Often, public conversations on Autism and Autism Spectrum Disorder end at childhood—but what does that mean for adults on the spectrum? Host Mila Myles interviews clinical experts from The Jewish Board’s Mishkon program and The Seaver Autism Center on growing into adulthood with Autism in Borough Park, Brooklyn.
Welcome to New York State of Mindfulness, a podcast about mental health, wellness, and the communities we live in throughout New York City, sponsored by The Jewish Board. I'm your community host Mila Myles. Today we're talking about adults with autism in the Borough Park neighborhood of Brooklyn. I'm joined by our own Talia Sclair and a friend from the Seaver Autism Center for Research and Treatment, Dr. Michelle Gorenstein.
Talia Claire is the director of home and community based services for the Mishkon division of The Jewish Board. Talia supervises family support services, community habilitation and rehabilitation programs for residents in the Borough Park area. She has 17 years experience working with the intellectually and developmentally disabled population and many different roles, from direct care and support to co director.
Talia finds working with this population extremely rewarding and is proud to be able to be a part of the growth she sees in the individuals she serves. Welcome Talia.
Dr. Michelle Gorenstein is a clinical psychologist and director of community outreach of the Seaver Autism Center for Research and Treatment. She earned her doctorate in clinical psychology at Yeshiva University, and currently receives funding from the UJA-Federation of New York to help disseminate more effective social skills programs for children, adolescents and adults to community centers across the tri-state area.
Dr. Gorenstein also focuses on treating co morbid anxiety and depression in individuals with ASD, and creating more inclusive community programs for neuro diverse individuals. She also helped to create the discovery squad program at the American Museum of Natural History and serves on the Guggenheim for all Advisory Committee. Welcome, Michelle.
Thank you so much for having me.
A thing that I'm starting to like to do with this podcast more as we talk about various communities in New York and some of the things that they may struggle with, we're talking about autism spectrum or autism spectrum disorder. Right? But I want to get into defining autism to start. Right? Who defines what autism is? Is it the patient or is it just the doctors or is it the collaborative type of thing in the modern definitions of autism?
I'm happy to talk about how an individual gets the diagnosis of an autism spectrum disorder. So at this point, when we're making a diagnosis, it's based on behavioral symptoms. Unlike a medical diagnosis, where you get a blood test, or there's a very defined criteria, autism spectrum disorder is a combination of symptoms, and psychologist and psychiatrist use something called the Diagnostic Statistical Manual, the DSM-5, in order to make that diagnosis.
When we're making that diagnosis, we're looking at two domains of behaviors. The first domain is social communication impairments. This could be in terms of individuals who have no language to individuals who almost sound like little professors, when they're children, who have very high levels of language, overly formal language, it can be difficulties reading nonverbal cues, difficulty making eye contact, or using gestures.
One of the defining hallmark features of autism spectrum disorders are difficulty engaging in developmentally appropriate relationships, and meeting support and social skills. That's one domain, and that's the social communication domain. The second domain is restricted interest and repetitive behaviors. So this is where we take note if there are any motor mannerisms, hand flapping, toe walking, spinning rocking, we might see unusual interest. So individuals who have intense interest in ceiling fans or intense interest in vacuum cleaners, or we can see individuals who have common interest to unusual intensity.
So we see this a lot in the transit system. So individuals who love trains but then will only watch videos of trains coming in and out of stations, note every model of every train when trains were taken out of commission, so we can see both things. Then there's two other things in that domain, one is insistence on routines or difficulty with transitions, difficulty with changes to routine or environment. Then a few years ago, they added sensory issues to this domain.
So in this domain, we also can see sensory aversion. So individuals who are more sensitive to sounds or touches, but we could also see sensory seeking behaviors, individuals who need a lot more sensory input than some of their peers. We look at all these symptoms together to see whether an individual meets criteria for an autism spectrum disorder.
The other thing to highlight is that autism spectrum disorders are considered a developmental disability. So when we're doing an evaluation, especially for an adult, we do like to speak to parents, caregivers, or siblings, people that were around when their individual was a child, because in order to make a diagnosis, there have to be some signs during early childhood, they might not be so evident, and they may have not necessitated treatment at that time, but there will always be some indication, some social or communication difficulty, some restricted interest, repetitive behavior, in order for somebody to meet criteria for ASD.
