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BILT™ Online Course for Direct Support: January 11 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.
Learn the Steps, Get Employed
Friendly Online Course for Securing Employment
New Brain Imaging Study at San Diego State University Recruiting Participants
The Brain Development Imaging Laboratory (BILD) is looking for adults age 40 to 65 years who have Autism Spectrum Disorder or Asperger's Syndrome to participate in a new research study in San Diego, California.This project will fill a large gap in our current knowledge of ASD with virtually nothing known about brain and behavioral changes after age 40. Participants will take part in cognitive testing and an MRI scan and will be paid for their support to the study. This project is conducted by Dr. Ralph-Axel Müller and Dr. Ruth Carper of San Diego State University through a grant from the National Institutes of Health.
Make a Donation to AGI
Trauma Informed Care Tool Launches Online
JBS International and the Georgetown University National Technical Assistance Center for Children's Mental Health have created a web-based, video-enhanced trauma resource tool titled "Trauma Informed Care: Perspectives and Resources" in 2014. The Tool includes video interviews, issue briefs, key resources and links that are updated monthly to keep up with new developments in the field. Two new videos are now available through the tool: Intellectual/Developmental Disabilities and Trauma and Safety Without Seclusion and Restraint. The resource is available without cost at Trauma Informed Care Tool 
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 [email protected].
 
Beets & Jams
AGI's Own Nutrition Column
Grilled Corn and Zucchini Salad

Kelcey Hostetler Nutritionist
 
As the final eBulletin for this year focuses on California, I wanted to create a dish that highlights some classic West Coast flavors. Bright heirloom cherry tomatoes, grilled corn, and creamy avocado give this salad a Cali feel. While it might not feature fall ingredients, this dish is full of fiber and healthy fats, and it's hearty enough to be a meal on its own. The best part about this salad is that it is easily customized to meet dietary restrictions. If you can eat meat, top it with a perfectly grilled piece of fish or chicken. Garbanzo or cannellini beans, added with the tomatoes, would make for a great vegetarian protein boost. 
 
Ingredients:
·      2 ears of corn
·      1 zucchini, spiralized, shredded on a
       cheese grater, or peeled with a
        vegetable peeler
·      ½ bunch lacinato/Italian/dino kale,
       julienned (cut into very thin strips)
·      1large avocado, diced
·      1 jalapeño, diced into small chunks 
·      2 cloves garlic, minced
·      ½ large red onion, sliced
·      Heirloom cherry tomatoes, halved
·      1 tbsp. each, cilantro and parsley,
       roughly chopped
·      Optional: Crumbled feta cheese,
       garbanzo beans, or grilled chicken
 
Vinaigrette:
·      ¾ cup oil (olive or avocado)
·      Juice and zest of 1 lime
·      Juice of ½ lemon
·      Ground cumin or coriander to taste
·      Salt and pepper to taste
·      ½ tsp. honey or agave 
·      1 tbsp. fresh herbs (chives, parsley,
       cilantro)
 
Directions:
Turn on grill to medium high. Remove husks from corn, brush with oil, season with salt and pepper and any other desired spices. Grill corn until lightly charred, turning to get even color. Set aside to cool.

Whisk or blend dressing ingredients together, seasoning as needed. If whisking, combine citrus juices and zest, herbs, and spices together, slowly whisk in oil.

Toss minced kale with 2 tbsp. dressing, add zucchini and toss together.
Cook onion, garlic, and jalapeño over medium high heat for 2-3 minutes, set aside to cool slightly.

Once corn has cooled, cut off the cob and add to kale and zucchini mixture. Add in cooled onion mixture. Add dressing to desired amount followed by cilantro and parsley, toss. Add avocado and stir to combine. Serve topped with halved cherry tomatoes, feta cheese, rinsed garbanzo beans, and/or grilled chicken (if using). 
 
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.
 
 
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How Communication
Keeps Me Safe
Jeremy Sicile-Kira 
Truly I rely on a supported living agency to help me greatly with my needs. They make it possible to live a life that is based on my strengths. I kindly am starting to earn money by painting, which currently covers the costs of my materials and art studio. Truly I hope to be more financially independent when my painting takes off. I also volunteer in my community, and
I nicely give ability awareness presentations to local schools. Frankly, I suffer from PTSD. I could not have this life, if I did not have good staff that listen to me when I communicate, which makes me feel safe.
 
