The Autism Full Employment Act, w/ Michael Bernick & Dr Louis Vismara | EDB 245
Dr. Lou Vismara & Michael Bernick discuss autism employment.
(VIDEO – 29 mins) Dr. Vismara & Mr. Bernick are the authors of the book “The Autism Full Employment Act”.
Louis A. Vismara, M.D. is a physician (retired interventional cardiologist) and a parent of four children. Since his son, Mark, was diagnosed with autism in 1995, he has dedicated himself to issues of child development, learning differences, diversity, and access to health care for under-served populations. Lou is a founding member of the UC Davis MIND Institute, the State of California’s First Five Commission, and the California Legislative Blue Ribbon Commission on Autism.
Michael S. Bernick is an attorney practicing in the area of employment and labor law. In recent years, he has worked with some of the nation’s major employers, staffing companies and industry associations. He is a regular contributor to Forbes Magazine, a board member of AASCEND, and an autism dad. Michael previously served for nearly five years as director of the California Employment Development Department (EDD).
For more about “The Autism Full Employment Act” click here
For more about the UC Davis MIND Institute: health.ucdavis.edu/mindinstitute
For Lou’s bio at Stanford: profiles.stanford.edu/louis-vismara
For more about AASCEND: aascend.org
Michael’s bio at Duane Morris: duanemorris.com/attorneys/michaelsbernick
Michael’s articles on Forbes: forbes.com/sites/michaelbernick
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FULL TRANSCRIPTION
HACKIE REITMAN, M.D. (HR):
Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. And today we got two for the price of one. The co-authors of this great new book, The Autism Full Employment Act, which I just started reading, and I got some questions for you guys. And we got Mike Bernick,, my friend from the AASCEND group out in San Francisco, and Lou Vismara, one of the founders of the MIND Institute out there in California. And we’re gonna let… so I can see if I can tick off Mike a little bit, we’ll let Lou go first. Lou introduce yourself properly to our audience, please.
LOUIS VISMARA, M.D. (LV):
Well it’s a real pleasure and privilege and and thank you so much, Jackie, and for facilitating this and for the great work that you’re doing, getting the word out there. Let’s see, where shall I begin? I’m actually an immigrant. I was born in Italy, I was telling Hackie, I came to United States when I was six years old. I grew up in the San Diego area, always wanted to be a physician, went to college in the Bay Area, went to med school down in Houston, Texas, and then came to Sacramento to do my cardiology fellowship, and have been in Sacramento ever since. We have four kids, our youngest is a boy, and was- Mark was born in 1993. And a couple of years later, he was diagnosed with autism. And again, during the first couple of years, it was the usual issue of kicking into pediatricians and being told that Einstein didn’t talk until he was five years old. And he had three sisters and did all the talking for him, etc, etc. But, you know, by when he was about 18 months of age, his language was still not coming in. And it was very clear that there was something that was not right. So I went to my pediatric textbook, which I still had, which was written in the late 60s. And among the various developmental disabilities, there was about a paragraph that was maybe three inches long talking about autism, indicating that it was an extremely rare rare disorder, one in 10,000, unknown causes, etc. And that was about the extent of it. Well, being a cardiologist and being a physician, I somewhat have a very obsessive and compulsive streak. And back in, in our introduction was just saying that I probably am also on the spectrum to which my wife constantly tells me, so I really, it really concerned me that seeking out various professions, and again, being a physician, we’re really privileged to have access to the latest medical care. And again, since I was a cardiologist, and to do my training in Houston, I kept asking myself, where is the Michael DeBakey of autism, certainly, in this, you know, in this extensive reading area of research, there must be someone who was doing, you know, cutting edge research on autism. Back then, in the mid 90s, the NIH, I found out, much to my dismay, was spending a total of $7 million for autism research throughout the whole country. $7 million. And certainly, we were in the midst of of the beginning of the autism epidemic. So again, to make a very long story short, with the support of some incredible families and friends and resources, we were able to plan to the convincing University of California Davis, that there was a real need for a research entity. And that was the beginning of the MIND Institute. So that’s basically my story in a nutshell, and I look forward to sharing more of this journey with all of you. So thanks again Hackie, for having me on.
HR:
Lou, thank you. It’s a great story. And then we’re gonna see where the MIND Institute is today, later. Now, Mike Bernick, you’re up at bat, even though you’re an old hand here. Tell us your story.
MICHAEL BERNICK (MB):
Why Hackie is you know, I get involved in the autism community since my son William was diagnosed back in 1991. And Lou and I met back in the late 90s when I was in Sacramento as head of our state Labor Department. And we’ve been working together now for over two decades. And the book that we’ll be discussing is really a collaboration, summary of our collaboration and sort of what we’ve learned and what we see going forward.
