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In This Issue
Autistic Seniors Wanted!



If you or a person you care for is on the autism spectrum and is 50 years of age or older, we hope you'll complete a new survey on quality-of-life issues associated with senior adults on the autism spectrum. 

We believe the results from this survey may provide insight about the needs and challenges faced by individuals with autism and their support providers. We anticipate that this study will also inspire others as well as better inform the autism community, government agencies, and other welfare and health-related organizations about such quality of life issues.

Once the data from this survey are collected and analyzed, we will contact those who completed the questionnaire and send them a summary report of the findings. 


ASD in Mid and Later Life
- a New Book
Bringing together a wealth of professional and academic research, alongside personal insights into aging and autism, this edited sourcebook looks beyond the early years and transition into adulthood with Autism Spectrum Disorders (ASDs), to focus instead on the challenges facing individuals with ASDs who are middle aged or older. Learn More.

Learn the Steps, Get Employed
Friendly Online Course for Securing Employment
Beets & Jams
AGI's Own Nutrition Column
Thai Cream of Mushroom Soup
Kelcey Hostetler Nutritionist
With the focus of this issue being the celebration of World Autism Awareness Month, I felt an internationally inspired recipe would be appropriate to share. Thai Cream of Mushroom Soup is hearty, healthy and allergen friendly. I use coconut milk in place of traditional dairy and add red curry paste to give it a Thai kick. This is a twist on a classic that only feels indulgent, featuring such attributes as being vegan, soy free, gluten free, and nut free all in one! The mushrooms and cauliflower in this recipe supply vitamins D, B, C and K, while the coconut milk and oil provide medium-chain triglycerides, healthy fats that are beneficial for weight management and proper brain function. The soup makes for a great light dinner or lunch, or it pairs well with grilled shrimp and roasted vegetable salad for a well-rounded meal!
  • 1 large onion, sliced
  • 1 small head of cauliflower, chopped
  • 1 8oz package of mushrooms, roughly chopped (crimini or button)
  • 2 cloves garlic, minced
  • 2 tsp thai red curry paste
  • 1 can coconut milk (full or low fat)
  • 2 cups vegetable stock
  • ½ bunch of kale, cut into thin strips
  • 1 shallot, sliced
  • 1 jalapeno, diced (optional)
  • 2-3 tbsp oil for cooking (coconut works well)
  • Salt and pepper to taste
  • ¼ tsp ground mustard
  • 1 tsp nutritional yeast (optional)
  • ¼ tsp paprika
  • ¼ tsp curry powder
Directions:
  1. Mix together ground mustard, nutritional yeast, paprika, curry powder, salt and pepper in a small bowl.
  2. Heat 1-2 tbsp oil in a medium pot over medium high heat, add onion and cauliflower, cook for 3-5 minutes. Add mushrooms, 1 clove garlic, and spice mix and cook for 5-7 minutes. Add red curry paste, and stir to coat vegetables. Slowly whisk in broth and coconut milk. Turn heat to medium/medium low and continue to cook for 15 minutes longer, stirring occasionally.
  3. While the soup cooks, heat remaining tbsp oil in a pan over medium high heat. Add sliced shallot and cook for 1 minute. Turn heat to medium, add kale and the other clove of garlic, and jalapeno if using. Season with salt and pepper and cook until kale begins to wilt stirring occasionally for about 5 minutes. Set aside.
  4. In a blender or food processor, blend together soup mixture. If a chunky soup is desired, set aside 1 cup of mixture before blending or blend mixture less thoroughly.
  5. Serve soup topped with kale mixture. 
The world of special diets and food allergies can be daunting. The ARI website has a plethora of insightful articles and webinars. I find these particularly useful as they pertain to the importance of nutrition support for individuals on the spectrum.
 
 
Host AGI's Film, "Trauma Warriors", in Your Community



Many people with autism experience trauma. They are are bullied at school or as adults, harassed at the workplace or in public, often leading them down the difficult path of developing other disorders such as PTSD.
AGI has produced a 40-minute film that features adults with autism as they discuss the effects of trauma in childhood and their important survivorship stories as adults. To learn about how you can host the film in your community, email us at AGI@autism.com.

