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ARI Adults with ASD eBulletin

May 29, 2012 



From the Editor:

Greetings and welcome! My name is Chantal Sicile-Kira, and I am honored to have been asked to be a guest editor for this edition of the ARI Adults with ASD eBulletin. As a parent of a young adult, on the spectrum, I am glad this resource exists to provide more information and awareness about adult life on the spectrum. As the writer of five books on the subject of autism, as well as the founder of, I understand the importance of sharing information and learning from the real experts: those who are on the autism spectrum. And we are highlighting some of these voices in this issue with articles and resources that offer a look at youth leadership within our community. 


In Kevin's Experiences with Travel Instruction and Transition, Judy Shanley, Director of Student Engagement and Mobility Management at Easter Seals Project ACTION, shares the experiences of Kevin, a tenth grader completing a high school travel instruction program. In The Importance of Circles of Supports, my son, Jeremy Sicile-Kira, describes the challenges of needing supports in everyday life as well as the benefits he experiences through his own circles of supports. Finally, the new Youth Division of the Autistic Global Initiative, a program of ARI, offers us an article about its activities and objectives for 2012 and beyond.


We hope you enjoy this edition of the eBulletin. Please feel free to pass this on to those who may need it.


Chantal Sicile-Kira

Guest Editor


Kevin's Experiences with
Travel Instruction and Transition

By Judy Shanley,

Director of Student Engagement and Mobility Management at Easter Seals Project ACTION


I feel like I am independent. I don't need to depend on my parents to take me places. Now I can ride the bus to get to get to college, to a job and to the movies with my friends.


Kevin, a student, in the 10th grade, offered this comment as he completed a high school travel instruction program. Kevin and his parents knew that he would have to learn to travel independently to go to college, get a job, and live on his own. In fact, learning to use transportation was part of Kevin's Individualized Education Program (IEP), and he and his parents explored the various options that might be available to him - including using private transportation, using paratransit, and using public transportation with supports. Kevin's teachers, and the school's transition coordinator, knew that for adults with disabilities, accessible transportation is a critical part of community integration - making transportation an essential part of secondary transition planning for students.


To read the full article, click here.


The Importance of Circles of Support
By Jeremy Sicile-Kira,
California's Youth Leader for AGI




The primary benefit of creating and sustaining supports in my life is that I get to meet wonderful people. My support staff become my friends. They are my eyes on the world, and they each add their own personality and perspective. Through them, I see different aspects of the dynamic neurotypical (i.e. non-autistic) community. In addition to the benefits, there are also challenges with needing support staff.


People I become familiar with eventually go away, and new staff needs training. It is hard to trust people who are new to me, and it takes time for me to get used to them. Being supported by pleasant people is my hope, but learning to communicate takes time. I type to communicate and reaching open communication with a new person takes at least a few months.


To read the full article, click here.


Sondra Williams,
Youth Division

AGI Launches Its

New Youth Division

By Sondra Williams

(with personal stories by

AGI Youth Division Leaders)


For much of my life I felt like an outcast and a failure. I thought that I was not good enough, smart enough, normal enough...nothing ever seemed to match up. I became depressed. Even though my life moved on, it always felt like it was going too fast for me to even know how to keep up with it. Before I knew it, I was married and had four children. Then Autism entered my world. Although, I had been misdiagnosed with various labels all of my life, I never knew that the cause of my differences was due to this mystical and also complicated diagnosis. I had been living many years without a name for what I experienced. Once the professionals began to see my differences for what they were, and once I was finally correctly diagnosed, I was able to move forward. Now I had the name to my differences, and with that could begin to understand myself more. By learning the vocabulary in the community of autism, I became aware of how to describe what I had been challenged by and living. Once a person has awareness, there is room for growth. That's what happened to me. Over the last eleven years, since my correct diagnosis, I have made steady progress, including gains in my own self-expression and in the realm of my social/emotional development.  I never dreamed my life would be where it is today, all because of being set free through a diagnosis. This long path led me to  where I am today. I am now working as the Director of the  Autistic Global Initiative's Youth Division...

Chloe Rothschild, Ohio's Youth Leader   


Campbell Teague, Tennesee's  Youth Leader  

To read the

full article 



from AGI Youth Division Leaders, click here.

  * * * *    NEWS NOTES    * * * * 
My Safety, My Responsibility, My Plan: A Training Program on Emergency Preparedness 


Marilyn Vitalecreated this free, multi-session program, published by the Westchester Institute for Human Development, which is comprised of 6 downloadable PDF formatted files, word documents, and eight videos. The purpose of the program is to prepare adults with intellectual disabilities for emergencies. The program content is based on the principles set forth by FEMA, the Department of Homeland Security, the American Red Cross and the U.S. Fire Administration. Topics covered include a personal emergency plan, a family guide on emergency procedures, and practical checklists. The series is designed to empower both the individual as well as the family or support staff.