Truly I like having staff communicate with me by using the letter board and iPad. Greatly I need many ways to communicate, very much like anybody else. Truly because I do not have a voice, I rely on my staff for being my translator. Greatly it's not as difficult as one would think. I point to letters on a letter board to spell out each word, or touch the letters on my iPad. Sometimes I can spell the words without even directly looking at the board because I am using my peripheral vision. Really I prefer to use my peripheral vision when I type because greatly it's easier for me.

Truly having PTSD is not fun. I sometimes recall bad experiences that make me act out. Truly I just need to communicate when I am having PTSD so that my staff is aware of what is going on. By communicating my thoughts to my staff, it makes me safer knowing that they can prepare for any outbursts that I may have. It's important to feel safe because I need to know that my support staff will help keep me in my boundaries. Having wonderful staff that are trained makes it easier to calm myself down. Greatly when I have PTSD, trained staff know what helps me. Frankly some of the things are: swimming, educational TV, meditation, tapping, and walking my dog Handsome. Just keeping me busy helps the most. When a staff member doesn't listen to me or offer another helpful activity, kindly it makes my PTSD worse because I don't feel safe.

Some good tips for people like me who rely on typing to communicate would be: practice, patience and do not get flustered. Often times you will find that society doesn't want to wait for you to type something out. Truly I am lucky because my staff demonstrates patience while I type in public. Truly it is upsetting when people finish my sentences for me rather than letting me finish typing. Also, sometimes I'll send an email and won't get a response for weeks. This makes me feel like what I have to say is not important. Greatly if there was more awareness for typers such as myself, then I would feel like we were contributing more to society by voicing our opinions.
 
Greatly I hope the following tips for my support staff will help others: greatly kindly believe in my abilities as a person with a lot to offer. Listen to everything I type, just sometimes my body starts to do stuff I do not want it to. Often my body does not listen to what my brain tells it to do.
Just listen to my frankly great typing, not just what it looks like I want. It helps having staff communicate with each other. Both support staff and the agency need to communicate all the time. Frankly help me do things, but don't do things for me. Be careful what you say around non-vocal people because we can still hear you and can get our feelings hurt.
 
A supported living agency provides great staff to support me with my life and housing needs. Truly tips for an agency would be that truly when I contact the agency there should be an immediate response. Sometimes the agency doesn't get back to me right away and then it makes me feel like I'm not being heard. Frankly it's a lot of typing for a person with motor challenges using one finger, so when I'm not acknowledged, I have a hard time typing it again. Truly sometimes they are just busy, but it's important to hear back from them to know that I've been acknowledged. Greatly agencies truly give people like me a voice. Frankly without their support we would have a more difficult time expressing our needs.
 
Truly I love my team of support staff. Nicely life would not be worth living without the wonderful staff and the agency that provides supports. I am grateful.

Jeremy Sicile-Kira serves on the AGI Advisory Board and is a member of the AGI Young Leaders Division. 
Contact Our Editorial Team
Valerie Paradiz, PhD
Editor-in-Chief
Chloe Rothschild, Managing Editor
Kelcey Hostetler, Nutrition Editor
Greg YatesTechnical Editor
More Views from Autsit 
Autisit cabin

Autsitting

Autsit talks

Hiking at Autsit retreat

Mindful cooking and eating
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 November 2015 issue of the Autism Research Institute Adults with Autism eBulletin.

This issue arrives from foggy San Francisco, where we continue our exploration of innovative adult autism services in different parts of the United States. There's a lot going on in the adult autism world in the San Francisco Bay Area and Northern California. The stories in this issue will give the barest glimpse of all the region has to offer-but it's a start!

San Francisco is home to one of America's oldest adult autism support groups, the AUTASTICS, and you can read about its path-breaking history below. The AUTASTICS gave birth to the San-Francisco-based adult autism nonprofit, AASCEND, itself a pioneering collaboration of adults on the autism spectrum, family members and autism professionals. Below you can read about one of AASCEND's most innovative programs and the subject of a recent book, The Autism Job Club.

The San Francisco area also teems with resources about the calming practice of meditation. Here you can learn about Autsit, a non-denominational meditation retreat made by and for adults on the autism spectrum. Read what they have to say about how meditation helps with sensory overload and other aspects of autism.

Finally, there is a personal story about this editor's return to his alma mater, UC Berkeley, to see how resources for autistic students there have changed in forty years. I hope you enjoy this journey out West!

Greg Yates
Guest Editor and 
eBulletin Technical Editor 

The Autism Job Club
Camilla Bixler
 
In 2011 the San Francisco-based nonprofit AASCEND launched an Autism Job Club dedicated to helping people on the autism spectrum secure employment. AASCEND is the Autism Asperger Spectrum Coalition for Education, Networking & Development, an all-volunteer non-profit that began 16 years ago as an equal partnership of adults on the autism spectrum, friends and family, and autism professionals working together for support and action.

