Over the last few weeks, high school seniors around the country have lined up to receive their diplomas. It’s an exciting time, but this transition into adulthood can also be challenging. It is especially difficult for those with an autism spectrum disorder. Members of the autism community refer to leaving high school as “falling off a cliff,” as it marks the end of most government support services. Unemployment for these young adults is high, as are rates of social isolation, even when compared to people with other disabilities. Now, as 50,000 individuals on the autism spectrum enter adulthood each year, calls to address their needs are growing louder. We look at new efforts to support adults with autism.

Guests

  • Paul Shattuck Associate professor, A.J. Drexel Autism Institute at Drexel University
  • Ilene Lainer Co-founder and President of New York Collaborates for Autism
  • Valerie Paradiz Executive director of the Autistic Global Initiative of the Autism Research Institute and creator of the Integrated Self Advocacy Curriculum

Transcript

  • 11:06:53

    MS. DIANE REHMThanks for joining us. I'm Diane Rehm. Autism does not end when children reach adulthood, but much of the support available to those on the spectrum does. More than a half million autistic individuals are expected to enter adulthood over the next decade. The housing, job and therapeutic resources needed by autistic adults have not kept pace with the increased demand. In this hour, how to best support adult with autism spectrum disorders.

  • 11:07:29

    MS. DIANE REHMHere with me, Ilene Lainer of New York Collaborates For Autism, Paul Shattuck of the A.J. Drexel Autism Institute and Valerie Paradiz of The Autistic Global Initiative. I hope you'll join us. Call us on 800-433-8850. Send an email to drshow@wamu.org. Follow us on Facebook or send us a tweet. And thank you all for being here.

  • 11:08:02

    MS. ILENE LAINERThank you for having us.

  • 11:08:04

    MR. PAUL SHATTUCKThank you.

  • 11:08:05

    REHMGood to see you all. Ilene, if you would, describe for us what's now called the autism spectrum.

  • 11:08:15

    LAINERThe autism spectrum is a wide spectrum of differences. There are people who typically have challenges with communication and socialization. It occurs in one in 68 individuals so it's quite frequent and four times more often in boys than in girls, historically, although we may find that changes as some of the identification of the disorder is more specific and understood better.

  • 11:08:42

    REHMWas Asperger's Syndrome at one time part of the autism spectrum or has it now disappeared as a separate and distinct disorder?

  • 11:08:59

    LAINERSo under the diagnostic codes that professionals use to communicate on the same plane with one another, Asperger's is part of the autism spectrum now.

  • 11:09:11

    REHMPart of it. And what does that mean? Give us an idea of the range of behaviors and problems and difficulties within that autism spectrum.

  • 11:09:27

    LAINERIt's such a wide range.

  • 11:09:28

    REHMYes.

  • 11:09:30

    LAINERAnd the way it manifests in each individual can be so varied. When it comes to communication, a person with autism may have difficulty being understood by others or difficulty understanding others. So it could be something as -- specific as having difficulty understanding non-concrete concepts, abstracts. So that may make it hard to understand sayings, and colloquialisms. I bumped into someone. You don't really bump into someone, but you have to understand what another person means by that. That could be a challenge.

  • 11:10:10

    LAINERIt may also be as challenging and difficult as people who can't communicate at all, have no ability to speak, may be able to communicate only through electronic or other means. It's really a huge range and that's part of what makes autism so much more challenging than other disorders or differences.

  • 11:10:33

    REHMAnd Paul Shattuck, what about physical behaviors, how did they range within the autism community?

  • 11:10:46

    SHATTUCKSo one of the difficult things to grasp about the autism spectrum is just how much diversity there is. It's a very big umbrella. I usually counsel families to try and understand their child's unique profile of strength and challenges as best they can and to become as articulate as they can about their child's unique profile of strengths and challenges because most families, following a diagnosis, embark on really a lifelong journey of interacting with scores of professionals and clinicians and teachers and people as their child ages through childhood, adolescence and into adulthood.

  • 11:11:24

    REHMAt the same time, Valerie Paradiz, given this wide range of both behaviors and responses, I would think it would be very difficult to diagnose autism.

