even a White girl.
I think about the case that I mentioned in the article, about the teacher who wrote across the top of my paper, “A mind is a terrible thing to waste,” which was then the slogan of United Negro College Fund. It was because, in essence, I didn’t perform as she would have expected. In other words, I was good in some areas and bad in others. She knew that I had had a history of special education. What made her think of the race piece, and not, for instance, that I had a learning disability. In other words, that was just how you interpret behaviors.
TPGA: Is it okay to ask? Was she a Caucasian or was she a person of color?
Gyasi: She was white. Yes, she was Caucasian. She almost saw me as someone who wasn’t living up to their potential. It could’ve been because I was being raised by a single mom, my dad wasn’t in the picture. This was back in the ’80s, with the idea of the struggling Black family, father not in the picture. In other words, that was the paradigm that she stuck me into. I’m the smart kid from this impoverished background. That kind of thing. At least that’s what I could assume, right? As opposed to having a learning disability. It would be interpreted differently, depending.
TPGA: That goes to something that, again, a lot of autistic people talk about, and which is increasingly highlighted now, is the concept of a spiky skillset, which—especially for people like yourself who can be in mainstream classes as children—people assume that if you can excel in one area, that you should be able to excel in all areas. When in reality, what a lot of autistic people talk about is not only having the spiky skillsets where they excel in one area but NOT the other, but then also, those abilities can fluctuate from situation to situation, depending on how you are doing that day, and your cognitive load and your executive functioning load. I’m wondering if you experience this?
Gyasi: Yes. Stress is a very big factor. Me under stress can really affect my ability to function. Certainly, I definitely agree with that.
In terms of what you mentioned about the spiky skillsets, my neurological testing is always interesting, because my verbal ability always tests almost off the charts, but my visual-spatial is always very low. For instance, I don’t drive, I have a very poor sense of direction. In fact, there was one neuro-psych test of which I did a very interesting thing. I had to copy a picture that I had seen. What I had done is I had only managed to draw one side of the picture. It was like I completely ignored the other half. I even find today that, for instance, if I’m not careful, I could actually miss something that’s right in front of me if I’m not focused.
TPGA: Then the concern is that with people who are making assumptions that since you’re excelling in one area, then they might just, again, think that you’re being lazy or not paying attention when you DON’T excel, when again, it’s like, “No, I have a disability.” [laughs]
TPGA: Your book is titled My Mother’s Apprentice. Your mother was obviously a really strong mentor, and I’m wondering, what are some of her lessons that still resonate with you today?
Gyasi: I’ve actually been thinking about that. I don’t know if I can say that there are a series of lessons. It’s more like my mom had an attitude of making learning an organic part of our life. I would say that there is a lesson that could be distilled from that, is that there shouldn’t really be a separation between living and learning. My mom was an academic and her expertise was literature and film. She would often analyze movies, for instance, analyze TV shows, current events. This was just part of our day.
Even analyzing, for instance, a family gathering or talking about a current event and just seeing the world as a place, a source of information, and not seeing a separation. My mom was an academic. You wouldn’t say she was really locked in the ivory tower. Learning and life were the same thing, I guess I would say. That really became helpful because, for instance, when I got older and she had my power of attorney, which meant that I still had my full rights, but she could speak for me, she always made me part of any conversation that occurred that had to do with me, even if she had to coach me in the conversation.
For instance, if we’re dealing with Social Security, I would make the phone call. Yes, my mom might be in the background, almost like a Cyrano de Bergerac, feeding you lines and stuff like that, but I was the one doing it. Yes, she was there to help and sometimes step in, but basically, was me. I was doing it.
TPGA: That’s fairly progressive, given that so many parents of people with disabilities tend to just step in and take over and not let people self-advocate to the best of their abilities, and figure out where that is, and like you said, she did step in if you needed help, but the “if” is doing most of the work in that sentence, right? It can be scary to encourage self-advocacy, and it’s phenomenal that she did that, especially, given the era in which you were raised.
It’s still considered in some arenas, an explosive topic now, just to teach your children to self-advocate. There’s still a lot of evidence that so many parents with disabilities just do things for their disabled children without even thinking about it or without even checking in with their kids or considering their capabilities. It’s almost like they assume, “My kid is struggling, so I’m just going to take over.”
Gyasi: Yes, I hear you. Fortunately, I think that’s changing a little bit. There’s a new paradigm called Supported Decision Making, which is an alternative to guardianship. It doesn’t negate guardianship, but it just suggests that maybe someone doesn’t need guardianship, but maybe what they need instead is maybe a team of people, like advisors, who help them in different areas like finance or medicine. An agreement can be signed and that can be how they go forward. Actually, in Massachusetts, we’re trying to get supported decision-making passed.
