TOPICS > Health

Autism Now: Bridget Taylor Extended Interview

April 22, 2011 at 12:00 AM EST

TRANSCRIPT

ROBERT MACNEIL: Describe your program as it is and what you hope it will be, your adult program.

BRIDGET TAYLOR:  Well we created a program for young adults to learn community based vocational skills so that they can be employed. And so our goal is really to have 100 percent of our young adults earning a paycheck and contributing to society by working and continuing to learn skills that are essential for independent living and independent functioning. So if you think about it most of us learn a great deal of information after graduation from high school when we go on to college.

And so that shouldn’t be any different for individuals with autism. And what we really hope is that their trajectory of learning and acquiring skills continue. So just because they turn 21 doesn’t mean they stop learning. And so our goal is really to create a learning environment where they can continue to increase their language goals, their social goals, their community independent goals and of course to gain competitive employment at some point.

ROBERT MACNEIL: How many young adults do you have in the program now?

BRIDGET TAYLOR: We currently have eight adults in the program and we will be graduating three in July into the adult program from the school program. So the program is growing, it’s small but it’s growing, as our educational students graduate that program will continue to grow.

ROBERT MACNEIL: And you’re planning to build a facility for that program on the same campus?

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BRIDGET TAYLOR:  That’s correct. We purchased a property right next door with the hope to build a learning center, really a state of the art learning center. There are so few models for adult learning for individuals with autism and our goal really is to create a learning center to serve as a model really for other programs who are interested in creating a similar learning model.

And so we’d like to really create a center where individuals with autism as young adults are learning and continuing to acquire skills. And we’re currently campaigning of course to raise the money to build the facility but we’ve purchased the property.

ROBERT MACNEIL: You’re campaigning in a very different environment economically than you campaigned 20 years ago when you first opened this learning center. How do you make the case now in an economy when millions of able bodied and fully able people can’t find employment, how would you make the case to people in the New Jersey state government who are generally considered generous to autism so far about the young adults, what would you say to them?

BRIDGET TAYLOR:  Well, we can’t give up. We can’t give up on hundreds and hundreds of individuals who’ve worked incredibly hard their entire lives and send them home. We just can’t give up and we have to create a future for them that’s meaningful — that gives them quality of life, that gives their families quality of life and — it’s just, to me in many ways, would be criminal to stop the learning trajectory for these individuals because, you know, we’ve as taxpayers we’ve spent an inordinate amount of money educating them and bringing them to a level of functioning where they can be, as you saw with Zach, very independent in many ways.

But he will continue to require extraordinary services as he grows and becomes an adult. And to throw it all away at this point in time because he turned 21 is really — would be very criminal and — he deserves a chance to become as independent as possible as any of us would and the chances that we have in our life he deserves the same chance.

ROBERT MACNEIL:  Is that case being heard by public officials now do you think?

BRIDGET TAYLOR: Not as loudly as it should be and there certainly is a growing trend now to bring adult services to the forefront — to politicians and to — to, you know, talking about the need for funding for adult services and there is a whole body of families now who grew up on very good services for their– children with autism and now they’re taking the fight to the next level.

And so their parents are going be at the forefront of this movement, advocating for services for their adult children with autism. But the — the cry needs to be louder and the demand needs to be greater and politicians really need to know that there are — thousands of children coming up — and — and entering adulthood who will need — care and need — need the services in order for them to continue to be as independent and as functional as possible.

ROBERT MACNEIL: Do you consider Zach a success story through your learning center?

BRIDGET TAYLOR: Absolutely. Zach is a tremendous success story. And really all our students are success stories. There’s not one student that I would ever say is not a success story. Zach is certainly an extraordinary young man who started our program with very, very few skills; unable to talk, unable to communicate and unable to attend for  periods of time so that he could learn information. And over the years he’s acquired tremendous amounts of skill and able to communicate.

But Zach is still very challenged. Zach still has lots of issues with understanding language, with communicating, he can’t be left for long periods of time by himself. So although he’s made tremendous gains and he is  certainly one of our, you know, as they all are success stories, Zach continues to require services.

ROBERT MACNEIL: Your center, through your efforts and others is — would be considered very privileged in a way in the — one on one teacher/student ratio you’re able to employ. That is still very rare in services for children with autism. How do you — do you ever think that your standard of service could become the general standard in the country. It’s so expensive.

BRIDGET TAYLOR:  It’s very expensive. But its money well spent. And its money that is preventing individuals like Zach from being placed in institutions and I would hope that a model such as Alpine could certainly occur in many, many places. But certainly funding becomes an issue. And it does cost a lot of money to do the kind of work that we do here. But I would argue that it’s certainly money well spent.