  • 11:11:41

    MS. VALERIE PARADIZIt can be very difficult. And currently, the way it is diagnosed is by way of observation. In other words, there aren't genetic tests or other types of tests that tell us, yes, this person is autistic so we question a lot within our own community how are the diagnostic tools serving us? Are we diagnosing fully and accurately? Are there more of us on the spectrum? Are there fewer? So that's something that's always up for discussion in our professional community as well as in our autistic self advocacy community.

  • 11:12:22

    REHMSo are some individuals more obvious in their display of autistic characteristics, if I may use that phrase, than others and thereby easier to diagnose?

  • 11:12:43

    PARADIZI believe so, yes, absolutely. And for someone like me who was diagnosed with Asperger Syndrome when I was 40 years old, we'll often talk about passing, you know. In other words, it was very difficult for me to receive a diagnosis. I didn't go out looking for it. I went for help and was diagnosed. But professionals who do specialize in clinical diagnosis often share that it's more difficult to identify women on the spectrum and it's more difficult sometimes to diagnose people who are in that Asperger expression of autism.

  • 11:13:28

    PARADIZAnd often, that diagnosis may come very late for some of us on the spectrum.

  • 11:13:32

    REHMWhy did you seek help?

  • 11:13:35

    PARADIZI sought help because -- well, first of all, I'm a parent of a young adult on the spectrum who's 24. His diagnosis came very early in life when he was 3 years old and required early intervention and was having seizures. And at the time, I was working as a professor at Bard College and was sort of under the radar, never really hooking up with colleagues to build alliances. I actually just thought that one day, if I kept publishing, I'd just be given tenure.

  • 11:14:09

    PARADIZI didn't know you had to build political partnerships and networks in work settings in that way. But when my son, Elijah, had a crisis in fifth grade and I wanted to remove him from the public schools, I started a school for children in middle and high school. And once I was in that management position, I began to have real issues because I was required to interact more with people. And we see that a lot in the autism sort of employment sector where someone may be doing very well in a position and then be asked to move into more of a management position. It gets very challenging.

  • 11:14:52

    REHMValerie Paradiz, she's executive director of the Autistic Global Initiative of the Autism Research Institute. She is creator of the Integrated Self Advocacy Curriculum. Do join us, 800-433-8850. Paul, many in the autism community refer to the end of high school as kind of falling off a cliff. How come?

  • 11:15:28

    SHATTUCKSo when children are served -- when they're attending public schools, they can be enrolled in special education. Special education is a federal mandate that all states have to provide special ed services to public school students. That mandate for comprehensive support falls away when kids age out of eligibility for being in high school and receiving special ed services. There's not corresponding comprehensive set of easily available services in adulthood.

  • 11:15:57

    SHATTUCKThere becomes a patchwork quilt of very disconnected services with different eligibility criteria so families find that a very difficult transition to navigate because you go from literally having sort of one-stop shopping under one roof at the school for many of the therapeutic supportive services your kid needs, to a state of affairs where there is not that one-stop shopping any longer.

  • 11:16:21

    REHMNow, that's not just for children with autism...

  • 11:16:26

    SHATTUCKCorrect.

  • 11:16:26

    REHM...I presume.

  • 11:16:28

    SHATTUCKCorrect. Although, you know, this phenomenon of the falling off the cliff happens for just about all the young people in special education they leave high school. But the research we've done at the A.J. Drexel Autism Institute documents that the young people with autism tend to fall further and harder than most other young people who are in special education. So in the first two to three years after leaving high school, the rate of complete disconnection from any kind of post-secondary educational learning opportunities, employment opportunities is over 50 percent for young people with autism, which is a much higher rate of complete disconnection from opportunity compared to young people who have other kinds of disabilities.

  • 11:17:08

    REHMEven physical disabilities.

  • 11:17:10

    SHATTUCKPhysical disabilities, intellectual disabilities.

  • 11:17:12

    REHMInteresting.

  • 11:17:13

    SHATTUCKMental health problems.

  • 11:17:14

    REHMAnd Ilene, some people have said that we're about to experience and increasing tsunami of young people in this kind of situation, moving into adulthood. Why is that?

