Episode 8: Alan Kurtz, Nicole LeBlanc, and Bryan Dague

On supporting employment for people on the autism spectrum


On this episode of the podcast, CDCI Research Assistant Professor Bryan Dague is joined by Alan Kurtz, PhD, and Nicole LeBlanc.

  • Dr. Kurtz is a long-time researcher in employment issues for people on the autism spectrum.
  • LeBlanc is a self-advocate, on the autism spectrum, who brings her lived experience of finding employment to the discussion.
  • And Dr. Dague is also the project coordinator of the Supported Employment project at CDCI.

Bryan Dague: All right. well, I’ll start by introducing myself. Hi, I’m Bryan Dague. I’m with the University of Vermont Center on Disability and Community and Inclusion. I’m welcoming Alan Kurtz and Nicole LeBlanc. Could you guys introduce yourselves? And our topic today is supporting employment for people on the autism spectrum. So, Alan, why don’t you start?

Alan Kurtz: Okay. My name is Alan Kurtz. I’m a former special educator. I worked in adult services in Vermont. I’ve worked at the Center for Community Inclusion and Disability Studies at the University of Maine for the last 28 years, and worked on a number of projects related to employment. And one on transition for students on the autism spectrum. I got my PhD in autism education from the University of New Hampshire.

Bryan: Great. Thanks. Nicole?

Nicole LeBlanc: Hi, Nicole LeBlanc. I live in Silver Springs, Maryland. I’m on the autism spectrum. And I wear gazillion hats. I’m the coordinator for the National Center on Advancing Person-Centered Practices and Systems (NCAPPS), and I do a number of other little gigs. I’m a policy wonk. Disability employment policy is one of my specialties. I’m the author — read the book – of Disability Employment Policy 101 and Why Employment Matters.

Alan: And I just wanted to mention, I have a brother on the autism spectrum, in Pennsylvania.

Bryan: Thank you. And you both did an excellent training for us (video) on supporting employment.

But before we get into the questions, I just wanted you to address the issue of sort of identity and labels. Cause that’s kind of been changing over the years. We always used to use, you know, the person-first language and say, you know, person with autism. But that’s been changing more recently. So could you address that before we get started?

Nicole: Hmm. Well, let’s see. The autism world, you know — some parts of the autism world have, you know, have embraced identity-first language, you know. “Cultural identity”, you know. “Autistic person”, “Aspie”. Then of course you got the, “high functioning”, “low functioning”.

Alan: Yeah. And I think it’s really, it’s been kind of controversial.

Nicole: Uh huh, especially when you look at registry. When you look at the words like “high functioning”, “low functioning”. Those words, those terms, are actually more harmful than they are. Because they’re basically terms used to deny people with autism who have higher IQs support services. I think studies have shown people that get the label of “low functioning” in some cases, they have better adaptive functioning than people that are high functioning, who often have poor adaptive functioning and greater mental health issues.

Alan: I think, you know, specifically what you were addressing, Bryan, is that there’s a tendency within the neurodiversity community to use identity lang identity first language and say, I’m autistic, or, you know, I, I have an autistic brother, and there are others who are sticking with the person first language in saying I’m a person on the autism spectrum, or I, I have a friend who’s on the autism spectrum, and I sort of go back and forth with it. and I know I, I, in most cases, I think, you know, I leave it up to the individual, how, how do you wanna be referred to

Bryan: Mm-hmm. Yeah. I’ve noticed lately it seems more kind of similar to the Deaf culture, how they look at being Deaf or hard of hearing as part of their, their culture and language and part of who they are. They don’t see that as a disability. And it seems similar that a lot of folks in the autistic community are kind of adopting that philosophy as well. Would you agree with that, Nicole?

Nicole: Yeah, somewhat.

Bryan: Yeah. Talk more.

Nicole: <laugh>. Somewhat, you know, particularly, you know, and I think a good check of that. Some of it, you know, the, you know, the people that are away from, you know, the idd who don’t have the IDD label, you know, there’s many people out there with autism that have doctorate degrees. PhDs.

Bryan: Great. Thank you. So we wanna talk about employment. You know, employment’s really crucial for everybody. And we’re all in the field of helping people with disabilities to find employment. So what, in each of your opinions is the most important thing for people to know about supporting employment for people on the autism spectrum?

Nicole: Customer-focused job development. Develop and carve jobs based on strength. You know, particularly don’t just stick people on any job. Like, one thing people, especially in jobs that have higher social skills, they’re more likely to require, you know, customer service skills. That’s, for example, one area that people with autism can often struggle in. You know, figure out ways to get people informational interviews. You know, job carving — carving the job to fit the person, not the other way around.