Thank you for the definition. I mean, not definition but that explanation really. Right? And talking about how one might be able to start the process of assessing if someone meets some, if not all the criteria. For you as specialists, what are some of the assumptions that when you talk with families or the individuals, I guess, what are some of the assumptions or I guess stereotypes or bias around ASD that you end up having to face down while also looking at this and trying to find out if there is an actual diagnosis of ASD there?
I don't diagnose people, but within the times that I've been working with families, the hardest part for families is that, everybody is different, every family is different and every child is different. So everybody's needs and how their autism comes out is different from person to person. You might see some similar things between two individuals that have autism, but everybody's comes out differently. It really varies based on families and individuals. I've worked with families that they don't want their kids feeling different from anybody else, and they want them involved in everything that's mainstream.
There are other kids that can tell that and they say, "Oh, the kid's weird, the adult is weird." It comes off like people who know that they're different. I've worked with high functioning autism individuals that they know they're different. To find services for high functioning autistic people has been very difficult because to find where they fit in and they feel that, they feel like they're outsiders. That has been my experience with people that I've worked with.
Yeah, and I was going to just go back a little bit in terms of, you're asking how people get to a diagnosis. I think the route that kids get a diagnosis is somewhat clear. So often, hopefully, all pediatricians during a child's and infants well visit will do what's called the M-CHAT, which is an autism screener. It's a recommendation by the American Academy of Pediatrics that all pediatrician should be doing this.
If a child or if a parent answers in a certain response, that would flag the child, and the pediatrician at that point should make a recommendation to early intervention to get a full evaluation. That's how we see a lot of kids coming through either parents are aware, preschools are focusing on development and are pointing out if there are any concerns with regards to social skills or language. They would often then be referred to either a developmental pediatrician, psychiatrist, psychologist or a neurologist.
There are lots of different ways that people get a diagnosis. I would say for the adults that I work with, it's a less clear path. So often an adult unfortunately comes to my office after they've had some difficulty either at work, some difficulty in a relationship that has forced them to ask themselves, "What's going on? Why am I having this difficulty?" So we often see a lot of adults coming after they've gotten terminated from a job or after a significant relationship has ended. I would say, I think the path for evaluations for adulthood often unfortunately comes after a stressor.
I'd also like to add that early intervention is usually key to a success for an individual. That the younger that they are that they're exhibiting symptoms on the spectrum, and they're treated as early as they can be treated and diagnosed, there's a lot more room for growth. When they tell you that kids can soak up learning a new language when they're little, three, four, or five to whatever age, from newborn age, you speak to them in multiple languages, they'll understand multiple languages, it's the same kind of theory.
If they're treated earlier, those skills that they're learning in early intervention will most likely carry through into … transitioning into adulthood.
That's great. It actually goes into my next question. I know that early intervention, almost with anything, right, especially with children can make a huge impact in their lives. Well, I guess you already explained what warrants a diagnosis for an adult. Right? You said when they are having difficulty in their life. I've seen that with people that I know in the last year, a lot of people had space and time to face those things down and seek the help that they need. But how have you seen diagnosis impact an adult's life when there's later intervention.
I think the point that I would like to just highlight is that I don't think the stressor warrants the event, I think often that's kind of the aha moment for an event; I would love to get to a point where autism spectrum disorders are more accepted and not viewed as a disorder, and people were kind of open to the idea of, "This is something I've always struggled with, even when I was little." Being able to interact with peers on the playground was a challenge, and I'm going to get an evaluation and see if that helps me figure out maybe why things were difficult or why my brain works a little differently.
So I hope that as we talk about this and do podcasts like this more and more, that I would love to get to a place where it's not that negative interaction that makes an adult realize, because the whole purpose in getting a diagnosis is to get services and supports that an individual needs. When we're thinking about diagnosing adults for the first time, we're talking typically about individuals who have more language, who probably are average or above average IQ, because they were able to get through the school system without any supports.
So in terms of what that diagnosis offers, and what I've seen, it offers the sense of understanding and this perspective of why things have been difficult. I always like to think of autism spectrum disorder similar as a learning disability. So somebody who's dyslexic, it's not that they can't learn to read, but it's that they need to be taught differently. If we think of autism spectrum disorders as almost a social communication learning disability, it's not that individuals can't learn social skills or can't have meaningful relationships, but they're going to need to learn how to have conversations and socialize in a different way than some of their peers, more explicitly.
