Episode Transcript
Speaker 0 00:00:00 Great for the racial reckoning projects and Georgia Ford racial reckoning, the arc of justice <inaudible>
Speaker 1 00:01:01 And good evening. Thank you for joining disability and progress, where we bring you insights into ideas about and discussions on disability topics. Thanks so much for joining me. This is KFA 90.3 FM Minneapolis and kfa.org. Charlene dolls. My research team. Thanks for being here. Charlene. Annie Harvey is my engineer. Thank you, Annie. Tonight, we are speaking with Chris banks. Uh, Chris is the president and CEO of autism society of America, and hopefully we'll be coming in Ellie Wilson and Ellie is executive director of Minnesota autism director, uh, of, yeah, of Minnesota autism. The topic tonight is obviously autism and, uh, we'll be talking about autism acceptance month inclusion and the celebrate differences campaign. Thanks for joining me, Chris.
Speaker 2 00:01:52 Thank you for having me, Sam. I it's a delight to be here and to talk with folks over in the cafe AI family, because Minnesota does a terrific job of providing some supports and services for individuals and their families in the autism community. So thank you for having me.
Speaker 1 00:02:08 Sure. Well, I'll tell you what, um, I need to, uh, get started. So I'm, I think, I think until Ellie, Ellie comes on, you will be alright, but first of all, though, I want to, I want to get to know you a little bit. I want to know like how, who are you, how'd you, how did you get into autism? What, what drove you to want to have a job like this?
Speaker 2 00:02:36 Sure, sure. Thank you for the question, Sam, because a lot of people want to know what's my connection to autism, right? I think that's really what the, the question is about. Yes. Um, I am not an individual on the spectrum or do I have any relatives in my immediate family on the spectrum? I have a second nephew, a grand nephew who is both a dual diagnosed with down and autism. Uh, but the, I have a long family connection with developmental disabilities, um, and have family members who have worked in this space. And I have worked in the human services space and in a variety of different capacities over the last 30 years. Um, I love to tell people I'm a, I'm a fundraiser and that's been, my career has been in the not-for-profit world. I've spent over 30 years doing it. Uh, whether that had been with the national theater training school for the handicap, which was a theater training school that also taught individuals.
Speaker 2 00:03:36 We wanted to be actors, how to bake so they could earn money when they weren't acting. Um, and it was a great program. We ran a school in Belfast, Maine. I also have been involved with individuals who had special needs through Make-A-Wish and, and then in healthcare I've been the director or the administrator or an, uh, a vice-president for, um, to community health systems and hospital systems with multiple hospitals, multiple patients, and then most recently with an assisted living community. So the idea of being involved with, uh, organizations that are making a difference in people's lives is really at the core of what I do. Um, as an individual, I think that it's so important to be able to connect with mission. So having said all of that, Sam, the question is, how do I get to what doesn't right, how do I get to the autism and how do I get involved in it and how do I become, um, what I hope to be, uh, is an effective communicator and a champion of the cause that we are trying to, to promulgate the autism society of America is fulfilling a unique role within the autism community and has since 1965, when we were founded in, when I was a first approach about helping the organization.
Speaker 2 00:04:49 And I think they were looking for somebody who had some not-for-profit experience and he could resonate with this. And, and I'm, I'm sure they've talked to some folks who had previously hired me and said he, he was able to identify with our mission and then carry forward our mission. And I think that's what I do. I, uh, I work best when I can identify with mission accurate. I can totally identify with the mission of improving the lives of individuals and the families impacted by autism. Right. I could totally get that. And I saw it. I really spent a lot of time, uh, over the last 15 months I joined in January of last year. And I last 15 months have been about learning about orphans and learning about its impact and learning its effects and learning how the autism community, the autistic individuals are, are such a great part of our society.
Speaker 2 00:05:38 And we'll talk more about that. I'm sure, but it also is about the needs and the injustices and the opportunities for us to have an impact on it. And, you know, ultimately it's about helping people fulfill their potential, recognizing yourself worth and value and live quality lives that are full of happiness. And, um, and, and what a great thing to be a part of that, you know, I, I get to put my head down on the pillow every night and, and have confidence that the work we're doing at the autism society of America and with our 75 affiliates, including autism society of Minnesota, I have confidence that we're making a difference in people's lives. And that's a great feeling.
Speaker 1 00:06:20 Yes. Well, I'm glad that you, um, agreed to do this. And this is I think, a very important topic. Uh, I'm almost positive that so many people know somebody on the autism spectrum, but they don't know always that they do. Um, my first encounter with autism was, uh, when I was in high school and I had, I was helping someone teach music therapy too, for kids that had it. Um, and they were all over the spectrum. Um, so without going too much further into that story, can you tell me a little bit about, uh, what is autism and how has it typically diagnosed?
Speaker 2 00:07:05 Sure. Uh, so what is autism, how it's typically, um, recognized I think is really what you're you're, you know, what a great segue, because Sam you're absolutely right. We, we probably know somebody with what this, or somebody who's been impacted or affected by autism. We just, they haven't told us. Right. Um, and it's one of those invisible developmental disabilities, right? As our most intellectual developmental disabilities, you don't see that typically.