For more information, visit  

Intimate Relationships and Sexual Health: A Curriculum for Teaching Adolescents/Adults With High-Functioning Autism Spectrum Disorders and Other Social Challenges


This book by Catherine Davies and Melissa Dubie offers a comprehensive and much needed practical curriculum for educators, therapists and parents, including materials to teach a range of topics, from sexual anatomy to dating to intimate relationships. Guidelines on abusive behavior are also included. The goal of the curriculum is to support adult learners in making healthy and safe decisions. The format is easy to follow and provides instruction for use both in a group and one-on-one settings, with supporting lessons, activities, handouts and resources. An accompanying CD contains all the handouts for easy duplication and individualization. (AAPC Publishing, November 15, 2011)

Autism & the Decision to Drive


This new 20-minute video, produced by Debbaudt Legacy Productions, LLC and featuring Jerry Newport, describes and illustrates a number of factors related to the decision to drive. The content includes characteristics of the spectrum that may be assets to driving, identifying best approaches to teach driving skills and consideration of common driving experiences such as being stopped by a police officer. The video is intended for individuals with ASD and their families as well as educators. An accompanying discussion booklet is included. A promotional segment is available at


For more information about this and other products go to

Power Up - An Assessment Process for Statewide Self-Advocacy Groups


Power Up is an assessment process developed at the Human Services Research Institute (HSRI) and based on the Indicators of Excellence in Self-Advocacy, a list of "core indicators" developed by experienced self-advocates with throughout the country. The experience is designed to assist leaders self-advocacy organizations to determine ways to improve advocacy efforts throughout their states by strengthening the organizations' own process. Facilitation for the assessment process is provided by a self-advocate along with a HSRI staff person. Areas addressed include purpose, membership, group structure, communication, decision-making, goals and public relations. Recommendations for improvements are provided along with support to make a plan for next steps.


For more information about the process or to explore bringing facilitators to your organization, visit

Getting Involved in Research and Training:

A Guide for Persons with Intellectual Disabilities


The guide explains to people with disabilities how they can participate in research and training projects. Topics include what research is, what is involved in providing training, and the roles involved in each such as giving information (for trainings or to assist with research design), facilitating trainings, being a research subject, and helping researchers understand study outcomes. It also provides examples of projects and of ways to address problems such as accessibility, being fully included and the way information can be communicated when working on research and training.


For a downloadable PDF, go to the National Gateway to Self-Determination.

A Full Life with Autism Now Available


A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence, by disability advocate and speaker Chantal Sicile-Kira and her son, Jeremy Sicile-Kira, addresses issues of concern to both parents and those with ASD transitioning into adulthood. Topics include making friends, romance, housing, college and earning a living. Each subject covered addresses the challenges involved and includes specific steps for taking on those challenges. Jeremy, who types to communicate, provides a personal perspective on the subjects with essays and a list of "top ten tips for parents." Stories from other families help to illustrate the material discussed and additional resources are provided for both support providers and individual with ASD. The book is available at via Jeremy's website at

Carly's Voice: Breaking Through Autism 


Arthur Fleishmann's new memoir tells the story of his daughter, Carly, who was diagnosed with severe autism and an oral motor condition at the age of two. Like many others severely impacted by autism, doctors predicted that Carly would never develop intellectually beyond the abilities of a small child. Although she made some progress after years of intensive behavioral and communication therapy, Carly's real breakthrough came at the age of ten when to the surprise of her tutors and family she typed for the first time: "HELP TEETH HURT." In Carly's Voice blends Carly's own words with this father's story of learning to know his daughter. (Touchstone, March 27, 2012)

ARI Conference in Newark Features
Special Topics in Transition & Adult Services


In late April 2012, the Autism Research Institute hosted a conference in Newark, New Jersey. Members of the Autistic Global Initiative, a program of ARI that is self-directed and staffed by adults on the spectrum, produced a successful Adult Service Track for the conference that featured critical topics such as addressing trauma in individuals on the spectrum who have experienced sexual, physical or emotional abuse and building partnerships between schools and the medical community in IEP Transition Planning. AGI also produced several films that will be featured on the ARI web site within the upcoming year, including roundtable discussions on "Trauma and ASD" and "Effective Multi-Tiered Programming in Urban School Settings for Students with Autism in Transition." Stay tuned for more information on these projects in upcoming eBulletin issues.


To learn more about the Autistic Global Initiative, visit and click on AGI.

Volume 7 


"Reaching out, 

teaching from life experience."   
In This Issue
Kevin's Experience with Travel Instruction and Transition
The Importance of Circles of Support
AGI Launches Its New Youth Division
Intimate Relationships and Sexual Health: A Curriculum for Teaching Adolescents/Adults
Autism & the Decision to Drive
Power Up - An Assessment Process for Statewide Self-Advocacy Groups
Getting Involved in Research and Training: A Guide for Persons with Intellectual Disabilities
A Full Life with Autism Now Available
Carly's Voice: Breaking Through Autism
ARI Conference in Newark Features Special Topics in Transition & Adult Services


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 






Chantal Sicile-Kira

Guest 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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