Magic Always Happens
on Cyprus
Neophytes Papaneophytou, PhD
The Island of Cyprus
Magic Always Happens, Inc. is a non-profit with a mission to establish and expand awareness and services for autism in the island country of Cyprus by focusing on increasing education, research, therapy, and treatment. Established in 2015, the organization's members are all volunteer subject matter experts who work to increase decisive action for all people on the spectrum through education, psychology, art, sport, and scholarship.

One of the most important initiatives nationally is the proposed establishment of the Cyprus International Center for Autism Treatment and Research. This international facility will offer early diagnosis, treatment, education, and care. This Center will include education and accommodation to children (3-18 years) and assisted living/accommodation, employment, medical and all other supportive services to adults on the spectrum, from both Cyprus and our bordering countries in the Mediterrean.

To launch this initiative, Magic Always Happens is organizing a 1st Annual Cyprus International Conference on Autism Treatment and Research to take place in Paphos, Cyprus November 18-23 this year. This first-of-its-kind international conference will be held under the auspices of the Minister of Health of the Republic of Cyprus, Dr. George Pamborides, and under the direct aegis of the country's president, Nikos Anastasiades.

The conference will bring together academicians, psychologists, physicians, geneticists, civil engineers, architects, and other content experts to discuss best practices and suggest ideal methods of working with, treating, building for, and sustaining quality centers for autism excellence. Beginning with a series of plenary sessions, workgroups, and poster sessions open to the public, the conference will be followed by an expert think tank that will offer specific feedback and consultations toward the development of a comprehensive services center on the island of Cyprus. To learn more about the conference, go to www.autism360Cy.com. To learn about Magic Always Happens, visit http://www.magicalwayshappens.org.

AGI Offers Free Leadership Curriculum
 
This curriculum shows participants how to host leadership summits in their communities. A free curriculum download provides you with all the tools you need to foster citizenship, self-advocacy, and giving back to your community. You may also access a previously recorded webinar that guides you through implementing the curriculum so that youth and adults with autism can develop self-advocacy and citizenship skills, while giving back to their communities. To learn more click here.

And one from France...
France has been slow to abandon old views blaming mothers for autism, and sending many children to institutions.  Now there is a new memoir by an autistic woman, Anlor Davin, who left France in order to survive. 
Being Seen is the account of her young life in France, of her later experiences as an autistic mother, and of the tools she uses to thrive as an autistic person in America today. To learn more visit anlordavin.com
Register Now for the Next
BILT™ Online Course for Direct Support: May 16 Start
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, teaching to all core competencies for direct support recommended by the Centers for Medicare and Medicaid Services (CMS).

Led by nationally renowned faculty specializing in autism and adult services, course participants 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. 

BILT provides an entry point to a growth industry. Colleges and universities are embedding the BILT curriculum into the education of graduate and undergraduate students pursuing careers in health care.To learn more, go to BILT Course 

Take the Transition to Adulthood Medical Survey: Developed by First Place Arizona and SARRC

One critical aspect of life for adults on the autism spectrum is accessing and managing proper medical care. The Transition to Adulthood Medical Survey was developed by First Place and the Southwest Autism Research and Resource Center (SARRC) to assess the transitional medical needs and goals of the young adult population and their families. 
 
We invite you to participate in this 43-question online survey, which will take an estimated 15-20 minutes to complete. Your input is critical in assisting in the development of support programs to address the complex medical needs of adults with autism spectrum disorder (ASD), while streamlining the process for adults with ASD and their families.

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

Greg Yates
Letter from the 
Guest Editor
 
Welcome to the April 2016 issue of the Autism Research Institute Adults with Autism eBulletin. In this issue we celebrate World Autism Awareness Month with a tour of autism beyond mainland Europe and the Americas. Earth is large and our space here small, so our selection is necessarily limited. Nevertheless the trip reveals many faces of autism and many ways that autism awareness is growing worldwide.

