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In this issue...
Minnesota Life College, Where Young Adults with Learning Differences Can Thrive
Socially Skilled or Socially Adaptive: There is a Difference
In the End, It's All About Personhood
News You Can Use: Current Events & Trends

We Want to Hear From You!

If you would like to submit an article or a letter to the editor to be considered for publication in the ARI Adults with ASD E-Bulletin, please email us for submission guidelines at AdultsEBulletin@autism.com.

 

Your feedback and ideas mean a lot to us, as we endeavor to provide you with a balanced resource on the latest events, news and research that concern adults with autism spectrum conditions and those who

support them.



The ARI Adults with ASD E-Bulletin Editorial Staff

Val profile
Valerie Paradiz, PhD

Editor-in-Chief

ARI Director of Special Projects

 

Erin Profile

Erin Kenney, PhD, MPH

Managing Editor

ARI Special Projects Support

 

Janine
Janine Collins, MTS, MSW

Contributing Editor

Research Associate, Center for Community Inclusion and Disability Studies, University of Maine

 


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Adults with ASD ARI E-Bulletin
November 15, 2010

 

stevemark
Steve Edelson and Mark Rimland

From the Director:

To honor the memory of Dr. Bernard Rimland, the Autism Research Institute (ARI) is premiering a new quarterly e-newsletter titled the Adults with ASD E-Bulletin. This first issue of the Bulletin marks an auspicious moment because Dr. Rimland would have been 82 years old on this very day.


In the late 1950s, Dr. Rimland and his wife learned that their child, Mark, had autism. Dr. Rimland then spent several years learning as much as possible about his son's condition. In 1964, he published a seminal book, Infantile Autism: Its Syndrome and Implications for a Neural Theory of Behavior, that redirected the field's focus from placing blame on parents and treating the entire family with psychotherapy to searching for biological causes and developing science-based treatments. Following this, Dr. Rimland dedicated the rest of his life to improve the quality of life for people on the autism spectrum and their families.


Mark Rimland is now 53-years old, and overall he is doing well. Mark is an accomplished artist, he attends a day program in San Diego for developmentally disabled adults, and he enjoys life. Similar to the way Mark inspired his father, he continues to inspire us at ARI. You could say he is the inspiration for the launch of this E-Bulletin, not to mention a series of new ARI sponsored initiatives devoted to adult concerns that you can read more about in the recent issue of our monthly e-newsletter, which was published last week.

(See: http://autism.com/pro_enewsletter.asp).


I know that Dr. Rimland would have been delighted with the publication of the Adults with ASD E-Bulletin. I hope that you will be too.


Steve Edelson, Ph.D.
Director

From the Editor:


Welcome to the new Adults with ASD E-Bulletin! I am thrilled that ARI has initiated this quarterly newsletter devoted entirely to topics related to adults with autism spectrum conditions. While for years many in our community (autistic and neurotypical alike) have said the concerns of adults generally tend to take a back seat to media, research and information about children with ASD, few steps have been made to rectify this imbalance. With this publication, ARI, my co-editors and I hope to play at a least a small role in placing adults with autism, and the families and professionals who support them, more squarely on the map of our awareness about ASD.


In this first issue you'll find three feature stories that represent a sketch of our goal: to provide multiple perspectives on adult life, including transition, the young adult years, mid-life and aging. In doing so, we also wish to build bridges across the generations, professions and affiliations within our greater autism community.


Contributors to the E-Bulletin are professionals, family members and people with autism spectrum conditions. If you're a parent of a young person with autism, the stories in the E-Bulletin will provide you with insight and information for the future. If you're a professional or support person working in the autism fields, we want to connect you with a national network of people who, like you, are developing and refining programs and identifying the latest advocacy strategies, tools and trends in education, employment and community life. If you're an adult on the spectrum, the E-Bulletin is your resource for learning about new initiatives, sharing your stories, knowledge and expertise with families and professionals. Most importantly it is your vehicle for effecting change within our community by providing precious information and insight about adult life that only you can share.


Highlights in this issue include an astute opinion piece by the E-Bulletin's Contributing Editor, Janine Collins, a disability researcher at the University of Maine and a person on the spectrum, that asks us to consider alternatives to traditional approaches to "teaching social skills." Krysti DeZonia, co-founder of TERI, Inc., an agency that provides a variety of programs to adults with autism and other disabilities in Oceanside, California, offers a thought-provoking editorial about how a person with autism is perceived and treated by those working in the adult services environment. For me, Krysti's article begs the question: should we be providing more specialized programming for adults with ASD, have we missed this boat entirely, or not? Finally, the E-Bulletin's Managing Editor, Erin Kenney, special educational consultant and parent of a young adult on the autism spectrum, gives us a wonderful story about the Minnesota Life College, a college and employment readiness program located in Minneapolis/St. Paul. Finally, in each issue, we will also feature a special section called "News You Can Use." These are small news summaries on important developments and events in the adult community.


