Episode 22: Pat Schissel and Dena Gassner, The Asperger/Autism Network
Pat Schissel, New York Director at The Asperger/Autism Network (AANE), and Dena Gassner, PhD candidate at Adelphi University, Adjunct Faculty at Towson University and advisory board member for AANE speak about the services the Network provides to help build meaningful, connected lives.
Intro Voices [00:00:05] Where do I go? It only happened once. I think I was singled out. The phone calls began about one month ago. What is hazing? Something happened to me when I was younger. I'm worried about my safety. He said he was sorry. Can someone help me? Where can I get help? Can someone help me?
Intro Voices [00:00:31] This is “You Matter”, a podcast for the NYU community developed by the Department of Public Safety.
Karen Ortman [00:00:37] Hi, everyone, and welcome back to “You Matter”, a podcast created to teach, inspire and motivate members of the NYU community who have been victimized in some form or fashion and to identify resources both on and off campus that can help. I am your co-host, Karen Ortman, Assistant Vice President of field operations at the Department of Public Safety and a retired law enforcement professional.
Sabah Fatima [00:00:59] And I am Sabah Fatima, a pre-med graduate student here at NYU College of Global Public Health. If any information presented today is triggering or disturbing, please feel free to contact the wellness exchange at 212-443-9999 or NYU’s Department of Public Safety and their Victim Services Unit at 212-998-2222.
Karen Ortman [00:01:21] Today we introduce Pat Schissel, New York director of the Asperger Autism Network, an acronym AANE, and Dina Gassner, PhD candidate at Adelphi University and adjunct faculty at Towson University. Dina is an advisory board member of AANE, runs their monthly New York Women's group, and is a member board of directors of the ARC U.S. Pat and Dina, thank you so much for joining us today on “You Matter”. So, Pat, I will start with you. What is the distinction between Asperger's and autism?
Pat Schissel [00:02:03] First of all, thank you both for inviting us today. Karen, autism is a spectrum and individuals have strengths and challenges across the spectrum. At AANE, we refer to an Asperger profile as someone who has the capacity for independence. But there are those who are more challenged who may also, with supports, achieve this goal. All or most have difficulty with social interactions and ritualized behaviors, cognitive challenges without a measurable intellectual disability and difficulty with what could be a wide range of sensory differences. Our mission is to work with individuals, families and professionals to help people with Asperger profiles build meaningful, connected lives in an atmosphere of validation and respect. Additionally, the organization is committed to welcoming all individuals regardless of gender, race, ethnicity, age, sexual orientation or gender identification.
Karen Ortman [00:03:12] Can I interrupt you for a second? So you make reference to a spectrum. I've heard the term spectrum, on the spectrum. What does that mean for a listener who is unfamiliar with Asperger's, autism, or the terminology associated?
Pat Schissel [00:03:35] Well, we have a friend, Stephen Shore, who is an adult who was diagnosed when he was a child. And he's supposedly the person who came up with the term. When you've met one individual on the autism spectrum, you've met one person. So each one is individual. So if you are challenged on the spectrum, you're not the same as somebody else who's challenged. And if you are somebody who has more ability, you're not necessarily the same as somebody else. So there are strengths and challenges of each. But there are certain similarities in the social difficulties, the sensory, generally speaking.
Karen Ortman [00:04:19] So is it fair to say that the spectrum is a measure?
Dina Gassner [00:04:23] The spectrum really references a wide range of expressions, as Tony Atwood says, of autism. I prefer the term internalizing and externalizing. On a very good day, most autistics that AANE would be serving might not be very externalising. In other words, other people might not denote a difference. But for other individuals on the autism spectrum, for example, my son, if you have a brief interaction with him at a cash register, you're probably going to see somebody who presents as neuro diverse. You may not know what the difference is, but it's probably evident that there's something unique about how he processes the world. And so the spectrum encompasses all of those expressions of autism.
Karen Ortman [00:05:16] Is the term spectrum exclusive to Asperger and autism?
Dina Gassner [00:05:22] No. We use spectrum to talk about genetic disorders, we use spectrum to talk about mental health conditions. So it's just a descriptor. it's a way of explaining it.
Karen Ortman [00:05:32] Gotcha.
Pat Schissel [00:05:34] But you have somebody like my son who fits in Asperger profile. But in meeting him, you would know that there was definitely something that was very different.