  • 11:17:33

    LAINERI think the rate of diagnosis went up. I think that more people understand what autism is and professionals who previously would not have identified someone because they just didn't know or weren't trained are getting more training and understand what some of the signs are of autism. And so we're seeing greater numbers being identified. It's estimated that half a million people who are in the child system will go into the adult system over the next 10 years.

  • 11:18:04

    REHMIlene Lainer, co-founder and president of New York Collaborates For Autism. Short break here, we'll be right back.

  • 11:20:00

    REHMAnd welcome back. Much has been said and written about autism in childhood. The question becomes, what happens when these children grow up. What is available for adults with autism? And we have three guests with us today. Paul Shattuck is with the A.J. Drexel Autism Institute at Drexel University. Valerie Paradiz is with the Autistic Global Initiative of the Autism Research Institute. Ilene Lainer is co-founder and president of New York Collaborates for Autism. We taking your calls, your email. I look forward to hearing from you.

  • 11:21:03

    REHMIlene, I gather your organization's first project was charter school for autistic children, but now you've increasingly turned your attention to supporting autism for adults on the spectrum. Talk about how you do that.

  • 11:21:27

    LAINERWe're interested in changing the systems that support people with autism at any age in life. We're looking to improve those services to give them a better chance to be integrated in their communities and to be able to get the supports they need to succeed. So we go out, and we look to see what might be missing or not working well, and then we research and look to see in other areas, in other fields, what ideas we can borrow.

  • 11:21:56

    LAINERAnd as Paul Shattuck says, and I always borrow this phrase, we do a little R&D, which is we rob and duplicate some of those ideas, and we copy some of the best ones, and then we try and build on them. And so, often we look to others communities' success and try and borrow on that so that we can enhance it with autism supports. And we've done that with schools and employment programs and many other things.

  • 11:22:21

    REHMAnd Paul, what are some of the best ideas for adults with autism?

  • 11:22:28

    SHATTUCKWell, I think, you know, first of all we needed sort of a measurement revolution in this field. We have spent billions of dollars in the last two decades on research and interventions for young children with autism, and yet the research that we do on transition outcomes documents that we're still stuck in the lousy zone when it comes to post-secondary outcomes for employment, lifelong learning and lifelong living opportunities.

  • 11:22:51

    SHATTUCKI think part of the problem is that the traditional paradigm and framework for thinking about autism intervention focuses almost exclusively on fixing the person. You know, there's something with this person. We need to change their behavior and so forth. Of course, for all young people we need to focus on helping them to learn new things, build their skills, get ready for adulthood, and that's no different for young people with autism.

  • 11:23:14

    SHATTUCKWhat we tend to not focus on, as well, in our community and I think is one of the reasons Ilene's work and Val's work is so important, is the other half of the equation of how life turns out is whether there are adequate opportunities for people to step into. Are there jobs? Are there opportunities to participate in the community through volunteer work? Are there opportunities to build new relationships and opportunities for lifelong learning and work?

  • 11:23:42

    SHATTUCKSo a lot of the research and programmatic innovation that's happening on that side of the equation, which is focused on creating opportunities through community development, rather than just focusing on individual therapy and treatment, that's I think where the exciting work is.

  • 11:23:58

    REHMValerie, how did you or where did you manage to get help?

  • 11:24:07

    PARADIZWell, once I had my diagnosis at age 40, I was able to become more targeted in the therapeutic support I'd had my entire life. I'd been in therapy and often treated for depression, which was something I also was struggling with. But once I had the diagnosis of autism, I was also able to look at other aspects of my life, especially around the issue I brought up earlier of just learning how to build networks more, learning to find mentors just in my field.

  • 11:24:44

    PARADIZIn fact, the autism community has been so very good to me. I've had so many learning opportunities by moving into this field and building capacity with others both on the spectrum and not on the spectrum. I've learned many new skills through that process.

  • 11:25:01

    REHMSuch as?

  • 11:25:01

    PARADIZWell, I am now in a management position, and it doesn't feel like I'm burning the candle at both ends, working at the Autism Research Institute. I love working in collaborative efforts with others.