HR:
Well, you know, the policies that you guys are making and attempting to make a reality. You know, policymaking is very difficult stuff, very difficult stuff, because you have to make it happen. Going back a little ways before much was known about autism, and it still really bothers me to this day that MDs get zero training in this stuff. And pediatricians, I mean, I hope it’s changing. And I see it changing a little bit. And you guys have been the forefront of getting the word out and helping making things change. When I wrote the Aspertools book, when I had my aha moment and started learning things about everything that it was not just Asperger’s, or autism, it was all the mental health issues, and neurological issues. And it’s all our different brains. So we started differentbrains.org and now we’ve got everything under one roof. And I saw you struggling with the same thing and actually naming your book, because you start out with The Autism Full Employment Act, right. And then you go down, and it says, “the next stage of jobs for adults with autism, ADHD, and other learning and other mental health differences”. And I see that you and write in this book, we’re having some of that same struggle, because it’s not just autism. Would you guys care to comment on that?
LV:
I’ll just say that, you know, to me, autism is a very broad umbrella designation. You know, it’s kind of like some other entities that we have in healthcare and medicine, when we describe heart disease, well, what what is heart disease. You know, it can be congestive heart failure, it can be coronary artery disease, it can be arrhythmias, it can, it can encompass a broad array. So to me, autism, and I think it’s one of the real values, challenges and opportunities. It is that it is a very, very broad, but it is precisely because of the broad and unique nature. And one of the things that really fascinates me about autism, at least from my own personal experiences of my son, is that it can not only change the manifestations can not only change with time, but very often I see my son within a period of a very short period of time, actually changing his functional capacity, how he interacts with the world, sometimes for the good sometimes for not the good. So I see autism, again, as kind of a pathway to really understand how different brains works, because of the very unique nature. And because it It encompasses such a wide array of functioning. I don’t know if that’s helpful.
HR:
It is helpful. Mike, what do you have to say about
MB:
Well Hackie, you’ve been emphasizing not only autism, but the broader concept of neuro diversity, it’s, as we discussed, previously, it’s protean term. And sort of, in some ways, hard to pin down since we’re all neurons, our brains are different. But as glue indicated, what we try to do here is to address really, I would say two things. One, the book addresses some of the comorbidities. Many of the people in our community, many of us have comorbidities, that is other mental health issues in particular, that are neurologically connected to autism, but also separate. So we try to address Lou has a chapter on what are these comorbidities and how they can be addressed, or at least some of the approaches current thinking on that. And then, as you say, the there is such an overlap with autism, and some of the same employment challenges for people with ADHD, mental health, other learning differences in terms of fitting into the current labor market, and that’s really what much of the book is about how to fit in. How do we build a better structure of helping people fit in? And as individuals, how do we work with perhaps family members?
HR:
How do you see the what to me is, these COVID times have put everything on steroids. Okay, so now we have the additional factor of the neurodivergent individual who’s gotten you used to working at home working remotely. And now has to go through perhaps another transition into their job, which may either become a hybrid of the two, or might go back to the bricks and mortar model, depending on the job. How do you see this as an extra wave?
MB:
I would just start by saying that most of the people in our send group were in jobs that aren’t or have been in jobs that are tacky, and were laid off very unhappy. I think I certainly saw my son has been finally back in in person was six months, but I think our people are looking forward to having someplace to go every day, some structure to get out of the house. So I think that’ll be very positive. That’s why I think, at least among our AASCEND group, there is less interested in jobs or, or interested in jobs that allow that, because you’re saying the same thing.
HR:
Lou, what are your thoughts on that?
LV:
Well, exactly as as both of you said is, you know, there’s a saying that never let a crisis go to waste. And perhaps, you know, with the labor shortage that currently exists, perhaps, you know, we can be and our loved ones and the people that we care about, with the neurodiverse population can actually be an important part of the economic recovery. One of the things that I’m particularly interested in is finding opportunities, and job sectors, which can be open to individuals with a broad array of abilities, and limitations. And as I mentioned, earlier, our son Mark is 28 years of age, he is nonverbal, he’s had behaviors in the past. And he would be classified as and again, not to stereotype or whatever, but he needs a lot of support, he’s never going to get a job working at Google, he’s never going to get a job at a computer, he would probably have, you have difficulties working in a department store because of the type of support. But one of the things that we’ve done with with Mark is actually identify various activities, like he really loves to cook. And he loves to prepare food, etc. And once there is a structure, and once it’s repetitive, and once it’s identified, he does well, you can do well. So actually, Mike and I started a pilot program before COVID, where we were able to place 18 young adults all with autism of varying abilities. And we specifically had them working in an assisted living facility, long term care service industry. And these individuals would go in into the culinary area, they would prepare the dining areas, they would help with food preparation, and they would actually help in serving the food. And what was really rewarding was the fact that they were very, very functional, they really helped the staff. But what was really endearing was seeing the relationships that in some cases developed between the residents, the older adults, and these young individuals with developmental disabilities. In many cases, the residents of the assisted facilities just literally enjoy meeting, talking, and sometimes just sitting and watching TV with with some of our workers. So I’m really and again, we had to shut that down with COVID because of the restrictions, with volunteers, but I’m hoping we can resume that in the very, very near future. And again, trying to identify specific activities and work sectors that are amenable and available to people with, uh, with neuro diverse individuals, I think is something that, to me is very exciting.
