ARI Adults with ASD eBulletin
August 19, 2014
From the Editor:
Hello to Our Readers!
This issue focuses on a subject that is near and dear to the hearts of AGI Partners and to our Young Leaders Division: trauma awareness and prevention. If you are not familiar with AGI, it is a program of the Autism Research Institute staffed by adults with autism who work in the disability and advocacy fields across the nation.
Two years ago, AGI decided that it wanted to push the needle on trauma awareness and prevention as it affects people with autism of all ages. In order to do so, we have been working hard on several initiatives that we hope will usher in a new and committed dialogue about trauma recovery and survivorship, including new research and interventions.
Below you will read features that explore trauma and survivorship from various perspectives, including a story about AGI's new film, Trauma Warriors. Co-produced by Anthony Morgali and myself, this documentary is being screened in many communities across the US and Canada. You can host the film in your own town or region, too, and we welcome other countries to sponsor the film! Look for more information in the article.
Additionally, writer Alex Earl offers a summary and his impressions of the AGI Young Leaders Think Tank on Trauma Awareness that was held in June in Boulder, Colorado. In this story you will get a peek into what our young leaders have been up to and how their national agenda for trauma prevention is taking shape.
Our own Managing Editor, Janine Collins, provides an important interview with Dr. Robert Fletcher of NADD that delves into the subject of prevention and recovery for those with developmental disabilities generally, as well as for those with ASD in particular.
Finally, our Junior Editor of the eBulletin, Chloe Rothschild, shares an insightful personal story of trauma and survivorship. Speaking of Chloe, I want to add that in less than one year as a member of our editorial team at AGI, she has learned the basics of electronic newsletter publishing and the duties of being an editor and writer. Thank you, Chloe, for your service to our community.
From our entire team at AGI, we hope you find helpful information and resources in this issue!
Valerie Paradiz, PhD
Director, Autistic Global Initiative
AGI Young Leaders
Host Think Tank
on Trauma Awareness
On June 8th, young adults with autism from all over the nation came together in Boulder, Colorado for the AGI Young Leaders Think Tank on trauma. This Think Tank will be a model for others in the future, so that young leaders who wish to address issues surrounding individuals with autism in their communities can gather together to create real, workable solutions. For this first think tank, the young leaders discussed the topic of trauma for youth on the spectrum. Dave Hasbury of Neighbors International provided graphic facilitation for the event, directing the discussion and representing participant contributions visually, in the form of two large drawings.
I was given the opportunity to observe the think tank, and it felt that every minute I was learning something new or gaining a new insight into something I thought I already understood. As such, I was overjoyed when I was asked to write a short summary of the event so that everyone who was unable to attend the think tank can still learn from it. Given how many valuable things were said, it would be near impossible to share all of them in a reasonable amount of time so I would like to discuss just a few of the many takeaways.
To read Alex's summary, click here.
Autism and Trauma: My Story
Unfortunately, traumatic events happen everyday. Whether these events result from misunderstandings, happen out of ignorance or are intentional, there is one thing in common with all traumatic situations: the individual traumatized suffers and struggles. Imagine feeling scared, hurt, worried, anxious and upset. Now, imagine not being able to speak or struggling to communicate to others what happened. This is the common experience for those with autism and Post Traumatic Stress Disorder (PTSD).
I am a young adult with autism and PTSD. I was diagnosed with PTSD in the summer of 2011 after experiencing a traumatic situation. In my opinion, my trauma was one of those instances of ignorance.
To read Chloe's story, click here.
A Conversation with
Robert Fletcher, NADD
Janine M. Collins, MTS, MSW
(also read the article or link to the interview here)
Recently, I had the pleasure and privilege to sit down via conference call for a conversation with Dr. Robert Fletcher of NADD (pronounced nad
and formerly known as the National Association for the Dually Diagnosed). Dr. Fletcher graciously spent an hour providing an overview of NADD, answering questions and offering insights into mental health issues including trauma as faced by those with I/DD, in general and autism, in particular.
Dr. Fletcher is the Founder and Chief Executive Officer of NADD. His vision and leadership have brought NADD to a position where it is recognized as the world's leading organization in providing educational resources, conferences, trainings, consultation services, as well as accreditation and certification programs in the field of dual diagnosis.
For the last forty years, Dr. Fletcher has dedicated his professional career to improving the lives of individuals who have a dual diagnosis (ID/MI). He has been involved as a clinician, program developer, policy maker, researcher and consultant. He has authored or co-authored numerous articles and has written or edited 10 books addressing mental health aspects in persons with I/DD, including as Chief Editor of the Diagnostic Manual - Intellectual Disabilities (DM-ID).
He has worked as a consultant worked in eight states, developing Dual Diagnosis Task Force's as a way to improve the lives of individuals who have IDD/MI. In recent years, Dr. Fletcher has spearheaded the NADD Accreditation and Certification Programs in an effort to raise the bar for provision of services to individuals with IDD/MI.
