In This Issue
Learn the Steps, Get Employed
AGI Launches BILT™ Online Course for Direct Support
As the new school year begins, AGI and its partners are offering an innovative curriculum for direct care providers, family caregivers and friends who support the daily living needs of people on the autism spectrum. Building Independence for Life Training (BILT™) is an online course that provides practical skills and tools that can be used in any setting: a private home, group residence, agency, university or workplace. BILT provides caregivers with a strong foundation in effective strategies that can improve the quality of life for adults with autism.
 
Students will gain an appreciation for the complexities of autism spectrum disorder and learn to facilitate greater independence in people with autism. The 12-module course includes videos, lectures, moderated discussions and easy-to-use interactive tools, all based upon best practices. The course, which students can complete at their own pace, was developed by specialists in education, housing, nutrition, employment, and the transition from adolescence to adulthood. Some members of that expert panel are themselves on the autism spectrum.
 


The need for standardized training is rapidly growing: Each year, an estimated 50,000
young people with autism will transition into adulthood and may require jobs, housing options, transportation or residential supports. Among caregivers and support personnel, however, the turnover rate is more than 50 percent a year.
 
By establishing best-practice standards of training for autism care and support, BILT seeks to decrease turnover and set the stage for better outcomes. Colleges and universities can embed the BILT curriculum into the education of those pursuing careers in health care. BILT provides an entry point to a growth industry.
 
The curriculum was developed through Autism Speaks' partnership with two of the nation's leading educational and autism research institutions: the Autistic Global Initiative (AGI) of the Autism Research Institute (ARI) and the online education company Houlton Institute.
 
Led by nationally renowned faculty specializing in autism and adult services, students will learn to identify challenges and support the independence of people on the spectrum by focusing on sensory regulation, communication, community living, safety, transportation, and health and wellness. The cost of the BILT online course is $299. To learn more, go to BILT Course
Conner Cummings Receives National Award
Conner Cummings is a young adult with autism who loves all things Disney and is very passionate about changing laws related to child support for adult children with disabilities. In July 2015 Connor received the Advocate of the Year Award presented by the Autism Society of America for his legislative advocacy in the state of the Virginia and the passing of Conner's Law. He and his mother hope to continue this work, bringing similar legislation to every state of the USA.  Check out his Facebook page, Conquer for Conner: My Special Love at Conquer for Conner
AGI Honored
AGI Director, Valerie Paradiz,
receives award on behalf of AGI

The Autistic Global Initiative (AGI), a program of the Autism Research Institute that employs adults with autism to build capacity in adult services globally, was the recipient of the Autism Society of America's Adam Heavner Memorial Award for employer of the year. Learn more go to AGI
Make a Donation to AGI
Felicity House Opens Its Doors
A new program for women with autism based in New York City has opened its doors as a safe place where adult women with autism can socialize and participate in a variety of programs. The Felicity House's mission is to provide a place for women with autism where they can be themselves without judgment, have the opportunity to participate in activities, and meet other women. See more at Felicity.
Views from the Defiance College Affinity Program






Beets & Jams
AGI's Own Nutrition Column

Kelcey Hostetler Nutritionist
As this issue of the AGI eBulletin focuses on the state of Ohio, I thought it would be fun to come up with a healthy version of Buckeye Candies. The original candy is made to look like the buckeye nut of the Ohio State tree, and is made with a fair amount of butter and sugar. While my recipe resembles the traditional treat, it got a full nutrition makeover. These buckeyes are made with a combination of nut butter, oats, and chia seeds for a boost of protein and fiber. They are also completely free of added sugar, and get their sweetness from ripe bananas. As a bonus, these little treats can easily be modified to accommodate for allergies. Any form of nut or seed butter can be used as the binder, and Enjoy Life Foods makes wonderful allergy friendly chocolate chips. It can be hard to find a treat to satisfy your sweet tooth and your desire to live a healthy life. With these you can safely do both!
 
Banana Buckeyes 
Ingredients (makes about 18 cookies)
2-3 medium very ripe bananas, cut into chunks
½ cup almond butter/peanut butter/cashew butter/sunflower seed butter
3 tablespoons chia seeds
1/3 cup non-dairy milk (regular milk will work if there is no allergy to it)
2 cups rolled gluten-free oats
Pinch of salt (optional)
1 cup soy-free, dairy-free, nut free chocolate chips (Enjoy Life brand is my favorite)
2 teaspoons vanilla extract
Optional Add-ins: roughly chopped unsweetened dried fruit or unsalted nuts or seeds 
 Banana Buckeyes
Instructions
In a medium saucepan over low heat, combine banana chunks, nut butter, chia seeds, milk and salt. Heat for 2-3 minutes or until just beginning to bubble. 

