ARI Adults with ASD eBulletin
May 22, 2014
From the Editor:
I want to welcome you to the May issue of the AGI eBulletin. This issue is very similar to our February publication in that the focus is on young adults with autism spectrum disorder. In February we featured women on the spectrum; in this issue you will read contributions from young men ranging in age from mid teens to mid 30s.
I would like to thank Paul Isaacs, Zachary Vasile King, Campbell Teague, M. Kelter, Scott Lentine and D. J. Svoboda for sharing their experience, suggestions and opinions with us. I hope you will enjoy reading about their respective journeys as much as I have.
The Adults with Autism eBulletin would not be possible if it were not for the editorial support of Janine Collins and Valerie Paradiz. I want to thank them both for giving me another opportunity to act as the managing editor and for all the help and guidance they provide.
Editor in Training
Life on the Spectrum
When I think about what it means to be on the autism spectrum, I often think back to the first moments that I became aware of the differences between others and myself. It's an awareness that happened repeatedly, in different contexts, early in life; then, on a regular basis thereafter. That's the interesting thing about the spectrum: there is no singular difference that defines you. Every perception and every thought carries with it a distinguishing characteristic. This is true for all people, really. However, it's a difference that is even more pronounced when you are on the spectrum and living in a neurotypical world.
Still, I can pin down the first period of time that I became aware of being different. It was a time when I was very focused on crayons. I was four years old, maybe five. I remember that I liked to pull the paper covering off of each crayon. I would start at the top, and gently work downward and sideways. I'd go about it slowly, trying to get it all off in a single, unwinding tear. With any new box my parents gave me, I would open it, take the crayons out one at a time, rip the paper from each one, and then flush the pile of shreds down the toilet.
To read the rest of M. Kelter's story, click here.
|Journey to Myself
My life has been
a never-ending adventure. My autism (Asperger's Syndrome) was discovered in 1st grade when I had violent outbursts daily, causing me to rage and run out of the classrooms and through hallways! It was complete chaos inside my head, and I couldn't even tell what was wrong. The teachers would not meet my needs, so I was pulled out of school and homeschooled for a year.
When I tried school again in 2nd grade, it was much worse. Not only were they not meeting my needs, they were not patient and they were trying to get me to act like the other kids, which only caused me to rage more. One day, they trapped me in a small classroom with other kids while a teacher guarded the door - an ignorant move in my opinion - and I was forced to wait for an opening. When the teacher thought it was safe, I bolted for the door and got out. Then, the principal got involved. I was restrained once again and my dad retrieved me from the school, this time for good. I was scared. I was not sure if any school would be able to handle me or if I could handle being in school. We went through at least one more school before I found Clare Woods Academy.
To read more of Zachary's story, click here.
You also can read more of his thoughts on his Facebook page, Zaspie.
Living in a World Where
Sounds Have No Meaning & Visuals Have No Substance: Visual Agnosias
Paul shares his personal perspective as someone who experiences agnosia.
Prosopagnosia - Faceblindness
Faces are fragmented pieces of information. I see "bits and pieces," never wholes of a "gestalt". I cannot generalise faces nor process them in their totality. Imagine seeing a face as pixelated pieces of information, so that when you focus on one "bit" you "lose the other."
Simultagnosia - Object Blindness & Semantic Agnosia - Meaning Blindness
As a child, I displayed behaviours of both a deaf and blind person. This is because of "sensory scrambling" and not due to any problems with my eyes or ears physically. Rather, it had to do with how my brain interpreted and "was seeing" visual information and "hearing" auditory information. I still live in this world today. Simultagnosia means I saw my whole visual field in bits and fragments. Semantic agnosia means I still see without meaning.
Visual - Verbal Agnosia
As a child, when I gained functional speech, I could read text but retain next to no "meaning". You can have this agnosia with (in my case) or without dyslexia.
To Paul's full perspective including his strategies for managing, click here.
You can read his blog, Autism from the Inside.
Just a Normal Day
Scott shares his personal perspective and insights through his poetry.
Never knowing what to say
Never knowing what to do
Always looking for clues
Just a normal day
Totally perplexed with everyday life
Always on edge never certain
I wish I could lift this curtain
Needing to constantly satisfy my need for information
Always online searching for new revelations
Going from site to site
Obtaining new insights every night
Trying to connect with people my age
Attempting to reveal my unique vision
But ending up alone and unengaged
Feeling like my life needs a total revision
Just a normal day
Can't You See
Can't you see
I just want to have a friend
Can't you see
I need the same connections in the end
Can't you see
I want a good job
Can't you see
I need to have stability and independence and be part of the general mob
Can't you see
I want to be independent on my own
Can't you see
I want to be able to have my own home
Can't you see
I want the same things as everyone else
Can't you see
I want to be appreciated for myself
To read both of Scott's submitted poems, click here.
More of Paul's poetry and other writing are available on his blog, Scott Lentine.