Unemployment and underemployment have long been the norm for most adults on the autism spectrum. When Michael Bernick and his son Will joined AASCEND, Mike suggested starting a job club to support AASCEND members seeking employment. As the former director of the California State Labor Department, Mike knew that job clubs were effective opportunities to network, share information and offer mutual support during the often discouraging process of looking for work. While the job club concept for typical job seekers was established, the idea of an autism job club was new.  
 
Meetings at the Autism Job Club 

The first AASCEND Job Club attracted about 15 job seekers and volunteers, including parents and professionals. The facilitator, Cindy Zoeller, was an employment professional who specialized in working with a neurodiverse clientele. One Saturday a month Cindy presented workshops on every aspect of job search skills and employment readiness - from using job boards, LinkedIn and social media to practicing interview questions and the soft skills required on the job. During the remainder of the month, Cindy provided online assistance to the club members who requested it.

Over the next three years, some members secured employment in the competitive job market, others were hired into special employment initiatives such as the SAP Autism at Work program. Some entered training programs designed for neurodiverse clients such as the Specialists Guild, while others found supported employment through state-supported programs. Some members moved on, but there were some who, though persistent, remained unemployed.

Autism Job Club participants 
 
AASCEND recognized that many of its members needed more assistance than the Job Club could provide. In October 2015, AASCEND rebooted the Job Club to respond to these identified needs. The restructured Job Club meetings now consist of an informational speaker, group support, and one-to-one assistance.

A new informational speaker is featured each month. The first guest in the speaker series was Theresa Woo, District Administrator for the Department of Rehabilitation (DOR). In the well-attended two-hour session, Theresa explained accessing and using DOR services. The following month, Jan Johnston-Tyler, CEO and founder of EvoLibi, a neurodiversity consulting firm, spoke on getting ready to work - who can help and how to do it. Many of the Job Club members did not know they could request and receive DOR funding for private consultants such as EvoLibri. They did not know the words to say to request such services. Now they do.

The Arc of San Francisco supplies the meeting space for the Job Club, and student volunteers from the San Francisco State University Autism Spectrum Studies program provide one-to-one assistance to participants. Both the Arc and SFSU students are now playing larger roles in facilitating the monthly speakers and program.

Job clubs typically meet weekly, so in addition to the in-person monthly meetings, the Job Club is gearing up to aid the momentum necessary to a successful job search by initiating weekly meetings via Skype.

Employment opportunities are slowly improving for people on the autism spectrum, but employment and unemployment remain great challenges. There's no magic answer to the problem, but as the AASCEND Job Club has shown, by working together, identifying and sharing information, offering support, inspiring one another and persevering, the chances of finding employment are far greater than doing it alone.

The story of the AASCEND Job Club is told in the recent and well-received book, The Autism Job Club: The Neurodiverse Workforce in the New Normal of Employment by Michael Bernick and Richard Holden. The book places the story of this small club in the context of the increasingly competitive and rapidly changing global employment environment. Find more at AASCEND  

Camilla Bixler is Co-Chair of AASCEND, an autism advocate and activist, a college ESL teacher and the parent of a young man on the spectrum.
Autism at Berkeley, Then and Now
Greg Yates 

Sather Gate and the Campanile at UC Berkeley

      I am on a train heading to Berkeley. It is taking me past apartment complexes, parking lots, and green hills. It's also taking me back over forty years, to a time when the train line didn't yet exist, to a time when I was a student at the University of California at Berkeley. Before even that I had been a head-banging, toe-walking, sensory-overloaded and socially inept "little professor" - what I later realized were marks of autism. Berkeley promised me the opportunity to change from a little professor to a big one.
 
I used Berkeley like an intellectual supermarket and easily gained A's an B's in rigorous technical courses. My systematic thinking and focus served me well, and I seemed squarely on the way to realizing my academic ambitions. But there was one problem. In four years among thirty thousand peers on a few acres, I made barely one friend. Socially, I might as well have been on Mars.
 
Years later, I saw that my social isolation at Berkeley was the result of autism. I'm on the train today to see if Berkeley offers more of an opening for socially disabled students than I could find in my youth. I have some hope. Berkeley was an epicenter of disability rights advocacy in America. The Physically Disabled Students Program at Berkeley began during my first year there. Forty-five years later, I walk from the train to the office of that very Disabled Students Program, long since expanded to include non-physical disabilities like autism.