Karen Ortman [00:05:50] How so?
Pat Schissel [00:05:50] You might be able to have a very high level conversation with him. But you know that he's processing differently than a student that you would run into here, although he went to an Ivy League college, but had very many difficulties. So he needs a lot of support in order to survive, not to thrive, but survive. So without those supports he can plummet, which can be the case for many of the people that we deal with. But their intellectual ability is average to way above average. They have difficulty with something called executive functioning, which is sort of like having a secretary in your head. It can deal with organization. It can be dealing with motivation. But it's something that pervades most people on the spectrum, having difficulties with executive functioning. So they can go - you’re in a university setting - they go from high school where there's a lot of order, there’s classes five days a week. Their experience is to have an assignment due on a Friday and they come to college and it's due in December. So that whole ordering of their lives, right. Totally different. They come from having, you know, meals put on the table, their laundry done, or even expectations at home are different. And they come to parents expecting a magic bullet where everything is going to get cured when they turn 18.
Karen Ortman [00:07:24] Is it possible to enter college as a freshman never having been diagnosed with Asperger's or autism?
Pat Schissel [00:07:36] Yes, absolutely.
Karen Ortman [00:07:38] And is that common?
Pat Schissel [00:07:41] It is more common than it should be because there are very few professionals that are trained to recognize an Asperger profile in one of their - either their patients, if they’re pediatricians or psychologists, if their kids are brought to them, they see behaviors that they are not recognizing. They're not trained well.
Karen Ortman [00:08:03] So if you could, could you describe a 19 year old freshman college student who may have Asperger's or autism, they've never been diagnosed. What does that look like? And I understand there's a range.
Dina Gassner [00:08:26] There's a very high chance they do have a diagnosis, but not of autism. They may have a co-occurring learning disability that presents more substantially or the executive function piece may have been diagnosed early on as attention deficit disorder. But what you find is that the medication intervention is hit or miss because they really have this global organizational processing issue, not just an attention or attention to everything. I describe the difference. Also, my son was diagnosed at three. He was very externalising.
Karen Ortman [00:09:05] What does that mean?
Dina Gassner [00:09:06] He presents obviously. He was toe-walking. He was not speaking unless he wanted to get something. But what happens with this profile is we may be able to get by with great cost, great cognitive and emotional exhaustion. We may make it through school and come home and fall apart. But we will inevitably probably hit a wall. And that wall might be going to college. It might be going to high school. It might be having children. In my case, having children and not sleeping was what led to my diagnosis. I made it all the way through a master's degree before I got a diagnosis. And it really was triggered by an effect of sleeping where it lowered my threshold and I wasn't coping anymore.
Karen Ortman [00:09:54] So if I may ask, a diagnosis of what?
Dina Gassner [00:09:57] I'm diagnosed with PDD NOS, now we would just call it autism. It was all under that umbrella back then even. And so that means I have most of the symptoms, but not enough to pop into that Asperger profile. I've been diagnosed twice with PDD, so I would think that I would still meet that PDD profile, which means I'm coping maybe a little bit better. But it's kind of a trash can of diagnoses and it's not used anymore. It would just be called autism. But it was that wall that I hit, it might be that you married and have children and you do okay, especially if you're male and you have a partner who's managed a lot of things for you. It may be a job loss that makes you hit the wall where you realize you've been getting feedback from people about difficulties for years and it's just time to figure out where this is coming from. My son would never have met that profile. My son was clearly developmentally delayed in in global ways at three, so we diagnosed him relatively early.
Karen Ortman [00:11:05] So you use the term global ways. What does that mean?
Dina Gassner [00:11:08] Self-Help skills, communication, being able to navigate his own environment. The issues presented at home, at school and in the community. Whereas this profile, if they're a little more sheltered, if moms intuitively do things well for them, they may not be diagnosed at all. And they're very intelligent. So sometimes, although we may not understand why, we often can mimic what's expected of us without any understanding of the context, you know, so. And that inherently leads to vulnerability, which leads to what you do. We just go along to get along and we don't understand where we are or what context where we're in.
Karen Ortman [00:11:55] So, Pat, can either Asperger's and/or autism because it's one or the other, correct?
Pat Schissler [00:12:03] Well, it's all autism, but it's different.