Our first visit is to the equatorial African nation of Uganda, where we encounter views of autism very different from those prevailing in the United States. Here we meet Oliva, a student at an Entebbe Special Education school, who inspired the formation of a new program to change attitudes and understanding of autism in Uganda. 

Next we head to Vietnam, where San Francisco-area resident Ha Thomas introduces us to her lively autistic nephew Khanh and tells about her experience of autism as a person growing up in post-war Hanoi.

From the Vietnam we head a thousand miles further east to the Philippines, where we learn of the Independent Living Learning Centre and its active program to help young autistic people enter the work world. Here programs focusing on work behaviors, job readiness, on-site training and work placement have brought successful employment to many autistic adults.

Lastly we return to the Mediterranean isle of Cyprus, where we hear about Magic Always Happens, a new autism non-profit focusing on increasing education, research, therapy, and treatment for autism. The organization is now in the planning stages for a Cyprus International Center for Autism Treatment and Research, and in preparation for this will soon host an international conference on autism.

As the incidence of autism rises we can expect it to gain ever more attention worldwide, and perhaps to become a basis for more international cooperation. Please enjoy the tour as we invite you to celebrate this month of autism awareness, acceptance, and advancement!

Greg Yates
Guest Editor and
eBulletin Technical Editor
Autism in Uganda
Greg Yates
When Christa Preston's disabled brother passed away, she was moved to help other disabled people and she went to Uganda, a land-locked nation on the equator in Eastern Africa. There she volunteered for two years as a teacher at Entebbe Children's Welfare School. Christa is now CEO of EmbraceKulture, a project to bring quality, inclusive education and teacher training to Uganda. This is the story of how the project began. 
Entebbe Special Ed School sign
At the Entebbe school Christa met Oliva, who was the oldest girl at the school and, approaching her 17th birthday, soon to age out of the program. Despite having a cognitive disability, Oliva was competent in many areas. She could cook, do laundry and clean, and she also spoke three languages and served as Christa's translator on the playground. However, Oliva had not been taught how to read and had no employable skills. 
Christa, Oliva & friends
Christa, Oliva & friends
Oliva returned home to her village and some time later Christa visited her there. Christa learned that Oliva had been rejected by her mother. Oliva was supposed to be living with a foster family but it was an overcrowded place and as a result Oliva was living on the streets between her mother's house and the foster home. 

Christa explains that in Uganda disabilities like autism are still widely considered to be a curse or punishment for a sin. Especially in rural areas, a family faces a lot of shame if they admit to having a child who has any kind of disability. As a result severely disabled children are often hidden from view inside a home. 

Finding Oliva living on the streets, Christa brought in a social worker experienced in working with disabilities. Together they sat down with Oliva's mother and started a conversation with simple questions like, "Do you know that your daughter has a disability? Where do you think this comes from?" 

After just a short time Oliva's mother began to cry. Alarmed, Christa and the social worker reassured her, "Don't cry. We're not trying to shame you. We're not trying to say you did anything wrong." Then the mother sobbed, "I didn't realize she was a human being, let alone my daughter." After just a few more follow-up sessions they were able to reunite Oliva with her mother. 

From Oliva's story it became clear that parents in the region just didn't have access to information; that they simply didn't understand what was happening with their disabled children. Giving them that understanding created a first level of acceptance and care. This was the beginning of Christa's effort to reach out to parents with simple, life-saving information. 

When Christa began working at the Entebbe school, it was frustrating at first because none of the children were learning. The teachers had basically given up. The longer Christa stayed there the more she realized it was mostly due to lack of teacher training. Even at a "special school" none of the teachers had relevant experience except for one who had training in sign language, so they didn't know how to work or communicate with the students. Additionally, they had absolutely no special education resources. 

Christa then started to train the teachers she knew and brought in resources for them. The change in their interactions with the children was dramatic. Once they were trained the teachers started to believe the children were capable of learning and from that came meaningful relationships that fostered further learning. The experience at this one school demonstrated that basic foundational teacher training can have a huge impact. The Entebbe and other pilot schools also started vocation and life skills programs, and the children responded very well to these, too. Christa saw that their successes began changing perceptions at home. For the first time children with disabilities were being seen as capable. 