Speaker 1 00:07:32 Well, sometimes though I have seen, I have seen severe, but, but go ahead and give us a,
Speaker 2 00:07:40 But typically you don't, and, and, and it's one of those things that we have to look through, but what I was going to say is that, you know, when I first, when it was first announced I was coming on board, I was just floored by my friends and my network of people who were telling me, I have a son, I have a granddaughter I'm on my niece, my wife. And it was like, wow, I didn't know this. Right. Um, and, and there's this a psychological report is put on me. You see what you want to see, even though you're looking at the thing all the time. And, and, uh, you know, whether that's a hole in the wall that you see as you walk down the hallway and it's been there all the time and you just don't see it right. Cause it's part of it.
Speaker 2 00:08:19 Um, but you know, autism is one of those, um, you know, I think it's important to look at it as, yes, it is a developmental disability. It is recognized as such. And it has been, um, something that gets my medically diagnosed by psychologists or physicians based on assessment of symptoms and diagnostic tests. Um, and it is something that has been identified as, as such, uh, most frequently by psychologists using the diagnostic and statistical manual or DMS five, which was released in 2013 by the American association. You know, when we think about people on the spectrum of people with autism spectrum disorder, right? Um, waffler, they often are dealing with, uh, social, emotional, maybe communication challenges. They may repeat specific behaviors. They may not respond well to change in their daily activity. Um, but many people with ASD have different ways of learning, paying attention or reacting to things.
Speaker 2 00:09:24 Um, and I think that what we're doing with the autism society of America is reminding people about the importance of early childhood diagnosis. And, you know, these signs are, are, are things that pediatricians should be paying attention to, and parents should be paying attention to however many people. There are people. Let me rephrase that who are diagnosed as adults. Um, I'm friends with somebody who who's in his thirties and he was diagnosed only a few years ago. I know a woman who, who wasn't diagnosed until her late twenties. And, uh, it's just a matter of, of having that awareness and getting that diagnosis to then make available the supports and services that are there, uh, to help people deal with and work with and interact with people in ways that are more appropriate based on who they are.
Speaker 1 00:10:15 Okay. Are there different types of autism and are there also different causes?
Speaker 2 00:10:22 So, so interesting. Yes. There are different, you know, the, the DMS, uh, does identify different types of, we hear this word spectrum, that autism is a spectrum, right? And so we have, there are some words that we try to have to change the dialogue about. And so I'll try to use the words that we are encouraging people to think about, and that is individuals with high support needs and low communication skills, which one might see on a different continuum. Then individuals who have a high communication skills and low support needs. And it's everything in between. We've heard the word severe or profound, and, you know, the national council for severe autism continues to, to talk about that. Um, as an important part of remembering, they, two individuals who are more profoundly affected or severely affected by autism are on the spectrum. And then we have, you know, the autism, uh, the autistic self-advocacy network, which represents and promulgated the supports and services for self advocates who are saying, who have those individuals may be able to represent themselves in different ways and communicate differently for themselves.
Speaker 2 00:11:35 And then you have varieties within that, including Asbergers, which some people may be familiar with, or, you know, the term. And we have, we also have, you know, some misperceptions, right. Just because somebody could count how many toothpicks fell on the floor when they fall of a box Allah, Dustin Hoffman arraignment. That doesn't mean they're on a spectrum, right. Um, there's been lots of perceptions about whether Sheldon and the big bang theory is on the spectrum, right. And, uh, whether or not Albert Einstein was, or you could pick a variety of different people. There's a lot of genius within all of those individuals, whether they're not on the spectrum or not. I don't know because I didn't, they have not told us. Right. Um, that, that was the thought process. So I think there's a lot there. And, you know, the spectrum is broad and it's wide a colleague of mine in Qatar, in the state of Qatar in the middle East, talks about how all of us are on the spectrum. Neuro-typical and neuro-diverse because we process differently in our own way, based on personality, we communicate differently based on our own personnel.
Speaker 1 00:12:43 So obviously though there has to be some kind of, um, guidelines, right. That one would go by. So if you have, if you tend to blank, blank, blank, blank, you know, maybe there's three or four things you probably are on the spectrum. What would that be?
Speaker 2 00:13:00 I don't know that I could, I could identify that specifically because it is so germane to the individual, but, you know, the American psychiatric association has put this manual together and there are some clear things that physicians pediatrician specifically, we will look for. We're developing language and speech development. Um, those are, those are, um, indicators that your pediatrician will look for. And obviously if you're a parent with multiple children, you know, you'll, you'll start to identify where the, my child is speaking at the same time, this child as the next child. And that's where it is. But, um, there's a, there's a quote by, uh, uh, many people have used it, uh, notably Dr. Steven shore, you know, when you've met one person with autism, you've met one person with offense, right. It just gets manifested in so many different ways. There are similar things that some have, but not all, whether it is the stemming, whether it is the, the challenges with communication challenges with emotional or social interaction. So the challenging with eye contact, um, those are all things that we see in many individuals on the spectrum, but not all
Speaker 1 00:14:10 Now are there causes and regional differences to numbers of people with autism.