You know, I think providing long term job coaching is something that the VR system doesn’t really do much of beyond 90 days to succeed in employment when it comes to support.

Alan: For me, I think the most important thing is that employers, I think, support agencies need to realize that people with ASD (autism spectrum disorder) can be really valuable employees. That they tend to bring a lot of characteristics to a job that can be really valuable to an employer. A lot of people on the autism spectrum are very methodical and conscientious in carrying out their job duties. They often perform work of very high quality. People are often very dependable. They’re punctual and tend to be very consistent in the way they work. So I think you know, it’s really important for people to understand that.

I think also customized employment can be really valuable for people on the autism spectrum. I think carving jobs out that really focus on people’s skills or you know, looking at specific tasks that they can perform can be really valuable both for the employee and the employer the same time.

It’s important to recognize that everybody needs some variety in their work, and, you know, while people tend to — they can be really focused, I think over time people on the autism spectrum can really perform well in jobs that require a lot of different skills and require them to do a lot of different tasks.

Bryan: Yeah. I’ve noticed more recently, a lot more news stories of employers that are recognizing and actually seeking out people on the autism spectrum. You know, given what you said, Alan, that they do have specific talents and attributes that, that they find really helpful–

Nicole: Especially given the work shortage.

Bryan: That’s true. Yeah.

Alan: I think that’s really a good point, Nicole.

Nicole: Yeah, like, you know, like when I went to the Anchor conference, people talked about community knowledge that, you know, closing off immigrants is what’s causing this DSP (direct support providr) crisis.

Alan: Yeah.

Nicole: Have high expectations. Embrace dignity of risk, Presume confidence, don’t assume what a person can or cannot do.

Bryan: Thank you. So what have you found to be the most challenging aspect of supporting you know, folks on the autism spectrum and employment?

Alan: I think one of the biggest obstacles are some of the assumptions that people bring into it. And those assumptions are things like people need to work alone, or that they, you know, they have difficulty working around other people. The assumption that people are going to require a lot of extra training and support. And some people certainly are going to require a lot of extra training and maybe some additional support from VR or from an agency.

But I think we often find that people don’t require about as much training as other people do. Of course that’s not always the case. But yeah, I think the, the attitudes about what autism is and the assumptions people make and where they go with that often, they may have somebody working in isolation, you know, doing the same task over and over again. and it’s, it’s important to recognize, you know, the great diversity that exists within the autism spectrum.

Nicole: And now everybody just wants to stamp envelopes

Alan: <laugh>. Right. Good point.

Nicole: You know, other barriers: lack of job coaching, lack of home- and community-based services for people who don’t have an intellectual disability, like in my case. You know, VR doesn’t provide support beyond 90 days.

Alan: Mm-hmm. And sometimes people need that support that goes beyond

Nicole: Mm-hmm. Transit, transportation.

Alan: Yeah.

Nicole: Then of course, you’ve  got public benefit fears when you bring, bring in family dynamics.

Alan: Mm-hmm.

Bryan: One thing I’ve noticed is just sort of the role of self-disclosure in terms of employment support. Can you address that in just terms of how you might disclose? Or what you need to say or what an employer might need to know?

Nicole: Yeah. Just yeah, tell them, you know, you’re on to the spectrum. You have a disability, you know. Talk about your support needs and if need be, you know, do it with a job coach or VR counselor or a support person to help in negotiating accommodations.

Bryan: Mm-hmm.

Alan: And I, I think that a lot of people I’ve known have been at times very reluctant to self disclose. you know, they’re afraid that people are gonna think badly of them because they say they have autism

Nicole: Mm-hmm. <affirmative> stigma. And,

Alan: And one of the problems is when people are reluctant to do that well. I mean, one of the advantages is that people aren’t bringing their preconceptions about what autism is into the work setting. But at the same time, it’s tough for people to get the accommodations they need.

And I think of one young man I knew who went to college, and he decided, you know, I’m not going to tell people, you know, I have autism. And he didn’t get the accommodations he needed, and he really struggled his freshman year. But after that, when he did disclose, he got the supports that he needed and the accommodations that he needed. He did really well and ultimately went on to have a very successful career.

Nicole: Mm-hmm. And that’s definitely gonna be important, especially going forward, as you know, we figure out whatever this new normal is. Like, I know people that are already being told, “Oh, you can’t stay remote. You need to go back to an office.” And I know one person who’s fighting that.

Bryan: Yeah. Thanks for addressing that. And I like the way you phrase that too with that.

Nicole: Yeah. When we look at a return to normal, if it excludes people with disabilities… Huh.