  • 11:25:19

    REHMAnd was that part of the basic problem, that you were on your own, you felt alone, you were alone and did not know how to carry out basic social skills?

  • 11:25:35

    PARADIZYeah, I mean, I think I had a certain modicum of them because I was passing, as you say. I have many sisters. They sort of socialized me growing up in many ways. You know, I thought cheerleading was boring, and doing your hair was, like a waste of time, but I learned from them these things that, you know, ended up being important later, at least to know about.

  • 11:26:04

    PARADIZI'm kind of getting off the subject, but, you know, I also worked a lot on my sensory challenges.

  • 11:26:09

    REHMSuch as?

  • 11:26:11

    PARADIZA really significant difficulty with touch and also significant vestibular and visual issues, which I continue to work on and struggle with in a variety of ways.

  • 11:26:27

    REHMLet's go back to that moment of touch. Explain what happened, what the problem was.

  • 11:26:38

    PARADIZWell, certain kinds of touch are very difficult for me to tolerate or feel. A very light touch is extremely difficult, and I wish to recoil. So you can imagine in relationships, you know, which I sought out and wanted to be intimate with others, recoiling in that way sends out a message, like oh, this person doesn't wish to connect in that way. And I think that's a very important issue to put out there is that, you know, our sensory differences may make us appear to not want to connect in the more normative ways that others do, but actually many of us do, and sometimes our sensory differences actually prevent us from participating in ways that, you know, others sort of expect.

  • 11:27:30

    REHMSo intellectually, emotionally, you want, but physically you recoil from, and that does create problems in ordinary relationships.

  • 11:27:47

    PARADIZThat's right.

  • 11:27:49

    REHMAs much as in the workplace.

  • 11:27:50

    PARADIZAbsolutely. So learning how to advocate, self-advocate for sensory differences, communication differences, social differences, almost like being an ambassador to your own culture, that's one of the main things that I like to focus on in my work.

  • 11:28:09

    REHMPaul, you recently released a report on young people and their transition into adulthood, and what you found was that many of them feel disconnected. Now describe what you mean by disconnected.

  • 11:28:30

    SHATTUCKYes, so our national indicator's report on transition outcomes at the Drexel Autism Institute focused on collecting and reporting as much nationally based data as we could put our hands on from different sources. And this phenomenon of disconnection was actually not a subjective sense of feeling of a self-report of young people with autism. It was a compilation of different hard measures of, you know, do people - have people ever had a job since leaving high school. Have people ever had an opportunity to go to community college or any kind of college? Have they ever had a chance to participate in internship or get vocational training?

  • 11:29:05

    SHATTUCKAnd during the first three years after high school, over 50 percent of young people on the spectrum, the answer is no, none of the above, no opportunities to participate in learning or work. So that's a phenomenally high rate of disconnection. There's a parallel conversation in our country around, quote, disconnected youth, which is a phrase that's usually used in reference to young people in very poor neighborhoods, who drop out of high school, who don't go on to college, who can't find work.

  • 11:29:32

    SHATTUCKAnd we actually found quite a bit of fruitful cross-fertilization of looking at some of that scholarship and research in that field for understanding this phenomenon of disconnection, understanding that it's not entirely unique to people on the spectrum, but it does manifest in a particular way.

  • 11:29:46

    REHMBut Ilene, as Valerie has so well demonstrated, there may be some who are autistically labeled as such who are very high intellect and others who may not be able to achieve at that high level. So as a co-founder of New York Collaborates for Autism, how do you find jobs for that wide range of adults with autism?

  • 11:30:27

    LAINERWell, we have a transition from high school to employment program called Project Search Collaborates for Autism, and it's done in collaboration with a local school district and a vocational rehab agency. So we already start connecting people. And also an employer, New York Presbyterian Hospital. And we have people who in their last year of high school who will come to that program and spend an entire year learning about a job and working next to typically developing workers, learning the basics of a job.

  • 11:31:00

    LAINERThere's an unwritten code in jobs that we all know. You may not say the same thing to your boss that you'd say to a co-worker, or you know that when you're finished doing what you're doing, you're not supposed to sit around and play on your iPhone. And there are a lot of unwritten rules we all know. But people with autism may not understand that subtext, and so we break it down and help them learn.