Questions addressed during the interview included, "What do you see as the primary mental health issues facing those with ASD?", "To what extent are trauma/traumatic experiences playing a role in these mental health issues?", "How can support services staff be better trained to recognize signs of trauma and support those with PTSD?", and more. A full recording of my conversation with Dr. Fletcher is available on YouTube.*
NADD will be offering 15 1-hour webinars (varying from beginner and intermediate to advanced levels) through December of this year. The variety of sessions includes ones of particular relevance to the current eBulletin content: two general trainings suitable for all audiences, How Nervous System Regulation Affects Moods and Behaviors: A Neurobiological Perspective and Mindfulness-Based Cognitive-Behavioral Therapy for Individuals with Intellectual Disability, as well as an advance training, Trauma and Neural Integration: Everyday Strategies.
Additional resources and links to other relevant organizations also are available from NADD.
*Editor's Note: Regrettably, a transcript of the interview is not available at this time. An unexpected technical issue during the captioning process prevented such transcription. If possible, a transcript will be made available at a later date.
Film Hosting Program
(full article also available here
In June 2104, the Autistic Global Initiative (AGI) joined with JFK Partners of Colorado University's School of Medicine to premiere Trauma Warriors, a film co-produced by Anthony Morgali and Valerie Paradiz, executive director of AGI. The film, which is now available to communities that wish to host a screening, plays an integral part in AGI's series of national initiatives aimed at bringing awareness to the still hidden, yet pervasive problem of trauma and its effects on people with autism.
Many people with autism experience trauma. They are bullied as children at school or as adults, they are harassed during post-secondary education, at the workplace or in public; often leading them down the difficult path of developing other disorders such as PTSD and contributing to a high incidence of depression and anxiety. The 45-minute feature presents adults with autism as they discuss trauma experiences in childhood and adult life, as well as their survivorship stories. The film also explores the role of sensory differences in people with autism and how individuals may experience trauma when their triggers and reactions to various environments are minimized, dismissed, punished or treated with strict behavioral interventions rather than with sensory-based interventions.
"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 Dr. Paradiz. The film underscores AGI's basic organizational philosophy 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, AGI aims to be a part of the solution to the demand that lies ahead. Preview a clip of the film.
Host Trauma Warriors in Your Community
Although the film will not be available for viewing online, AGI offers two options for communities to bring the film to their own towns, schools, agencies and organizations.
· Option 1: Make a Donation to AGI
You can host the film in your community and offer AGI a donation in return. The donation amount is up to you or your organization but AGI requests a deposit for the DVD, which will be refunded upon return after the screening event. All donations will be earmarked for the AGI Young Leaders Division and Trauma Prevention Initiatives.
· Option 2: Book a Person with Autism to Speak
Another option is to host the film in your community and pay a speaking fee plus travel expenses for an AGI member featured in the film to offer a talk or Q&A session following the screening. In this way, you are providing income to an individual with autism, which is just as valuable to AGI as a donation.
Additional Hosting Materials
Along with the 45-minute film (which must be returned after the screening), AGI provides a sample press release, a sample flyer and a publicity photo that can be used or adapted to promote your community event.
"With this production," says Dr. Paradiz, "AGI hopes to usher in a new and committed dialogue about trauma prevention and survivorship within our community, including new research and interventions." With the film already booked for 15 communities across the US and Canada, Paradiz hopes that more sponsors will join in "to spread the word that the time has come for trauma prevention programs to become an integral part of our schools, agencies, places of work and homes." If you or your organization is interested in hosting the film, contact AGI at firstname.lastname@example.org. A preview of the film can be seen here.
**** GUEST PUBLICATION ****
Sophia Francis-Stewart, MD, Katherine Cody, PsyD & Natalia Appenzeller, PhD
(reprinted with permission from AHA)
Admission to a psychiatric inpatient unit can have varying outcomes for a patient. The success of the admission is determined by the patient's ability to function after discharge. During the course of treatment, it is important to prepare the patient for life after hospitalization. All members of the team, including family members, residential staff, and the outpatient team in conjunction with the patient himself play a significant role in determining whether or not the transition will be successful. For patients with ASD/DD there are some key components that if in place at each juncture of this process will help increase the likelihood of this success.
To read the full article, click here.
Study and Call to Action:
Adults with Autism Suffer High Rates of Most Major Disorders
In a first of its kind research study, higher than typical rates of all major psychiatric (and medical) conditions have been documented among adults on the autism spectrum.
(used with permission of L. Croen, principle investigator)
Principle investigator, Lisa Croen, PhD, recently presented findings and implications at a meeting of the International Meeting for Autism Research (IMFAR). Dr. Croen is Senior Research Scientist and Director of Autism Research Program at Kaiser Permanente Division of Research. She received the Autism Society (ASA) 2014 Award for Outstanding Research of the Year - awarded to an individual or organization that has provided the autism community with meaningful progress and advancement in the field of applied research. A study summary, complete with a 7.5 minute video excerpt from the IMFAR presentation, is available.
