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In This Issue
Autism Trauma Study
Seeks Your Experience



We are excited to announce that the A.J. Drexel Autism Institute is currently recruiting for a new research study that seeks to better understand what kind of life events are experienced as traumatic by individuals with autism, and how they may express symptoms of trauma. If you are someone on the autism spectrum, the parent of someone on the spectrum, or a professional who works with individuals who experienced trauma or those with autism, we want to hear from you! All responses will be kept anonymous.
  • Individuals with autism and their caregivers will complete a 1-2 hour interview (in person, by phone, or by e-mail) discussing sources and symptoms of extreme stress, adversity or trauma that they feel individuals with autism experience. Participants will receive a $25 Visa gift card for their participation!
  • Service providers, advocates and clinical researchers with expertise in autism or childhood adversity and trauma will complete a 20-minute survey by email in which they will be asked to rate potential causes and outcomes of trauma in individuals with autism. Participants will receive a $15 Visa gift card for their participation!
If you are interested in participating or have questions about the study, please contact Dr. Connor Kerns at cmk352@drexel.edu. Feel free to share the attached flyers with anyone who may be interested. More information on this and other studies currently recruiting from the A.J. Drexel Autism Institute is available at http://drexel.edu/autisminstitute/getting-involved/overview/. Thank you in advance for your interest!

Beets & Jams
AGI's Nutrition Column
Stir-fried Spaghetti Squash
Kelcey Hostetler Nutritionist
Winter can be a challenging time of year to eat healthily; so many dishes are heavy and full of fat. But there are great seasonal produce options to help lighten up recipes. Spaghetti squash is one of my favorite cold weather vegetables. For starters, it is gluten free and paleo friendly, and it is also an excellent source of fiber and Vitamin C. Once it is cooked, the squash resembles spaghetti and is a great swap for pasta, but the texture is more similar to rice noodles, which makes it the perfect base for this stir-fry. To save time on the squash, you can roast it up to three days before you need it, just be sure to let it cool and store in the fridge in a sealed container.  
 
 
 
Ingredients
  •  1 small spaghetti squash (about 2 lbs.) 
  •  1 yellow onion, sliced 
  •  ½ bunch of kale, sliced into thin strips 
  •  2 cloves garlic, minced 
  •  3 tbsp. gluten free tamari sauce 
  •  ½ tbsp. gluten free hoisin sauce 
  •  1 tsp. toasted sesame oil 
  •  2 tbsp. mirin 
  •  1 tsp. fresh ginger, grated 
  •  Zest from 1 lime 
  •  1 Fresno chili, sliced thin (optional for spicy version) 
  •  1 tsp. toasted sesame seeds (optional for garnish) 
  •  2 scallions, whites minced, green parts sliced thin - keep separate 
  •  Coconut oil, for cooking 
Directions:
 
1. Preheat oven to 375°. Pierce squash all over with a knife to vent. Roast on a rimmed baking sheet, turning every 20 minutes, until tender (knife will easily slide through), 60-90 minutes.
 
2. Let cool slightly. Halve lengthwise and scoop out seeds; discard. Scrape flesh with a fork to remove in long strands. 
 
3. While squash is cooking, whisk together tamari, hoisin, sesame oil, mirin, ginger and lime zest (and chili, if using). Set aside. If the sauce is too salty, or you can't find gluten free hoisin, you can add 1 tsp. of honey and a little hot water. 
 
4. Heat 1-2 tbsp. coconut oil in a pan over medium high heat. Add onion and cook for about 1 minute. Add kale, white parts from scallions, and garlic and cook about 3 minutes longer.
 
5. Add shredded spaghetti squash and toss to combine. Pour prepared sauce over vegetables and stir, making sure everything is coated. 
 
6. Remove from heat and sprinkle sliced green onions (scallions) and sesame seeds over the top. Serve.

Art by Sharron Loree


Princess


Elijah

Sharron Loree is an autistic artist living in the deserts of California. See (and buy!) her work at Loree.org 

Finding Faith
Sondra Williams
 
Young Sondra Williams
Young Sondra Williams
 
Autism can be complex to describe and understand. Often the way society sees those with differences is not reflected positively, thus causing an inner self-conflict. This conflict within may add to the already intense anxiety one with autism may feel. Not all families with autism are dysfunctional, but mine was: I endured a lot of trauma, pain and suffering, which caused them to abandon me and leave me isolated away from life. Most of my life after age 13 was spent locked away in mental health institutions with adults who had severe mental health challenges - even though was still a teen. I was in crisis, but I had limited ability to communicate effectively due to my autism, thus what was expressed from me was unwanted self-injurious behavior instead of words. I had no way to tell anyone what I was thinking, feeling, or wanting.
 
