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ARI Adults with ASD eBulletin

February 21, 2012 




From the Editor:

 Dear Friends,

Welcome to the February 2012 edition of the ARI Adults with ASD eBulletin! Our focus this quarter is on the topic of residential and daily living for adults and young adults with autism spectrum conditions. Together, our contributors offer expert and first-hand views into the complexities and options individuals with autism and their families are presented with when embarking on the journey of indentifying, funding and maintaining a home that includes the right supports.

Our opening story comes from Ralph Savarese, father of DJ Savarese, who shares with us DJ's preparations for a particular kind of transition, transition to college and campus life. As you'll see, this family story is very unique: DJ will be the first nonspeaking person with autism to live in the dorms at Oberlin College. Following this, we have an article from Laurie Raymond, LCSW, describing an innovative residential program for young adults, the AIM Model, located in Portland, Maine. Finally, Karen Kaye-Beall, Executive Director of the Center for Autism Support and Training, offers families, professionals and individuals with autism a well-researched and useful ten-step checklist for futures planning specific to residential and daily living options.

As you will read, one truth rings clearly throughout all of the stories below: when it comes to securing a supportive, happy, safe and stabile home with and for a person with autism, we cannot separate the home from the services. My co-editors and I want to thank for joining us again! We hope you find the information useful and insightful, and we welcome your feedback and comments!

Valerie Paradiz, PhD

On to College!
by Ralph and DJ Savarese

My son, DJ, leaves for Ohio in a few weeks. He was admitted to Oberlin College, a highly selective institution, last spring and decided to take a gap year to work on a film he has been making with Rob Rooy about his inclusion experience and to practice greater independence. He aspires to be the first nonspeaking person with autism to go away to a residential college and live in the dorms. There may be as few as ten nonspeaking autists, but certainly no more than twenty, in the United States who have earned a college degree, and all of them, so far as we know, have lived off-campus while going to school.  

Although DJ could have attended Grinnell College, where I teach, and lived comfortably at home in Iowa, he chose Oberlin. Aside from simply liking it better than other institutions, he was impressed by Oberlin's record of inclusion: the school accepted the first female and African-American students in the United States. Why not the first nonspeaking person with autism to live in the dorms?


To read the full article, click here


An Innovative Program

for Young Adults with ASD

by Laurie Raymond, LCSW


22-year old Kevin
(right, with BJ) 
living outside his parents' home
for the first time

Across the United States, the diagnosis of Autism Spectrum Disorders (ASD) is on the increase. The state of Maine is no exception to this trend. The Department of Health and Human Services (DHHS) reports that the number of Maine's Medicaid program recipients with autism increased 300% between 2000 and 2006. More current data from May 2011 shows that the state has over 4,100 individuals diagnosed with ASD. The breakdown by age is:



3- 5

6- 12















Adult services in the state of Maine are facing serious challenges in meeting the program and support needs for young people with ASD as they leave school and transition from children's services.


To read the full article, click here.


Ten Steps in Planning for the Future for Your Aging Teen or Adult with Autism

by Karen Kaye-Beall


There is a lot to learn when it comes to life planning for a young adult or adult with autism. It is better, when possible, to tackle some of the planning steps with a group of like-minded parents who can help share the load of researching local and national resources and also help with participation in necessary state-level advocacy efforts. But what if there is no organized group of like-minded parents near you who have aging teens and adults with ASD? Here are ten steps you can take:
  * * * *    NEWS NOTES    * * * * 

AGI Announces New Youth Division, Directed by Sondra Williams

Sondra Williams
AGI Youth Division Director


The Autistic Global Initiative (AGI), a program of ARI that is self-directed and staffed by adults with autism spectrum conditions, is pleased to announce the launch of the AGI Youth Division. Director, Sondra Williams, says the purpose of the new program is "to empower our youth and young adults with autism spectrum disorder, in a multi-disciplinary approach, to obtain employment, including self-employment, and the skills needed to maintain employment." Additionally, the program aims to enhance the experiences of autistic youth in the realm of advocacy, both in self-care and political arenas. This year's youth leader members include: Chloe Rothschild of Toledo, Ohio, Campbell Teague of Cleveland, Tennessee and Jeremy Sicile-Kira of San Diego, California. One important initiative for AGI youth leaders in 2012 will be to research needs and critical life outcomes for those with autism who find themselves in risky social outlets, such as, but not limited too, drug and alcohol related issues. "This is currently a very underserved arena in our populations," says Ms. Williams, emphasizing that the basic structure of the Youth Division follows a peer-to-peer mentoring model she is designing with the goal of creating a national model program. Lastly, "but just as importantly," adds Ms. Williams, "we will focus on the needs of those with more involved autism, in the areas of inclusion, social outlets, communication, daily living skills, sensory adaptations, as well as meaningful play/interest areas to manipulate those skills into a creative means of gainful employment including self-employment." AGI would like to thank the Ohio Center for Autism and Low Incidence (OCALI) for generously providing Sondra Williams with office space in its building in Columbus, Ohio, so that she may have a headquarters for the new program!