Courtesy of an open-door policy, I am quickly welcomed into a pleasantly day-lit office by the program's director, Paul Hippolitus. From Paul I learn that in the six years of his tenure in the job, the number of autistic students served by the Disabled Students' Program at Berkeley has increased from half a dozen to almost forty students. I am surprised and pleased by the numbers. Paul notes, "we're becoming increasingly well-known for students on the spectrum who are bright, ambitious and want a great education with a view towards a career." One such student was a young Vietnamese woman on the spectrum who was able to graduate with a degree in microbiology in two years, "which tells you about her ability to absorb and learn," Paul notes wryly. She went on to medical school.
 
The supports that enabled the microbiologist and others on the spectrum to thrive are largely funded by a contract with the State Department of Rehabilitation (DOR). Most of the autistic clients of the Disabled Students Program at Berkeley enter as DOR clients or are helped through the process of becoming one. This allows access to services like coaching in social, executive functioning, and related skills.
 
One coaching success story went like this: A student on the spectrum was unnerving people entering a campus cafeteria by opening the door there for everyone for hours on end. A coach meeting with the student asked, "what did you do today?"
The student answered, "well, I was at the cafeteria, and I opened the doors all day for people." "Why did you do that?"
"I was trying to meet people."
And so the coach said, "Well that's important to do, and we want you to meet people, but that doesn't work. Here's why ... and here's another way that does work."
The coach helped the student to join a club on campus, and that did work.
 
I learn from Paul Hippolitus that one of the main challenges faced by students on the autism spectrum is balancing the right to be who they authentically are with learning skills that allow them to function in a neurotypical world. These include skills like making eye contact, varying verbal intonation, using gestures, and so on. Learning some of these skills can be painfully difficult for autistic students, but at the same time, failing to learn at least some of the skills can lead to more painful social and employment outcomes. Balancing the effort to be accepted with the effort to meet others partway appears to be the key to success.
 
On the topic of social isolation, I am told that at UC Berkeley students must self-identify as autistic in order to avail themselves of services, and those services are also contingent on becoming a DOR client. Once through that door, however, social events for students on the autism spectrum are offered.
 
My efforts over the following days to contact autistic students themselves proved to be unsuccessful, presumably due to a combination of their busyness, concern about privacy despite assurances, and the professional requirement of program staff to protect that privacy. Nevertheless, as the hills and parking lots fly past me on the train ride home, I see that autism has come a long way in the decades since my days at Cal. I can see that were I a student at Berkeley today, I would probably at least notice the possibility that my social difficulties had something to do with autism, and that would have saved me years of confusion. I look forward to meeting the chary autistic students and comparing experiences with them, but that meeting will have to wait for another day. In the meantime, I'd say things are looking up.
The AUTASTICS
Pioneers in Adult Autism
Soon after receiving a professional diagnosis of Asperger's Syndrome in 1994, Adam Pollack hunted for an existing Asperger's support-and-social group in the San Francisco area and found none. Undaunted, he started one himself - and the AUTASTICS was born. A few years later Adam gave the name an acronym that describes the group well: Autistics United Together And Showing They Indeed Can Succeed. Adam has now guided the group for 21 years. When the AUTASTICS began most Americans had never heard of autism and those who had usually thought that only children could be autistic. Public perception of autism has changed radically in the decades since. As the oldest adult autism support group of its kind in America, AUTASTICS has been an important part of that change.

Adam (center) and the AUTASTICS on a hike
 
AUTASTICS members range in age from 18 to over 70 years old and have conditions including autism, Asperger's Syndrome, Non Verbal learning Disorder and related conditions. AUTASTICS meets 7 or 8 months of the year in a large room generously lent for off-hours use by the Seton Medical Center in Daly City south of San Francisco. Natural light and a sweeping view to the North enter through windows along one wall of the room as members gather around a big table holding refreshments. There are no fees to participate in meetings, though donations to cover expenses are welcome. Every third month or so, the group meets in the San Jose's Municipal Rose Garden in the heart of Silicon Valley fifty miles south of San Francisco.

Attendance at AUTASTICS meetings varies greatly from month to month. Usually the number of participants is between 5 and 20. In Adam's words, the group "tends to be very mutually respectful, non-judgmental, tolerant and accommodating." Participants socialize, talk about challenges and successes in daily life, and generally enjoy the refreshing experience of being with others on the autism spectrum. Two recurring topics of conversation are strategies to find jobs and suitable housing.

