062224 Denise Resnik on the Intersection of Autism and Blackness (Part 1)

and hospitality. Today, we are using her decades of experience with autism to discuss neurodivergence in bipop communities and what happens at that intersection. So welcome to the show.

you know, getting housing and things like this, and again how much more problematic that is if you're a person of color versus if you're a white person. So that and so much more. But before we get there, we are going to, as always, start things off with some Ebony.

ahead of Juneteenth. The pardons will affect, I'm sorry, roughly one hundred thousand people charged with the low level marijuana possession. More described the mass pardon as and a quote far reaching and aggressive end quote executive action amid the growing legalization of marijuana. According to the American Civil Liberties Union, black Americans are three times more likely to be arrested

on marijuana charges than their white counterparts. More said criminal records from marijuana charges have been used to deny housing, employment, and education to people even after their sentences have been served.

nation and a racial equity issue. It's pretty powerful, man, and probably long overdue in a lot of other places, not just in Maryland.

a cousin. My cousin's name is Asher, and Asher was this bright little baby boy. I'm a lot older than Asher, and you know, he was so much fun when he was little. And you know, Asher, it ended up we ended up finding out later that he had autism. And you know, my uncle and my aunt they fortunately they had some resources they were able to to deal with that. They were able to take the time and to invest and to get you know, early involvement from professionals and

so forth and so on. And we realized that that story, for especially for a black family, a family of color, is more the exception than the rule. And you know, one of the things that sort of brought me to you, Denise, is how involved his parents were and indeed how involved our family is with kind of taking care of each other,

we learned. So let me back up a bit. My grandmother she ended up having a stroke before she passed away, and she was committed to a place where I think where they just commit people that have they're like recovering from these like really traumatic whatever. In her case, it was a stroke, and so there was a lot of older people in the place, and it just kind of looked like an old folks home. And I know that

it wasn't that, but that's how it looked. Now, my grandmother had six kids and all, and there were five girls and one boy, and all those kids had kids, So my grandmother had a lot of grandkids, and she changed everybody's diapers, right, So when the time came for her to need to be changed, far be it from us to just simply ship her off to a place and let some strangers deal with it. Especially because she

had that stroke, she could no longer speak. There was an air bubble on the language centers of her brain. So we decided, you know what, she changed all of us, we can change her, right, and we and to be fair, We let the professionals do what they did, but my grandmother.

The point is, my grandmother was never left in that facility alone by herself, and as a result, we were on a schedule to make sure that she was cared for and whatever family members were always there twenty four to seven, and that was just to keep a watchful eye over her. But what I found when I visited First Place was that a lot of the pressure was off. It seemed like a great place. So talk to us a little bit about First.

families are often getting diagnosed before they enter school. We know that our families and individuals of color are too often getting diagnosed at school where they see the behaviors. And so it's really important that we have greater awareness about what is autism. Autism is a neuro biological disorder in our son's case, is making him making it very difficult for him to communicate, both expressively as well as receptively. Early on, we saw the eye contact, but then he

lost that eye contact and we didn't understand why. We thought perhaps he was going deaf, and he had a lot of gi issues and sensitivity issues where he would put his little hands over his ears because the music was too loud even though we were playing it softly, or different pitches were bothersome to him. He continues to wear those headphones because he is hyper sensitive, or some individuals could be hypo sensitive, so not as sensitive to pain or to sensory issues. And so it's really important

to understand those signs. And we've done a really good job the past few decades of helping those pediatricians get it right, helping them understand those early warning signs along with our school teachers to make sure that kids can be diagnosed early. And what is happening now is there's an unprecedented rate of children with autism transitioning to adulthood, some who had early intervention, some who did not, some who have been you know, we've been investing in in

their schools or families. You know, this early intervention, this insurance that covers some of the early intervention too. And once the school bus stops coming, there's a cliff, and these kids slide backwards at a far greater rate than other disability groups. And if someone's not making you, requiring you to talk in full sentences, or you don't have the same structure of a day, you might see more

behavioral issues. And we can't forget puberty. Puberty also is at play here and often misunderstood in terms of how autism and a diagnosis of autism might mask other things going on. So a physician or somebody a professional might see the autism but not recognize that maybe it's diabetes, maybe it's you know, puberty, maybe it's these other things. And as a white woman, I can only imagine what it might be like for a person of color to experience that in the greater community, because I know for

our family that experiences are really important. Practicing is really important, and we don't always get it right. As a matter of fact, communities inclusive communities are perfectly imperfect. We get it wrong, but it's what we do after we get

it wrong. That matters that practicing, So believe me, I got plenty of stink guys in the shopping you know, in the grocery store just down the street here as a matter of fact, of people looking at my kid and thinking that he was misbehaving, not understanding that it was autism. So I wanted to make sure that for all of your listeners that at one in thirty six they likely know or will meet some a child or an adult or somebody in their life that is on

the autism spectrum disorder. And how we approach that with understanding, with grace, with inclusivity is really important, and we need that in all different spectrums, in all different spheres. So I really appreciate this chance to be able to join you and learn from you, and to be able to live my authentic self because my background is community and

real estate development. And when I was receiving that diagnosis of autism and told in nineteen ninety three that I should love, accept and plan to institutionalize my child, I went to institutions and homes not far from where we're sitting right now, and I have to tell you I freaked out there was no way that I was going to place my son in one of those places. So I have been committed for decades to finding a better way, and as a charitable nonprofit, which is First Place, we

can't do it alone. We need all the sectors working with us. So we work with public sector, with private sector, with charitable nonprofit sector. And so for your listeners and their community, taking what they have, and you have your talent, you have your voice, you have your platform. I have

some different expertise. Taking what we have to make sure that we can do the best job possible in our local communities where our families, our loved ones live and practice it and make sure that we get it right.