I think more and more public schools are seeing value of creating learning centers and learning environments similar to Alpine. And I’ve seen some very good public school programs who are able to make that happen and make that work. So you have to allocate money creatively but I do believe it can be done.

ROBERT MACNEIL:  What is the cost/ benefit ratio you’re asked by somebody in the New Jersey state legislature; costs nearly $100,000 a year to educate a child here– and you see the amount of progress they make, which you call a success, but necessarily still leaves a lot of individuals lacking in some skills. So looking at a hard cold view from some elected official who has 100 calls on his generosity or his political savvy, what do you say?

BRIDGET TAYLOR: The money is well spent and it is worth it. And while it might cost $86,000 a year for a student to go here it would cost over $300,000 per year for them to be placed in an institution. And an institutional environment is not gonna teach the kind of skills that we’re teaching children here.

And it is a hard sell, but it is a worthwhile sell. And when people see the kind of progress that individuals with autism can make  there’s no price to put on that kind of progress. And it becomes invaluable.

ROBERT MACNEIL:  Your adult center, would individuals like Zach move into that for awhile or study there for awhile or be taught there for awhile and then that would be a limited time and then they would move on to as much independent life as they can handle? 

BRIDGET TAYLOR: The goal would be that we would create a learning environment where we would teach them the skills necessary to be as independent as possible. Some of those individuals might be with us for a long time. I see us eventually creating multiple centers that are able to serve individuals as they age through the life span.

The first step and the next step is post-graduation. And then we look down the road to the future. I would hope that our young adults could gain the skills necessary to live somewhat independently, to work in the community and require less and less assistance over time.

ROBERT MACNEIL: Your young adults at present — where do they live?

BRIDGET TAYLOR: Most of them live at home. One lives in a group home. But there are not a lot of residential options for young adults with autism in the state of New Jersey. There’s a very, very, very long waiting list. So families have their young adult children at home with them and as they’re aging their young adult children are aging and so they’re home with them.

ROBERT MACNEIL:  So the way you see the equation is either the public helps these  children with autism as they become adults now or they’re going to end up down the line paying for them in residential institutions.

BRIDGET TAYLOR: That the cost long term certainly will be greater and there has to be some mobilization around what are we going to do with them? What, you know, what will happen to them because there is– you know, some people have used the term tsunami, I don’t particularly love that term, but it’s a term that indicates that there is a wave of individuals with autism coming up, that we’re really gonna need to  look very hard at how we are allocating funding in order to take care of them.

And also to create creative ways to teach them without as much funding as you had  in the education programs. And so we have to get creative about how to match kids in groups and to create learning environments where they can continue to learn and have the supervision that they require, but again with less funding. And so there has to be a lot of creativity around  this process.

ROBERT MACNEIL:  Do you consider this in terms of public policy as a kind of continuation of the acts so far that have funded education for people with disabilities. That  the spirit that lay behind those acts of compassion for people with disabilities needs to be extended beyond their teenage years.

BRIDGET TAYLOR:  Absolutely, we have to think of this as people with disabilities need the protection and they need the education. Certainly the Americans with Disabilities Act adds protection. The laws regarding education, a free appropriate public education whether you’re disabled or not protects children in the education years for funding. That mandate doesn’t exist past 21, and that mandate needs to continue. And so I see it as a trajectory in terms of a legal process in mandating legislation for that.

ROBERT MACNEIL:  If that didn’t happen, as it hasn’t happened yet, what aid would a young person like Zach get from the state on becoming an adult?

BRIDGET TAYLOR:  What would he get now, very little, very little. And as it exists today, what’s available to– you know, what’s interesting is that I think the current belief for adults with autism and probably for most folks with disabilities is that once they graduate high school they enter what’s called maintenance. So all we’re doing is maintaining and keeping them safe and not teaching any more skills.

And so public officials, if that’s their belief, the types of funding available to staff and to take care of individuals with that mindset is going to be somebody who doesn’t have a level of expertise — and isn’t paid very well. And so the care is impacted by the money available to pay a person who then doesn’t have the level of expertise.

And so currently there is not a mechanism to ensure that someone like Zach will have a highly qualified person working with him, a well-paid person who deserves to be paid for the kind of work that they’re doing with somebody like Zach. So right now very little exists.

ROBERT MACNEIL:  Is there anything about Zach’s achievements in the years you’ve been looking after him that disappoints you? Hopes…that have not been realized?

BRIDGET TAYLOR: You know, whenever we work with a child we never know when we first start working with him where they will end up. And so, you start out with a certain level of healthy denial and that  you teach as much as you can to see how much you get. And every child’s different and every child has strengths and weaknesses.