Bryan: But phrasing it up as having support needs and accommodations, you know, it’s not so much about the disability. And I’ve seen that with other, just sort of invisible disabilities. Sometimes there’s a reluctance to disclose. But then, they’re not gonna get their support needs met.

Nicole: There’s the stigma. “Oh, what is so and so gonna think of me if I say, ‘Oh, I’m not this.’  You know, autism is slowly becoming to have less stigma than say, bipolar. Yeah. Makes sense. Here’s a history of mental health issues, where it’s always been something hushed. “We don’t talk about that.” Yeah. You know, if this pandemic, you know, makes anything clear, it’s time for disability and mental health to stop being a hush-hush, shove-it-under-the-rug type topic.

Bryan: Yeah. And I think things like we just got through April, and that’s autism — either awareness or acceptance — month. And I think it’s just getting a lot more attention, people learning more about it. So, you know, I think it’s becoming less stigmatizing and people are more open to self-disclosing.

I’m just a firm believer in self-disclosing in order to get those support needs met. And like your example, Alan: if they’re not disclosing and they have those needs, they’re not gonna get met and they’re not gonna be successful.

Alan: I think it’s true. And Nicole, you brought that up about stigma. I think stigma around autism is really decreasing. I remember when family members, you know, the last thing they’d want to hear is, you know, their child had a diagnosis of autism.

Nicole: And then nowadays, you know, we don’t think of it as like… You know, when I first got diagnosed with autism at 21, I thought, “Okay, that’s a boy thing.” Okay? Somebody flapping, banging their head against the wall. That’s the first thing that came to mind when I first heard that word. I’m like, “Isn’t that a boy disability, not a girl thing?” And then shortly during my twenties, you know, during the job cohort, I started reading up and I’m like, wow, this actually makes sense. Yeah. When I look back, every other diagnosis never really made sense.

Bryan: Thanks. Okay. So what’s one piece of advice you would give to employers to help them to be more supportive?

Nicole: Provide job coaching, You know, provide extra support. Like if we’re in the nonprofit world, you know, editing documents. Help with editing. Editing PowerPoints, you know, that’s one thing, area where in my case, you know, I need a lot of support in.

Bryan: But what would you like employers to know? What advice would you give employers, Nicole?

Nicole: You know, hiring people with autism and other disabilities is worth it. We will reduce your hiring and training costs. Lower turnover, you know?Diversity is what makes the world great. Honesty, dependability, productivity, the ability to narrow focus, just focus on the task at hand and not worry about all the other nonsense and goofing off and all that.

Bryan: Thanks. Alan, what advice would you give?

Alan: I think it’s important to understand what kind of supports work generally for people on the autism spectrum. But I also think, probably more importantly, it’s important to understand specifically what kind of supports work for an individual employee. What kind of environment does the person thrive in?

Nicole: Person-centered. Yeah. Employment support needs to be person-centered. It’s not okay to “you fit the system”, you know. The system needs to fit you.

Alan: I think in general — again, I emphasize “in general”, because there’s always exceptions — people on the autism spectrum are incredibly diverse. But I think in general, it’s important to be very direct and concrete in your communication with an employee. I think it’s really good to use schedules and organizers to help the person–

Nicole: Structure predictability.

Alan: Yeah. Yeah.

Nicole: And [being] calm, cool, collected <laugh>. You know, when it comes to management styles, especially, you know, with dealing with anxiety, uncertainty, like, the world we’re currently in, you know, be somebody who can help somebody calm down when chaos occurs.

Alan: I think it’s really important. Another thing I think it’s really important for employers to know is that sometimes people don’t do so well with downtime. So it’s important to help the person understand what to do if there’s downtime, if they’re not busy at any given moment.

And in general, I think, you know, understanding the kind of environment that’s gonna work best for a person. A person might have particular sensory needs or, you know, they may overreact at certain sensory stimuli — sounds or things that they see — and that can really get in the way of a person being successful and being comfortable on a job. And, you know, it may look as though the person, you know, isn’t motivated or you know, they’re not listening, they’re not paying attention. In fact, it can be that those sensory things can be overwhelming and make it really difficult for the person to succeed.

Bryan: Yeah. When we talk about supported employment you know, the first part of that is that discovery process of really getting to know the person. And what we talk about is the ideal conditions of employment and sort of what is the best environment for that person. I know in my training, I use a video, and they talk about just sort of structuring the workplace. They have some great examples of like, you know, one young man who just didn’t like being close to other people and they sort of physically set the workplace up so that people wouldn’t get too close to him. Just sort of had some physical barrier. So you know, once they did that, it was successful for him.