Using a potato masher or fork, mash the bananas until smooth. Continue to heat mixture for an additional 1-3  minutes, stirring constantly. (You can also microwave the nut butter and bananas in a large microwave safe bowl until the nut butter is runny and bananas mash easily about 30-45 seconds, stirring at 15 second intervals. Add in chia seeds, milk, and salt, stir to combine.)
 
 
Stir in oats, and any add-ins, until well-coated. Spoon rounded tablespoonfuls onto waxed paper and let cool for 10 minutes. Press a toothpick into the top of each ball (to be used later as the handle for dipping) and chill in freezer until firm, about 30 minutes.

Melt chocolate chips in a double boiler or in a bowl set over a pan of barely simmering water. Stir frequently until smooth. Once melted, stir in vanilla. (You can also melt chocolate in the microwave. Melt in a large microwave safe bowl, stirring at 30 second intervals until melted.)

Dip frozen banana oat cookies in chocolate using the toothpick. Leave a small portion of the cookie showing at the top to make them look like Buckeyes. Put back on the cookie sheet and refrigerate until ready to serve.
Contact Our Editorial Team
adultsebulletin@autism.com
Valerie Paradiz, PhD
Editor-in-Chief
Chloe Rothschild, Managing Editor
Kelcey Hostetler, Nutrition Editor
Greg Yates
Technical Editor
Next Issue: Bay Area California
In our November 2015 issue technical editor Greg Yates will bring readers to his home state of California with features on innovative programs and thought leaders in the Bay Area. Stay tuned!

AGI eBulletin
Fostering the development of adults on the autism spectrum and those who work with and for them

Chloe Rothschild
Chloe Rothschild
Letter from the 
Managing Editor
 
Hi There,
 
I am happy to welcome you to the August 2015 issue of the Autism Research Institute Adults with Autism eBulletin. Continuing with our exploration of innovative services in specific regions in the United States, this issue provides a look at just a few of the many transition and adult service programs in the state of Ohio. This month's publication is a special one for me personally, as I have transitioned to the world of adult services in the past year, and Ohio is my state of residence, and where I was born and raised.
 
There are many different programs in my home state that I would have loved to highlight here, but due to space limitations, I had to narrow my choices to a few. I hope you enjoy reading about the Center for Autism and Transition Services program, an integrated health program for transition-aged individuals and adults with autism based in Columbus, Ohio and the Affinity Autism Program, which is based in Defiance College in Defiance, Ohio. Finally, you'll read an article I have contributed about my transition process from school to adult services. I hope you enjoy Ohio as much as I do.
 
Chloe Rothschild
Managing Editor 

Meeting Medical Needs in Autism: The CAST Program
Christopher Hanks, MD
 
The number of adults with autism is rapidly increasing. Recent research has demonstrated that adults with autism have higher rates of many different medical conditions than those without autism (1). However, surveys have demonstrated that most adult healthcare providers report not having adequate skills and comfort in caring for people with autism (2). The Center for Autism Services and Transition (CAST), based at The Ohio State University Wexner Medical Center, was founded in 2014 to help bridge this gap. Incorporated into an existing Internal Medicine and Pediatrics medical practice, CAST's growth has been steady since its inception with a current average of 3-5 new patient visits per week and 45-50 total patient visits per month. We recognize that each patient who enters our centers has different needs and goals, and so with each patient, we individualize and personalize our approach. When appropriate, we utilize existing transition readiness assessment tools to determine skills that may need to be developed to allow a person more independence in accessing medical services. We believe that every person deserves access to high-quality medical care by health care providers who understand them and can partner with them to improve their health. CAST's primary goal is to provide medical care that is accessible to adolescents and adults with autism. This is being accomplished through a variety of avenues.
 
Dr. Hanks with patient

Pre-Visit Assessment
Staff performs a telephone-based assessment prior to the first visit to identify any barriers or specific needs related to medical care. Based on the assessment, the visit flow can be modified as needed. For those who are able, a standard adult medical visit approach is maintained, but for those who have had difficulty with these experiences in the past, modifications can be made. Some examples include rooming the patient immediately, instead of asking them wait in the waiting room. Alternatively, examining the patient immediately upon arrival, then allowing them to leave while a support person or guardian stays in the room to discuss needs and determine any actions.
 