In closing, as Editor-In-Chief of the E-Bulletin, I want to thank ARI for providing this long-needed resource to families, professionals and individuals with ASD, and for giving me an opportunity to edit it. I wear many hats in my daily life as a person diagnosed with Asperger's syndrome, as a parent of a young adult with ASD, and as a writer, consultant and program developer for schools, organizations and agencies. My dream for the E-Bulletin is to provide us all with a forum to share perspectives and build new bridges of understanding, so that we can work more powerfully together when it comes to adults with autism and their concerns.

 

Valerie Paradiz, Ph.D.

Editor

Minnesota Life College-Where Young Adults with Learning Differences Can Thrive
Erin Kenney, Ph.D., MPH

What's the best thing about Minnesota Life College (MLC)?  Ask Jason and Paige, two students who are residents of the MLC program: "The people I've met....the friends I have gained....the relationships with friends and staff." And what's the most challenging thing about MLC? Their reply: "The occasional drama that happens on campus" and "having to act like an adult when you don't feel like being one." Neurotypical young adults have very similar answers to the same questions, and while not all students are destined for the traditional community college or university experience, those who need something different can still have a college experience that prepares them for the real world. Minnesota Life College is that kind of place.


Founded in 1996, MLC is located in Richfield, Minnesota, a suburb of Minneapolis and St. Paul. Yes, winter clothes are required. It rains and snows there, with an average temperature in January of 15 degrees! But it's nice and warm in the summer, and the spring and fall are beautiful. MLC is small and specialized, with 28 students in its undergraduate and 35 in its graduate program. Students don't get a bachelor's degree by attending (unless they choose to take courses at any of the nearby post-secondary schools). Instead, they get a post-secondary education in living life.snow bus


In my telephone interviews with them, the staff at MLC exuded enthusiasm and passion for the school. Rich Youngberg, Community Life Coordinator, thinks of the students as his family and says there is never a moment when he doesn't want to go to work. Rich has a fun job and must wear many hats, including organizing the spring and summer travel programs and coordinating the college's famous Mandatory Fun, a weekly activities schedule that keeps students active and invested in their community.


Read more


Printable pdf

Socially Skilled or Socially Adaptive
There is a Difference
Janine Collins, MTS, MSW

What do you think of when you hear the phrase "social skills?" Too often social skills are considered and taught as a discrete set of rules of behavior that one can master and then apply across a variety of contexts. While this may seem to be the case to those who acquire social capacity incidentally as part of growing up, the development of social skills is far from the acquisition of a set of discrete skills. Social encounters are dynamic occurrences that require spontaneity, flexibility, adaptation and the ability to recognize when certain learned skills actually do not apply.


It is unrealistic to believe that one can learn an alternative rule for every variation of a social experience. A discrete set of rules-no matter how well mastered-simply cannot account for all of the variations that social encounters require. Nor can one memorize how to string together a set of social graces for every possible variation.


Moreover, despite the recognized difficulties with initiation and generalization that individuals with ASD tend to face, social skills programs for individuals on the spectrum tend to teach social skills in isolated contexts with little attention to developing the individual's ability to apply those skills across a variety of settings and situations. Likewise, methods of teaching proceed as if being able to state, identify a statement describing, or select a picture depicting when and where to use a skill is the same as being able to actually initiate the skill when needed. This allows for no real way to build one's capacity to deal with social nuance and novelty. It also allows for no real way to expand a skill to new contexts as the individual matures. It seems to be assumed that the application and adaptation will simply happen so long as the skill has been learned.

 

Read more 

 

Printable pdf

In the End, It's All About Personhood
Krysti DeZonia, Ph.D.

When our children are in school, we fight for particular therapies or goals on their IEPs. We spend every dime we have on anything that we think will help. We are highly invested in making sure they have all of the research-based interventions that are touted to make a significant, positive change in their lives. This is a good thing. However, in my experience, the lives of middle-aged and senior adults with severe autism undergo big changes after the school and young adult years. My colleagues and I founded our agency, the Training Education and Research Institute (TERI), 30 years ago, which has given us direct experience with aging adults with autism. In my work, I also conduct research on transition, adulthood and family needs related to adults with severe autism and other developmental disabilities. Additionally, my 26 year-old son has profound and multiple disabilities, and so I have also observed, first hand, how life changes after public school services.

These experiences have taught me some things about "what matters" in adulthood that I would like to share:

Most of the people who work with your child as an adult probably won't even know the formal diagnosis. Even if they do, it will make almost no difference in the opportunities or choices an adult with a disability is offered. Staff will take the adult at face value, not based on what is written in reports or on what happened in school.

News You Can Use: Current Events & Trends


Flame the Band

Keep an eye out in your community for Flame, an international touring cover band that first formed in 2003. What makes Flame unique? It's the only touring band in the world in which each member has a disability. The ten-member ensemble includes vocalists (one of whom is autistic), percussionists, a drummer, a guitarist and a bassist.