So I see often, there's a lot of relief that comes with that, and also when we're working with spouses, helps a spouse understand maybe why their partner is having certain difficulties and helping them learn ways to communicate, figuring out in the workplace, what accommodations might allow this person to be more successful. So I look at the diagnosis as a tool to get connected to providers and supports that are necessary.
I want to also just backtrack on and add in that if you think about the history of people with developmental disabilities society wise, people with developmental disabilities and spectrum disorders are looked at in such a negative way. It's looked at as like I said before, "You're weird, you're different." What we try to do is incorporate the people that we work with and the people that we serve into society so that they feel like productive members of society and that they're contributing to the world like any other normal typical person would contribute to the world, and into their community.
So, certain terminology is also really important, because we want to make sure that all people feel that all belong within the society.
Yeah, I have to say I've noticed more language around neurodiversity being used on all of my social platforms, even this voice note app, Clubhouse, you may have heard of it. I've participated and also been in the audience for various conversations, and a few of them namely, were conversations around neurodiversity, and some of them being led by people with ADSD and moderated by people with ADSD and specialists in those fields as well. And you have neurotypical people in the audience, so everyone's there to share and learn and better understand.
As Clubhouse app started, I started to see so many people's bios on Instagram start to change whether they've received a diagnosis or coming out with their diagnosis that they've always had, or sought out a diagnosis or self diagnose which we'll get into. Or just want people to know that it's a safe space. I've seen neurodiversity, I don't even think that was in my vocabulary, a year ago.
Now it's a constant conversation and intersectional spaces, and getting into that, wanting everyone to be able to, and getting their diagnosis, to feel like they're a productive part of society, a functioning part of society, and appreciative, not just productive, right, actually, no idea of anyone being productive and to be seen unappreciated. Right?
But as these conversations have been happening more and as I'm talking to you all, there's two things that I've noticed for a long time, and I'm so happy that I can just speak to you too about them today, is a lot of the services and funds, there's a lot of racial and gender based disparities and diagnosis, but also ageism plays a role as well. I think that's where a lot of resources, whether they're grants or community centers or anything, especially when it comes to diagnosis for people who are neurodivergent. Right? There's a lot more opportunities for children than there are four adults.
I don't want to throw out statistics, some statistics here, ASD is diagnosed 4.5 more oftentimes in men than women, and also saw that boys are diagnosed as early as the age of four, whereas girls is somewhere around like nine or 12.
Yeah. In terms of when we can start diagnosing-
The tools that we use to make an accurate diagnosis can be used in kids with a developmental age as young as one. So we can start making that diagnosis very, very early on. Unfortunately, what we see is that, minority groups get the diagnosis much later, and we do see that disparity, and in terms of the gender differences, so a few years ago, the ratio was five to one. As you pointed out, it's gotten closer. I think now it's somewhere between four and 4.5 to one in terms of males to females.
So the tool that we use is called the AdAS, and it's a semi structured assessment, where we look at how an individual communicates, how they socialize through different prompts. What we're realizing is that sometimes we're missing these girls, and girls on the spectrum do present differently. There's a lots of research right now being done to look at the tools that we use to diagnose girls on the spectrum, especially girls who are average to above average IQ.
Because often they're able to get through elementary school without supports, they don't necessarily have the same issues on the playground as boys on the autism spectrum. So I think what we're going to see in the near future is that number getting closer and closer, because I think a lot of that might have to do with the tools that we use to make the diagnosis, but we definitely do see boys presenting more frequently.
Can I ask what is the range of things that we might see in a girl that is diagnosed, that's different than a boy that's diagnosed? I hope you don't mind that I jumped in and asked a question [crosstalk 00:20:26]
Yeah [crosstalk 00:20:28]
I'm the host, this is a conversation between all of us.
Yeah. I think it's more subtle, I think we can start seeing more social deficits in middle school and high school where the social situations are less structured. So we might see kids girls not being able to read nonverbal cues, not being able to pick up on if somebody is not interested, right, not getting those subtle hints.