TPGA: That’s wonderful.
Gyasi: It’s actually already something that’s a thing, but it actually just missed the last session, so we actually had to refile it. Basically, it would be that courts would have to consider support decision-making before they automatically went to guardianship, the idea being that there’s some cases in which a person can self-advocate in. Even in the doctor’s office, even if the person does need to be accompanied to the doctor’s office, just as a sign of respect, the doctor should still address the patient.
TPGA: Yes, absolutely.
Gyasi: Even if the parent has to give most of the information.
TPGA: Yes, I couldn’t agree more with you. I don’t know how much you know about me, but my son is an adult, he’s 22. He’s quite high-support. Even though he’s mostly non-speaking, I still insist, and gently or overtly, depending on the situation, that he is addressed on matters that concern him. I think it’s really crucial. I’m just really glad to know that you had that kind of support from your mother. She sounds really wonderful. I’m so sorry she’s passed. You must miss her a lot.
Gyasi: I do.
TPGA: If it’s okay to go to the next question. We already talked about that you’re 49 and, you have lived the greater portion of your life as an autistic adult. Do you feel that today’s society’s recognition and treatment of autistic adults has shifted for the better during your life, and if so, has that shift affected how you see and treat yourself?
Gyasi: I would say that certainly, since I was diagnosed, there’s far more awareness of autism. In other words, I tell someone I’m on the autism spectrum, or I’m autistic, they’re not either dumbfounded like, “What is that,” or their only reference point is Rain Man. Usually, they either have an autistic relative themselves or they know someone who does, or they have some other reference point, they have more knowledge. Certainly, that’s a good thing. Awareness is important.
One thing that’s come out, I guess, in the last few years in terms of how autistics are treated, is I would say, the neurodiversity movement has taken off, and has increased an understanding, almost like what we’re talking about earlier of how skillsets aren’t linear. People could be good in one area and bad in another area. Neurodiversity, I think, has clarified that.
Actually, I always go back to an earlier idea that I think is related to neurodiversity, and that’s multiple intelligences. That was posited by Howard Gardner in 1983 in Frames of Mind in which he talked about intelligence not just being one thing that’s measured by an IQ test, so like a G factor, but that intelligence can be different capabilities in different areas. There’s linguistic intelligence, there’s visual-spatial intelligence, there’s mathematical intelligence, interpersonal, intrapersonal. I think lately, he’s added naturalistic, which basically is the ability to identify objects, but that intelligence is not one thing you either have or you don’t, but you could have it in different varieties, different ways, different balances.
Unfortunately, I would say that the way people interpret autistic abilities tend to be somewhat limiting. For instance, they tend to think of autistics as being good with technology and math. For instance, me, I am not that. In fact, it was interesting that when I wanted to take time off of work, because I was under stress, and I talked about my autism, one of the things that they came back at me with was that people with Asperger’s syndrome can be college professors or computer programmers.
I was like, “Did they take a look at my Math records? I’m not going to be a computer programmer.” It is interesting that a lot of companies nowadays, I think, for instance, are having these initiatives to hire people on the autism spectrum. I think that’s beautiful, that’s excellent, but it would be interesting if that could be expanded. For instance, why aren’t more parts of the economy getting in on the game of hiring neurodiverse talent? Not just tech companies, not just financial firms, maybe even newspapers and publishing houses. Even if not writing, maybe copy editing.
Also, I think another thing that’s happened, which is not necessary, is that there has been a certain degree of conflict that has been created between the parents of Autistics with high support needs and “high functioning” autistics. I guess you can call it a civil war, that in a way, it’s not necessary, because I think they have a lot more in common than they have differences. At least for me, for instance, I’m high functioning, I’m verbal, but there are many ways in which I really identify with Autistics who are nonverbal and have high support needs. I have the same anxieties, I even have some of the same behaviors, some of the same self-stims.
I saw this, for instance, when I was in college, and on my work at a day program for developmentally disabled adults. A lot of the clients were autistic. Even though they were non-verbal, even though they were high support needs, I saw myself in them. I saw the same not liking change, anxiety in certain situations. Even their self-stims, I self-stim like them, with language. A lot of them also self-stim with language. We weren’t necessarily saying the same thing, but what they were saying was based on their experience, maybe living in a group home. My self-stims are related to my experience being raised by an academic. The words are not the same, but the impulse is the same.
TPGA: That completely makes sense. I have a son with high support needs, and you have lower support needs, but hearing you talk about these commonalities is really gratifying, and something that we actually tried to emphasize [at TPGA] a lot.