a big blind spot for me as well. Despite having a cousin who was autistic, you know, there was so much that I just didn't really think about in terms of the ways that affects the condition affects individuals themselves, the ways that it affects people around them, the ways that it could create frustrations for all parties involved. And then there's a whole other facet of it too, which is, you know, how do these people make a life for themselves outside of you know, when you think of autism.

You know, at least for me, when I think of autism, I think of something that is, you know, that kids deal with, and so to reconceive of the concept of autism around an adult and what comes with adulthood, everything that comes with adulthood, not just you know, jobs and and you know, responsibilities and routine and all that sort of stuff, but you know, paying bills and commuting and all these other things that are just part and parcel to that experience. You know, first Place kind of steps

in and fills in those gaps. So I know that we can't call it a facility.

kindness in our community. That we have someone who's a bit more vulnerable among us, how we protect ourselves protect them. And I love this definition of community about the people in our lives. We don't pay to care about us. And you think about your grandmother and the people who no doubt we're checking on her, who aren't related to her either, but who cared about her. And so community

is a really important part. And at first place, we have positioned that property, that building, that apartment community in what is known as the most autism friendly city in the world, and that's according to PBS News Hour. And that series was produced back in twenty sixteen at the time of our groundbreaking.

to include them, and building an inclusive community takes a lot of practice. And I love diverse communities. I'm a woman who's Jewish and bringing our brothers and sisters and people of all faiths in what it does to enrich our lives and enrich our communities. So First Place is an eighty one thousand square foot property designed not just for people with autism, but for people who need supportive housing. And it's for people who might present with autism or

down syndrome, or intellectual and developmental disabilities. Because my sitting here and being a senior doesn't tell either of you what I need or want in my housing. Need to somebody's diagnosis. And that's work that we're doing not only here in Greater Phoenix, but across the country. Helping them, those local leaders, those local stakeholders, understand how to use the same language and expressing need and actually producing housing market data so that they can go to their policy officials.

Because we have a housing crisis. We know that that's no secret. It's important for us to make sure we're not only at the table with our hearts, but at the table with data demonstrating what we want and need and making sure that that's part of the equation.

and loved ones and even strangers in that space. So please find more opportunities you have. You can come here whenever you want, as often as you want, but need to not just hear this information, but hear it from you because the way that you deliver. It is really incredible. It's really welcoming. It's not just informative, but it's I don't even know the right word, like, I'm listening to it and I care about it. I'm not just learning. It's now something that means something to me. And we've

only been here for a few minutes. So as many opportunities as you have to have a microphone in front of you having this conversation, please do it more because it's necessary. You spoke before about the likelihood of diagnosis, especially with regard to the difference in those who grow up in white communities and those that are people of color. We know that the information, the awareness is important not just with the people who care about us, but with

society at large. The way that law enforcement responds to us, the way that educators respond to us when they know that there's someone on the spectrum that's in their presence. How do people in gree or I guess a better way to put it is, how are people more likely to be diagnosed or have access to being diagnosed so that their journey growing up and experiencing the world is

better than if not? Because we've seen how when those behaviors are mistaken, like you said, at the grocery store, and people think, oh, your son is just misbehaving, having no idea how to interpret what they see. How do we increase the likelihood of that?

There was a criminal element associated with these children. And you know, you mentioned that white families often get access to diagnoses and that oftentimes black and brown families don't have access to these same diagnoses. So do SI favor and kind of speak on that a little bit and how that might shape outcomes.

render a diagnosis. The earlier that somebody can get diagnosed, the earlier the benefits can start, specifically insurance, whether that's public or private insurance. And that early intervention is key, but it's not the only time people can learn. People can learn throughout their lifetimes. And so I appreciate what you were saying to you in terms of the passion that I have for this. It is complex, It is complicated.

You want to get to kids early, you want to make sure that the ecosystem, the community is also prepared, and that does take time. And so most recently I was with former Sheriff Great Markopa County Sheriff Paul Penzone, and he has recognized that there are people in his prison system who don't belong there, but they are there because of their autism or an intellectual and developmental disability, and they need to be treated differently than those other

people in prison. And so recognizing what it is and how we can also train law enforcement to better understand the sign so that they are they don't escalate a situation. And so we were just at an international training conference for law enforcement officers, and there are training programs across the country that local communities can access. One of them is called be Safe. We also offer something here at the Southwest Autism Research and Resource Center.