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ARI Adults with ASD eBulletin

May 31, 2011




From the Editor:




In my new position as Managing Editor of the ARI Adults with ASD eBulletin, I want to welcome you to this third and newly redesigned issue. I also want to introduce you to our new Associate Editor, Andrew Nelson, MEd, Positive Behavior Support Trainer at the West Virginia Autism Training Center at Marshall University. Welcome aboard Andrew!


For those who have read the previous issues, you will notice the Autistic Global Initiative (AGI) branding in our new eBulletin design. AGI has moved forward since your introduction to the group in the February issue of the eBulletin ( and, in addition to other activities, has confirmed its commitment as consultants for and contributors to the eBulletin. Valerie, as Editor-in-Chief, and I represent the membership of AGI, and Andrew has been with AGI as an ally since its inception in Utah last fall.


In fact, Andrew's article in this issue provides an update of AGI's other activities to date, including the successful launch of the adult services track at ARI's Spring Conference last month in Atlanta. Read his article to learn more about how AGI is providing valuable experience and information to professionals, family members and others on the spectrum.


I also offer an update on AGI's initiatives, with a progress report on the development of a comprehensive employment curriculum for vocational rehabilitation workers, transition specialists, employment specialists and job coaches. Please know that although two of our features are devoted to things AGI (because this program of ARI has been so active in the past few months), this is not our usual format. As editors of the eBulletin, we strive to provide stories and resources from across the nation and the globe and future issues will reflect this.


On that note, our guest feature offers valuable information about the nature and implementation of Microboards as a creative and viable way to support person-centered planning. Thank you to Ruthie-Marie Beckwith, founder and Executive Director of the Tennessee Association of Microboards and Cooperatives, Inc., for her contribution.


Until next time,


Janine M. Collins, MTS, MSW

Managing Editor

A Report on the ARI Conference:

The Autistic Global Initiative Hosts Its First Track on Adult Services


   Andrew Nelson, MEd 


Atlanta AGI group resized

AGI participants at the ARI Conference

Atlanta, April 2011 


The Autistic Global Initiative (AGI), a program of the Autism Research Institute, is a self-directed group of adults with ASD serving to expand awareness about adult concerns and to build bridges of support between organizations, individuals and families within the ASD community. Launched last fall, AGI has already reached a number of goals it first developed during its early planning meetings in October 2010 and February 2011. The most recent objective of the group was to establish a multi-faceted presence at the ARI Conference held in Atlanta, GA April 28-May 1, 2011.


To read the full article click here.


(To learn more about AGI and the group's core initiatives, see the February issue of this E Bulletin at


Autistic Global Initiative Fosters Successful Employment


Janine M. Collins, MTS, MSW


The Autistic Global Initiative (AGI)-a program of ARI that is staffed by adults with autism who are committed to increasing quality infrastructure for adults with ASD-is moving forward with its planned initiatives for 2011. Among them is the development and implementation of a comprehensive adult services curriculum and training series. Each module of the curriculum is designed and written by members of AGI (with exception of the ECLIPSE Model Curriculum). Content areas currently under development tackle the important arenas of transition and employment, with specific focus on training vocational rehabilitation workers, employment specialists, job coaches, school personnel, employers and others who support individuals with autism in their journey toward employment and career.


To read the full article click here.  


Microboards: Accessing Self-Determination Under Existing Waivers


Ruthie-Marie Beckwith, Ph.D.


A Microboard is formed when a small group (micro) of committed family and friends join together with a person with challenges to create a non-profit society (board). Together this small group of people address the person's planning and support needs in an empowering and customized fashion.

-Vela Microboard Association


Tired of waiting for systems change to catch up with you? Wishing for a circle of support that you can count on long term? Wanting to see families and individuals self-direct services NOW? If you answered 'yes' to any of these questions, you may want to explore how microboards can be used as a tool to provide customized services and supports while dramatically increasing individuals' quality of life.


To read the full article click here.


Microboard Resources


There are many resources to support person-centered planning and the development of microboards. Various resources are available at:

The Steps for Establishing a Microboard 

The General Nature of Microboards and as Medicaid Waiver Providers

Support for Microboard Development and Plan Development



There also are a number of Microboard associations that provide resources and support. For state-specific sites go to:

Georgia Microboard Association 

Illinois Association of Microboards and Cooperatives 

Tennessee Microboard Association 

The ARC of Texas - Texas Microboard Collaboration 

Vela Microboard Association 

Other states where microboards exist are California, Nevada, Colorado, Oklahoma, Iowa, Pennsylvania, Maryland, andVirginia.