Speaker 2 00:14:18 So the, uh, the CDC, every two years produces a report that demonstrates what the, um, what, what the prevalence of autism is. Right. And we have seen that number go from 101 to one 25 to one in one in 54 over the years. And last year, the number came out at one at 54. I think it's important to remember that that, that diagnostic testing is done on eight year old school children, boys. Right. Um, and, uh, that's how that number is, uh, distinguish we'd know that it has no economic prejudice. It affects individuals, uh, of wealth or poverty. We know that it has no difference in racial preference, but yet we know that individuals in the black community are affected by it and don't have the supports and services at their disposal like others do. And we need to address that. We know that it affects individuals in the Hispanic community, in the Asian American community.
Speaker 2 00:15:22 It does not have a racial bias there. It, it affects all of us. Um, and as a society, I think that there ha there's science associated with the genetics of autism and the family, genetics of autism and, and the likelihood of it being, um, manifested in, uh, an, uh, offspring and go back to see whether another, uh, an uncle had it or a grandfather or a father. So there is some genetics there, there's no doubt about that. There's been a lot of talk about whether or not there was environmental conditions for it, whether or not there were regional conditions, as you just asked Sam, you know, and, and, um, you know, many years ago there were studies about whether or not individuals who live closer to a Superfund areas or toxic waste dumps were more likely to have children with autism or not. And that, that has not proven to be, uh, sound, um, as at a variety of other things.
Speaker 2 00:16:20 And we know, or the concern about, and I don't want to get into the debate, but you know, about whether or not the backseat, once one scientists produce that report 125 other reports have been produced to debunk that, um, for a variety of different reasons that scientists lost his medical license and was removed from the academic institution that he was working with. So, um, I think that more, more, more science has been done on it. Uh, folks at a lot of different research institutions are focused on this, looking at the cause of it. You autism society of America appreciates that work and is focused on program supports and services for individuals who are diagnosed with autism and their families.
Speaker 1 00:17:03 And I presume, um, with autism that the symptoms are usually showing up when children are quite young
Speaker 2 00:17:11 Sure. Where we are encouraged early diagnostic diagnosis and testing, um, uh, in when child's 18 months. And, and that is a great indicator, as language is starting to form. However, however, I think it's important to note, there are individuals on the spectrum who their families can talk about how they had a vocabulary of, uh, uh, equivalent number of words equal to that, of their peer group. And then they seem to have lost the ability to communicate from that after that. So it did diminish again, some of the anomalies here and then some have not have that language development skill or capacity at all. Right? So we have, there are non-verbal or non-speaking individuals in the spectrum, depending on how they choose to identify themselves who use automatic speech devices, whether that's a, uh, a communicating device, like a, um, an iPad or a computer, or, you know, some have facilitated communication with, with spelling boards, variety of different ways that individuals with autism society of America is a firm believer in the options that families have. You work with. You do what works for your family. You do what works for that individual. Um, and the individual does what works best for them.
Speaker 1 00:18:32 So when, excuse me, when you talk about an adult being diagnosed with autism, I had just assumed it was because they're dying. It was just missed, but can it appear later in life?
Speaker 2 00:18:46 Well, I think you're closer to the truth in the statement that when you say that they were diagnosed later in life, they may not have ever been diagnosed prior to, and there was an anomaly of, you know, why are these things happening? And I have to look at this differently and as they become more included into the conversation and more included into the science, we're aware of the science, we're aware of the issues around autism, they start to start asking those questions of themselves. Wait a minute. I seem to have that challenge. I seem to have those signs. I seem to have those indicators. Um, it, it, it is a state of who they are and, and, and that's part of what the autism acceptance month is all about. And that is recognizing, this is what the individual brings to the table, right? This is who they are, and we're going to accept them for that.
Speaker 2 00:19:37 And that doesn't mean complacency it's, this is who you are, and these are the supports you need, and we're going to make those accommodations in the workplace or in school place. So there's a variety of different ways to look at that. Well, in the favorable side, I think, um, but there are lots of programs and services. We do a lot of programs and services for children to help them develop the communication skills, to help them develop their routines and schedules, uh, individuals with autism tend to like structure and scheduling. So you'll see that in classrooms where there are children with autism, you know, you'll see schedules on the board or on the wall and color coding and, and the neat thing about that. And I've been in those classrooms to see it. It helps everybody know there are a lot of benefits entry, and for some of the things that we do to make accommodations for individuals without cause that help all of us.
Speaker 1 00:20:31 So obviously you guys have dealt with the whole myth about vaccines and autism. And right now, I think is a special time because we're having so much stuff go on with the COVID and you can't escape. So how do you deal with that whole people being nervous about that? And also, I know young kids aren't really getting vaccinated for that yet, but it will come. And, um, so how do you deal with the whole topic of, yes, you should still get your vaccines and you should still get, um, the COVID vaccine and the autism really isn't a piece of here.
Speaker 2 00:21:11 Sure. Sam, we have spent a lot of time at the autism society of America on this topic. We actually started looking at it, add it, and we're going to present and work with it in April of last year, because we knew there was eventually going to be a vaccine for this flu pandemic, this covert virus, just like any other time. We knew that that was going to come. We have a panel of professional advisors, aggregation, scientists, physicians, clinicians, who have been helping us and advise us on this. We have a great relationship with the folks at the CDC. They have a, they have a subcommittee just for autism. And, um, I'm proud of that. The fact that, uh, the autism society of America sits on that panel, uh, myself and my vice president for public policy, uh, Ken Machino, sit on that. And that has helped us to be informed of what's happening to understand, to ask questions.