When the DSM changed from the DSM-4 to the DSM-5, there is now a line that allows us to make a diagnosis, if there were some soft signs early on, but the significant stressors or delays weren't apparent until … I think, I don't want to misquote it. I don't want to say until the social demands exceed the capacity or something of those lines, to allow us to make that diagnosis in girls where they were okay in elementary school, but are more challenged with the less structured social environment.
How do you see with the adults you've worked with? Our version of school is work. But a lot more serious and a lot more online, how do you see that kind of translate later in life for adults with autism in the workplace? Or does it depend on the culture or field of work?
I actually find that people with autism that are diagnosed than adults know their diagnosis, I know Michelle had said before, sometimes that diagnosis can be made as an adult based on something that happens within their life. But people that I have worked with in the past, adults that have long lasting jobs and have been working in something—it's something that they find that's of interest to them, is something that they like to do, and that they excel at.
Like Michelle explained earlier, some things that you'll find is that with people with autism is that they have hyper knowledge on a particular subject. So for us that's trying to assist them in finding a job or employment and gainful competitive employment, we're going to focus on those things of what their knowledge is, and what we know that they excel at and are good at. So that way, they're going to be more successful. We're not going to put somebody that he doesn't know how to use the computer in a job that's data entry, because that's setting them up for failure.
I wouldn't want to do that if I don't know how to use a computer, and if I don't know how to use a computer and type something in, I wouldn't want to do that job. So it's the same thing as somebody with autism, we're going to find something, we're going to assist them. We know that they're going to be successful. We don't want to set up anyone for failure.
I think there's definitely been a movement over the past, I guess, 20 years that I've been in this area of work into more customized employment. So as what Talia was describing, not just thinking, "Okay, this person has autism, so this is what they should be doing." Thinking about, "Okay, what is this person's strengths? What are they interested in and finding a job where they're going to excel based on their interests.
So I would say that has definitely been a movement that I think, hopefully will stay, and we're also seeing that even in like Silicon Valley, large corporations are recognizing, again, not for everybody on the spectrum. But there's definitely a lot of individuals on the spectrum who are very numbers oriented, are very detail oriented and are probably going to be more skilled at computer programming than most of us.
So we're seeing companies shift how they interview people, where it becomes less of a social task, and more of, "Okay, here's, code something, and everyone has to code something, and whose product is the best? So we definitely are seeing them shifts. I think it is slow and it's happening quicker in some industries than others but hopefully we'll all get to a place recognizing that like traditional interviews might not be the best way to assess if somebody is going to be the right person for the job.
I didn't even realize that. I've noticed a shift in the last few years and how my interview processes have changed, and I didn't even realize, especially media based and technical jobs, I've had more opportunities in the last four years where jobs have asked me to take a packet home and work on that, instead of coming in, I didn't realize that that was opening up so many opportunities for so many other people who learn and work differently as well, I really didn't even know that. So, that's really good to know.
My friends who are entrepreneurs, I'll make sure to keep that in mind to tell them when they're hiring new people to offer all those other options, just like you said earlier, Michelle, that you know that in the next years, we're going to be seeing a change in balance or imbalance in diagnoses.I think the same thing is happening with conversation, and that's why, because the more people are feeling empowered, and it's being more normalized.
I will say, I think, obviously, COVID has been challenging for everybody, but especially for individuals on the spectrum and their parents. I think the silver lining though is, as you were saying, like virtual programming has allowed individuals from all communities, whether they have lots of services available or not to connect. So adults who have very specific interests can connect with other adults, and more and more programming is being offered to anybody who can log in.
So I think that is the silver lining, and I'm hoping that it sticks as we go back to in person recognizing that virtual is an effective platform for some individuals on the spectrum who, for whatever reason, might not be able to access in person services.
Also, talking about access and disparities in different communities, we talked about gender base, but also LGBTQIA, and people of color as culturally, I know there's a lot of stigmas around ASD, I'm just wondering, have you seen a shift or are you hoping to see a shift, I guess, in your offices and the people you work with as well as services?
Because a lot of the people are oftentimes lower income, and we see a difference in the services offered in lower income areas and to families, I guess, I don't know, I just want to know what you've seen and what you know, has been more helpful for those people, adults, as I think adults, even more so than the children in those communities, but adults and the families in those communities, impact their families, and I guess, eventually reverberate throughout the community.