Because they rarely diagnosed females with autism, I was incorrectly diagnosed much of my life. The ill treatment towards me by staff added layers of trauma on top of the already significant traumas I was enduring. My behaviors were so misunderstood that so many labels were given to me over the years. One being that I was intellectually disabled alongside multiple mental health disorders such as major anxiety disorder and psychosis, due to my lack of ability to communicate effectively. I mostly used borrowed or scripted words that often did not connect to the questions asked of me. More often than not, the misunderstanding of my attempts to communicate were met with punitive measures of full 4pt. restraints and/or being locked into what I term as "cell rooms" (as they were called) where you are locked in, with only a mat on the floor, no access to a bathroom, or window, and limited human contact. This was my world. I was so emotionally shut down I could not function. I had no self-esteem, no confidence, no capacity to feel valued as a human being, and nothing to feel empowered by within me.
 
I was very unsure of life and was a social introvert. I had no one reaching in to help me, teach me or love me. For years I struggled to find answers that could help define me as a person worthy of being loved, accepted and valued for who I am in life. I felt hopeless and felt that life was not meant for me. I wanted to die more than to live mostly because I had no hope of a life worth living.
 
Sondra
 
It was years later when I began to seek out faith as a means of a last hope effort. According to my faith belief, I accepted a Savior I knew little about, but I heard the message "come as you are", and that "HE loved me". I was not at a place to really understand fully more about my faith than that in the beginning. I think very literally and would often get confused about the words and concepts. I often wondered where is this God I can't see? Where is this heaven every one speaks about? So many concepts to learn, but for some reason I continued to faithfully seek out this God everyone was talking about. According to my faith, I feel I was given strong family that were not blood relatives who cared greatly about me. Healing of past traumas and abuse did not come over night it has been a process just like my gradual learning due to autism has always been a process.
 
My faith beliefs have allowed me a real sense of my belonging and purpose in life. Faith has been my anchor to hang on to when life throws me painful experiences that I may not have the functional skills due to my autism to work through effectively. I know that by seeking out God as my faith source I have become a stronger woman, one with confidence. It has built my capacity to feel valued and loved. It has empowered me to be okay being me, just as I am. I have learned that I don't have to see God to "feel" God within me just like the wind, one can't see wind but can see the effects of wind. God is like that to me. I feel the effects of his presence within me. When I think about Heaven I no longer worry about where it is in terms of a physical place. I do though visualize what it might be like, for me I know when I am there no matter what it may be or not be I know I will be embraced, loved and valued and I will no longer feel pain or sadness or sorrow. When this life has given me more than my share of that, Heaven gives me a sense of relief and peace that Earth is not my home but a temporary place according to my faith belief. This concept has allowed me to be calm about "who I am" as a person, because I know where I am going some day. But for now my job here on Earth is to simply love as my Savior loved me. The importance of Faith among those with autism is greatly important. It allows us a sense of purpose and "well-being". It can and often does allow an extended network of supporting friends and faith families. It can build capacity of self-confidence, and can empower us to be okay as the people we are. Does it mean by finding faith that we will become perfect persons? No. It does mean though that like all humans we are going to make mistakes but that through our Faith we have a sense of forgiveness, we have a sense of hope and yes we can in time learn to extend Grace.
 


Sondra Williams is married, a mother of 4, and grandmother of 2. She speaks nationally on autism and trauma. Sondra is employed, mentoring individuals of all ages with autism and speaking out for them. Sondra says, "I love doing what I do!"

Our Editorial Team
Valerie Paradiz, PhD
Editor-in-Chief
Chloe Rothschild, Managing Editor
Kelcey Hostetler, Nutrition Editor
Greg Yates, Technical Editor
AGI eBulletin
Fostering the development of adults on the autism spectrum and those who work with and for them

Greetings from the Editors!
 
In this season of longer nights and brighter lights we bring you stories of religious faith and spiritual practice helping people on the autism spectrum. With bows to Earth's myriad spiritual traditions - but alas with limited space - we offer representative accounts of Judaism, Christianity, Buddhism and simple practice outside of any tradition. 
 
Whatever your own tradition or none, the AGI eBulletin editors thank you for your ongoing interest and support, and wish you the warmest of holiday seasons and a bright New Year!