Karen Ortman [00:12:06] So Asperger's is a sub-category, if you will, or under the umbrella?
Pat Schissler [00:12:13] We once asked Tony Atwood, who is like the guru in this field, a psychologist who first brought it to this country, I guess, what's the difference? And he said the way it’s spelled.
Karen Ortman [00:12:23] Interesting. OK. So can either suddenly present in adulthood? We just talked about a freshman in college, so clearly it could present -
Pat Schissler [00:12:36] Freshmen in college, or we run a support group for adults. And there was an adult man in his 50’s probably who had been diagnosed that week and we asked him, you know, what led to the diagnosis, and he said, reading the assessment of his son 10 days earlier. So he read it and said, that was me. That was me. That was me. That was me growing up. So, you know, it came into this country in 1994, and the people who were trained are few and far between. That's what the beauty of my organization is, that we lead people, you know, to talented professionals who really do understand the profile.
Karen Ortman [00:13:22] So let me ask you before we move on and and perhaps neglect to do so, your organization is - it's a multi-state organization.
Pat Schissler [00:13:35] National and international.
Karen Ortman [00:13:36] Okay. Bigger than that. All right. So if someone in New York City, for example, wanted to access your services, how would they do that?
Pat Schissler [00:13:45] Well, you do it the same way for anybody, anywhere. You go to AANE.org and you fill out a form called contact us and they contact us. And depending on what the services are that they need, there's coaching, there is life net, there's parent coaching. We have support groups everywhere, either in person, 1 to 1, or online and there are webinars, there are conferences.
Karen Ortman [00:14:14] So lots of resources. Okay. And and the New York City location is?
Pat Schissler [00:14:21] It’s on Fifth Avenue and Thirty First Street, there’s a location on Long Island. But we have support groups, Westchester, Long Island, and in Manhattan.
Karen Ortman [00:14:31] So, Dina, can you explain to our listeners. What is the ARC?
Dina Gassner [00:14:37] The ARC U.S. is the oldest organization that provides primarily policy advocacy for people with intellectual and developmental disabilities. So you were asking if the word spectrum was used in other ways. So IDD is the entirety of people who present with intellectual or developmental disabilities, of which autism is one. But it also includes Down's Syndrome, traumatic brain injury. So it's a broader range of people with developmental or intellectual disabilities.
Karen Ortman [00:15:16] Does the acronym ARC stand for anything?
Dina Gassner [00:15:20] It's not an acronym anymore, it's just the name of the organization.
Karen Ortman [00:15:24] But it was previously known to be something else that is associated with that terminology no longer used.
Dina Gassner [00:15:32] Right. Right. So basically, if you think about what Special Olympics does, we do everything else.
Karen Ortman [00:15:39] OK.
Dina Gassner [00:15:39] You know, we provide guidance for families trying to come along and figure out how they can finance the future for their loved ones. We do activism at the grassroots level all the way up to the federal level. We are currently involved in social justice issues and we've represented many people who are incarcerated that actually have an intellectual disability. They're on death row and we're trying to get that determination asserted so that they're protected. We do housing. We do everything that affects this population.
Karen Ortman [00:16:15] That’s a great organization. Important work.
Dina Gassner [00:16:16] We have two different great organizations represented today, absolutely.
Pat Schissler [00:16:21] And I think the thing about both organizations is that they have people on their board and they employ people who are on the spectrum or disabled. So it's you know, we walk the walk. Both of us.
Karen Ortman [00:16:34] And I'll mention again, even though I said it in the intro, Dina, you do sit on the board of directors
Dina Gassner [00:16:40] For the ARC and I’m an advisory board member for AANE.
Pat Schissler [00:16:43] -The professional advisory board for AANE.
Dina Gassner [00:16:46] So it's like a Venn diagram. There's a lot of intersectionality.
Sabah Fatima [00:16:51] Pat, is Asberger's and/or autism genetic? Is there a known -
Pat Schissler [00:16:57] Yeah. Everything points to it being genetic. Researchers have known genes contribute to autism since the 1970s when a team found that identical twins often share the condition. Since then, scientists have been racking up potential genetic culprits in autism, a process, the DNA decoding technologies have accelerated in the past decade. Very exciting research. Yeah. As this work has progressed, scientists have unearthed a variety of types of genetic changes that underlie autism. The more they dig into it, the more intricate and it contributes to whatever autism seems to be. But it's not a single gene. It's very, very complicated. So it's still in the infancy and there are some testing in terms of saliva testing to help with medications, which is also very exciting.