I think for a lot of the times in the lower socio-economical communities, it's such a taboo topic, it's frowned or shunned upon to ask for help a lot of the times, and this might be just my assumption, but I think it's what I've usually been seeing is that it's something that we don't talk about, that's the mentality, and we now need to go, "Everything is fine." Kind of thing.
But it's not even just in those communities, a lot of it can be very cultural, certain parts of the world, and certain countries and certain states even don't even want to talk about it or acknowledge that people can have developmental disabilities, so that reaching those communities and just normalizing it, and like Michelle said earlier, it's making sure that it's just not any different than anybody else, and that people with autism have to learn differently, and their brain works differently, and that that's okay, it's trying to reach those communities.
Reaching those communities to make sure that everybody knows that these things are okay, and now let's work on helping and getting the resources needed to help the person progress further in their life and to what they want.
Yeah, and just to echo what Talia was saying, through my grant from UJA-Federation, I'm all over the tri-state area. So I'm working in Brooklyn and Queens and Westchester, and I will say I see culture as being almost the biggest factor that there are just some cultures that don't want children to be pulled out of class.
So I had a student who was nonverbal, but was in a regular general education class with 30 kids and one teacher, but wasn't able to communicate the way that the teacher would be able to respond to. So I see culture as a huge barrier. I think what makes especially hard for adults is that through early intervention in New York, from zero to three, if you call, a parent calls, they can get an evaluation for free access services, from three to five, it's the committee for preschool special education, from five to 18, it's the committee for special education.
So as long as parents are open and having dialogues with the school, there are points of access for evaluations for free and for services, the challenges after school age, some adults with autism are eligible for services through the Office for People With Developmental Disabilities. But for individuals who have autism, but have average or above average IQ are able to live independently, there's not necessarily a service system, or low fees supports for them to access.
So often, for adults on the spectrum, we see an increase in anxiety and depression. So, seeing a therapist to get support. Unfortunately, right now, there's not that many therapists in the tri-state area that specialize in working with autism, that take private insurance. So I think for a lot of adults who don't qualify for services through the state programs, there are not many services that are low fee.
The people that generally have difficulty qualifying for adult transitioning into adult services, or going into that Michelle is talking about are usually the people that are born, they're considered borderline, their IQ doesn't meet the requirements to fit to receive services from OPWDD or Office for People With Developmental Disabilities, acronym is OPWDD.
So for those individuals, they still require services, but sometimes, because they're so borderline, they are denied services, because they're so high functioning, but they do need some assistance. A lot of the times it can be a fight for families and for individuals to receive services that the people that are in that are in that boat, but even once you do, are eligible for services, we can open what's called OPWDD eligibility, that's when you first go into the OPWDD system, and it's all paperwork, and you'll receive this OPWDD eligibility that says, "Oh, yes, now you can receive services from the state."
I mean, you two are actually going in the direction that I was going in and wanted to ask you about. So thank you for that, actually, because we're talking about the community spaces that do exist, and I see that in Borough Park, many faith based Jewish community spaces and schools for people with ASD, but a lot of them are child oriented.
Because of the disparities, not just in Borough Park, but especially in Borough Park, because of the racial and gender based disparities, how do you feel community space can look or what do you feel like they should look like to be more inclusive of adults? How can providers better adapt their practice to be more inclusive of adults?
I was actually thinking about this earlier today, about a lot of providers, they're just not trained, they're not trained in knowing how to work with individuals with developmental disabilities and people with autism. Ignorance sounds rude, but there is just the lack of knowledge on how people's brains work differently, because they're just trained in general, let's say, a primary care physician.
They're just trained in treating somebody for physical or whatever other things, but when they're presented with somebody with autism, and they have to do a physical with somebody with autism that might have sensory issues, and is nonverbal, they don't know how to handle those individuals and those people. That's just because of a lack of training. A lot of doctors should … I feel like it should be starting from when they're in medical school doing this, there should be some course on how to deal with people with developmental disabilities. That's my opinion. It should start from the beginning and then have continuous training.
Kind of just echoing what Talia was saying I think it really does have to do with training because I think obviously a physical is going to look like physical. Right? But how we approach an individual and how we communicate with them, and what modifications we use are going to change, and I think that does come in with education. I think it's educating people in the community. It's educating our physicians, our staff. It's something that at Mount Sinai, we are definitely doing in our pediatrics department in terms of training staff.