Nicole: Mm-hmm. And, when you figure out the environment, you know, a person is more or less disabled based on their interaction within the environment. Like, you know, some people may, you know, [want to be] out in the back room. Others may be interfacing with the public.

Bryan: Right. Exactly.

Nicole: So, like, my sister who, who works in drtail, often when it comes to produce, she’s in the back.

Bryan: So what’s one piece of advice you would give people on the autism spectrum in terms of helping them to navigate employment?

Nicole: Dream big. Go for your dreams. You know, find allies who support you. Take advantage of secondary re-education programs like Think College, or the Succeed program, the LEND Program, leadership education, neuro-developmental disabilities, funded by the Autism Cares Act. Do informational interviews, go to conferences, network, be a broken record.

Especially networking. Find people who can figure out ways to get you into the back door. Especially when you factor in, you know, interviewing isn’t always, you know, the most ideal. We often do better, you know, “Okay, here’s a list of okay, you know, my articles.” Or selling your work samples here. Toolkit on this, toolkit on that.

Bryan: Mm-hmm. Yeah. Nicole, you mentioned interviewing, and I know more people are using the concept of video resumes. Because they might not really interview well but then they can videotape them doing certain jobs and tasks and kind of, you know, do showing rather than telling what their skills are.

Nicole: Mm-hmm. Soft skills are often more challenging for us compared to hard skills.

Alan: I think the one piece of advice I would give is maybe more than one piece of advice. That’s trying to equip few things in here. But I think it’s important to look at the environment for different jobs. You know, is it sensory-friendly? But I think first it may be it’s important to recognize what your skills are and what your needs are and what might be a good job match for you. It’s important to look at the sensory characteristics of the job: what kind of skills are needed, what kind of skills you need to learn to do it.

And I think it’s really helpful to do that with other people.

Bryan, you mentioned the discovery process, I think. Person-centered planning. We had a project that we called Family-Centered Transition Planning, where we had a series of person-centered planning meetings. And I think getting a lot of people together who know a person well, and know what kind of supports they need, what works for them in different environments can be really valuable.

And I mean, just building on existing relationships can be really helpful. When we get people together and we talk about possibilities, people know people who you know, they may be able to contact and help them get a job.

I think of one person in particular who was in our transition project. We had a person-centered planning meeting and we’re talking about job possibilities, he was very interested in cooking. And we identified a local colleague that had a great program, a food service program, and he was able to get a paid internship with them. And it all came about as a group of people who cared about the person and who knew the person well. Got together and thought about, you know, where can this person find a job or get experience in a job that’s going to really work for him.

I think another person who, you know his high school friends came to him and said, “We’re working for this company. We think you would be good there.” And he went and found a job there himself.

So I guess the big thing for me, is working as a team: working with family members, working with friends, working with professionals, to really come up with a job match that’s going to work for the person.

Bryan: Yeah, I definitely agree with that. I’ve been a participant in person-centered planning processes, like BS and things like that. And you’re right, the team is so valuable because if it’s just you, you only have your perspective. But then you gather your family and friends and people who know you well, they can really add to that. And, you know, I agree there’s a lot of value in that process.

What aspect of supporting employment do you think employers would find most surprising or informative?

Alan: I can jump in, Nicole. Unless you wanna go for it.

Nicole: Yeah, you can go answer that first.

Alan: I think in addition to the fact that people on the autism spectrum can be great employees (which I think a lot of people don’t necessarily understand to begin with) one of the things that people may find surprising is that people on the autism spectrum can participate fully in the social life of the workplace. Or they can often do that. There’s a tendency for people to think that people with autism need to work alone or need to work in isolation. And I think, you know, we really need to figure out what kind of supports work for the person so that they can interact with their coworkers and feel like they belong. Yeah.

Because we know that one of the biggest things is money is not the same as inclusion.

One of the things that gets in the way of successful employment often for people on the autism spectrum is difficulties with social interaction. And we’ve often tried to teach those skills and, you know, that can be really helpful on the job, especially if we focus on those specific social skills that a person needs to learn at that job. And to understand the workplace culture. I think that’s really important.

We can tell people, you know, “These are the rules.” People often do well when things are put in terms of rules. They understand this is exactly what I’m supposed to do in this situation. So i think teaching those skills can be really important.

But I think also we need to focus on the social environment itself and not just the person. You know, finding people who can be mentors for the person.

Nicole: Especially, you know, that can be a mentor around specific job skills and a task. Somebody who can be a natural support.

Alan: Oh yeah, exactly. A natural support who can help the person navigate the social environment and learn to give the person useful feedback. And I think that’s where support agencies can come in. They can work with people and they can work with employers to help them develop the skills that they need to support successful interaction. Nicole, anything to add on that?