You also can watch a 5-minute interview with Scott by Autism Live (a production of the Center for Autism and Related Disorders - CARD) or read an article about him by Marcia Yerman.
Autism and College
College can be challenging for college students, especially first time students with autism who are adjusting to the new environment and possibly learning how to live independently in the dorms. There is a new wave of students with autism preparing to enter college. In fact, more students with autism spectrum disorders are attending college than they have in the past. According to the CDC, 1 out of 68 school aged students have autism. These young people are aging out of school and preparing for post-secondary options, including college, and many professors and campus staff do not know how to support them.
I have autism and I went to college, earning both a Bachelor's and a Master's degree. I was very fortunate to have a generally good college experience. Almost all of my instructors understood that I was different and that I had special needs. Most of my professors and the disability services office worked with me to provide the right accommodations...
ASD students need special accommodations to thrive. One of our challenges is socializing. On campus, we often have a hard time making friends and getting plugged into college groups. Another challenge is living on campus. Some students with ASD may struggle with sharing a room with a stranger. Dorms can also be very loud. Some of us have problems navigating the college campus, and we might even have to deal with stereotypes such as those I mentioned earlier. So, the question is, what can parents and college staff do to support us?
To read more about Campbell's experience and his tips for accommodations, click here.
D J Svoboda
Editor in Training
Chloe: Can you tell the readers a little bit about yourself?
DJ: My Name is D.J. Svoboda. I am 31 years old. I Live in North Carolina. I enjoy art, and I also enjoy public speaking. I also enjoy bowling, playing the Nintendo Wii, playing Mini Golf with friends and family, cooking and baking, taking walks on nice cool sunny days, helping my church at Hope Community Church, looking at the Internet, collecting different toys and games for the Wii and also different board games, but most of all I enjoy our Mission to make the world an even better place for all those with autism and disabilities and special needs and creating The Imagifriends of Imagiville. I also enjoy spending time with family and friends, too.
Chloe: When did Imagifriends start?
DJ: Creating The Imagifriends first started back in high school times of 1997. After a couple of years, The Imagifriends were officially born October, 19 2001 along with their very first website, too.
To read the rest of the interview and see Imagifriend Mupperezmo, click here.
You also can visit Imagiville and meet all of The Imagifriends.
AGI's Young Leaders Division Launches Facebook Page
The AGI YLD Facebook page was created so that the Young Leaders and their Director can share the work that they are doing. Readers can learn about AGI and the leaders contributions to its work, the group's autism advocacy, and what is happening in the daily lives of the members. To meet these leaders and find out about their work, visit their Page. Check out updates, artwork, interviews and more.
This website is devoted to topics relevant to those with ASD and in the process of post-secondary transition. Content areas include transition, post-secondary education, employment, finances, community and the arts and feature topical articles on each subject. Accompanying articles written by individuals and family members of those on the spectrum as well as links to related news are included. A section called Life Skills is an additional feature that provides a variety of videos, each with step-by-step instructions on components of independent living.
Autistic Global Initiative Moves to Colorado Office
The Autistic Global Initiative (AGI), a program of the Autism Research Institute of San Diego, has opened its new office in Boulder, Colorado. AGI is a national program that is staffed and self-directed by adults with autism working in the disability and other professional fields. AGI's mission is to develop initiatives that bring greater awareness to the growing population of adults with autism and how to support them.
While much focus is paid to children with autism, the country remains uninformed of the urgent need for capacity-building in education, research, employment, housing and residential support, and community involvement for adults. A recent report in April from the Centers for Disease Control (CDC) indicates that the rate of diagnosis of autism among school-aged children has risen to 1 in 68, a nearly 30% jump since the CDC's last report two years ago. "The message we share at AGI," says Dr. Valerie Paradiz, Executive Director, "is that kids with autism grow up to become adults with autism." With the program's recent move to Boulder, she adds, "we are building strong relationships across Colorado and in neighboring states" with service organizations, hospitals, schools, universities, family advocacy groups and self-advocates with disabilities. "AGI feels that solutions to many of the issues that face our community in adult services and adult life can be found within the adult autistic population itself. By designing and directing initiatives specific to adult concerns and to those who provide support to adults, the Autistic Global Initiative aims to be a part of the solution to the demand that lies before us." To contact us at our new office call 720-428-8389 or email firstname.lastname@example.org.