HR:
I’d like to hear your your thoughts on some of the counterintuitive and illogical rules of the game that is set up with the policies on SSDI. And that whole thing regarding employment, like my limited understanding is such that, you know, like one of our interns who’s 56 years old said, you know, I’m not going to take a chance on that to give that up because then if I lose the job, I have to sit out five years before I can reapply, and lots of stuff like that, that you guys are much more knowledgeable about tonight, can you would you care to comment on that?
MB:
I’ve been following this hacking since the 90s. And it’s been an ongoing issue with both SSDI and SSI. And basically the issue surrounds if you work, and you begin to gain income, what a What does that do to your total benefit amount? And what does it do to your health benefits, which are key element that everyone and back in the Clinton administration, there was that was when the Ticket to Work was developed? And the idea was, we’re going to have this new process post to incentivize placements, but also to reduce the innocence work disincentive. Work disincentive is an issue that we have throughout government benefit programs, welfare, food stamps. So people have been worried about this thinking about this well aware of the work disincentive now, for, for several decades. And changes have been made, if you notice, if you look at SSI and SSDI have gotten more liberal over the years, in terms of how much you can earn. Or if you start earning how much you can keep. But you’re right, you talk to people today, and it’s still with all the government changes that have been made, still a concern, somewhat in terms of reduced income. And as you identified, health benefits, people are worried about health benefits. These are such enormous bureaucracies that most people say, gee, if I lose my health benefits, and then I get unemployed again, I just can’t go through that awful government, SSI and SSDI bureaucracy, I’m better off just keeping things as they are, and then losing them and getting back. And that’s just an issue we need, as a community continue to address. But people have been aware of it for a while. It’s just that we haven’t come up with any good way of doing it either with income, losing income or health benefits.
HR:
Well, it’s a quandary. And so to sum, the answer might be a single payer health system. I can say, as a physician, when I was practicing orthopaedics for 30 years, out of all the insurance companies and all the different plans and everything. At least in those days, the ones that was the easiest to deal with, and your people didn’t have to sit on the phone and argue and this and that. And you didn’t need to jump through hoops to get permission, was Medicare. Medicare was the easiest thing not Medicaid, Medicare, somebody needed something, you ordered the test, you got it done. They paid you 10 cents on the dollar, but still you got paid, you know, and you could plan things and do things. So at least from this physician’s perspective, and I’m going back many years, you know, the private insurance companies have always been horrible. No offense to the insurance company people out there, but you’re horrible. Get better will you. I find this so interesting that when we talk about autism it’s kind of always the well, when you talk about any of these things, anything neurological, developmental, any of these differences. The one thing and the most underrated player on the whole team is socialization, strong social relationships. Where alone is not good, whether you’re talking about Alzheimer’s and dementia, autism, any of the mental health issues. And when they did the Harvard longitudinal study of 75 years, where they wanted to analyze the health aspects that really mattered towards your longevity, and also toward your happiness and overall health. They thought it was going to be cardiac or cancer is something that diabetes is what blew everything away was strong social relationships. And it’s amazing. So those of us with wives who will put up with us, I salute you, Don Corleone But I’m seeing that more and more, you know, with, with dementia and Alzheimer’s especially, but also with the, you know, everything we’ve been talking about, and this despite everything else going on. Now, of course, genes play a tremendous part as well.
LV:
I’m really glad you mentioned the issue of socialization. Because again, you know, we’re finding more about the mind body connection and how it impacts the immune system, how it impacts brain function. But, you know, when we’re talking about jobs and employment, it’s really more than dollars and cents. I mean, you know, it’s a reason why I think the three of us enjoy getting up in the morning having a sense of purpose, having a sense of, of interacting with other folks, and our people who are neuro diverse, and again, we deal with this in the book as well. They need they deserve, they need and they can contribute, they can contribute to neurotypical individuals in again, giving them the joy of life, that sense of purpose, and why we benefit every time we able to work and to do something we not only contribute to ourselves, but we contribute to others. So thank you for mentioning the socialization that is really an important issue.
