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Below is an extended transcript excerpt from the Autism Now series, edited for length, relevance and clarity, with Dr. Peter Gerhardt, director of adolescent education, McCarton School, New York City, on adults with autism.
Somebody said that the number of adolescents with autism who are about to become adults is a freight train that's about to crash into the social security system. Is that apt?
DR. PETER GERHARDT:
I think that's a very apt descriptor. A colleague of mine who works at Center for Medicaid Services also described it as Hurricane Katrina for people with developmental disabilities.
How big is that freight train? How many current adolescents with autism are about to become adults over the next few years?
Well, estimates are about 700,000 to 800,000 kids are moving through this system. Time is not on our side. These kids are aging at the same rate as all of us. And honestly I'd like to slow it down for myself which I can't. But very quickly these kids are leaving that system and woefully for adult lives.
Now public monies in the education system have been available for these people with autism up until 21.
What is there for them then?
After the age of 21 there's very little. Well, there's nothing in terms of an entitlement. There were kids without disabilities who were getting education. So there was a civil rights issue to educate kids with disabilities.
There's nothing similar in adults. So, the entitlement idea doesn't really exist. It's more we're going to provide services if we have the money and if you fit into this service. So more and more we're seeing kids graduate out of high school to nothing. They go onto waiting lists, they sit at home. Mom then has to stay at home or Dad has to stay at home if it's a family where two parents were working before. The impact of this graduations curve is not just economic in terms of Medicaid. It's economic in terms of families in that micro level it has a tremendous impact.
And when the parents get old and die?
Unless there was some plan in effect, kids go into state-run institutional services, which is unfortunate. There needs to be a much more upfront understanding of the needs of these individuals, an understanding of the potential of these individuals.
I think if we as a society move beyond this idea that they're only doing care — the realization that people with autism are equal citizens and have the right to equal access to life, liberty and the pursuit of happiness that the rest of us do. I think what we're currently seeing would at least change in some subtle but important ways.
Well, one of the things that we're looking at moving forward is really accessing existing community support. So we're going to Lions Clubs, we're going to the cashier at the local grocery store, we're going to our local communities of faith, and we're trying to build supports around these individuals with some support from federal or state governments.
Once we can develop more of this community, then we can start to bring people into the lives that they deserve. They're not outcasts, they're not different, they're just part of that continuation of human existence that we all sort of live with.
Do you think it would be recognized today as a civil right to continue the entitlement that has been available up to 21?
Ethically, I would love to say that would be possible. But legislatively I just don't see it happening. We're in such a bad economic climate. The government is talking about cutting Medicaid and even postponing the day to which you get to Social Security. And people who are eligible for Social Security vote; folks with autism tend not to vote. The impetus to spend money on this group of people just doesn't exist.
I think that's why we put so much attention into "cure." The idea is that we'll eliminate this problem by curing all these kids. Which unfortunately, even if there's an attempt at finding a cure, it's not going to help the guys I work with. My guys who are here are going to be here until they're in their 90s. And those are the guys that I'm really concerned about.
What do they need?
First of all, they need people who understand the needs of adults. They need trained people who can work with them. One of the problems that we have this other education law — No Child Left Behind — that requires you to be a master's level teacher, have specialization, continue to get CEUs every year to actually keep your teaching license.
You have to be a speech pathologist with your master's, a PT with your master's. All these people have these advanced degrees and have to continue to get credits. Then these kids turn 21 and in almost every state of the union– if not every state of the union — the credentials to work with adults with autism: high school diploma, driver's license and a criminal background check.
And paid what?
And paid what just above minimum wage, usually. Maybe $8, $10 an hour. It is not considered a career choice. Nobody goes into the field of adult services looking at it as a career. Teacher is a career. Special ed teacher is a career, speech path is a career, OT is a career. Group home manager, not a career. Job coach, not a career. They're seen as way stations.
The U.S. Department of Health and Human Services' statistics from 2004, last year from which these data were available, indicate that programs serving adults with developmental disabilities in general on an annual basis have a staff turnover rate of 50 percent and a vacancy rate of 10 percent. That's 60 percent. You can't run a McDonald's like that.
So the first need is stuff trained to deal with adults even after continuing development.
What is the next need?
The next need is to use our hard earned IDEA entitlement funds.
15:10:20:14 That is the educational dollars?
Yes. In a way, that actually gives kids the skills they need to have a positive quality of life when they graduate. For example, we continue to focus — in some ways appropriately — on academic knowledge as being the grail. Look, my son can read. Look, my son does math. When the fact of the matter is adaptive behavior is the grail; life skills are the grail.
And I don't mean simple life skills. I don't mean heating up a Hot Pocket. I mean navigating New York City streets and not just stopping for the crosswalk lights. But knowing that there's a garage midway on this block and looking for that car. That's the skill that gives you a life.
And social relations.