Sabah Fatima [00:17:54] Oh, that is really exciting, that personalization. Is there a known cause for either one of these?
Pat Schissler [00:18:00] Not really.
Sabah Fatima [00:18:02] Still in the works, yeah.
Karen Ortman [00:18:06] It's still being researched, I assume.
Sabah Fatima [00:18:09] Dina, what is the difference between autistic disorder and autism spectrum disorder?
Dina Gassner [00:18:15] None. The self-advocacy community has long stood for the idea of what we call identity-first language. And that would be “I'm autistic.” “You have autism” is person-first language. A person with autism. And much like the deaf community and the blind community, we feel that that language pushes our diagnosis to the rear almost in a shameful way. So while I would never tell someone which language they are required to use, each family, each person chooses for themselves. I refer to myself as autistic because it's in every fiber. It's in my crazy red hair. It's, you know, all of me.
Karen Ortman [00:19:03] I love your red hair.
Dina Gassner [00:19:04] Thank you. But for me, having come into a diagnosis so late, I found that getting a diagnosis not only explained my experiences to others, but it explained that to me. It gave me a language and a framework of identity that helped to complete me in a way that I was very fragmented before. And so I don't know. It represents wholeness to me. And so I prefer to use identity first language, but everybody chooses for themselves. And some organizations struggle to honor that individuality and that self-determination while honoring their history, which may have not included that language. But we're also seeing hardcore researchers, clinical people from all around the world stipulating and caveating that they're going to use identity first language out of respect for our community. So there's a cultural shift happening.
Pat Schissler [00:20:03] A part of it, too, is that the adults on the spectrum are taking part much more, you know, in the literature. And the organizations and their voices are getting louder and louder
Karen Ortman [00:20:16] Because they're coming forward and speaking out about it.
Pat Schissler [00:20:21] There are so many of them like Dina, like John Elder Robinson, like Stephen, sure, who really are fabulous advocates. And it's, you know, it's who we listen to, who it's, it's who I go to. My son, you know, is one of the first people I go to with anything. He’s a wonderful editor, makes me sound great at anything I do.
Karen Ortman [00:20:46] Well, that's good.
Pat Schissler [00:20:47] Yeah, right, exactly.
Dina Gassner [00:20:49] But we also never forget our brothers and sisters who may not have an opportunity to choose for themselves. We have self-advocacy representatives as a community. You know, my son did not start out in that space and he's still pretty significantly impacted. And so when we advocate, we advocate for all, not just one segment of the population.
Sabah Fatima [00:21:16] Wonderful.
Pat Schissler [00:21:17] So there are people who are not capable of advocating for themselves. We certainly all support, but there are people who are capable but have blocks to doing it and with proper nurturing and understanding can get there. There's a wonderful film called Wretches and Jabberers, that's a short. It was done on a grant, really explaining people who don't have speech. These two guys went around the country, went around the world, actually, on a grant meeting other people who were non-speech people. And it's really worth seeing.
Karen Ortman [00:22:00] What's the name of it?
Pat Schissler [00:22:01] Wretches And Jabberers. Wretches with a “W” and Jabberers. And I saw it in the theaters probably about six or seven years ago, but it's on Netflix or Amazon. One of those. But it's wonderful.
Dina Gassner [00:22:18] And at the ARC, we have a gentleman who is going around the country sharing his lived experience. His name is James Medders. And James was institutionalized most of his, you know, young childhood when the institutions were dismantled. He was one of the people liberated from that situation. And he goes around the country talking about his experiences as a male with an intellectual disability who was repeatedly sexually assaulted in an institutional environment. So he's very engaged with the ARC's, you know, justice initiatives, trying to help people understand that sexual assault is not always about women. And he is an individual who definitely, you know, again, would have been institutionalized because that's what doctors recommended when he was a child. He's in his 60s now, and so his experience is massively informing, social justice around institutions and incarceration. And we're really, really grateful for him. James does not have autism, he has an intellectual disability, but he's a Facebook friend of mine and his heart for justice is just melting. It's amazing.