And certainly with someone like Zach we put a lot of work into his language and a lot of work into his understanding of language. And I think I can say that for all the folks who’ve worked with him over the years the hope was is that his language skills would take off and his ability to really communicate socially. But despite those challenges, he is quite remarkable in his ability to communicate what he likes and what he doesn’t like and what he likes to do and what he doesn’t like to do, and who he likes to be around and who he doesn’t like to be around. So you know, as practitioners who work  with these children we don’t hang on to what we didn’t get. We look forward to the future and what’s available next.

ROBERT MACNEIL:  And he’s apparently very competent at his job.

BRIDGET TAYLOR: He’s very competent in his job and Zach applies himself very well. He is an extremely hard worker. He really in many ways is a model to all of us because he works hard and he figures things out and he doesn’t stop until he figures it out. It’s one thing that’s very fascinating about him is he’s very visually interested in things and so when he’s presented with a task he spends an inordinate amount of time looking at things and trying to figure things out; because he likes to be independent, he doesn’t want someone to tell him what to do. And so he spends a lot of time really figuring out how to do things.

ROBERT MACNEIL: I gather there’s a question over whether he can keep that job. Can you describe that situation?

BRIDGET TAYLOR:  Well we would want him to keep that job. Long-term, every job is tenuous. I would imagine that as  everybody’s affected by the economy,  Zach’s job is also tenuous like everybody else’s job in this kind of economy. So we’re hopeful that he can continue but  you never know.

ROBERT MACNEIL: But  he needs a supervising person with him to do that job. And that supervising person at present is funded by…the education…

BRIDGET TAYLOR:  Yeah, so that’s a really important question.

ROBERT MACNEIL:  So that person disappears under present funding when Zach is 21.

BRIDGET TAYLOR: That’s correct, so that’s a really good point would is that when Zach graduates he’s got a job but he won’t be able to keep the job because the state will no longer fund somebody to support him in his job. We will try to find funding and we will do what we can and his parents will advocate, but there’s no guarantee that when he turns 21, the day he graduates, that that job will be available to him simply because there is no funding to support what he needs in order to maintain that job.

For me personally I’ve spent 22 years educating and working with these children who are now young adults and I’ve known them since they were three and now they’re 21. And for me, both personally and professionally, we have to finish the story. We can’t stop at 21.

And these relationships that I’ve had and for many of my teachers have been some of the most significant relationships at least personally for me in my life. And the story will not end simply because they turn 21–we owe it to them to continue the story.

ROBERT MACNEIL:  And do you feel you owe it to yourselves in a way because of the emotional investment–

BRIDGET TAYLOR: Absolutely, absolutely. You know, you don’t work with someone for as long as you work with someone like Zach and not have an emotional connection to him, to the family and there’s certainly a sense of personal obligation and professional obligation to continue Zach’s learning and to give him, you know, to help provide for him what he needs.

ROBERT MACNEIL: What replaces the relationship you and your teachers have had with a young person like Zach when they have few other social relationships?

BRIDGET TAYLOR: Well for most of our students and for, certainly someone like Zach, we are his social world. We are his social relationships. And those social relationships shouldn’t end simply because he turns a certain age and those relationships are rich and important to him, certainly important to the folks who’ve worked with him, myself andthey shouldn’t stop simply because he turns 21.

ROBERT MACNEIL:  Because he won’t be able to easily make new relationships.

BRIDGET TAYLOR:  And somebody like Zach it will take many years for him to establish new relationships and the people who’ve been working with him closely over the years know him best, know what he likes are able to help him learn because they know his learning style and that will require a whole new process for folks who if he were to move into some other kind of program. And that would be a lot of wasted time. 

ROBERT MACNEIL:  What is out there for adults with autism at present?

BRIDGET TAYLOR: There are very, very few programs for adults with autism currently. There are not good models. There are a few and certainly some of the programs that help integrate people into the community for work but there are no learning centers that exist. And so we’re creating this learning center to serve as a model and that’s because there’s nothing else out there.

There really is nowhere for our graduates to go that has the same quality of expectation, the same quality of care, the same level of fortitude in terms of maximizing their potential on into adulthood. And so we created a center to continue, really continue the mission that we started when they were three years old now that they’re turning 21.

ROBERT MACNEIL:  So that’s 18 years ago when Zach first came here. And how would you describe him then?