Team-Based Medical Home
The Center for Autism Services and Transition is a Patient Centered Medical Home certified practice. The CAST team consists of physicians, a nurse/care-coordinator, a social worker, a patient navigator, a clinical pharmacist, and a psychiatrist. Patient visits may include time with any or all of these team members, depending on patient needs. CAST provides medication management, referrals to specialists, blood draws, immunizations, preventative health screenings, and office-based procedures to patients. To improve quality and integration of care, CAST members attend regular team meetings to discuss specific patient needs. The program also partners with the Nisonger Center, a federally funded University Center for Excellence in Developmental Disabilities in Columbus, Ohio.

Collaboration with Pediatric Autism Providers
CAST is fortunate to be located in the same metropolitan area as the Nationwide Children's' Hospital Center for Autism Spectrum Disorders (CASD), an Autism Treatment Network site where methods are being developed to help ease the transition from pediatric to adult-based care models. Often, patients that have been cared for at the CASD are referred to CAST as they reach adult age, meeting with both the CASD and CAST physicians for six months as a supportive transitional measure. This gives the adult care physician time to get to know the patient's needs by communicating with the previous pediatric provider to ensure seamless transition of care.

Education of Future Medical Providers
As noted above, many medical providers report not being comfortable with or having experience in caring for people with autism. CAST hosts medical students and residents, providing them with opportunities to care for patients with autism and to develop an increased comfort with them.

Information and Referral
CAST strives to help patients with both medical and social needs. By identifying professionals and providers throughout the community who work with people with autism, we seek to aid patients in identifying supports beyond our Center to meet their additional needs.

Research
In addition to the medical care we provide to patients, the team at CAST seeks to understand factors that impact access to medical care for people with autism. Our aim is to better understand and identify ways to provide high-quality care for people with autism and to share our findings with other medical providers, thereby expanding the network of providers prepared to serve the growing community of adults with autism.
 
To learn more about the Center for Autism Services and Transition, go to CAST.
  1. Croen et al. The Health Status of Adults on the Autism Spectrum.  Autism.  2015 Apr 24 (Epub ahead of print)
  2. Massolo et al. A Mixed Methods Study of Physician Knowledge and Experience with Autism in Adults, presented at the International Society for Autism Research May 2015. (Available online here.)
Christopher Hanks, MD, attended Penn State University College of Medicine and completed residency training in Internal Medicine and Pediatrics at The Ohio State University Wexner Medical Center and Nationwide Children's Hospital. He then joined the faculty at The Ohio State University Wexner Medical Center in the Division of General Internal Medicine where he provides medical care, teaches medical students and residents, and serves as the medical director of the Center for Autism Services and Transition (CAST). 

ASD Affinity Program Going Strong at Defiance College


Defiance College
Defiance College

The end of the 2014 - 2015 academic year marked an important milestone for faculty, staff, and students at Defiance College. This was the first year of the ASD Affinity Program, a support program for Defiance College students with autism spectrum disorder (ASD). The five students, three men and two women, who participated in the program ended the year with a range of accomplishments to celebrate, from earning a spot on the Dean's list (grade point average of 3.5 or higher) to performing in band, choir, and campus theatrical productions, to building new friendships.
 
 The program rests on three principles:
1. Students are first and foremost Defiance College students
2. Supports are individualized to build on the strengths of each individual
3. Relationships between students in the program and other Defiance College students are mutually beneficial
 
Defiance College Students First
Before applying to the ASD program, students first must be accepted to Defiance College. All students accepted into the Affinity support program are academically capable and degree-seeking college students. This distinction is one that students find important and empowering as they immerse themselves in college life, participate in music programs, take advantage of service learning opportunities, and enjoy college traditions like homecoming.
 
All students in the program live on campus in suite-style housing. Each student has his or her own private bedroom and shares a bathroom and kitchen with one other student in the program. There is also a large common area in each building that students often use to host game and movie nights. This living arrangement provides opportunities for both privacy and community building in the residential environment.
 
 
Individualized Supports
All students in the ASD Affinity Program receive support in three main areas: academic, residential, and social/communication. The specific nature of the support in each area is modified based on the strengths and challenges a student demonstrates, as well as on his or her preferences. Each student in the program has one or two peer mentors and a peer tutor. Peer mentors support students during social activities, model appropriate interpersonal skills, and facilitate new social connections and the development of adult life skills. The responsibilities of peer tutors include clarifying assignment instructions and guidelines, assisting students in understanding and learning content specific material, and promoting the development of study skills. The program also has a resident advisor who supports the students in a living learning environment focusing on the development of the skills necessary for independence. All peer supports are trained and supervised by the Program Coordinator, Rebecca Zebrowski, and the Program Director, Dr. Clarissa Barnes.
 