One AUTASTICS participant had this to say about the group: "AUTASTICS was a real life-saver for me. In the early nineties, I knew I was on the autism spectrum and craved social contact with other autistic people. However, I didn't have the skills to start such a group myself. I am grateful to Adam for creating such a wonderful place for autistic people to be themselves, to enjoy activities together, and to learn from each other. The AUTASTICS changed my life."

Over the years the AUTASTICS have engaged in many different activities outside the meeting room. Hikes and other outings have been a regular feature, as well as many retreats specially designed for autistic adults. One AUTASTICS member said, "I especially liked the hikes I did with AUTASTICS. With my extreme sensory sensitivities, I found both the quiet of nature and the social presence of others like me on the hikes helped me to see at last that I was not alone."

The AUTASTICS was also instrumental in the creation of AASCEND (see accompanying article), a San Francisco group that is now one of America's oldest nonprofits specifically dedicated to the needs of adults on the autism spectrum. Adam reports that he is particularly happy about the 20 retreats he has organized in various venues in Northern and Southern California, often bringing together autism support groups from across the State. Adam has received the Temple Grandin Award for his pioneering work supporting autistic adults.

For more information and a calendar of events go to AUTASTICS
Autsit: Non-Denominational
Meditation for Autism
High in the Sierra Nevada near the Desolation Wilderness, a small group gathers at a mountain cabin over a waterfall, to do nothing. It is another Autsit meditation retreat for adults on the autism spectrum.
 
Many autistic people experience great sensory overload in the course of everyday life. The tick of a clock, the rumble of a television, a neighbor's perfume, the flash and glare of headlights - these and many other sensations can enter the autistic world as pain. In the words of one Autsit participant, "Overstimulation is a huge issue for people on the spectrum, and when you couple that with the daily grind and chaos of the world, you can have a very overwhelming situation. Autsit helps to balance that out."

The Autsit retreats were started in 2011 to bring basic tools of meditation to autism. Meditation, in one of its simpler forms, is just the practice of sitting quietly but attentively, doing nothing in particular. This gives jangled autistic sensations a chance to settle down. The silence at the cabin, filled only with the sound of the waterfall and an occasional bird or the wind, is also free of social stress. Seated side-by-side, participants wordlessly support each other as members of a human circle in a wilderness. In the words of an old song, "Here is what is good, to sit down together with friends."

A typical day at Autsit begins in the cool dawn with several periods of seated meditation alternating with short periods of slow walking meditation. Silence is observed until noon. The range of experience among Autsitters is wide, extending all the way from beginners to people with decades of regular sitting experience. No particular dogma or religion guides the retreat, and no prior experience is necessary. If it's silent and still it's welcome.
 
After sitting, it's time for breakfast! Cooking and meals are an important part of Autsit, not least because preparing meals quietly, as one or two do while others meditate, is a mindfulness practice in itself. One participant commented, "the cooking is an important part of the Autsit retreat because it's a whole communal thing and also we all need food," adding "at Autsit I feel we are more open to cook mindfully and to make good food."
 
The middle of the day is free and, single or together, participants head to a nearby lake for a swim, into the wilderness, onto the nearby cliff ledges for meditation over the waterfall, or off to other activities. During the course of the retreat, each participant is encouraged to give, if they wish, a talk on a spiritual matter that interests them. At Autsit everyone is both a student and a teacher.
 
After dinner and dishes, there is more meditation, followed by tea, s'mores and conversation by the fire or reading - and finally to bed. The last day of the retreat is a day of housecleaning, and the cabin is left shining.
 
The words of the participants (here lightly edited for length) express the Autsit experience best:
 
I think meditation is kind of an autistic thing. How I see it is meditation is a form of being with other people that's autistic. I really like how we did it this year with all the structure but also having time in between to get outdoors.
 
I come to Autsit to be with my fellow Aspie friends, to enrich my spiritual life, and to give away, to share of myself. The discipline of meditation helps to balance the chaotic thoughts and anxiety, like a wild horse being bridled. The wilderness is also a very balancing environment. All the chaos of the world is absent there.
 
I come to Autsit to get the courage to go beyond my limits of what I'm dealing with spiritually. It brings me closer to myself. I'm learning a lot about myself! My mind stops me from doing so much ... forgiving people or forgiving things that happened a long time ago.
 
Meditation helps our daily interactions with other people to be better, to be nicer, kinder.
Straight sitting is very difficult for people who do not sit that much, but the challenge opens everybody up, and whatever else we do together during the retreat is helped by the time we spend on our meditation cushions.
 
I'm really grateful we have this great space for Autsit. It's such a beautiful environment - you can't beat that!
 
Learn more at Autsit
AGI Wishes You
a Happy Holiday Season

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