Elijah Glen Center (Ohio) to Open this Fall
The Elijah Glen Center is a residential treatment facility in Worthington, OH for individuals with autism ages 12 - 17 who are in crisis. It is specifically designed to address the needs of those transitioning from an institutional placement or who are at risk for institutionalization. Scheduled to open in November 2014, the center is one of the first of its kind in the state of Ohio. To learn more about the center and its admission criteria, go here.
Book and Course Announcement:
Trauma-Informed Behavioral Interventions: What Works and What Doesn't
Published by aaidd, this book provides professionals and paraprofessionals working with individuals with intellectual disability a trauma-informed paradigm for understanding behavior and emotional experiences of those they support. The author addresses the often unhelpful (and further traumatizing) use of restraints or contingencies. She promotes an approach that fosters safety and well-being by addressing outstanding issues of trauma. The content includes case examples to illustrate what is ineffective and to outline the paradigm presented, including effective implementation. A template for creating mental health plans is included. Available on amazon.com.
An option for a self-study course using the text is available and offers a CEU certificate upon completion. For more information about the course, see the course description at the Trauma-Informed Training Group.
ARI Webinar Archive Available:
Addressing Anxiety & OCD in ASD
Conventional psychiatric medications, including SSRIs and benzodiazepines, may not be effective for everyone with anxiety disorders. Others may find only partial relief with these medications or experience unpleasant side effects.
[Dr. Suruchi Chandra, MD explores] a whole-body approach to identifying the core imbalances underlying anxiety disorders, including the gut-brain connection, hormonal imbalances, immune system dysfunction, mitochondrial dysfunction, and methylation defects. Dr. Chandra will discuss holistic and non-pharmaceutical ways to treat anxiety by addressing these underlying metabolic imbalances using a combination of dietary changes, herbal medicines, nutritional supplements, and other natural approaches (as posted on autism.com).
Although the presenter addresses the content from the perspective of treating children, the information is relevant across the lifespan.
The archive is available here.
Been There. Done That. Try This!:
An Aspie's Guide to Life on Earth
As announced by Jessica Kingsley publishers, "26 of the world's most successful people with Asperger syndromeBeen There. Done That. Try This!
have joined together to give advice to the next generation of Aspies in the first book of its kind, Been There. Done That. Try This!
The Aspie mentors come from all walks of life - authors, musicians, mathematicians, and more - they share their tips and insights into not just living with Asperger's but succeeding! Craig Evans, the founder of the online autism community Autism Hangout, surveyed people on the spectrum to find the top problem areas in their lives, discussing topics like anxiety, self-esteem, employment, friendship, and love. Additional Aspie superstars, including Temple Grandin, Liane Holliday Willey and Jennifer Cook O'Toole, offer personal guidance on coping with 17 key stressors including depression, meltdowns, careers, and disclosing a diagnosis. Each chapter ends with practical medical advice from Dr. Tony Attwood, one of the world's leading experts on autism spectrum disorders, and includes full-color artwork from Aspie artists. This book will have a huge impact on young people with Asperger's looking to find their place in the world. With its positive reinforcement and inspiring stories, Been There. Done That. Try This! is not looking to teach people on the spectrum how to blend in, but make them feel proud to stand out." Available at jkp.com.
A Freshman Survival Guide for College Students with Autism Spectrum Disorders: The
Stuff Nobody Tells You About!
eBulletin readers may remember Haley from our February 2014 issue that featured young women with autism. Her other book, Middle School - The Stuff Nobody Tells You About: A Teenage Girl with ASD Shares Her Experiences, is available on amazon.com.
As announced by Jessica Kingsley publishers, "How do you know which college is right for you? What happens if you don't get on with your roommate? And what on earth is the Greek system all about? As a university student with High-Functioning Autism, Haley Moss offers essential tips and advice in this insider's guide to surviving the Freshman year of college. Chatty, honest and full of really useful information, Haley's first-hand account of the college experience covers everything students with Autism Spectrum Disorders need to know. She talks through getting ready for college, dorm life and living away from parents, what to expect from classes, professors and exams, and how to cope in new social situations and make friends. This book is a must-read for all students on the autism spectrum who are about to begin their first year of college, parents and teachers who are helping them prepare, and college faculty and staff." Available at jkp.com.
The Odd Way Home
As announced on iTunes, "The oddest couple takes an unforgettable journey through the American Southwest, finding happiness in the unlikeliest of places and seeing in each other what no one else has seen before.
Maya is a product of childhood abuse who escapes her shattered life in Los Angeles and meets Duncan, a hermit from a tiny town. He is socially awkward and a slave to pattern and routine, but a master of map-making and directions. Their journey teaches Maya to care for someone else and takes Duncan into a new world. Their road trip is filled with unexpected surprises and hard realities that redefine the notion of family." Just released May of this year in select theaters, the film stars Rumer Willis, Chris Marquette and Veronica Cartwright and. You can view the trailer on YouTube
. Available through Amazon
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
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.