Speaker 2 00:22:08 It also allowed us as the autism society of America to lead the autism community last fall, late fall, early December in, in getting no less than 20 organizations suppressing United States to sign on to a statement about the need, to have the vaccine for the autism community. That that statement, uh, before being issued, had been discussed with the CDC and Dr. Jay Georgina peacock, who heads up, uh, that area of CDC for autism was involved in reviewing what we were producing as was Dr. Geraldine Dawson head of the autism center at university, a former chief science officer for autism speaks Dr. Wendy Ross, the director of the autism center at Jefferson medical university. She is a pediatrician practicing pediatrician with a focus on autistic individuals, children, um, plus a number of other scientists and organizations, uh, were asked to opine on what we were presenting as an opinion on the need for the vaccine and resoundingly resoundingly was, yes, we need to do this.
Speaker 2 00:23:18 What we heard from the CDC was that there were, while it was not specifically tested in the autism community, they had a fair representation of society, and they knew that there were autistic individuals within that testing. And, uh, that was on the adult side. And then they continue to do this, and they did it with, uh, young adults. And they w they're now doing this studies on children. And, and right now all science is indicating this was a favorable thing. I literally was talking to a gentleman this morning from New York who was hesitant about whether or not his grandson should be getting the vaccine and wet N uh, his pregnant daughter at the time. Uh, and the interesting thing is obviously the infant doesn't need to right this time, but the, the, the daughter's OB GYN was emphatic that absolutely she should get that. And, you know, science was there. Science was what helped us to guide that statement.
Speaker 1 00:24:20 I'm glad you touched on the vaccine thing, because I think people get twisted about that. And, um, especially now, and it is really important for people to get them, especially, I think if you're pregnant and if they worry about their baby, you know, this has caused death. So to me, that is a far worst thing to have. Um, can you talk about any statistics? Like, is there statistics about how one in every X amount of people might be on the autistic spectrum?
Speaker 2 00:24:55 So, so again, the prevalence rate is one in 54, one 54, one in 54 is what the CDC identifies, uh, as its most recent died. Um, testing results in that prevalence is determined on the testing. They do on eight on, uh, eight year old boys, uh, in the United States. And then from that, they extrapolate what that would be for society. But, you know, if you use that, we're thinking about almost 1.8% of the population is on the spectrum. Um, we see an increase in that prevalence rate, right? And, and there's a concern or question about, you know, is autism rising or is there more testing being done? And I think there's a little bit of both because the testing is done for children. So th that that happens, but there's also some testing where adults are saying, I wonder if I should get tested for this.
Speaker 2 00:25:42 I wonder if I should see whether or not I, I should be diagnosed, um, and whether or not I have one, um, I think our, our awareness is much greater. Um, our acuity to what may seem like, uh, an anomaly or just a slight deviation from what one would think is typical. Uh, and as a result, we start to see an increased number of no matter where that falls. I think what's most important is that we, as a society, make accommodations to provide programs and services, we do what we need to do in our federal and state laws. We do what we need to do in our schooling, public education. We do what we need to do in a, our employment in our communities to provide for individuals who are diagnosed as well as provide for their families.
Speaker 1 00:26:34 It's interesting that you said that, um, that they got this from eight year old boys.
Speaker 2 00:26:40 Yeah. Well, I, I can't speak to where the CDC is. I cannot speak to where the CDC came up with that determination that they were going to test for three ways, um, uh, or how they made that decision, but, uh, that's where it started. And that's what they continue to do to demonstrate what the prevalence rate is.
Speaker 1 00:27:00 Um, since autism often, you know, looks invisible. What are some of the challenges that happen with people with autism? And, you know,
Speaker 2 00:27:14 I think that, you know, I think one of the things for individuals with autism or autistic individuals is that, you know, people don't understand, they it's more about what we don't understand. We meaning those of us were, are more typical versus nor diverse don't understand. And, um, we need to be more mindful of it. Let me give you a little example if you don't mind, Sam. Sure. So, uh, I'm familiar with the woman who, who was diagnosed later in life. And when, uh, when we talk, when she, and I talk about, um, autism and about her diagnosis and what it's like to be autistic, you know, she gave me a great example, gave me two good examples that I like to use. One is that in her mind, she's thinking about the conversation two or three or four questions out. If I answered this way, what will he ask me if I answered this?
Speaker 2 00:28:14 If I answer this way, what we have, which is like playing three dimensional chess. Right? Right. And so just pause for a second and think about how exhausting that must be for her. And in fact, she tells me it's exhausting, right? Well, as a result, it becomes, you know, she's tired, right. And she may seem a little disengaged. The woman is exhausted. Her mind is going so fast. It's like play out the script and it hasn't been written yet. Right. So that's one, I think other things that we, and I'm learning this too, as a new member of the community of autism and working with individuals here at the autism society who are on the spectrum or our panel of professional panel of, uh, autistic individuals are, uh, when I work with them and learning that they like routine. Right. And so they don't want that deviation.