AGI Promotes Trauma Awareness and Prevention with New Film
In 2012, the Autistic Global Initiative's (AGI) Executive Committee decided that AGI would begin to focus on trauma prevention and trauma awareness as one of its primary activities of 2013 - 2015. As one of its first events, AGI will partner with CU Denver School of Medicine's JFK Partners on June 6, with the premiere of the film, "Autism and Trauma," produced by Dr. Paradiz and Anthony Morgali. The film features adults with autism as they discuss the effects of trauma in childhood and their survivorship stories as adults. Many people with autism experience trauma. Many are bullied at school or as adults, harassed at the workplace or in public, often leading them down the difficult path of Post-Traumatic Stress Disorder (PTSD). "Many adults who can share their trauma experiences and recovery," says Dr. Paradiz, "feel that our 'behavior issues' are often associated with our autism when, in actuality, they are a call for help" and for need of treatment of PTSD. "We are determined to get this important message out there, not only for adults who need support in recovery from trauma but also for children with autism and their families," says Paradiz. By screening the film with JFK partners, AGI kicks off a series of national initiatives aimed at bringing awareness to this still hidden, yet pervasive, problem. If your organization is interested in hosting a screening of the film, please email us at email@example.com.
Worlds of Autism: Across the Spectrum of Neurological Difference
Joyce Davidson and Michael Orsini, Editors
As posted by Minnesota Press:
Amid controversies about the causes, diagnosis, and treatment of autism, a timely collection of new and critical perspectives on how the disorder is understood and represented. Bringing together innovative work on autism by international scholars in the social sciences and humanities, Worlds of Autism boldly challenges the deficit narrative prevalent in both popular and scientific accounts of autism spectrum disorders. A major contribution to this emerging, interdisciplinary field, it situates autism within an abilities framework that respects the complex personhood of individuals with autism.
Available here from Minnesota Press.
Paul Shattuck, PhD Announces Recent Publications and Podcast Concerning Post-secondary Transition
Paul Shattuck of Drexel University and his colleagues, with funding from Emch Foundation, Autism Speaks, the National Science Foundation (HRD-1130088), and the National Institute of Mental Health (R01 MH086489), recently released new research findings. In a correspondence with AGI, Paul wrote, "We believe people on the autism spectrum are valuable members of our communities. They have roles to play, dreams to achieve, and contributions to make. We see an urgent need for research aimed directly at understanding what experiences, beyond clinical interventions, promote positive outcomes and prevent negative ones - both for people on the autism spectrum and the families and communities they are part of."
Citations and abstracts along with links to the publications are below. An accompanying audio podcast for the second publication, Autism Matters Podcast Number 13, is online. In this podcast, Paul Shattuck and Anne Roux discuss issues surrounding employment support and the barriers that people with autism face when looking for or attempting to retain a job.
You also can stay up to date with the research of Paul and his colleagues on their Facebook Page.
Paul T. Shattuck, Jessica Steinberg, Jennifer Yu, Xin Wei, Benjamin P. Cooper, Lynn Newman, and Anne M. Roux (2014). Disability Identification and Self-Efficacy among College Students on the Autism Spectrum. Autism Research and Treatment, Volume 2014, Article ID 924182. Available here.
Abstract: The number of youth on the autism spectrum approaching young adulthood and attending college is growing. Very little is known about the subjective experience of these college students. Disability identification and self-efficacy are two subjective factors that are critical for the developmental and logistical tasks associated with emerging adulthood. This study uses data from the National Longitudinal Transition Study 2 to examine the prevalence and correlates of disability identification and self-efficacy among college students on the autism spectrum. Results indicate nearly one-third of these students do not report seeing themselves as disabled or having a special need.
Paul T. Shattuck and Anne M. Roux (2014). Commentary on Employment Supports Research. Autism - The International Journal of Research and Practice, Published online before print January 21, 2014, doi: 10.1177/1362361313518996. Available here.
Abstract: This commentary discusses three factors we believe are necessary for advancing the science of improving the quality of life of people affected by autism: fostering innovation in applied population-level measurement approaches; partnering with community organizations, autistic adults, families and employers; and broadening the focus of inquiry to emphasize the importance of social-ecological context.
Invitation to Respond:
Adults with Autism Medical Survey
If you are on the autism spectrum and are age 18 or older, or have a son or daughter age 18 years or older, we would appreciate it if you could complete this survey.
Who: Chief Investigator Steve M. Edelson, Ph.D., Executive Director and Valerie Paradiz, Ph.D., Autistic Global Initiative, Autism Research Institute.
What: Comprehensive, consent-based online survey. The survey may take up to one hour to complete - you can start the survey and then save it, and return and complete it another time. The survey is available here.
Purpose: The purpose this survey is to document medical problems commonly associated with adults (18 years and older) on the autism spectrum.
Compensation: Participants will be entered in a contest to win an Apple iPad. The first drawing will be held on May 1, 2014. Note: one entry per individual with ASD.
Where: International - this study is open to participants worldwide.
When: Starts April 1, 2014
teaching from life experience."
The ARI Adults with ASD eBulletin
Valerie Paradiz, PhD
ARI Director of Special Projects
Director of the Autistic Global Initiative
Janine M. Collins, MTS, MSW
Participant in the
Autistic Global Initiative
Editor in Training
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 on the autism spectrum and those who support them.
Autistic Global Initiative
To foster the development of adults on the autism spectrum and those who work with and for them.
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.