I think that’s a message that we need to hear more of, we need to hear more from people with your experience, and how you identify with other autistics regardless of their level of ability or disability. I’m grateful for that, but I’m also interested in how meeting more autistic people has changed the way that you treat yourself, if you’re kinder to yourself or in hearing more from other people that they share your experiences?
Gyasi: I guess I am kinder to myself. Maybe the context in which I work—I’m on the faculty of what’s called the LEND program, which is Leadership, Education, Neurodevelopmental Disabilities. In addition to that, I also do a lot of work with disability organizations, I’m doing policy work. In my circle, there’s an understanding and acceptance of disability. I sometimes find that I’m actually harder on myself than I need to be.
People will cut me some slack. It’s not that they’ll just let me get away with anything, but they do accept that I’m trying my best. That does take some of the pressure off, and it does help me actually perform better, because like I said, when I’m under stress, that can actually decrease my performance. I can relax and sit back and say, “You know what? I’ll just do the best I can, and it’ll work.”
TPGA: That’s great. I’m so glad to hear that. I think it’s all also really important to emphasize that there’s a difference between slacking and needing accommodation. [laughs] I wish people were more aware of that, and again, how that can fluctuate.
Adult autistics often talk about how part of their developmental path includes lifelong learning and skills building, unlike non-autistics who often level off in early adulthood. Is this constant development an experience that you can identify with? If so, can you give examples?
Gyasi: Yes, definitely. As to that, I think it’s interesting that the idea that non-autistics level off, they actually don’t have to. What I think of is, being autistic or even be in any part of any marginalized group, you have to be into lifelong learning. In other words, when the system doesn’t quite fit you, you have to learn how it works, and it’s a constant process. An analogy for me is how much I learned about my computer when it doesn’t work, and I just tried to get it fixed. Or even the heating system in my house, when a maintenance man asked to come over and fix it, I learn a lot about the heating and the computer when that happens.
In essence, being a person in a system that doesn’t necessarily always track with your experience, you’re always having to learn the system. Whereas, someone who feels the system does track, they can ignore it. In essence, I would say, “Yes, I’m always in a constant learning process. Not that it’s a burden, I enjoy learning.” I think actually, lately, I think the science is showing that everyone should be a lifelong learner. Actually, even if you are “neurotypical”, because being a lifelong learner helps your brain last longer, and might even helped prevent Alzheimer’s disease. You develop a cognitive reserve, so that if your brain does begin to falter as you get older, other parts of your brain could come in and help out, there’s neuroplasticity. It’s not a bad thing, it’s a good thing.
TPGA: Yes. That’s interesting, I hadn’t thought about it from the perspective of that if you are from a marginalized group, then yes, you’re constantly having to learn how to deal with your environment, that absolutely makes sense.
The next question is that autistic adults can struggle to deal with atypical expectations often being both underestimated as to capabilities, yet also accommodated for disabilities. I’m wondering how you handle these scenarios and what advice do you have for others?
Gyasi: That goes back to what I was saying about when I had tried to get time off of work, and they came back at me with “computer programmer” and “college professor.” Also interesting, is my neuropsych testing. I once had a neuropsych test, which this was before Asperger’s syndrome was collapsed into the autism spectrum in 2013. The person was trying to decide if I was more Asperger’s or more high functioning autistic.
I tested as someone who was high functioning autistic, but because of my language ability, it would judge that I was Asperger syndrome. Interestingly enough, my personal psychiatrists at the time came to the exact opposite conclusion. He said that because I had a history of language delay, that I was probably more high functioning autistic than Asperger’s. Now, what was interesting is the examiner who wanted to read me as Asperger’s even though I tested as high functioning autism, he was doing the test on behalf of my employer. He was trying to determine that I did not need long-term disability because I could work.
Around this time, which was another complication, there was an autism organization that had not only said that people with autism can work with accommodations (which is the part the examiner ignored), but that they had listed all these historical figures who had posthumously been placed on the autism spectrum. Actually, when I was first diagnosed, I used to do that myself. I figured I couldn’t be the only autistic that they had missed. It also gave me a sense of pride.
I also thought that if people can accept autism in famous people, either living or dead, then they certainly can accept autism in me. I found that the world is a little more nuanced, it doesn’t really work that way. In other words, even if people can accept the fact that maybe some historical figure or even a celebrity might be autistic, that doesn’t necessarily influence how they treat individual autistics they meet. The dichotomy I actually experienced at a dinner with my mom’s colleagues. Like I said, she was an academic, we’re having dinner with her colleagues. They were all joking about how they had Asperger’s syndrome, how they were these brilliant eccentrics.