Speaker 2 00:29:11 Um, let's, let's, uh, well, as we're doing today, Sam, where we thought we might have two people and that's fine, we can go with it. That can create some challenges. It doesn't make it bad or worse or good or bad. It's just a challenge. Right. So I think that, you know, that's an invisible thing. Um, and it makes it a little difficult in that regard. I think that, and it looks like at least going to be joining us here, from what I see on a screen, I think that the other challenges we have with individuals that other than individuals have is since we can't quote unquote, see it, we have to be mindful in our language, in our thoughts, in our words. And, and I like to make sure that we're always being as inclusive as possible. So for example, when we have in this world of COVID, we have so many virtual meetings, right?
Speaker 2 00:30:02 Well, an individual on the spectrum may not be comfortable just jumping into the conversation that's happening on the screen. And so we've tried to make sure one that we have closed caption as much as we can for all of the meetings. And secondly, we do everything we can to make sure that we have provided people with the opportunity to use the chat feature so they can opine and offer questions and comments using chat. And then we speak to that. Um, those are things you wouldn't see, you wouldn't know. And so we, uh, have to work through that and we help people, um, feel more accepted and more inclusive by doing things like that.
Speaker 1 00:30:46 I want to take a short break to let everyone know you're tuned to cafe 90.3, FM, Minneapolis and cafe that org, we are speaking with Chris banks. Chris is the president and CEO of the autism society of America. And I believe Ellie Wilson has joined us. Yes, Ellie I'm here. Oh, excellent. Ellie is the executive director of Minnesota autism society. The topic is autism. Um, autism acceptance month is this month and in April and it's inclusion and the, um, celebrate differences campaign. Uh, thank you so much for joining us, Ellie. I'm glad you can make it. I want to talk about, you know, we just talked to kind of about what are some of the difficulties with autism? How does this roll into employment? Because I'm sure that, you know, there's just so many different things. Do you, when, when you guys do you guys promote people, you know, autism people with autism to, to, you know, tell that to their employers, Hey, I have autism, I might have trouble with this. Um, how do you guys kind of push that out?
Speaker 2 00:32:00 Sam? How about I take it from the national point of view and then Ellie, you can talk about what you're doing in Minnesota and how that relates to Minnesota and what's happening. Right. So the autism society of America, um, uh, has a strategic plan that is currently being, uh, enforced and enacted. And Ellie was a part of helping us with the design of that. And we're grateful for that. And one of the initiatives is employment, right? Approximately 75 to 80% of the autistic community is either unemployed or underemployed. Um, and, and, uh, you know, that includes college graduates, right? And the challenges that are put forth are to make sure that employers do what they can do to include the autistic community and individual in their employment workforce. And what we're doing on a national level is to try and drive home several points. One, employing an individual with autism is not an altruistic initiative.
Speaker 2 00:33:02 You don't do it because it makes your company look bad. You do it because the individual can do the job that you need done, right? They have the skills, the talents, the resources, the ability, the capacity to do it. And, you know, we talked about those on the spectrum and then those with higher functioning and, and, uh, higher communication needs and lower, excuse me, high communication skills and low support needs may be able to do certain jobs that individuals who have higher support needs and lower community education skills need, but yet there's all jobs in between. Not just professional. We've seen the 60 minutes shows where they're featuring and it's great. They feature individuals who are working at Boeing or Microsoft or in engineering programs. I also like to say, you know, largest grocery store in America grow Kroger. They need individuals to do their database, their inventory, their accounting systems.
Speaker 2 00:33:58 They also need individuals to stock their shelves and pick up grocery carts in the parking lot and work in their flower shops, individuals on the spectrum who have the skill sets can do all of those things. I think that we at the autism society are also promoting the idea that, you know, the government has a major role in this and especially doing COVID right. There's a tremendous amount of money being put in the transformation act for jobs and employment, especially skilled jobs in the labor unions, right? Individuals on the spectrum deserve the opportunity to have those jobs as well. I also like to tell them corporations and businesses, it's good for the economy. An individual on a spectrum who is working is earning money. So they can pay rent and pay groceries and stimulate their local economy. Right. And we start to provide, uh, financial independence for them so long as they can meet their needs.
Speaker 2 00:34:54 And we have to work towards that. Um, there are some inherent challenges with that and limits that the government has placed on the amount of money individuals can receive and still get supports with. We are working hard to get the government to move past that we, uh, we encourage companies to talk to our affiliates about being introduced. Individuals were looking for jobs, however, we're not employment coach, uh, and employment service, right. Um, w that's not what we're trying to do. I'd rather spend at the time of the ordinance and society to change the government's banking and resources for change corporations, thinking about how to do this, whether it's changing, how they interview or the supports they provide as managers or the training, they give their employees on how to be a better colleague of an individual with autism. Um, those are the things we're doing at a national level. And Lee, I think you could probably talk a little bit about what's happening in Minnesota and the successes you all with that.
Speaker 3 00:35:51 Yeah, absolutely. Um, so first of all, thanks for letting me jump in partway. I'm excited to get to talk to you guys more. Chris is totally right on everything that he's mentioned so far in terms of the value that autistic employees can bring to, um, any employment setting. I mean, when you think about when you first started thinking about what your job was going to be, you know, like we always talk about what am I going to be when I grow up, right. Station tends to start when kids are pretty young. And, um, there's kind of an area of special education that a lot of people don't know about that's called transition services. And part of what transition services provide is this sort of concept that eventually kids are going to stop going to school. And the primary way they're going to be engaging with the community is to be working.