Sabah Fatima [00:23:33] Is it possible to be diagnosed with either Asperger's or autism without obvious visible symptoms?
Dina Gassner [00:23:40] The symptoms are obvious to qualified providers. It may not be obvious to everyone else. I can tell you as someone who lived in that identity, it was very obvious to me. Internally, I recognized that I was just not achieving what I wanted to. And the gap between where you want to be and where you can be is where the depression and anxiety could grow. But yeah, you know, that's where the qualification factor is a big issue. Teachers are not trained. Social workers are definitely not trained. They think it's something siloed over there somewhere. But if you work with homelessness, if you work with LGBTQ, if you work with domestic violence or any other social service initiative, you might work within. What you're seeing are people, you may not be qualified to recommend a referral and see it for what it is. So that's my - I'm a social worker. Pat's a social worker. So I'm trying to change that in my field.
Karen Ortman [00:24:46] What about pediatricians? Would you say the same? Not trained or qualified?
Dina Gassner [00:24:51] Absolutely.
Pat Schissler [00:24:52] And psychologists, since we just started an initiative for neuro-diverse couples that we started it, training people who do couples therapy to teach them about autism because they were seeing couples and saying, well, you know, not even allowing that one person may be on the spectrum because they're married, where they look you in the eye.
Karen Ortman [00:25:17] Explain what a neuro diverse couple is.
Pat Schissler [00:25:19] Somebody on the spectrum and somebody, two people married or in a partnership, and one who has, you know, some form of. On the spectrum. Being on the spectrum.
Karen Ortman [00:25:33] And the other partner, not.
Pat Schissler [00:25:35] Being more neurotypical is what it's called.
Dina Gassner [00:25:37] Or maybe their expressions are different.
Pat Schissler [00:25:41] They could possibly both be on the spectrum, right.
Dina Gassner [00:25:44] And again, neurodiversity is a very broad term. It's anyone who's neurologically different from what we would consider, I don't like the word normal. So it could be mental health. It could be a learning disability. But again, autism is a subset within that neurodiverse community. But in my house, I mean, my husband and I are clearly neurodiverse, but I have a memory problem. So if I don't lay things out where I can see them, they never existed. Like, no file folders can be used and people smile and say, oh, we all have that. No, you don't have it like I have it. Trust me. My husband, on the other hand, is on the other end of that spectrum. He can't stand to see anything out. Everything has to have a place. And he wants his life very simplified. So as you can see, even though we're both neurodiverse, we kind of had clash of the disabilities. So when my son's needs exceeded what we could provide in our community and I relocated, we pleasantly were surprised to find out that once we got over the hump, we could admit without blaming someone else that we're very happy living apart and kind of dipping our toe in the water every month to say, hey, how are you? We talk every day. We have a very rich marriage, but yeah, we're not good under the same roof together because of the difference in our presentation.
Karen Ortman [00:27:04] Got it.
Sabah Fatima [00:27:05] Can you speak to neurodiversity as it relates to victimization?
Dina Gassner [00:27:13] Many people in the neurodiversity community would say that victimization is something that's assigned to us. I, having been a victim of sexual assault more than once from a family member, from clergy, I would say that my ability to read context, and I can only speak for myself and my ability to understand intention. And in the most subtle scenarios, to be able to see it for what it was, was somewhat limited for quite some time. I had one pastor who would write me basically love letters, but he did it with his wife sitting there next to him. And and so I was confused because I'm like, okay, his wife is with him and he's talking about Bible scripts, you know, scripture. And so I guess this is okay. And it wasn't until I was in my forties that on a random thing in another profession, I happened to wind up connecting with his wife and she had left him because of this behavior being repeated with many different people. But when I was in it, I was confused. There wasn't enough information. So as I got older and I learned I had autism and I learned that I was easily manipulated and I didn't always get the clues, I started to surround myself with gatekeepers that would be there for me that I could bounce the information off of and say, is this person trustworthy? And what has been your experience? And there's a lot of that that happens within our community. We're a very tight network of family. Many of us have lost our family of origin in this life we've experienced. And so if you're one of the lucky ones, great. But if not, the autism community can offer you a community, a culture, a social network. And so a lot of the autistic women especially bounce that information off of each other. “Somebody wants me to speak. They're offering me a hundred dollars. Is that reasonable?” And we kind of mentor each other along the way. Now, at 61, I have a lot more tread under my tires, if you will. And so I tend to be much more aware because I've been repeatedly exposed to those scenarios. But someone like Chloe, who's in her late 20s, may not have that life experience. And so we nurture each other and we support one another.