It also goes to universal design, because if we create visuals and support and help doctors and nurses and staff be able to meet the needs of individuals on the spectrum, we're also going to be helping them meet the needs of a child who might just be having a difficult day that day, or a child who doesn't have autism, but has ADHD and sensory issues. So I think if we can give people tools and best practices, it will not only improve inclusion for individuals with autism, but I think it will just improve everybody.
Yeah, I definitely agree with that. As I'm seeing these conversations take place more and become more common and socially acceptable, I was able to … but I'm still a little nervous about it, but I came out to my job this year, in more ways than one, but also about having ADHD, which I never disclose at work, because I mess up here and there, or forget things. With the sensitivity of everything in the last year, I think it'd be better to just be honest about this now than later.
But again, if people like you or the providers, the facilitators, even people like me, either someone with ADHD or someone who knows people with ASD start to continue to have these conversations, but also practice them out in public, when we might meet someone who we might think is having a difficult day or being difficult towards you, but to not internalize it and take that personally, I think that it'll start to reverberate through our jobs and how our jobs approach things and approach people.
I can only imagine what happens with a lot of my friends who have to disclose that they have ASD or anything else cognitively going on and they can do their jobs, but sometimes they might need a break or a day or to take a walk during lunch. You're right, it definitely doesn't just stop with the providers. It definitely doesn't stop with the caregivers, it is really a whole community and cultural effort that needs to participate in that shift.
What are some tips you have for adults who might think they have ASD because I know there are a lot of people who are self diagnosing, which I know can also be acceptable for some spaces, I've met a few people who are self diagnosed, I do think that it's important to come and see a specialist as well, a compassionate specialist and not someone who's just trying to sign prescriptions. So, what are some tips you have for adults who think they might have ASD or people who are newly diagnosed with ASD and are trying to navigate that?
So I will say we see a lot of adults at the Seaver Center who are self diagnosed or who are taking those quizzes online. When somebody calls me and is looking for an evaluation, and again, often these evaluations are expensive and are sometimes not covered depending on somebody's insurance, my first question is, "What is the purpose of the evaluation?" And obviously, if it's to access services, they're going to need a formal evaluation.
But if it's just for ourselves, a sense of self understanding, I always question like, "What would change if I said you didn't have autism, and what would change if I said you did have autism?" Because sometimes if somebody identifies that, and that gives them a sense of relief, but they don't need any supports at work, they are able to function independently, and they just wanted that answered, I always talk to them on an individual basis, decide whether it's something that they really should be pursuing.
If it's something that you've wondered about talking to your general doctor might be knowledgeable. If you are working with a psychiatrist for anxiety, depression, ADHD, which we often see in adults on the autism spectrum, that would be a good person I would start with because they would have a sense of whether or not you might be meeting on the DSM criteria. For some individuals, depending on their insurance, starting with a neurologist or a medical doctor is covered but getting a thorough evaluation might not be.
So there's not one size fits all, but I always focus on like, "What is the purpose of getting that diagnosis?" For those that might have recently got a diagnosis, there is an amazing online support network for adults on the autism spectrum called AANE, and they have lots of wonderful online support groups. They have pre COVID meetup groups in New York, in the city and I believe in Long Island, I would definitely check out that website.
There are lots of wonderful books about individuals who are on the spectrum and their experience, which I know can be really helpful for adults on the spectrum spouses, family members, and there's also very specific books I have behind me, a few books on some individuals who are transgender and artistic and writing about their experience. So finding connections with people I think is an important piece when you get a diagnosis.
Thank you to our guests, Talia Claire and Dr. Michelle Gorenstein, for joining us today. To learn more about their work in Borough Park, check out Jewishboard.org. Lastly, remember that you are not alone. If you or a loved one lives in NYC and needs mental health services and support, call our non emergency intake line at 1-8-4-4-O-N-E-C-A-L-L, that's 1-844-663-2255.
Thank you, you too for spending some time with us today. I love this conversation, and I'm truly, truly appreciative for the work that you do and all that you disclosed today.
And thank you for having me, and Talia, thank you for inviting me.
Thank you for coming, Michelle, and thank you so much for having me.