Speaker 3 00:36:39 And so there are kind of like curriculums and programs and classes that are designed to help build those job readiness skills, um, amongst those like teenagers and young adults, so that they have a really rock solid foundation in imagining what they can do moving forward. Um, the autism society of Minnesota tends to focus really well on this transition age group. And we work a lot with transition age providers, um, in some people's concept of autism, we're not thinking enough about sort of that age group and how critical it is to sort of lay the foundation for what successful employment can look like down the road. Um, so that's one thing I want to point out. The other thing that Chris alluded to that's kind of important is that employment can be right for people of all levels of need. So whether people have kind of high support needs, or whether they're more independent and have more invisible disability, there are kind of different employment issues that we would tackle either way.
Speaker 3 00:37:38 So one of the things that we think about is no matter what service you're providing, if you're, if you're moving grocery carts and working in a flower shop, that's incredibly important. I utilize those services on a day-to-day basis. Um, but sometimes, and not exactly in those cases, but in other cases, uh, the value of that work, um, is not always recognized economically. And so we have a lot of people that are really underpaid for those roles. And, um, one of the things that we were kind of at the autism society of Minnesota is not necessarily kind of like carrying the signposts that everyone has to get paid 20, 30, $5,100 an hour. That sounds nice, but it's not right. One of the things that we do think about though, is how do we prepare our social service structure here in Minnesota to progress and absorb the idea that we should be paying people a minimum wage as a function of their civil and human rights.
Speaker 3 00:38:39 And even though that might be a long shot for some providers who are kind of in the middle between supporting people with autism and other disabilities and the actual employing businesses, you know, that isn't, this model ends up kind of falling apart. If we make that transition too fast, and then everybody loses because it might mean that we lose access to those really critical employment supports that allow people to be in those settings in the first place. So that's one thing in Minnesota, we keep an eye on really closely is what does this state need to do to prepare for that change? Because it's not the sort of thing where you can flip a switch and everybody's ready to go. It takes a long time to lay the infrastructure for that to happen.
Speaker 2 00:39:21 Okay. And I think that Ellie is on point with, this is also part of what the transformation is that the president has put forth requires the autism society of America and our affiliates to pay a close attention to it. Because we, the next phase of what we're seeing from the federal government is this act of the home and community-based services act. And the idea that there are supports and services in, in home or in the community, that individuals should be able to access. It's not a bill yet. It's an act. And they're looking for opinions and thought process. And we're providing that the deadline is April 26th to pine on this act, and we will do that. And it's important that we look at what Ellie spoke about with the competitive employment integration, right? And this idea that, you know, there was a requirement for its minimum wage and as a result that made some challenges for what, what happened with that?
Speaker 2 00:40:18 The idea is that there are supports and services that individuals can get and they need to get, and when you, if you remove them, you're going to harm them or create some challenges. And that's part of the challenge for the autism society and the spectrum that we represent, right. As we talked about from, from, uh, the, the, the variety of individuals autism. And so how does that, how does that translate to what we're talking about in jobs? It translates into recognizing what would you pay a non in a non-autistic individual to do that job? Why wouldn't you pay an autistic individual, the same rate, right. And that's what we push companies for to look at that.
Speaker 1 00:40:58 And this is, I think, I want to say that I know this is kind of across the board with disabilities. This issue is not new. It's, you know, all disabilities are dealing with that. I want to ask a little bit about, um, research and what's happening in that with, in respect to autism.
Speaker 3 00:41:19 Well, yeah, that's a big question. Um, I would say a couple of different things are kind of worth mentioning in this area. Some continues to be, you know, uh, the autism community tends to continue to be incredibly complex and diverse. And so there are certainly lots of things that we, um, do not understand enough about, or kind of more importantly, we don't have great data about because sometimes data is what drives policy change and administrative change, where we can point to something and say, look, here are the numbers. And there are certainly lots of places in which, um, you know, uh, research is lacking when it comes to the evidence that we need in order to cut. Sometimes take the legislative stands that we make. Um, I would say historically, uh, like when I was a little girl and a teenager and everything else, a lot, a lot of the research was focused on what causes autism.
Speaker 3 00:42:17 And I'm going to say I'm very comfortable using the word of an incredibly disproportionate amount of effort was sort of spent in understanding how does autism happen and where does it come from? And, you know, sometimes what I say to people is, look, we have kind of been, it's not an unimportant question, but when taken out of proportion with the fact that we have, you know, millions of autistic people in the world who exist already, you know, um, they're already born, they're already here, or I already care about them. What I would love to see is that we are we're evening out how we spend our research energy and that we're focusing a little bit more on the utilization of services. You know, what makes them effective for diverse members of the autism community? What makes them effective for people in rural communities versus urban communities?
Speaker 3 00:43:15 Um, what makes them of high quality? You know, there's very little consensus on what makes a community service, what makes it high quality? That's not something that there's like a clear, um, indicator of what we can use. And that's sometimes waters down our ability to say some of these social systems don't work the way that we need them to. And we left utilizing incredibly powerful qualitative and narrative input from people who are living their lives day to day. But sometimes what those people are yelling for is write this down. Like someone study what the connections of these things are, so that we can use data in a meaningful way to actually shape the systems that we have instead of kind of hounding constantly on what it is that causes autism alone. That in and of itself is something that we'd like to see change more over time.