HR:
Are there any other issues that we have not covered that you would like to address today?
LV:
I’d like to thank you for what you are doing. You bring a unique skill set of being a boxer… It looks like you didn’t get hit in the head very often because you’re…
HR:
I took some good beatings, 37 losses, six draws between my my father having Alzheimer’s and dementia, and me playing rugby and 26 Pro heavyweight fights, I think I got a good shot at developing Alzheimer’s and dementia.
LV:
Well don’t do it for a long time because the service and what you’re doing and this is really just been very enjoyable. such a privilege, I can understand why Mike says you always bring a smile to his face. And I want you to thank you sincerely for bringing much joy happiness in a real smile to me, as well. It’s been a true pleasure to participate. And I look forward to our ongoing collaboration. But thank you for getting the word out. We really need it.
HR:
Well, Dr. Lou Vismara with all you’re doing in the MIND Institute and everything. I love it and keep up the great work. Michael Bernick, what do you have to say?
LV:
Tell them about the book Mike.
HR:
Yeah, tell us about this book.
MB:
I always want to talk about Different Brains, Hackie. But I will say something about the book. It’s a relatively slim volume. But we try to cover set out, you know, what are the various areas — how do we build greater employment in the private sector in large firms and small? How do we do it particularly at universities and large nonprofits, and foundations that are not under the same market pressures are doing a lot, a lot more? Especially hackie. Those universities get research funding for autism, but hire few people with it. So the book addresses that. We do address employment for the more severely impacted because we believe there’s a place in the labor market, it may not be in the current 14 c structure. It may not be in the current congregate workshop structure. But there are other alternatives, even alternatives to competitive integrated employment that we discussed. And, of course, as always, we discussed what we can do together as a community outside of government, that billion association of coming together and working together. And again, it’s just turns out to be a good time now in terms of resources, insurance, the rebuilding of our economy, to try to both expand and improve our odds of employment.
HR:
How can people learn more about your book?
MB:
Well, it is on Amazon. And and Barnes and Noble and all the online. So or if they just Google it, The Autism Full Employment Act. And, of course, people Lou and I both are available on our emails are on the internet right out there. And I’m interested,and I know Lou you’re interested, in hearing people directly. If they are if they do get a copy of the book, I tell them one, let me know. And let me know your thoughts.
HR:
I got my copy here. I got it from Amazon. Now Lou, how can people learn more about the MIND Institute?
LV:
Yeah, if they just google UC Davis, UC Davis Health, UCD MIND Institute, there’s an excellent, excellent website there talking about the research project. UC Davis MIND just celebrated its — it’s been in existence 23 years, it now receives more federal funding for autism. And it’s not only autism, but it’s a whole array of other developmental disorders and extensive availability on the internet as well.
HR:
How can people learn more about your AASCEND group?
MB:
Well, we do have a website aascend.org. We welcome everyone.
HR:
How do you spell that for those of us who don’t spell too good?
MB:
Well, it it actually it’s a strange Spelling’s AASCEND.org. So it’s an acronym. And so yes, we welcome our ascent preparing newborn, that’s completely outside of government. It’s adults on the spectrum, family members and other advocates.
HR:
What is one thing that people don’t realize? About neurodiverse? employment?
LV:
That’s a great question. It’s a hard question to answer. Because one of the challenges and actually beauties of neuro diverse is the fact that it is so very, very different. And that it changes not only among individuals, but individuals also a change in time. I guess the main thing that the one word that comes to mind as I struggle with a very, very good question actually is potential. I think there is tremendous potential for neuro diverse employment, both for the participants and the recipients, the employers and the employees. I think your diverse employment can be inspirational, it can be fulfilling, and it can also resolve to productive change. If you I, I’m a firm believer in systems changes, that you look at individuals, but you look at how individuals can contribute to the greater whole. And so if you have a factory or employment or you know, an assembly line, whatever, and you make accommodations that will provide services and support from your diverse individual, I truly believe that you can actually improve the system for everybody and make it a better system. So I applaud and appreciate the difficult question. I would stick with potential for for improvement, the potential the unfulfilled the untapped potential that currently exists. It’s a great opportunity for change.
HR:
Well, Lou and Mike, it’s been a pleasure to have you here keep up the great work you’re doing out there with AASCEND, Mike Bernick, and with the MIND Institute, Lou. Thank you both very much for all you do.
LV:
Its been a pleasure and privilege. Thank you.