Pat Schissler [00:29:41] If you start from the very beginning, when you were a little kid, you had friends to bounce things off of, to play with them. And our kids are isolated from the very beginning because they're developmentally delayed. So at 3, 4 or 5, they are not playing with peers in the same way. They're doing parallel play much, much longer than is typical.
Karen Ortman [00:30:06] Parallel play is what?
Pat Schissler [00:30:07] When kids are playing, when they're 2 and 3, they're playing next to each other. And then they slowly start to say, you take this toy, I'll take your toy, I don't want you to have my toy, whatever. But they continue playing next to each other because they don't have the skills to interact, which is quickly recognized by other kids. So they become isolated. And the goal is to get a diagnosis early on and to teach them how to interact with children, how to speak to children and how to be true to themselves too, if not to make them play with things that they don't want to play with. But if they are very keen on a certain kind of thing, because they do have strong interests, they tend to hyper focus on things because they are isolated so that they become hyper focused. But if they're really into planes or they're into whatever the common - whatever thing that kids are into, you get them into a group that other kids are into that, too, and they try to expand their horizons.
Dina Gassner [00:31:14] I always joke about in middle school, in a high school, the kids that are getting that information are in the back of the bus and we tend to put the autistic kids in the front of the bus. So they're quote unquote safe. But then we don't even get bad information from our peers, you know?
Pat Schissler [00:31:33] What you try to do is socialize them in many, many different ways, with a pizza night or whatever. So, you know, the victimization is happening in the ways that Dina’s described and we're giving them a community later on. But what you're trying to do is create that community early on so that they have ways of being backed up. There's a book called Pretending to Be Normal by Liane Holliday Willey, who’s one of our, you know, rock stars who wrote one of the very first books and coined the term aspy. And she went, you know, goes back over, what she went through as a kid. Her dad, you know, had Asperger’s, she grew up with some friends who said to her, you know, time to change this clothing item or whatever, time to get a haircut, you know, time to fit in a little bit, that, you know, it also has its downside. But so that was you know, she's in her 60s now.
Dina Gassner [00:32:27] Don't you have to say like that's a big difference with an early diagnosis? You know, my son was diagnosed at 3. He's never known a day when he didn't have support. He'd never experienced any embarrassment or shame about receiving support. We were able to find those five or six Gold Star kids in the class that would have us back. When he was in high school, he was the hydration consultant for the hockey team. And so not only did he have this whole team of this brotherhood, hockey is like a whole cult, it's wild. But he also had all their girlfriends watching out for him. So in his case, having an early diagnosis, having language we could use to explain who he is and why he does what he does and how they can be friends to him and how they can meet him halfway. So much of the burden is put on the autistic person to change and adapt and grow. And that's why we're experiencing such negative outcomes with mental health is because we're exhausted. But he went to Marshall University and they have a program there called the Ally Program. Dr. Brown there in her dissertation started training non-disabled students how to be friends with people who are neurodiverse. And now every freshman coming in at Marshall University gets to watch the movie We are Marshall. So they understand their legacy and they get a training on how to be a friend to people who are unique that might be living next door to them in the dorm. And now they've just initiated ally training for employers. So this is what we as a community need. We need non-disabled people to meet us halfway. We want kids to be nice to the neuro diverse kid in school. But we don't give them any language and we don't teach them. And we have low expectations for them. It's like, oh, we have to hide it or he'll be bullied. But, you know, we don't want that to happen.
Sabah Fatima [00:34:22] Pat, Dina, is there anything else you'd like to share about your organizations today?
Pat Schissler [00:34:27] AANE has a broad reach and is available to anybody who reaches out to us at AANE.org. We have services to provide and I only wish it had been there for me when my son was younger and could have availed ourselves because we floundered for years. We have professionals, we have families, we have groups and online services, webinars, all kinds of education and support and friends. You know, that would make life easy for anybody. Very important. And resources and a lot of heads, that kind of get one another to find better resources, which, you know, we do all the time. So I encourage everybody to reach out to us. There are a lot of problems to be solved. People with an Asperger profile who are very talented and intelligent are very either underemployed or unemployed and they make very good and invaluable employees. So. That's a whole area that we work very hard on, as well as this huge issue having to do with housing. A lot of mountains to climb that we can all use some help with.