And everybody deserves to have a friend. Everybody deserves to be included. But I think what we have to do is not just continue to educate people with autism in how to be more social, but we need to educate the community about how to be social with people with autism. We need to give them the tools to better understand what it's like to be on the spectrum. That this person may not respond right away with you. They may have an idiosyncratic question for you. They may not even say anything to you. But you can still say hi to them. You can still be their friend.
One of the things — and this is somewhat of a generalization — but I think when somebody with autism or somebody on the autism spectrum is your friend, they're just your friend. There's no ulterior motive. They're not after your hot sister. They don't like your car. They just like you.
And I think that's an incredibly valuable perspective that we've somehow lost. Some of my best friends are on the spectrum. And I value their friendship, their honesty, their intelligence, their humor. And the dignity and quality they bring to my life.
They're honest because they can't dissemble.
Absolutely. For example, some of my friends who have Asperger's syndrome — if I see them once or twice a year at a conference, they may come up to me and say, "Hi Peter. You put on weight, didn't you?" And I say, "Yeah, I did." And they say, "Well, how are you?" And I say, "Fine."
But it's just a statement of fact. We just sort of go on, and I'm fine with that. I compare to my neurotypical friends who at the same conference come up to me and say, "Peter, you're looking great. What are you working out? Good." And then they walk away and go, "Dude put on weight, didn't he? Wow." I prefer that upfront interaction, but that has to be taught. You have to understand that they're not criticizing you. It's just a statement of fact.
These life skills that you say education dollars should be used — the education dollars are only available until 21. So are you saying that needs to continue beyond 21?
Some form of lifelong learning definitely needs to continue. But we need to look better at what the future is for kids on the spectrum no matter where they fall on the spectrum. You know, there are any number of people with Asperger syndrome or with higher cognitive abilities who do go to college.
But in order to succeed at college, you still need to know how to live on campus, how to interact with professors, how to navigate the college system, how to be part of a study group. More people with Asperger syndrome fail at college due to all that than the academic requirements. Okay, so if we're just focusing on this one half of this equation, we're not preparing kids.
Do colleges have a responsibility to make that easier for students with autism?
They have a responsibility to provide equal access to equally qualified applicants. And by doing that, they have a responsibility to make accommodations to different students. But what's different from the educational years where states are required to find people with a disability and provide them an education.
When you go to college, you have to go and ask for the supports you need. You have to go to the office of disability and support say, "I have Asperger syndrome on the autism section. I need extra time on tests. I need this amount of time with a professor. I need this, I need that." And then it can be negotiated. It's still not even, you know, a carte blanch that you're going get everything. But you still have to be responsible for your own supports, which again we don't tend to teach that.
What do you see as the best kind of life for a young adult with autism?
I think for all of us, as you go through all the quality literature, I think it comes down to three big components: choice, control and confidence. We all like choice in our life, and we typically make thousands of little choices.
I thought it was interesting this morning. I opened my cereal cabinet and realized that I have 12 boxes of cereal there. I don't need 12 box of cereal, but I'd like to have 12 boxes of cereal. So choice is integral.
Control. Actively participating in decisions that actually impact your life. Unfortunately, most folks on the spectrum don't get a whole lot of input into what they're going to do, where they're going to be, who they're going to live with, where they're going to work. All of these things are often decisions made by other people — right down to what you're going wear that day. So we could do a great deal in incorporating choices that are of value to people.
The last one is competence. I think we all on some level thrive on competence. We like to feel good about what we do. I think in many aspects people on the spectrum rarely get a chance to feel competent. Educationally speaking, every time somebody masters a new goal, we give them a new goal. You never get a chance to be really, really good at that sort of stuff.
So, it's like playing two rounds of golf, and you hit the ball 80 percent of the time. So we say you've mastered golf, and now go on when that's not how life really works. So I think if we started to look at these three variables in relation to how we define adulthood, which is what we do for a living, where we work, what we do with our free time, our leisure and recreation skills, our public social circle. Those are all those people that we sort of know. I think that's how we build lives of quality for folks on the spectrum.
I'm going to ask you again, what kind of life do you hope for the adolescents who are going to become adults?
Well, I think the simple answer is the same life I hope for everybody. If you look at this concept of quality of life, and you look at all that we know about quality of life, it does seem to over simplistically boil down to three big concepts, which are choice, control and competence.
We all like choice in our life. Go to any supermarket and look at how many brands of cereal are on the shelves or how many sweeteners we have today. One of my indices of how good a restaurant is how many different types of sweetener they have on the table, because that means they're attentive to customer demands, becase we like the pink packet or the blue packet or the white packet. So choice is integral.
Control is this second part. We all like to have active input into our lives. We like to participate in decisions about our lives, and more often than not, we have that participation honored. Most folks on the spectrum have very little control over their lives. Most folks are told when to get up, what to wear, when to do this, who to interact with, what to eat, when to eat, how long to eat. Like, it's a very, very regimented life with very little control imposed by yourself, which is not a hallmark of a good life.
And the third part is competence. We all strive to be competent at something. We want to be good at something. It doesn't necessarily matter what it is, we just like to be good at something. And folks on the spectrum rarely get a chance to be competent.