Speaker 2 00:44:15 So Sam, I'm going to jump in if you don't mind. I think it's important that, you know, Ellie just talked about how the one thing I think the autism community can agree on is it's tremendously complex. Everything else seems get a lot of divergence. And there's a lot of research in what is in this lot of science and autism, a lot of funding going to autism science and research. We certainly want to see much more brought to the table for treatment programs and services than it's currently allocated. We absolutely want to see that we know that, you know, we need to study the aging of the autistic population and what the effects of aging have on it. I was talking with the leader of one of the largest assisted living facilities on the East coast this morning and talking about what that looks like. We need to spend more time in programs and services for the North, for the transgender community within autism and the diversity within that. Um, and, and th the segway that I'm going to use here is the ax. What, what does make substance month is about, right? It's not saying that this is good as it is. It's saying, how do we make the accommodations? How do we make sure that we're opening the door for empathy and understanding, and quality, you know, that we're breaking down these labels and these stigmas, and we're creating more space in people's hearts and murmurings for this, this, and this care and advocacy.
Speaker 1 00:45:44 I want to talk about that. The autism acceptance month, that feels like it's a word change. What brought this?
Speaker 2 00:45:53 Well, it, it, it's more than a word change. It is a word change, but it's much more than that.
Speaker 1 00:45:58 Trying to get it to be a thought change to,
Speaker 2 00:46:01 Uh, we're trying to get it to be an action change as well, right? It's w what, what we were doing, and, you know, we're not the first to use this, and I don't want to lay claim for that. The autistic self-advocacy network has been talking about acceptance since 2011. Um, and that's been documented. The autism society of America was when it was called the national children's autism society created autism awareness month, almost 50 years ago, right. Where we wanted to shed a light on and bear witness and testimony to the fact that there were autistic individuals in the world, and they needed program supports and services. We leave out as, as anything else, right. And the, the community has aged. And we need to do more to make sure that we're not just aware, but that we're incorporating people into our lives. I love to use this example because it works for me, you know, acceptance.
Speaker 2 00:46:57 Isn't just saying that I know there's a nine year old girl who lives on my street and she's on the spectrum, right. We're going to call her Janie that's awareness. Acceptance is when I'm the coach of the artists of the softball team. And I say to Janie and her parents I'm coaching the softball team. Love to have her on the team. Let's put her, let's see if she'd like to be on the team. What's teacher softball. Maybe she's learned, maybe she hasn't. And it also means that as the coach, I don't put her in right field because we know what happens to the kids who softball and right field, you know, they've distracted. They're not paying attention, cause there's not enough action there. Well, so long as Janie is safe, let's put her on second base. She'll stay in the game. She'll be paying attention to the Fitch.
Speaker 2 00:47:40 Right now you can tell I'm a former softball coach, but that's about acceptance that say, this is who she is. Let's get Janie in there. And let's acceptance leads to inclusion. Bring her from the outfield, bring her from the street out to the field. Inclusion leads to belonging. I'm a part of this team. I'm an integral part. I'm the second basement for gosh sakes. That's an important part of being on a team. Right. Um, and I like to use that example because I can, I can identify, right. And it works for me. And when I've talked to other autistic individuals, especially young ladies with autism, they say, I get that, Chris. I understand that. That makes sense. That's what this is about. So it's much more Sam than a word change. I hope it's a changing in the paradigm of how people think about autistic individuals and what they're going, what they are going to do to make that autistic individual feel like they are part of and belong.
Speaker 1 00:48:37 But I think, I do think words, you know, put thoughts in people's heads, you know, Prince with what you say and how it said, and then how a person thinks. And I think one leads to another, which also can hopefully leads to action.
Speaker 3 00:48:53 Um, so Sam, sometimes that sometimes words are things we kind of take for granted, especially if it's mainstream. And we don't really realize the things that people associate with language, but I will tell you what the autism community is desperately trying to move away from the idea that autism is like a disease or a disorder that, um, you know, implies some sort of tragedy that can't be overcome or some sort of lifelong struggle without question, many people with autism face challenges because the systems around them are not designed to include them to the extent that we wish they were. Um, a lot of times when we think about the concept of awareness, awareness is a word that is also used next to other types of diseases and disorders that people want to like eradicate or get rid of. That's not what we want to do for autism.
Speaker 3 00:49:52 We want people to understand that autism is a really important part of the human fabric, you know, the societal fabric and that, um, you know, people have tremendous talent and value and are inherently important parts of our society. So what Chris is talking about in terms of supporting action towards acceptance, that is very meaningful, especially when we talk about that sort of literal interpretation of autism acceptance means get off your bum and do something. But when you think about the absence of the word awareness, I think that's really what it's about is if you actually ask an autistic person, they might say, you know, April can sometimes be a little bit hard for me because it might bring a lot of questions to the table that might not be super informed. And sometimes it might mean that my feelings get kind of heard because people are talking about like, Oh, you're so strong for overcoming this thing. And that's really not. You autistic experience in less, our society looks at it that way.