Teachers preparing
With the programs ongoing, Christa and her colleagues began talking to the Ugandan government about what they were doing and showcasing to them their successes. Eventually the government approached them, saying they wanted to build a national system drawing from their experience. In 2016, the government has begun to focus on developing inclusive education specifically for people with autism spectrum disorder. 

As executive director of EmbraceKulture, Christa is now working to develop a national system for people on the autism spectrum and all people with intellectual disabilities, with teacher training as a focus. Christa describes her organization's approach as "anthropological", combining both local and international resources. Global experts and teachers sit with local professionals and teachers to develop the educator trainings together. In this way they arrive at best practices for the population being served. The result is a system built with and for the Ugandan people, and one that is sustainable. While emphasis has been on urban areas, the collaborative is now in the process of launching a mobile learning platform with the goal of extending training via cell phone to very rural areas of Uganda by the end of this year. 

You can learn more about autism services in Uganda at EmbraceKulture.org

Ha and Khanh in Vietnam
Greg Yates
Vietnam is like a smaller California stretched into a long and narrow strip bordering the China Sea, with a population more than double that of California. Vietnam is of course famous in the United States as the land of contention in the Vietnam War. Since that conflict the country has been nominally communist, but beginning in 2002 Party members have been allowed to engage in private enterprise. This has led to a rapidly-growing economy that today ranks ahead of that of Hong Kong, Singapore and Sweden.

Ha Thomas was born in Hanoi in the North of Vietnam. Ha has a young cousin, Khanh, who is autistic. When Ha was 23 she came to the United States as an exchange student and soon noticed that there was a very strong autism community here. A year after that visit, Ha returned to America as a student at Santa Clara University, where she has just submitted her Master's thesis on work supports for adults on the autism spectrum.

Ha with baby Khahn
Khanh is lucky. His father is a doctor who understands child development, and as a result Khanh's autism was diagnosed early. Today, at age six, one of Khanh's favorite activities is to watch the opening dance montage for a popular online talent show which he repeatedly rewinds to watch it again and again. Because of his early diagnosis, he received appropriate education as early as when he was one year old, and his diagnosis of autism has since been adjusted from severe to moderate. 
Kahn with favorite TV show
Khanh is also lucky because, as Ha describes it, there is still stigma attached to autism in Vietnam. Ha tells the story of a teacher who voiced concern to a grandmother that her grandchild might be autistic. The grandmother then slapped the teacher across the face. Thankfully, the traditional view that disability is a result of past sins is being replaced by medical understanding, but in the case of autism, that understanding still remains limited. Most people in Vietnam do not know what autism is. Ha reports that general attitudes are not positive and lack of awareness is fairly uniform throughout the country. In this way, Khanh was fortunate to be surrounded by understanding at an early age.

There are few public services for autistic children or adults in Vietnam. There are, however, private options, including Khahn's school. Ha estimates that the limited programming is likely to change because, live elsewhere in the world, autism in Vietnam is on the rise. As a diagnosis, autism was first recognized in Vietnam only ten years ago. Today, 200,000 children have been referred to programs for autism treatment.

Ha has this to say about the future of autism in Vietnam:

As a fact there are more and more kids having autism and this means that more parents will get involved. Like parent-formed communities in the US, families in Vietnam will be the ones to start communities. I have found a few websites in Vietnam created by parents where they go to discuss their children's symptoms - and so I think, step by step, far more people in Vietnam will know about autism and there will be more acceptance. I really want others to understand that autism is a spectrum.

Ha hopes to be part of the help for autism in Vietnam herself. She says, "I definitely have a passion to have a facility of my own in Vietnam. That's why I went into this field of study!"