When they're in school, every time they master a new educational goal, we give them a new goal. They go to the next step as opposed to getting to practice the old step. And then when they go out into the adult world, if they have a program, they work on sort of nonsensical tasks that they never really get all that good at.
We need to focus on those three components but with reference to how we define adulthood in America. And in America, we define adulthood by A) what we do for a living. It's the first question you ask somebody. Next is, "Where do you live?" "Oh, I live in Chelsea, or I live in Boston or I live in Podunk, Iowa." It helps define you.
Next is what you do with your free time, whether you're a golfer or reader or a biker or you do model airplanes or whatever. Third is your public social circle. All of us have multiple public social circles. You can define yourself as a liberal, Methodist, tennis player — and those are all different public social circles.
And then lastly, your private social circle — there's three, four, five, six people who you really care about and who really care about you. Add that choice control and competency parameter to all those sections, and that's the life I'd like to see for my guys. But I'd also like to see that throughout their lifetime.
We tend to sort of think that you graduate out of school. You move to this system and life — that's it. You've plateaued. We're not going anywhere. I look back on my life in my '20s and my '30s and my '40s, and the only constant that I see is realizing just how stupid I was at different times in my life.
In my '20s, when I thought I had all the answers, in my '30s where I thought I had half the answers, and now my '50s I realize I have none of the answers. But, that's because I've grown. That's because I was given the opportunity to continue to grow throughout my lifetime. That's what we need to do if we're really going to focus on providing people with autism with lives of competence, dignity and equality.
That's the sort of life you would like to see for the adolescents who are now your students. What do you fear it's going to be?
My fear, and I don't know who the quote comes from, but my fear is the lives of quiet desperation, of no meaningful activity, no friends, sitting at home — not having anything to look forward to when you get up in the morning. And eventually, being institutionalized — that's my fear.
Me and my staff and other people I work with, we work too damn hard for that to happen. The people who work harder, still, are our students. They're busting every day trying to understand this world around them that they don't understand.
But your students are remarkably privileged in that they've been able to come to this school, which is kind of a gold-standard school and have that paid for under the education obligations. The great majority of American adolescents with autism don't have opportunities like this.
Absolutely. One thing I would emphasize, though, is I there are pockets of excellence throughout the country. There are programs in every state doing very, very good work. And there are some very good adult programs out there, too. Unfortunately, they're just very, very, very few in numbers. When we look at the actual numbers that are coming through the system, it's very much like trying to use a turkey baster to drain a swimming pool. There's great stuff out there. We know a lot more than we've ever known in the past. But it's just not being implemented in any way that makes any real change.
Talking about choice, control and competence, how do you give people with autism those abilities?
I think if I was to sum it up in one sentence, it would be that we professionals need to learn to shut up and listen. Oftentimes we're so gung-ho about what we think we know that we actually ignore what our students, our clients, our friends are telling us. If I'm trying to get someone to work in a particular industry and I have to stand there every time with them and reinforce them for every movement and give them a token for everything they do in order for them to keep doing it, and if I walk away and they stop, I think they're probably telling me they don't like this.
And I need to respect that in that individual. When we're looking at developing leisure skills — leisure skills, I think, are one of the hardest things that we try to teach kids with autism, because they have to function as leisure skills for the kids, not just look like leisure skills.
I call it my mother's rule. My mother, the great non-behavior analyst, my mother who I love to death — never was a great cook. So, she had what was called the five times rule. Whenever she tried something new, which usually involved a can of cream of mushroom soup, you had to try it five times, and if you still didn't like it, you could go get cereal, which at the time was like Kix or corn flakes. It wasn't like today.
With leisure skills, I think it's sort of the same way. Like, if we try it five times with you and you don't like it, if you haven't shown some progress, probably not going to be a leisure skill. It's probably not going to be something you wake up in the morning and go, "Damn, I want to go bowling today." They'll do it, but it's not going to work, so we have to keep trying stuff.
One of the things that we've been talking about at the program is starting with kids as young as 12 to at least think towards the future to where we're going. It gives us a lot of room to make mistakes, as long as we fix those mistakes quickly. So we can try something. We can say, "You know what, I think he might like this. Let's try it."
Because typical kids make those mistakes for themselves.
Absolutely. And our guys just don't have that opportunity. So we need to give them the opportunity, and then we need to listen to what they tell us. And if we do that, I really think the sky's the limit in terms of what people can accomplish. You put the right person in the right environment with the right supports…
It must be extraordinarily difficult to find out what people with autism like since articulation is so difficult for them.
It's absolutely difficult. But at the same time, that's the joy of it. My job description is improve somebody's life. I think that's kind of a cool gig. So I get to go home every day and say, "Did I improve anybody's life?" And I can only do that by giving kids these opportunities and trying stuff and listening and occasionally failing.
I'll try stuff and then it fails, but we'll try something new. I'm not afraid try new stuff. But it's all about giving people a life.
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