  • 11:31:22

    LAINERI think it's important when we look at programs that support people with autism and what our goals are, for a while we've understood that helping develop skills is important, and that's very important for every individual.

  • 11:31:37

    REHMSure.

  • 11:31:38

    LAINERBut I think that what Paul has been talking about, which is this sense of community, is something that we're beginning to understand is so important for individuals with autism, connecting to community.

  • 11:31:48

    LAINERThe third component that I think we often forget and is overlooked but really important is promoting independence to the extent possible. And in adulthood, that's so important and often lacking, and we find that so many people don't succeed because they may have learned a skill, but they don't do it independently. And in our adult system, unlike our childhood system, there's no money around to give the kind of support that there is when you're in school.

  • 11:32:17

    REHMAnd how willing are employers, Paul, to take on individuals who do suffer from autism or experience autism is perhaps a better way to put it? How often do they encourage and are able to keep those employees on the job?

  • 11:32:45

    SHATTUCKWell first, I just want to thank you for making that self-correction and not using the word suffer from autism because I think that's a very hot phrase in our community.

  • 11:32:52

    REHMIndeed.

  • 11:32:55

    SHATTUCKAnd I really appreciate your re-wording of that. So the employment issue is huge, and the good news is that we have a growing number of employers, particularly large, corporate employers, who have, for a variety of reasons, undertaken to create hiring initiatives for people on the spectrum and other developmental disabilities. So it's actually, in my sense, a very exciting time because there's a lot of experimentation and innovation happening in different communities and different corporate setting around the - around the world, really.

  • 11:33:25

    SHATTUCKSo it's a time of...

  • 11:33:28

    REHMBut give me an example of the kinds of jobs available.

  • 11:33:33

    SHATTUCKOh boy, they range from, you know, a clerk and shelf-stocking kinds of jobs, so Walgreens and some of the other sort of retail-based operations have made real initiatives to hire people at that entry-level tier. And then there are other corporations, SAP Software, a multinational giant in software development, they've got a hiring initiative going. I think it's actually called their Global Employment Initiative, and it's aimed at hiring people more at the level of computer programmers, IT workers, so much more skilled workers.

  • 11:34:06

    SHATTUCKAnd again, you have to realize that autism affects people across a very wide range of abilities. And we need to be creating opportunities and having conversations with employers that will create opportunities across that full range.

  • 11:34:19

    REHMAnd you're listening to "The Diane Rehm Show." We've got lots of callers. I'm going to open the phones, 800-433-8850. First to Diana in South Bend, Indiana. You're on the air.

  • 11:34:41

    DIANAHi, thank you for having me.

  • 11:34:43

    REHMSure.

  • 11:34:45

    DIANAHow are you?

  • 11:34:45

    REHMFine, thanks.

  • 11:34:47

    DIANAWe have a 22-year-old son that just graduated from IU Bloomington in May who was diagnosed when he was five, and we were told he would have difficulty with reading and/or never read at that age, and we didn't accept it. And so at that point, in 1998, there didn't seem to be the network like there is today, and so we did a lot alone, as parents, helping him, and he graduated with a 3.86 in mathematics.

  • 11:35:21

    REHMWow, that's terrific.

  • 11:35:24

    DIANAThank you. I also want to tell you and your listeners that he told me that WRP, which is Workforce Recruitment Program, helps people with disabilities find government jobs, and also there's Bender Consultant Services for people with disabilities.

  • 11:35:46

    REHMGood, I'm glad you've mentioned these resources, and we will have some of these posted on our website. So I do appreciate your call. Can we talk about this email from Matt in East Grand Rapids, Grand Rapids, Michigan, who is the father of an 11-year-old boy with autism? He says with the number of people with autism entering adulthood increasingly every day, we as a civilized society must help them find a place where they can make a contribution and maintain their dignity. Doing so will give them and us better lives. I'm sure you'd agree with that, Valerie.