Autism Speaks Awards AGI a Targeted Family Services Grant


In January 2012, Autism Speaks awarded the Autistic Global Initiative with a Targeted Family Services grant to develop a Comprehensive Daily Living/Residential Training and Curriculum. The project, which includes content contributions from both AGI staff and other experts in the adult services fields, will be created specifically with direct support providers in mind. The curriculum and training will be designed for implementation in settings wherever adults with autism live, including supported, supervised and semi-independent living situations, group homes (both public and privately funded), assisted living arrangements, farmsteads, and teaching family homes. The immediate objective of the curriculum is to produce content as well as an accompanying training model that effectively answer the urgent need for ASD-specific standards of care, safety and support in the adult services sector. A review of current evidence-based and best practice will inform curriculum design, while two committees, a Community Advisory Committee and an Expert Review Committee, will provide recommendations for improvement and revision toward the final package product. Curriculum developers, led by AGI director, Valerie Paradiz, PhD and AGI research manager, Janine Collins, MTS, MSW, will work as a team to produce material that addresses all cognitive expressions of autism across the lifespan, and that considers youth in transition. 

New Respite Resources

The ARCH National Respite Network and Resource Center has released a new respite resource called the Participant Directed Guidebook.  The guidebook is geared for those with interest in 

developing and directing their own respite supports. To learn more about this and other related initiatives please visit
FRED Conference
On March 3, 2012, Farms and Ranches Enabling People with Disabilities (FRED) will host a Conference on the theme, "Special Needs Lifelong Communities" in Manhattan Beach, California. The purpose of this inaugural conference is to create a coalition of professionals and family members involved in special needs farms and ranches.  Housing, employment, and recreation needs for adults with special needs will be examined with emphasis on new visions for community development.  To learn more visit

ASAN Seeks Autistic People as Federal Grant Reviewers


The Autistic Self Advocacy Network (ASAN) recently held a Symposium on Ethical, Legal, and Social Implications of Autism Research, funded by the Administration on Developmental Disabilities and attended by self-advocates and researchers. One outcome of the symposium was the recommendation for greater inclusion of autistic adults on Institutional Review Boards (IRB) and grant review panels. As a result, several federal funders have begun to work collaboratively with ASAN to identify individuals with autism and other disabilities interested in serving as panel members.


For more information about ASAN and this project, go to


Resumes reflecting a commitment to a "civil rights/social model" approach to disability as well as any other relevant expertise are being accepted at

Peter Bell Appointed to the President's Committee for People with Intellectual Disabilities


On January 10, 2012, the White House announced that the President intends to appoint Autism Speaks Executive Vice President of Programs and Services Peter Bell to serve on the President's Committee for People with Intellectual Disabilities, advisory group to the President and Secretary of Health and Human Services on issues that impact people with intellectual disabilities and their quality of life. The committee is charged with advancing community inclusion, self-determination and the reduction in the severity of impact of disability through promotion of innovative programs and assistive technologies. Peter Bell is the father of a teenage son with autism. He oversees Autism Speaks' government relations and family services activities and acts as advisor to the science division. He serves on numerous boards and commissions, including as co-founder and president of Advancing Futures for Adults with Autism (AFAA) and chair of the Community Advisory Committee of the International Society for Autism Research (INSAR).

New Book by Judy Endow, MSW Now Available


AAPC has released a new book by Judy Endow that draws from the author's personal experiences and the previous Hidden Curriculum Calendars she has developed. Examples pertain to most areas of adult life and how the author personally has learned to more successfully maneuver social interactions. Judy also presents a framework for developing the ability to more quickly assess a situation and take steps to circumvent making social blunders before they have occurred.  To learn more go to

Volume 6 

AGI small transparent logo


"Reaching out, 

teaching from life experience." 

In This Issue
On to College!
An Innovative Program for Young Adults with ASD
Ten Steps in Planning for the Future for Your Aging Teen or Adult with Autism
AGI Announces New Youth Division, Directed by Sondra Williams
Autism Speaks Awards AGI a Targeted Family Services Grant
New Respite Resources
FRED Conference
ASAN Seeks Autistic People as Federal Grant Reviewers
Peter Bell Appointed to the President's Committee for People with Intellectual Disabilities
New Book by Judy Endow, MSW Now Available


The ARI Adults with ASD eBulletin

Editorial Staff



Val profile


Valerie Paradiz, PhD


ARI Director of Special Projects  

Director of the Autistic Global Initiative





 Janine M. Collins, MTS, MSW

Managing Editor

Participant in the Autistic Global Initiative 




andrew headshot republican


Andrew Nelson, MEd

Associate Editor





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 eBulletin, please email us for submission guidelines at 


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 concerns adults with autism spectrum condition sand those who

support them.



 Autistic Global Initiative



To be an agent for assumption-free inclusion of people with autism, providing advisory and consulting services to the Autism Research Institute and other organizations both nationally and globally.



We balance the work of reaching out for our own needs with the work of educating others, thereby expanding awareness about adult concerns. This work builds bridges among service providers, families and individuals within the autism community. We embrace the diverse perspectives of one another, while incorporating participation across varied modes of expression. In this way, the Autistic Global Initiative serves as a model of the inclusion for which we advocate.  



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