This model requires each student to communicate with his or her support team. This is accomplished in weekly meetings where students meet with their mentors, tutor, and the program coordinator. The coordinator assists the student in facilitating the meeting, during which each member of the team has a chance to provide both positive and corrective feedback. The opportunity for students to hear directly from each member of their staff, and for staff to hear directly from the student they support, has proved to be invaluable in ensuring that students' needs are met while establishing respect for each individual's preferences.
 
Mutually Beneficial Relationships
The ASD Affinity Program is part of the Hench Autism Studies Program. One aspect of the Hench Autism Studies Program mission is to educate students about ASD as a form of diversity. The experiences afforded by the ASD Affinity Program help Defiance College students to get to know peers with ASD as individuals, rather than as labels. Tutors, mentors, and the resident advisors get to know the students they are working with as peers with their own interests and strengths, rather than as a set of characteristics. Evidence of these benefits can be seen in an Autism Speaks blog post written by Claire Turner, resident advisor for the ASD Affinity Program. 
   
 
The Hench Autism Studies Program, created in 2007 through the vision of Defiance residents Eric and Deb Hench, also provides an on-campus public school classroom for adolescents with ASD (in collaboration with Defiance City Schools), a summer camp for adolescents and young adults, a resource center for families, professional development for area organizations, and an undergraduate minor in autism studies. To learn more go to Affinity
My Personal Experience with School Transition
Chloe Rothschild
My transition from school to the adult service world became a reality ten months ago. It was one of those events that we knew was coming, and we tried to be as prepared as possible. But reality truly did not hit until I truly left school. How does a person prepare herself for such a huge life change? How does someone prepare for exiting the comfort and daily routine that has been a part of her life for nearly 15 years? I didn't know all the answers, but I wish I had. It would have made the transition journey much easier for me, and for others, too.
 
Day in and day out, most days of the year I went to school. I had a team of people there who cared about me, helped me problem-solve and wanted me to be the best I could be. September 19th, 2014, is a date I will always remember, my last day of school age services... forever. I was feeling many emotions: happy, scared, nervous, unsure, anxious, and sometimes terrified all at the same time. It felt like everything I knew, everything that was routine to me, was about to be pulled out from under me. I had no choice in the matter. It was going to happen. State law said it must happen at my twenty-second birthday. As an individual with autism, I seek and crave predictability and routine in my life. It is what helps keep me afloat and functioning instead of sinking and drowning, so to speak. How can life be predictable, if when I ask, "What's next?", no one seems to have an answer?
 
I'm going to be quite honest, it was hard at times. The months, weeks, and days leading up to my exit were frustrating and nerve-wracking. I couldn't have done it without the support of my teachers, paraprofessionals, family and friends. At times, when my anxiety felt like it was going through the roof, these people had my back. They let me know that no matter what, it was going to be okay; everything was going to work out. They were right, it did work out. Eventually all of the pieces started to come together, and I sought out and built the perfect "team Chloe" again. I was able to put together a whole new circle, filled with new people who care about me and who are there for me.
 
One word that can be used to describe me is "determined". I am a go-getter. If I want to do something badly enough, I'll do it, no  matter what obstacles may stand in my way. I figure out a way to jump over them and to accomplish what I want to do. For example, when I came to realize that there wasn't an adult service support program that was what I had dreamed of for myself, I emailed people, I messaged friends, and I connected with others. Basically, I built my own individualized, post-school program that encompasses my jobs, activity in the field of autism advocacy, occupational therapy, individualized therapy sessions with staff who are trained in Applied Behavior Analysis (ABA), music therapy, extra-curricular activities and more. This did not happen overnight. It took months for everything to come together, but now that it has, it is truly amazing. I am blessed to have so many wonderful people on my team and in my life who care about me and support and encourage me, as I reach for the stars!
           
In this short time, in fact, I have accomplished many new things, such as speaking to teachers and school staff for professional development workshops, filling out grants to help pay for my dream team of services/programs, and speaking on the main stage. My message to others going through the transition journey is to be proactive, to prepare as much as possible, and to not give up, even on the hard days. Things that are worth it aren't always easy. The journey may be hard, but anything is possible.
 
Chloe Rothschild is a young adult with Autism. She is the managing editor for the ARI Adults with Autism eBulletin, and a young leader for the Autistic Global Initiative. She is also a disability advocate, public speaker and writer and serves on the advisory board to the Ohio Center for Autism and Low Incidence.