Managed by Lexington Center, a disability services agency located in Gloversville, New York, the group started out as a recreation program that began to offer local concerts. At the drummer's suggestion, the band named itself "Flame" after the Special Olympics' torch. According to their website, the band's performance schedule has since blossomed to an average of 90 paid performances per year across the globe. And, a CD of original music is soon to be released!


For more information about Flame or to book them in your community, visit their web site at www.flametheband.com  

Minnesota Life College Hosts Event in San Francisco
Minnesota Life College (see feature article) sponsors the John Lighty Lecture Series, which highlights current topics on learning differences. The goal of the series is to inform and educate families of young adults ages 16-26 and education professionals who serve that population. On January 20, 2011, education researcher, Dr. Brenda Smith Myles, along with MLC staff, will offer a discussion in the San Francisco area on "Social Skills and Self Regulation for Young Adults on the Spectrum." Dr

. Myles will present on social competence and self-regulation and Minnesota Life College will highlight its post-secondary program with particular focus on how social learning and building self-regulation skills are incorporated into the daily lives of MLC students. The evening has limited seating and reservations are required. For more information, visit www.MinnesotaLifeCollege.org

ARI Grant Supports Retreat for Adults with ASD
The AUTASTICS, one of the first and most longstanding peer support and self-advocacy groups for adults with autism in the country, will host its annual retreat this month near the Bryce and Zion National Canyon Monuments in Panguitch, Utah. Adam Pollack, co-founder of the AUTASTICS, which is based in the Bay Area of California, has been working together with Valerie Paradiz, Director of Special Projects at ARI, to develop a series of facilitated workshops that will explore ways that ARI-and the autism community at large-can improve support to adults with ASD and ensure that their voices and points of view are not only heard but collaboratively addressed. ARI has awarded the AUTASTICS' retreat a grant to help defray travel and lodging costs for participants. Look for a story about the results of the retreat workshops in our next issue in February 2011!

$1.87 Million Grant Assists in Creation of New National Autism Clearinghouse

The Arc, in collaboration with the Autistic Self Advocacy Network and Self Advocates Becoming Empowered, will establish Autism NOW: The National Autism Resource and Information Center. Autism NOW will serve as a national resource center specifically designed to assist those with autism and other developmental disabilities by connecting individuals with services and resources in their own communities. Not only will self-advocates participate in the development and operation of the new Center, a primary goal will be to connect individuals with opportunities for self-determination and community inclusion. The grant was awarded by the Department of Health and Human Services.

Call for Submissions - Who Will Care for My Child When I Am Gone?
"Who will care for my child when I'm gone?" This is perhaps the greatest concern for parents of children on the spectrum. Have you solved this important issue in your family or for families you support professionally? Have you found or developed strategies and information that can help ease the way for others who are still grappling with these questions? If so, please submit a chapter for a new book that ARI will publish. Send submissions or questions to co-editors for the book, Valerie Paradiz, PhD (val@valerieparadiz.com) and Jane Johnson (jane@autism.com), before January 1, 2011. (All proceeds will benefit ARI.)

Young Adults Can Soon Remain on Parents' Health Insurance

Beginning January 2011, federal health reform law will require many private insurers to cover children on their parents' health insurance plans until they are 26 years old. This may open doors to families who carry private insurance, since the cutoff date for coverage for children has typically been age 21. (In some states, additional legislation may require insurers to cover beyond age 26.) This health care reform legislation, passed under the Obama administration, has provided families with another option, in addition to Medicaid. For an information sheet published by the federal government (pdf download), click here:

http://www.whitehouse.gov/files/documents/health_reform_for_young_adults.pdf 

UCSD Seeks Study Participants-Autism in the Second Half of the Life Span

Almost nothing is known about the effects of middle and late-life aging in autism spectrum disorder (ASD). An understanding of cognitive and functional aging in adults with autism is vital in order to predict the long-term impact on individuals, their families and on health support systems. The primary aims of the UC San Diego project are to:


· Determine how cognitive and motor skills change with aging in adults with ASD
· Describe current living situations, support needs, and available support systems for adults with ASD
· Identify possible situations or activities (e.g. jobs, organized social activities, exercise) that may promote healthier, happier aging with ASD


This project will include adults living in the Southern California region with established or suspected diagnoses of Autistic Disorder or Asperger's Disorder aged 30 to 70. Participants may be at any cognitive or language ability. Though interested parties may not have formal diagnoses of autism, an evaluation to determine diagnosis will be administered at no cost by a trained psychologist.


For additional information, please contact:
Dr. Ruth Carper, Ph.D., rcarper@ucsd.edu Asst. Research Scientist, UC San Diego
Dr. Marissa Westerfield, Ph.D., mwesterfield@ucsd.edu  Asst. Project Scientist, UC San Diego

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