For resources specific to understanding the PATH, the approach to person-centered planning used for microboard development, visit these sites:    


Achieving in Higher Education with Autism/Developmental Disabilities (AHEADD)


AHEADD provides college-age students with Asperger's syndrome, autism, attention deficit disorder, nonverbal learning disability and other learning disabilities with coaching, mentoring and support for personal advocacy. The assistance provided is geared to support students both academically and socially in order to be successful in the college or university setting. AHEADD uses an individualized approach to help students develop strategies to address personal social, communication and organizational challenges. Students receive support from professional support staff (who also serve as a liaison to the campus disability services department) and peer mentors. AHEADD provides services to students on many campuses across the country. Services are purchased for a per semester fee. More information about the AHEADD Model, the application and rates are available at



The National Institute of Mental Health (NIMH) recently launched a free, web-based program specifically designed to assist youth with Autism Spectrum Disorder (ASD) to develop and maintain employment-related skills. The JobTIPS website ( uses text, audio and video to provide tutorial support for:  determining interests, finding a job, getting a job, keeping a job and other job topics. All material is presented with the rationale in a step-by-step format with audio and visual support embedded to support the text. Printable materials such as worksheets, cue cards, visual schedules and graphic organizers also are available. The website is appropriate for use by youth with other disabilities and incorporates resources for educators, transition specialists, job coaches, and clinicians to support youth. The main "do2learn" site ( offers other relevant ASD-specific resources such as visual schedules and social stories.

Jessica Kingsley Publishers Announces New "Adults on the Autism Spectrum Catalog"


Jessica Kingsley Publishers recently announced a new catalog of titles devoted entirely to autism and adult issues. The catalog features books on advocacy, relationships, higher education, employment, self help, and many more topics. This one stop shop of books for adults with autism spectrum disorder is a first of its kind. Please visit the link below to learn more:

Autism, Epilepsy & Seizures


The Daniel Jordan Fiddle Foundation has produced a free pamphlet, Autism, Epilepsy & Seizures:  How to Recognize the Signs and Basic First Aid When You Do. The tri-fold brochure outlines basic facts about autism and epilepsy, information on the co-condition and types of seizures and procedures for determining the need for an emergency room visit. A key feature of the brochure is the inner panel that is designed as a decision-making chart outlining the seizure type, what it looks like, what it is not, what to do and what not to do. To view the pamphlet or download a copy, go to

Additionally, a press-ready version suitable for printing is available at


Prevalence of ASD in Adults in England


taken from ScienceDaily

®, May 2, 2011


Researchers in England have recently intensified efforts to track prevalence of autism spectrum disorder (ASD) in children, adolescents, and adults.   Data for children and adolescents indicate levels near 1 in 100.  Prevalence data for adults, however, appears to be somewhat more difficult to track due to older, high functioning adults with ASD going undiagnosed or overlooked.


Representatives from the National Centre for Social Research and a team led by Dr Traolach Brugha, Professor of Psychiatry at the University of Leicester used household surveys and other autism diagnostic scales to determine that approximately 9.8 in 1000 persons in England are on the autism spectrum.  Researchers used demographic information to sort the data by age and determined that adult rates of ASD appeared to match the rates for other age subsets.  To read the entire article please click the following link:


click here


A follow up article discussing the above study and under diagnosis of adults with ASD was also posted on EurekAlert! on May 4, 2011.  Please click the following link to learn more:


click here


Public Comment Requested - CMS Home and Community-Based Services Waivers


Comment Deadline: June 14, 2011


The Center for Medicare and Medicaid Services (CMS) is accepting public comment on a new rulemaking that would put in place standards for how Home and Community Based Services (HCBS) funds are utilized.

The proposed standards to the HCBS waiver provisions include changes "to convey expectations regarding person-centered plans of care, to provide characteristics of settings that are not home and community-based, to clarify the timing of amendments and public input requirements when States propose modifications to HCBS waiver programs and service rates,

and to describe the additional strategies available to CMS to ensure State compliance with the statutory provisions of section 1915(c) of the Act (from Federal Register, 76:73)."

For more information or to comment go to;D=CMS-2009-0071-0302.


Asperger's Syndrome and the Public Consciousness (free book)


by Dr. Irma Jacqueline Ozer (Ph.D/J.D.)


Dr. Ozer explores the perception of Asperger's as reflected through the law, our educational structures and media stereotypes. She also discusses her own personal journey. To access a copy of the book go to


Volume 3

AGI small transparent logo


"Reaching out, 

teaching from life experience." 

In This Issue
A Report on the ARI Conference
Autistic Global Initiative Fosters Successful Employment
Microboards: Accessing Self-Determination Under Existing Waivers
Microboard Resources
Achieving in Higher Education with Autism/Developmental Disabilities
JKP Catalogue of Books for Adults with ASD
Autism Epilepsy and Seizures
Prevalence of ASD in Adults in England
Public Comment Requested - HCBS Waivers
Asperger's Syndrome and the Public Consciousness


The ARI Adults with ASD eBulletin

Editorial Staff



Val profile


Valerie Paradiz, PhD


ARI Director of Special Projects  

Director of the Autistic Global Initiative




eBulletin_Janine w/Jake_cropped  


 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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