  • 11:36:46

    PARADIZI do agree with that, and I believe that sort of witnessing the past 20-plus years of my own son's life and the kinds of developments that have occurred in our community and in education that this next generation of young people on the spectrum, like an 11-year-old, are going to have many more doors opening for them, and it's still a long road, and we're all walking it together, but year.

  • 11:37:29

    REHMValerie Paradiz of the Autism Research Institute. Short break here, and more of your calls, your email when we come back.

  • 11:40:02

    REHMAnd we're talking about young people transitioning from childhood to adulthood who may be on that autistic spectrum. Three people are with me. Ilene Lainer, she is co-founder and President of New York Collaborates for Autism. Paul Shattuck is with the Drexel Institute and Valerie Paradiz is with the Autism Research Institute. Just before the break, we were talking about working life and the types of jobs available. Ilene, do you want to comment?

  • 11:40:51

    LAINERYes, I think we have to recognize that individuals with autism not only have challenges, as we all do, but also have strengths and can make enormous contributions. And we find often that individuals with autism may have very strong visual skills, may be rule followers, may see patterns, be able to discern things better than you or I. I have a son on the spectrum who's 18 who can do a jigsaw puzzle faster than I can see it. And I still don't know how.

  • 11:41:21

    LAINERSo, understanding what an individual's strengths are helps us then determine what jobs they can do well. And support them to do that. For individuals with autism, it's important to look at jobs that are systematic, because those patterns are there. And because those rules are there. And depending upon one's abilities, they can often do very complex systematic jobs. But even if they're not complex, they can do lots of different things. And I think we have to recognize that each individual with autism can make a contribution in their own way. And it's our job to help support them so that they can work.

  • 11:41:55

    REHMPaul.

  • 11:41:56

    SHATTUCKYeah, you know, that's interesting. I've heard Ilene use the word contribution and one of your callers used the word contribution. I think it's a really important word to play off of. You know, helping create opportunities for adults with autism to succeed is really about helping creating -- helping us to create communities that work better for everyone. And are places that we're all proud to live in. And I think that this shifting of the discussion from we want to give hand outs and help people and this is just a charitable good thing, because, oh, look at these poor people that are suffering.

  • 11:42:29

    SHATTUCKTo a conversation about how to unleash the contribution power of individuals on the spectrum and their families. And really, this idea that by creating communities, they're more responsive to the needs of people who have special needs who are making communities that are better for all of us. And becomes a recruitment pitch for corporations that want to attract the best employees that often have family members.

  • 11:42:55

    REHMHowever, changing the language and changing the pitch doesn't always change the reality of what these young people face. For instance, Silky writes on Facebook, thank you for covering this topic. My son just completed his first year in college. He was able to live in the dorms. Luckily, he had a very kind roommate, but he was lonely. How could I help him connect with his peers? I see this as one of the biggest challenges he will face throughout his life. And I think you, Valerie, probably went through some of that.

  • 11:43:50

    PARADIZI did, actually, in college, myself. It was one of the loneliest times in my life. High school was much easier, because I had my sisters around. And I did start having mental health issues with depression while I was in college. One of the things that I'd love to suggest, there are actually two things that come to mind. One thing is to know other people on the spectrum can be very helpful. And it can be helpful in a lot of ways. One is to know others who are like you, and you can have discussions with about the things that you love and share.

  • 11:44:32

    PARADIZAnd also the things you struggle with. And that can often be a bridge to building relationships with others who are non-autistic.

  • 11:44:41

    REHMHow do you find those people? Does the college, does the university play some role there?

  • 11:44:49

    PARADIZYeah, on a campus, you can look to see if there's a disability students organization. And if there isn't, start one. The colleges generally welcome that. Those might involve a mix of disabilities or, depending on the size of the college, it can be specifically for people with autism.

  • 11:45:09

    REHMBut you faced depression instead.

  • 11:45:14

    PARADIZI did. And worked on it, and what I did in college to sort of survive was study all the time, which was something I was very good at. And getting straight A's. But I spent most of my time in the study hall, not really socializing with others. And really was struggling with that aspect, just the social life aspects of college. And that transition from high school to college was very difficult. It's much more structured in a high school setting, day to day.