 Kahn at Ha's wedding

Youth in Transition in the Philippines
Abelardo Apollo I. David, Jr.
MOccThy, OTRP 
Employment remains an elusive aspiration for many families of persons with Autism. But now, there are increasing initiatives that make this dream more achievable. Transition and work training programs offer individualized training to suit a student's needs. Instead of focusing on traditional academic instruction, these programs aim to develop a individual's work behaviors and skills necessary for vocational pursuits. Schools that offer such programs need not be only technically versed in principles and strategies of work training; they also need to be vigorous in maintaining and expanding corporate networks in order to provide diverse on-the-job experiences and suitable work placements. This article presents how the Independent Living Learning Centre (ILLC), a school in the Philippines, has had a positive impact on the lives of teens and adults with autism.

Shaping Work Behaviors 
Work behaviors are necessary for successful participation in a job and for independent living. They include but are not limited to impulse control, frustration tolerance, attention span, concentration, decision-making, motivation, punctuality, attendance, acceptance of supervision, appropriate attire and grooming, responsibility, organization, and productivity. Teaching work behaviors should be emphasized in a school's curriculum. The students are initially trained to gain these work behaviors through task-oriented activities such as woodworking, crafts, food preparation and the like. Emphasis of instruction is on the process rather than on the product. As the students improve, their work behaviors are challenged by providing them with more complex tasks.

Job Readiness Program 
Once students have displayed appropriate work behaviors consistently, they may be included in the job readiness program. Here, their work behaviors are reinforced while simultaneously teaching them work skills. Work skills are specific capabilities needed in performing certain types of tasks such as typing, sewing, welding, drafting, woodworking, cooking, housekeeping and baking. During this stage, students perform in actual work environments but within the protective confines of the school. In ILLC, the students can undergo training in in-house facilities for food preparation and service, shop-keeping, basic entrepreneurship, clerical work, housekeeping, materials handling and teacher-aiding. Job coaches are present in these work units to provide assistance to the students as needed. ILLC students as servers in the school diner. Students receive a stipend at the last working day of the month. This gives them a strengthened sense of satisfaction and self-worth as well as the opportunity to manage their personal finances. This incorporates the value of discipline in money management.

On-Site-Training
ILLC has partnered with several establishments in order to create venues for its students to apply the work behaviors and skills that they have learned in school in actual work environments. In such partnerships, ILLC balances the need to offer training opportunities for its students while at the same time being mindful of the operational and business interests of the partner establishments and organizations. Among ILLC's partners include the Academia Progressive de Mania (a school for typically developing children), the Puzzles Café, an autism advocacy restaurant, High 5 Water Refilling Station and the Philippine Charity Sweepstakes Office. 

Work Placement 
Work Placement is the last step in the work training ladder. A crucial task is finding possible employers. A meeting is then set with prospective employers and a job interview with the student is arranged. Here, expectations, and terms of employment are discussed. Talking points include the job description, salaries, privileges, and work schedule. From here, work training goals are identified and a job coaching plan is developed. As the student's performance improves, the job coach transfers more supervisory duties to the company's assigned manager. Monitoring of the performance of the student is periodically conducted as he/she continues to work.
ILLC students as servers at the school diner
Dreams Realized 
The transition and work training program of the Independent Living Learning Center presents a goal-directed process that is designed to accommodate a student's specific needs. It follows a systematic approach so as to ensure a smooth transition of the student to the workplace. Crucial to the success of each student is a good match between his/her interest and skills and the demands of the job. Intervention should not just be focused on training the student but also on preparing the work context to minimize obstacles. Seeing people with autism integrated in the workforce will help society realize that given the right opportunity, they can also become contributing members of society. To date, ILLC has produced food checkers, bar tenders, encoders, library assistants, church servers, finance and inventory clerks, fast food crew, among others.


For more information about ILLC, please visit its website at http://www.illcphilippines.com
 
Abelardo Apollo I. David is an advocate for the social inclusion of individuals with autism and other developmental conditions in the Philippines. He is recognized internationally as a practicing authority on transition education and on community-based rehabilitation programs.

Autism Research Institute, 4182 Adams Ave, San Diego, CA 92116