Speaker 2 00:50:55 Oh, wow. Uh, Allie, you're, you're, you know, you must be reading my email inbox because I was over the weekend. I received an email from a mother of two autistic boys whose school is doing what they can to increase quote unquote awareness and, and calling upon those two school-aged voice to lead an assembly at the school about autism. And the mother says, my boys hate going to school on April 2nd. They hate having that pointed out. And, and, you know, I spoke with some of the folks on our panel, professional advisors to say, how do we best respond to this? Cause I, I know what I want to say, take your kids to the playground and take them to the beach, take them to the mountains. Don't bring them to school on April 2nd. Don't make them feel uncomfortable, right? Until that school starts to work on acceptance, right?
Speaker 2 00:51:43 And fostering this, you know, improving their life. You know, acceptance is really about, it's really critically important to improving opportunities in education, employment, housing, affordable housing, healthcare, um, long-term services and supports. I mean, it's all of those things, awareness doesn't do that. Awareness just recognizes. What is I like to think about it from this point of view, acceptance doesn't mean I have to like it or approval. I recognize it is. And now I'm going to do something about, I'm going to invite Janie to play softball. I'm going to tell those parents that, you know, I know your kids are uncomfortable on April 2nd. You don't need to come to school that day and we're not going to make you tell him, get the kids dressed up in blue and stand in front of the school and tell everybody what bought is a means to them because it's not making them feel a part of.
Speaker 2 00:52:33 And that inclusion is so important. And that sense of belonging is so important. Our self advocates who are on our panel of people on the spectrum of autism speak very eloquently about this and how important it is to recognize I have a sense of belonging. And that's what I think this month is trying to do. And I think we're going to see much more about autism acceptance month, uh, throughout the month of April, but we're going to keep saying, um, we're very proud of the fact that we, we invested in, we didn't just start doing, we spent money to do this. Cause we thought it was so important. And we're seeing it picked up around the world. I was listening to a conversation today by gentlemen, from, uh, Ireland, uh, India, uh, Saudi Arabia, a woman from Ghana and a young lady from Israel. And they all started talking about acceptance. And about acceptance month, even though it was
Speaker 3 00:53:26 You in world awareness day, they were talking about acceptance more.
Speaker 1 00:53:30 I liked the, I liked the words. Um, I think, you know, all of this that you're saying definitely can be used for, you know, almost any disability I think, across the board. Um, and so I hope more people start doing that because I think it would be beneficial to have these kinds of topics and conversations of inclusion is it's so vitally important. Ellie, I do know that there were some things you wanted to quickly announce and we have very limited time. I apologize. Um, just don't mention prices, but could, do you want to give a quick rundown of what's coming up in Minnesota?
Speaker 3 00:54:07 Yeah, absolutely. And thank you so much. I would say if you love hearing this talk and maybe are part of the autism community, if you're autistic yourself or if you're just intrigued by the things we're talking about, there's two things in Minnesota. I want you to watch out for in about the next month. One thing is from April 21st to April 24th, the autism society of Minnesota is going to host our annual autism conference. And, you know, Sam, you've been really astute in saying that, uh, sometimes it's good to talk about sort of all disability, but sometimes we have to talk about things that are specific to autism. This is a place where every single session is really dedicated to what does it mean to provide better service, better education, better community, to autistic people. We have tons of autistic speakers, both from national settings and from local settings.
Speaker 3 00:54:56 And we would love for people to participate. It's totally virtual. And if you feel like, Oh, I'm not up for a conference between the 21st and the 24th, the good news is you'll have 30 days to consume every single session if you have the stomach for it. So let's offer one more opportunity. That's a little more family friendly. It's not until may, which is technically not during acceptance month, but we accept people in may also. And, uh, at the end of may on Sunday, May 23rd, we're going to be moving our annual steps for autism, which is kind of a mix of a walk and a resource fair. And what it is is as a great opportunity to actually be in person. If you're comfortable, it's going to be outside at Como Lake park in St. Paul. And it's going to be throughout the morning. It'll be a mix of meeting with people who provide resources and also seeing other families that are out there ready to celebrate their autism and celebrate the community that we have together. Uh, information about both events can be found at our website, which is www.ausm.org. And we would love to answer your questions about absolutely those events or any other events that we host because we love to meet new folks.
Speaker 1 00:56:12 And is this the same place people can go to find out more about autism?
Speaker 3 00:56:16 Got it. We have so many resources. It would take you a couple of months to come through everything that we've got. But the good news about awesome that if you, if you don't exactly know what your question is still call us. We have people who say I'm overwhelmed and I don't know where to start. And we have so many wonderful staff who are ready to talk you through whatever it is you're going through, whether you're a kid or an adult or somewhere in between, you know, whether you're worried about school or employment, or just getting a diagnosis in the first place.
Speaker 1 00:56:46 Can you give that website one more time? Yeah. We're running out of time.
Speaker 3 00:56:50 Www.ausm.org.
Speaker 1 00:56:53 Thank you both for being on. I really appreciate it. Um, this has been KPI. The views expressed on this show are not necessarily those of KFA or its board of directors. My name is Sam. I've been the host of the show. This is disability and progress. If you'd like to be on my email list, you can email us at disability and progress at Sam, jasmine.com.