Then I said I was autistic. Well, you could have heard a pin drop. Later, someone wrote a message to my mom, saying she was lucky, in which she meant by lucky was the fact that I wasn’t as affected by autism as I could have been. I was verbal, I was independent, somewhat.
TPGA: I don’t know if your mom taught at a liberal or was at a liberal place or not. But academics, especially language academics, are definitely thought of as being progressive. But there’s having progressive ideals, and then there’s actually acting on your ideals when you’re faced with reality. I definitely find that a lot of people’s assumptions about disability are really regressive.
Disabled people by and large are not receiving the respect that is their due, even when people think that they are being accommodating and considerate, like your mother’s colleagues’ reaction about how that she’s so lucky, because it could have been worse. You know what I mean? It’s so insulting [laughs]. It really is, because in my take, and you can tell me how you feel about this, is that just by automatically categorizing you, they’re not seeing you for who you are. It’s just so silly.
Another thing you talked about on the Uniquely Human podcast is the concept of double consciousness as it relates to the Black experience in the United States. As a Black autistic, do you consider a double consciousness to share ground with Damian Milton’s Double Empathy Problem of Autistic and Non-autistic Communication Barriers, or are you facing a more compound set of hurdles? Do you feel that there are similarities between the two?
Gyasi: The similarity, I guess between a double consciousness and a double empathy problem has to do with the fact that just as the Black person in a White society has to understand White people. The White people don’t have to understand them. In a way, the double empathy problem is pointing out that autistics have to understand non-autistics, but non-autistics do not have to understand them. There is a similarity there. That’s because he’s suggesting that part of the problem is that non-autistics don’t understand autistics.
Of course, I don’t think he said this per se, but it implied that autistics must learn how to understand non-autistics. I would even go further and suggest that not only does that give autistics a theory of mind, but theory of mind deficits are more universal. That non-autistic aren’t just misunderstanding autistics, they’re also misunderstanding each other for a variety of different ways. Maybe they come from different backgrounds, maybe it’s a high-stress situation. Who knows?. I would say the similarity certainly is there about who has to know, understand who
TPGA: I appreciate that. I’m White and I’m not autistic as well, so these are things that I have to learn about from people who are actually experiencing these things. Whereas like we talked about before, there’s a difference between understanding something academically and then actually having lived experience. Those of us who are not experiencing these things need to understand them, getting back to the initial part of the question, so that we can see where people are coming from, and then interact with people respectfully and with accommodations and understanding, otherwise, things get messy.
I really love the concept of double empathy, because it does put the onus on both groups. like you said, non-autistic people are just like, “Oh, well, autistic people have to just deal with the way that we do things and do them our way.” But really, it’s like, “No, that’s actually not the way things need to be. You need to do some self-examination and think about why you need it to be that way.”
You mentioned theory of mind, the ability to try to understand how other people experience things. I think in expecting autistic people to behave like them, non-autistic people are demonstrating a pretty serious deficit in theory of mind, because they don’t understand how autistic people experience life. Expecting them to do things the way they do is not only unfair, it’s ignorant.
You do a lot of disability policy work. As you mentioned, your work with LEND and other areas. You mentioned supported decision making, which is something that it’s just a wonderful idea. What are some crucial disability policy issues at the moment, and why do they matter?
Gyasi: One problem that we have, which was exacerbated by the pandemic, is a direct support professional workforce crisis. There aren’t enough people to staff group homes and day programs. Even with the new models of support like self-direction, where a person doesn’t have to live in a group home or go to a day program, and could actually be in their own home, but they can’t because they can’t just get the supports they need. There’re not even enough staff for that either. That’s one thing. One thing is to try to raise the salary, so that in essence, they can live and they’re not tempted to, for instance, go to Target or go to Starbucks or whatever.
That’s one thing we have to do. We’re working on a national level and a local level.
Another thing actually goes back to what I said about self-direction, because of home and community based services. We already are moving away from having people live in institutions, which was another thing that was really brought up during the pandemic, because that was actually the most dangerous place to be, in a segregated setting like an institution. Over the last 20 or 30 years, we’ve been trying to move people out of those settings, and into their own communities.
Biden wants to put money into the home and community-based service system. He wanted to try to make it part of his infrastructure bill, but he got a lot of pushback because the idea is that infrastructure means roads and bridges. Biden was like, “Well, what about the people who travel along those roads and bridges? They are important too.”
I would say another important thing is employment. Not just convincing people about the benefit of hiring people with disabilities, but also making sure people with disabilities, when they do work, they don’t lose their benefits, because there’s a little wrinkle in the Social Security program that actually is a disincentive to employment. That’s the asset limit, you can only have $2,000 in your account.