BRIDGET TAYLOR:  When Zach came to Alpine Learning Group 18 years ago, he had very limited language and couldn’t follow directions. If he did, they were very simple directions. He was very difficult to engage socially and, you know, here on the tape, what you see is I’m asking him questions. And he only knows answers to very few questions. And he can’t really attend to our conversational interactions for long periods of time. Here on the tape, he’s just about three years old. And you can see on the tape he’s, you know, unable to ask for things that he wants. He’s unable to use his language functionally. He’s unable to name things and answer simple questions. And so when he first came to us, he really didn’t have a good repertoire of learning skills.

ROBERT MACNEIL: So how did you then go about changing that?

BRIDGET TAYLOR:  Well, we engaged him in a very rigorous program of teaching him step by step how to follow directions, step-by-step how to attend to his teachers, how to answer questions. And all of that instruction took place in a very systematic way with one teacher and Zach working closely for many hours. So it took many, many hours for him to acquire these skills.

ROBERT MACNEIL: Well, you’re asking him questions there. Did you teach him yourself?

BRIDGET TAYLOR: I was very much involved early on in Zach’s education, and you know, this is going back 18 years. You can imagine, I’ve known Zach for a long, long time. I have a long history with him. And so watching him learn has been a wonderful process.

ROBERT MACNEIL: How equipped is he nowadays, do you think?

BRIDGET TAYLOR: Zach has a lot of great skills that he can now use as an adult. He can prepare his own meals. He’s able to take care of his personal hygiene. He’s able to clean and engage in leisure activities. He’s got a lot of really good skill. He’s able to, you know, answer a broader range of questions. But, Zach still needs treatment. Zach still needs an educational program to help him.

ROBERT MACNEIL: Is he somebody who’s going to be able to live relatively independently?

BRIDGET TAYLOR: I’m hopeful that Zach could live in a supervised apartment– perhaps with a roommate, and learn to go to work more independently without as much supervision, and be able to live a quality of life that he wouldn’t have been able to have had he not had this intensive treatment.

ROBERT MACNEIL: Could he could he cope with transportation systems and get to and from working?

BRIDGET TAYLOR: Perhaps, with the right training he could, yes. We’re lucky that we live in the suburbs so, you know, the public transportation is a little bit different here. But I think he could negotiate those skills with the right supports.

ROBERT MACNEIL: Will he always for the rest of his life need somebody watching over him to make sure he doesn’t get into risky situations?

BRIDGET TAYLOR: Yes, Zach will always need somebody watching over him and making sure that he’s safe, and ensuring that he’s using the skills that he’s learned over the last 18 years. So he’ll always need somebody in his life to take care of him.

ROBERT MACNEIL:  Is there a — a prospect that somebody with what Zach has achieved so far, that he can go on achieving more in terms of, for instance, language?

BRIDGET TAYLOR: Absolutely. We learn through our lifespan. We learn, all of us, I mean — people acquire new languages as adults. So why should that be any different for Zach? And so the belief is that he could certainly continue to acquire better and more enriched language skills.

ROBERT MACNEIL:  How do you feel, Bridget, as you in effect push him out to the real world?

BRIDGET TAYLOR:  Well, I’m very proud of Zach. But, I’m also worried that he will not have the future that we hoped for because the funding doesn’t exist. And so while I’m very proud of his accomplishments, I also worry for him and I worry for all our students because a lot of work has been accomplished by Zach. And nobody’s really worked harder than him. And so I worry for him for the future. But with the right supports I’m also very, very hopeful.

ROBERT MACNEIL: Will he need teaching all his life? Or can he go through a few more years of sort of post high school or post secondary school education and then be independent enough to live independently — will he be able to stop being taught, I guess, is the–

BRIDGET TAYLOR:  Well, do any of us? You know, we acquire skills forever and I would hope that Zach continues to require skills forever and acquire skills forever. And I hope that the services are available to him that allow him to continue to learn as all of us do throughout our life. Could he maintain a level of existence now with the skills that he’s acquired? Perhaps. There’s also a risk that he will lose a lot of skills if he just leaves our program and does not enter a quality program upon graduation.

ROBERT MACNEIL: Does it prevent someone like Zach from reaching his full potential if he continues, as many of them do, to live at home as long as the parents are alive, does that somehow curtail his development as a person?

BRIDGET TAYLOR: It’s a good question. Many families don’t want their adult children with autism to leave home, for very good reasons, for worry and fear.

ROBERT MACNEIL:  Because they know their vulnerabilities.

BRIDGET TAYLOR:  Their vulnerabilities. But you know, Zach deserves to live away from home like all of us learn to live away from home, and to learn to live around friends and in a community where he’s fully integrated. And so, yes, living home with his mom and dad until they’re an elderly, and he’s in his ’40s is not doing Zach a service. And he really deserves that opportunity like all of us have had.

ROBERT MACNEIL: Thank you.