  • 11:45:47

    REHMOf course. Of course. But had you had a university or a college which did create such a list of people who diagnose themselves as having some sort of disability, that would have helped you?

  • 11:46:10

    PARADIZThat would have helped, and then also shared interests. We all have, not all of us on the spectrum, but many of us have deep and focused interests or abilities. And so, I did hang out with the nerdy language crowd. We all learned foreign languages and, you know, that was the other approach.

  • 11:46:30

    REHMSo that helped a lot?

  • 11:46:31

    PARADIZYes. Oh yes.

  • 11:46:33

    REHMAll right, let's go back to the phones. Let's go Leo in Cincinnati, Ohio. You're on the air.

  • 11:46:43

    LEOYes, thanks Diane. It's really nice to talk to you and your guests. I'm a retired psychiatrist. I used to treat a lot of autistic children. Ever since (unintelligible) introduced the word autism, it has been totally misunderstood. And what I saw in my practice is that people with autism have difficulty navigating their emotions. Therefore, they become depressed or irrational sometimes. Sometimes, maybe lash out. But once they form a good relationship with either a family member or a friend or a therapist, they can function very well.

  • 11:47:38

    REHMWould you agree with that, Valerie?

  • 11:47:41

    PARADIZAbsolutely. Having people in our lives who love us and understand us and offer feedback, you know, on all sorts of life matters is very, very critical.

  • 11:47:55

    REHMGive me an example.

  • 11:47:57

    PARADIZOh, a good example. Let me think. That's a quick question to respond to. Well, I get a lot from -- I was speaking earlier, just fellow autistics who I have some dear friends on the spectrum who've given me feedback and assistance in sensory issues. And dealing with sensory issues in a variety of settings. We also spend time, I guess, how would we say, sort of complaining about the kinds of things that the neuro typical world sort of presents to us, you know? And how do we problem solve around that personally that also, you know, in collaboration with others, too.

  • 11:48:42

    REHMNow, for you, Ilene, you talked about your son. Has he had psychotherapeutic help as well?

  • 11:48:54

    LAINERNo, he hasn't. He has greater communications challenges than most individuals. So, those typical talk therapies aren't going to be effective for him.

  • 11:49:04

    REHMRight. Right.

  • 11:49:05

    LAINERWe find that helping find interests on-ramps to connect. It's about finding someone's passion and being able to connect with them. So, one of the things that was hugely helpful, that my husband had done, was he found that our son loved sports. And so, he really focused on things that he enjoyed and was good at and taught him to do. They weren't always easy. They may have been more difficult to learn than someone who was typically developing.

  • 11:49:36

    LAINERBut he did learn them and now it's something they share, and that gives him a connection to others, so when previously, he was more isolated, he now can play on a special needs basketball team, which gives him a sense of community. It may not be talking community. It may be doing community, but that's still his own community. And that brings him joy, and then it brings me joy.

  • 11:49:57

    REHMAnd of course, not all high schools, I would imagine, as yet, Paul, have these transition programs. Perhaps very few.

  • 11:50:12

    SHATTUCKThat's correct. Yeah, no, very few programs have transition programs explicitly for young people on the spectrum. By law, every young person who is receiving special ed. Services in high school is required, is supposed to be entitled to getting a what's called a transition plan. But we know from the research that we do that the actual structure, content and effectiveness of these plans is quite weak. And what's happened in a lot of the fields that are, you know, where the training happens to prepare people to help young folks with disabilities, there's a lot of focus on process.

  • 11:50:45

    SHATTUCKAnd sort of checking off the box. You know, did we do the plan, did we have the number of meetings we were supposed to have? And there's very little focus on measurable results. So, one of the big things we emphasize in our research is on building indicators and things that can track whether we're actually getting better at helping people and where the outcomes are better. Because there's a lot of this, talking in this phrase of moving the needle on things like employment.

  • 11:51:08

    SHATTUCKAnd we take that pretty literally. Like, we want to literally move the needle and see the unemployment rate go down. So, you know, that is something that is novel, really, for the world of special education and a lot of the different service agencies and sectors that are traditionally involved in helping this population, they are more focused on measuring whether we're doing the procedures and steps that we're required to do. And there's very little focus on collectively measuring the impact of all those efforts. Which is to the tune of billions of dollars a year.