I know personally, I’ve had that experience of not being able to make enough money to be self-supporting, but making just enough to jeopardize my benefits. Now, in the last Congress, there was a bill on the table or the bipartisan bill, to increase the asset limit to $10,000. I don’t know if that bill has been refiled yet, but that’s definitely another issue, employment and benefits.
TPGA: When you talked about the $2,000 cap, when was that limit set?
Gyasi: That was 1984, I think.
TPGA: Oh, my. The $2,000 asset limit, the cap has not changed since 1984?
Gyasi: In the 80s.
TPGA: How old were you in 1984?
TPGA: Oh, my God. You’re 49 now?
TPGA: That needs to change. My goodness. I agree with you on all of these things. Again, my son, actually, he’s 22. He just aged out of school in December. We are currently helping him set up a self-determination home program. One of the hugest barriers we have faced is being able to find support workers. He’s actually gone for almost two months without any real consistent support since he graduated from school. We’re working on it. We think we found some people, but it’s been taking a really long time.
In our case, we are both well-educated, English is our first language. We’re financially stable. We have all the advantages to work these systems and understand these systems. I’m not great with executive functioning, but my husband is. We’re finding these systems—not only the ability to hire workers, but just the disability support and benefit systems themselves—to be so impenetrable. I really worry about people who are trying to access these labyrinthine systems who don’t have our advantages.
I’m sure you probably see a lot of people struggling with this in your policy work. It’s really infuriating, because this is supposed to be for the benefit of people who don’t have all those advantages; it’s supposed to be a social safety net so that everybody is caught, but it just seems like too many people are falling through and it’s really, really frustrating.
I appreciate talking with you, Gyasi. I think this has been a pretty comprehensive interview, from the perspective of our community, butI was wondering if there’s anything we missed about you.
Gyasi: I can’t think of anything you missed, but there’s always a message I like to leave, especially for parents, because of my own experience with my mom. There’s a fear parents of disabled kids have about what’s going to happen to their kids after they pass away. My mom had that same fear. Even though she did a lot of things in my life, the last six months of her life, her cancer progressed too quickly for her really to do much of anything. That’s the message I want to convey comes from the book, Nobody’s Normal, by Richard Roy Grinker. He’s a medical anthropologist and he interviews a couple in the Kalahari Desert who have an autistic child.
When he asks them if they’re worried about what’s going to happen to their non-verbal eight-year-old when they pass away, the father says, we’re all not going to die at once. In essence, even though I live in western civilization, which is more individualistic, I still benefit from that same type of community spirit. A lot of people did rally around me, friends and family. Even the apartment complex I lived in, changed their policy because of my mom’s death. In other words, my mom and I were living in an apartment complex, in affordable housing. I would not have made enough money myself to be a part of affordable housing, there actually was an income limit.
Basically, as far as I knew, I was going to be having to live maybe in Bedford Housing Authority a couple of miles away. But when my mom passed away, the apartment complex decided to hold an apartment aside for me anyway. When I applied and didn’t make the cut, they made an exception saying that if someone would vouch for me, saying that they would help me in a pinch, they would give me the apartment. My aunt agreed to do that.
My aunt who was a financial planner actually did something with my mom’s life insurance, which still benefits me today, she put it with her stockbroker. I still get a stipend from that. Of course, I had a lot of people in different civic organizations that I’m part of who helped me move and downsize, because I had to move from a two-bedroom, three-bathroom apartment, with a one-car garage to a one-bathroom apartment. A lot of downsizing to do, I needed a lot of help.
That’s the message I want. In essence, I would bet that anyone who has that worry is doing a whole bunch of stuff. I want them to relax and have faith that what they’re doing is going to pay dividends. May not be tomorrow, may not even be next week, but it will pay dividends, it will work out.
TPGA: I appreciate that, as one of those parents. [laughs]. I’m so glad that you are supported and that your community came together for you. That’s a wonderful story. That’s what you deserve and that’s what every disabled person deserves, is to have the support in their life that they need to thrive and to specifically not worry about their future. Just the basics, like where are you going to live, that’s not anything that any person should have to worry about. I’m so glad that, again, that they rallied for you. That’s just wonderful to hear.
I think that’s a great note to close out on. I appreciate that. Thank you so much for your time, I really do appreciate it.
Gyasi Burks-Abbott, MS, is a writer, public speaker, and autism self-advocate who serves on the boards, committees, and commissions of several autism and disability organizations. He’s contributed to and written articles for anthologies, blogs, and journals. Gyasi’s autobiography is My Mother’s Apprentice: An Autistic’s Rites of Passage.
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