Nicole: Yeah. Take part in self advocacy groups, self advocacy organizations, peer run employment programs where you can learn basic skills. You know: how to be assertive in the workplace. Like, the higher up curriculum. Peer mentoring, finding role models.

Alan: So Nicole, what do you think people who do hire people on the autism spectrum, what do you think they find most surprising once they hire someone?

Nicole: I don’t know. Hyperfocus? Or people can hyperfocus. Narrow focus, boom.

Alan: Yeah, yeah.

Nicole: That, honestly. Or you know, punctuality. Like me, I’m the exact opposite of my sister. Megan is always late all the time. With me, I’m Miss Punctuality. Employers like that. Like, if there’s a [Capitol] Hill visit, you know, I’m always the first one. Okay. I’m always like, “Leave an hour and a half: one half to take public transit, leave an hour and a half get there.” To the whatever policy meeting before everyone else.

Alan: I’m the same way, Nicole.

Nicole: To be early is to be on time is the slogan down here.

Bryan: <laugh>

Alan: Being late, the possibility of being late makes me really anxious.

Nicole: Uh huh, same here. I’m with you. Like me, like me, like, for example, you know, like my sister Megan, and she’s always, you know, late to work late. Everything. She’s always like, you know, come on, chop CHOP’s. Go, let’s get outta here. Quit, pull around. And of the Megan Shy, he’s ly anxious, he’s had depression anxiety during high school years. You look at both of us, were like the exact opposite in some ways.

Bryan: In my experience, what I think employers find surprising is, initially they might have some skepticism about hiring somebody with a disability, but once they do, I think they’re often maybe surprised that they can be a good worker. But I think what surprises them the most is just sort of the value added that they bring to the workplace. You know? Because they bring their own personality and characteristics and things like that.

Nicole: Sometimes we also come with our own health insurance: Medicaid, buy-in…

Bryan: <laugh>, right? but I think employers, you know, find that surprising that it, it really just adds to the workplace in, in many ways, you know, besides just their productivity.

Alan: We’re not asking the employer to be charitable when we ask them to hire a person. Yep.

Nicole: Yeah. Diversity is great, great for business. It can boost productivity and boost your bottom line.

Bryan: That’s right. Yeah.

Nicole: We’re seen nowadays with all the shortages.

Alan: There’s a large multinational corporation that does like, cloud-based, I don’t know — technology? I’ve gotten to know some people there in the past year. They’ve decided that having a diverse workforce is really going to strengthen their company. And part of that diversity is neurodiversity. They have a lot of people on the autism spectrum who they’ve hired, and it really benefits their organization pretty dramatically.

Bryan: That’s great. Yeah. More, more companies need to know that. Mm-hmm. All right. Well, any final words as we finish up here, Nicole?

Nicole: Well… embrace autism. Autism is amazingly unique. Totally interesting, sometimes mysterious, you know.

Bryan: Well said.

Nicole: Diversity is great for business, and it’s important nowadays. With all this talk about diversity, equity, inclusion, [it’s important] that autism and disability be at the table. Especially in the nonprofit social service sector.

Bryan: You’re exactly right.

Nicole: Writer agency should be hiring people with disabilities that peer mentors.

Bryan: Great. Thank you. Alan, any departing words?

Alan: Just: I’ve always been amazed in situations I’ve been involved with where, how successful people have been, you know, with just a little bit of support. Usually, some people require more ongoing and intense supports, but–

Nicole: When you’ve met one person with autism, you’ve met one person with autism.

Alan: Yeah, Yeah.

Nicole: You know, we’re not a puzzle, you know? We’re not a puzzle piece to be solved. Even though many of us at times may think in puzzles, we can predict trends, you know, honestly, predicting trends. Like, for instance, I’ve predicted, you know, all like, you know, I’ve, like when CDC guidance, you know, made decisions like black mass un predicted, you know, seeing the trend that I can predict, Okay, that’s gonna result in this surge, that surge told you that was common.

Bryan: Mm-hmm. <affirmative>.

Alan: Yeah. So I think that’s a really good example of, you know you know, someone on the autism spectrum, bringing some, you know, you know, needed skills to a job and valuable skills. And, you know, we just, you know, more employers need to learn just how valuable that employees on the autism spectrum can be to their, their businesses.

Bryan: Great. I agree. Well, thank you both for the amazing training that you did for us and for this podcast.

Nicole: Yeah, that was all the feedback that you got.

Bryan: It’s been very good <laugh>. So thank you both so much.

Alan: Okay. Thank you.

Bryan: All right. Take care.

Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

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