  • 11:51:38

    REHMWell, and think about the number of college, pardon me, college counselors per numbers of children in high schools ready to graduate. And the minimal counseling that they get, so I can only imagine that it's even tougher for young people trying to get transition help into the workplace, Ilene.

  • 11:52:12

    LAINERYeah, I think it's difficult for them to get the help. I also think that many professionals don't fully understand what that help is and how to give it. So, the things that are the outcomes, let's get you a college degree, may not, for example, be what's most important to focus on on that time for the individual. Is it really about saying, I can hang a diploma on my wall, or is it about being able to find a job and to be able to be successful in a community and a happy life?

  • 11:52:41

    LAINERSo, knowing what the outcome is and what we should measure is really important. Right now, I think our systems are somewhat broken, even under the IDA, one of the measurements that we have, when students leave school, doesn't distinguish between whether someone ends up in a day-hab program or whether they go to college or whether they have a job.

  • 11:53:05

    REHMAnd you're listening to "The Diane Rehm Show." Now, the one thing I haven't asked you about Valerie, is the integrated self-advocacy curriculum. Explain that.

  • 11:53:21

    PARADIZSure. I was involved in some of the earliest years of the autistic self-advocacy movement within the broader disability movement. So, in the mid-90s, there were adults on the spectrum who began to get together and share experiences and also learn from, for example, the deaf community or even the LGBT community, how to sort of promote our own social movement within the broader disability movement. And so, I learned very many things at that time by talking to many people on the spectrum.

  • 11:54:04

    PARADIZAnd learned that really understanding how to advocate for our own sensory and social communication differences was absolutely necessary in the way that someone with a mobility difference may need to advocate for access, you know, in a variety of settings. Mobility access. And that it was that simple and straightforward and yet, the broader culture needed to learn much more about those things.

  • 11:54:33

    REHMInteresting. All right, finally, a call from Michelle in Clarksburg, Maryland. You're on the air.

  • 11:54:42

    MICHELLEHello.

  • 11:54:45

    REHMYes, go right ahead, Michelle.

  • 11:54:47

    MICHELLEGood afternoon. I want to echo my (unintelligible)

  • 11:54:53

    REHMMichelle, I'm afraid we're losing you. I'm afraid that cell phone may not be working quite as well. Let's see if we can -- this telephone system gets a little crazy every now and then. Well, I'm afraid we'll have to avoid the telephone at this point. Here's one final email. This from Facebook. I have two boys, both with Asperger's. One is nine, the other 13. I know they can both be very successful. They both get excellent grades, if they can find a place that appreciates their abilities and can be patient with their social challenges. You found your own way, Valerie.

  • 11:55:56

    PARADIZYes, but also with the help of others on the spectrum. So, learning about your own disability is critical and not all of us on the spectrum are able to learn about our own disability or in the same ways. There are many who I've worked with in schools, when I go to do trainings with my integrated self-advocacy curriculum. For example, I may be in a transition classroom with mostly non-speaking individuals on the spectrum. And yet, they know very well what they're sensory or social needs are.

  • 11:56:35

    PARADIZAnd often, their behaviors will be read as, you know, maybe something that needs to be redirected and one way to redirect may be to develop self-advocacy ability.

  • 11:56:48

    REHMAnd one final quick question, Ilene. I know your organization focuses on housing issues, as well.

  • 11:56:58

    LAINERWe are focusing on community living issues. So, I think, right now, out there, people often talk about housing as if it's about the home or the structure in which people live, and it's important for us to understand it's about community living and the supports and services that we give people, to integrate them in the community and be successful.

  • 11:57:17

    REHMIlene Lainer, Paul Shattuck, Valeria Paradiz. We will have all connections to their organizations on our website. Thank you all so much.

  • 11:57:31

    LAINERThank you.

  • 11:57:32

    SHATTUCKThank you for having us.

  • 11:57:32

    PARADIZThank you.

  • 11:57:33

    REHMAnd thanks for listening. I'm Diane Rehm.

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