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Support and Resources for Later Life with Autism Spectrum Disorder

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Support and Resources for Later Life with Autism Spectrum Disorder

Apr 27, 2016
Autism effects people their entire lives. Yet most research about the autism spectrum focuses on childhood and adolescence then goes straight to geriatrics. But what about autism in adulthood? What resources are available to aging parents of people with autism and the adults with autism? Scott Wright, researcher at University of Utah and editor of the book "Autism Spectrum Disorder in Mid and Later Life," looks into the research and what can be done to ensure the aging autism population can lead happy fulfilling lives.

Episode Transcript

Interviewer: Going to learn more about a brand new book called Autism Spectrum Disorder in Mid and Later Life. That's next on The Scope.

Announcer: Health tips, medical news, research and more for a happier, healthier life. From University of Utah Health Sciences, this is The Scope.

Interviewer: Scott Wright is a researcher at University of Utah and also the editor of the book Autism Spectrum Disorder in Mid and Later Life. Tell me about this book. Why did you decide the world needed this book?

Scott: I do think the world needs this book. My interest into autism issues with the aging intersect, the gerontological connection, came about when I was involved in a research project where I saw grandparents, grandparents as being very involved in the care of children, young adults on the autism spectrum, and realized that okay, here you go. Here's the grandparents yet again showing the kind of support and that safety net to help out their grandchildren. But think about this, their grandchild that has special needs and the grandparents were there providing that care.
Well, from there, I realized that grandparent issues are also aging parent issues. Are there aging parents that are still supporting their adult child with disabilities, in this case perhaps with autism spectrum disorder, autism conditions? And yes, there are. In my discovery of the literature and the research, aging parents very much have this very, in a way, very concerned futuristic look about what is going to happen to their son or daughter who's an adult in their 30s, 40s, and 50s. What's going to happen to them when the aging parents, when they die?
And then from there I came to appreciate that the amount of research, literature looking at this topic, it simply wasn't there. There was just this huge gap in looking at autism issues and aging, which literally stopped at adolescence and then picked up again a little bit in the geriatric years but nothing in between.

Interviewer: So kind of like a dumbbell. There's a lot young, a lot old, but mid to later life, nothing.

Scott: That's a great image to think about, very much like this barbell effect where you have a lot of interest, activity, services, programs, just general thinking that autism is a childhood issue and then it just goes away. Or that we're not paying attention to it once individuals transition, the transition years to adulthood. What happens then? Because autism is a life-long condition. What happens after adolescence? This is what this book does.

Interviewer: Is this book accessible for the lay public? I'm noticing a lot of references and I don't even know what these are called, oh, they're called references. At the end of the chapter it looks like an academic kind of book.

Scott: The original intent of this book was to create a publication of the latest evidence-based research. And indeed it has, I would say a good part of the book is academic and written for other professionals. But really this book is for a variety of different audiences - grandparents, aging parents, adults on the autism spectrum that are aging themselves. So this book has this great feel of being accessible to so many different groups and I think it's been accomplished. That goal has been accomplished with the final outcome.

Interviewer: It sounds like, so when you first brought up what interested you in it, I guess I just automatically assumed that parents with, somebody with a child that has autism are probably just going to be essentially parents their whole life. And that's what you're seeing is actually going on, but maybe that's not the best way.

Scott: That is a great question because for many parents, their son or daughter will reach adulthood and the programs and services that were there in the K-12 years, which are federally mandated, suddenly it appears that once their son or daughter reaches adulthood there is such a lack and a huge gap in services and programs. Parents become, in effect, the support system.
When we look at individuals with autism, role models like Temple Grandin, she has some very interesting advice. And what she would say is a key issue during the transition years to adulthood, work. Work. Employment is such a big factor for a hallmark indicator of adulthood.
But it would be my guess that the listening audience may not even know this statistic: 90% of individuals on the autism spectrum, they have the highest unemployment rate of any disability group. We're talking about 85-95% of this population with autism are unemployed. This is unacceptable in our society. Why is this happening? Work is a hallmark for adulthood and yet unemployment is a huge challenge. We need to address this.

Interviewer: So what were some of the things that you found out in the process of editing this book? And I will say that you did tell me that there were a lot of contributors to it. International contributors, not only people with MDs and PhDs but people on the spectrum as well. So what did you learn? What are some of the things that can be done in mid and later life that isn't being done?

Scott: What to glean from this book, with you're right, international authors, individuals, adults on the spectrum who are contributing the chapters, I think the two big themes that emerge out of the book that are important issues actually relate to the general population, to you or me and to everybody. That is when you think about to love and to work are two key factors to well-being and quality of life. For individuals on the autism spectrum, to work, which we would think of as almost like an automatic factor of being involved in our society, is a huge challenge for all sorts of different reasons.
And then to love would be the issue of establishing relationships. More importantly, social networks and I think of this term social capital in terms of to love and having connections and social support. And then work to have a productive contribution to society and in return the rewards of that, this is what needs to be worked on, addressed for autism issues into adulthood and then into later life.

Interviewer: And what are they answers? Are they within the covers of this?

Scott: I think that the authors, yes. The authors that have been collected here, brought together in this book, they've done a great job with indicating what the answers are. I'm proud to say that, again, the researchers that are involved in this are talking about the data that they have collected but more importantly are the contributors who are adults on the autism spectrum, they have shared their story. And their story says we have learned a lot, we'd like to share it with everybody else, the right steps to live a fulfilling life.

Interviewer: And it sounds like it might offer some new perspective and new thoughts, too. Just even the perspective of, boy, a job is really important. Inclusion is really important but yet also is autonomy. That's important as well.

Scott: It is, so think about . . .

Interviewer: And these are all relatively new concepts to the thinking of the condition, is that correct?

Scott: It would be because, again, think about how we view autism, it used to be primarily a childhood/adolescent context. Now the context is when you're an adult on the autism spectrum the issue of community inclusion is huge. How can I sustain an independent living circumstance? Which to maybe many other people that's going to be an automatic transition, for individuals on the spectrum it's fraught with a variety of different challenges. So community inclusion is big.
And then the employment issue, again, I can't think of one issue that would help so much in the lives of individuals on the autism spectrum and their families and our communities and our society would be meaningful work, and the opportunity to engage in and interact with meaningful work is one of the key issues in the landscape of autism today.

Interviewer: So it sounds like it's really kind of perhaps a guide into some uncharted waters.

Scott: I think that's really the best way to describe that. This book is pioneering, I think, in opening up new understanding of autism and aging issues.

Interviewer: What would you hope if a parent or a grandparent that had somebody with autism in their life purchased it? What would hope that they would be able to do after they have read it?

Scott: I think the key here is to realize that services, programs are becoming available in our society and in our communities are rapidly increasing. That's the good news. And that for the individuals who would read this book is that they should not, please, feel like that they're all alone, isolated in this particular context. That there is an increasing amount of services and programs in our communities. The key is to build the bridge between the individuals who need it and the individuals who can provide it. That's going to be the key factor.

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