Karen Ortman [00:36:02] You're doing great work. Thank you.
Dina Gassner [00:36:04] I wanted to piggyback a bit on the housing issue. Individuals who have never worked or have worked too few quarters in their employment history or those quarters didn't appear recently enough, are only able to qualify for SSI, which is about eight hundred dollars a month. Now, when my son was in school in West Virginia, that $800 a month paid for his one bedroom apartment. Not an efficiency, a full one bedroom. You get that same amount of money if you live in the Bronx. So inherently, not only are we addressing when we talk about housing, we're talking also about a secondary trauma, which is the trauma of poverty. And this system is not designed to empower and encourage people to break through that. And their anxiety over losing benefits, losing health care becomes so pervasive that sometimes they get stuck. So there is a lot that needs to be done. We need more qualified providers. I encourage people that are maybe listening from somewhere other than New York to realize that there are a lot of groups out there that support families. And I lived in Nashville with my son when he was doing the hockey gig and I started the support group called Margarita Moms. And, you know, when you're a mother of a child with a disability, quite often your social circle gets very, very limited and your time for fun is very narrow. And so we made a rule that you couldn't talk about your kid at Margarita Moms. Of course, we get about four Margarita's then and then everybody is talking about their kids anyway. But the group is still going on 15 years later because that need for female companionship doesn't go away, you know. And so I encourage people to be creative. We started that group for this exact reason. I was new to the area. I didn't have any friends. It was just a matter of telling people, hey, this isn't your mother's kitchen table, a support group. This is our Magic Mike group. You know, just to fill a different need. So I encourage people to know that they can make a change in their communities wherever they are. I have to say coming into the autism community first as a parent and then as an individual who lives as an autistic identity, has been healing and soothing and enriching in a way that I could never have projected when my son was diagnosed at three. And they told me he would never, you know, he will never live independently. He will never finish high school. And it took him longer than most people. But we got rid of the clock and he's had some terrific success that looks very different than someone who doesn't get diagnosed until grad school, you know, and they've struggled and struggled and struggled without information and language and understanding. And sometimes the repeated microaggressions and trauma they endure during that time may be relentless enough or persistent enough that we can't unpack it. And all we can do is provide basic supports. So everybody's different. How I have autism is different than how my friend Stephen Shore has autism. But we're both probably more like you than we are like each other. And so just remembering that I think anybody who's a 19 year old at NYU doesn't suddenly develop autism, they've had something different about them their entire lives. They have trouble maintaining relationships. They struggle maybe, or they only have relationships with a small niche of people. They may struggle with these organizational demands. They may have trouble with the free-fall of going from six consecutive hours of instruction to two hours a day of a class thinking that empty space in their is free time. When they should be doing something, they may have trouble deconstructing things. You know, for me, I didn't get any accommodations until my Phd program and they were so simplistic, itt's absurd. And people may devalue them, but not working under fluorescent lights. We just unscrewed the bulbs in my classrooms and I needed to take my comprehensive exams over four days instead of two because it was too exhausting for me. You know, other people need much more hands on support. So there's many post-secondary programs people can plug into, some are for hire, some are private pay. Just, you know, AANE is an amazing resource at helping people with information and referral. If we can't meet your need, we can help you find someone who can or at least send you that way, you know? And so I've been very proud to be part of this. I envied AANE when they were AANHY in New York from afar for many years and Pat, my work colleagues, long before I came to New York, so being part of this family now has been very completing for me as well.
Karen Ortman [00:41:04] Well, I'm so honored to have met both of you. And I think the information that you provide is invaluable. And I so appreciate your time here.
Dina Gassner [00:41:12] Thanks for having us.
Pat Schiller [00:41:13] Thank you very much for having us.
Sabah Fatima [00:41:14] Thank you for sharing your experiences with us. Thank you to our guests, Pat and Dina and to all of our listeners for joining us for today's episode of “You Matter”. Please share, like, and subscribe to “You Matter” on Apple podcast, Google Play or Spotify.