Valerie Paradiz, Editor-in-Chief
My Experience Growing Up with Judaism and Autism
Chloe Rothschild 

My name is Chloe Rothschild. I am a young adult who has autism. I also happen to be Jewish. My family has worked very hard throughout my life to include me in activities, which includes our religion, Judaism. When I was younger, I remember going to temple with my family on Saturday mornings. We went more regularly then. I remember going to the synagogue for the Jewish holidays. I participated in all of these things to the best of my ability. When I was younger, both my sister and I would bring quiet activities to do while we listened in Temple. This was "more typical" as we were little. Little kids tend to usually have short attention spans. 
 
I participated in my temple's Sunday school program starting when I was in Kindergarten. I participated in consecration with my class. When I was in the younger grades of Sunday school, sometimes things were easier, but as I got older, things like watching movies and other activities were sometimes harder for me to do. It was becoming harder to connect socially with my Sunday school classmates, and I stopped attending Sunday school around 8th or 9th grade. 
 
Where I live, going to Hebrew school usually begins around third grade. So, like my typical peers, I began to attend Hebrew school in the third grade to prepare for my Bat Mitzvah, which would happen when I was twelve or thirteen years old. Hebrew school definitely had it's own challenges. It lasted for at least two hours, which was a long time for me. It was hard enough for me to learn to read English, how was I going to learn to read a whole new alphabet and a whole new language? I also have a visual impairment, so this was another "obstacle". We had to make sure that I could see what I was reading, that the workbooks and print were big enough. It was hard for me to master the prayers; it was hard for me to learn to read Hebrew. But I did it. With the help of an aide, a high school student for some time, and some understanding teachers, I completed Hebrew school at the end of fifth grade. 
 
In the sixth grade I started to work with the Cantor at my local temple to prefer for my Bat Mitzvah. It was then that we discovered that I really had a hard time reading Hebrew, but I was very dedicated to learning. I am great at memorizing things, so this was very helpful when it came to the prayers. We made my Bat Mitzvah service meet my needs, in regards to the amount of prayers that I lead etc. I also practiced for my Bat Mitzvah by listening to recordings, which really helped. I was also allowed to read the transliteration version of prayers. This was an accommodation that I needed to be successful. The staff at my temple and my family recognized, and accepted this. 
 
I had my Bat Mitzvah in September 2005. I read my prayers, gave my speeches, and did everything that I was supposed to do. I had a party with my friends etc. It was a great accomplishment, one that I am very grateful that I was able to accomplish with the support of my family, teachers, and the clerical staff at my synagogue. I then attended the Bar and Bat Mitzvahs of my classmates and friends. I did not attend confirmation in the tenth grade or go on the trip to Israel, even though the Temple was willing to work to accommodate my needs. I decided not to go at the time, which was something that my family and I accepted. 
 
As I got older, attending services including the high holiday services became a little harder, as I no longer participated in the youth programs. I love working with younger kids though, so for some time, I volunteered working with the younger kids and attending services as well. My family and I believe in letting me attend what I can, and participate in ways that our best for me. We make the accommodations that are best for me. These may seem untraditional to some, a young adult spending little time at services, not fasting, or taking breaks, or having books and toys to look at quietly during services. But this is my normal. We are lucky that overall as a whole, our community has accepted this. 
 
Starting in the third grade or so I attended a Jewish day camp, which I loved! Then I volunteered at this day camp working with the little kids for four years. I was accepted, I was valued, and I was loved. What more could we ask for? My experience in my religion increased to a whole new level when Friendship Circle Toledo started. I was one of the first participants in our chapter. For those individuals who are not familiar with the Friendship Circle, it was started in 1994 in Detroit, MI. It is a program where the foundation is inclusion, teens without disabilities volunteer their time to participate and volunteer with children, teens and young adults who have special needs. 
 
Chloe with Mushka Matusof, Director of Friendship Circle, Toledo, OH
 
The Friendship Circle program has spread across the country. There are now many different chapters. My local chapter has Sunday programs once a month or so where we learn about the holidays and participate in fun activities with our buddies. There is no seclusion; everyone participates to the best of their ability. It has changed the lives of not only the volunteers, but also the participants with special needs, their families, the program directors, and our community as a whole. My local Friendship Circle offers several programs that have allowed me and several others to participate and become more involved in my Jewish religion. Friendship Circle has changed my life. In conclusion, I have learned throughout my life, that I can participate in my religious community, sometimes accommodations just need to be made, and this is perfectly okay.
 
 
Chloe Rothschild is a young adult with autism who lives in Ohio with her family. Chloe is on a mission to advocate for autism and teach others about what it is like from her perspective.
 





Untitled by Sharron Loree
Untitled


Temple Grandin
Temple Grandin

Autism and Zen

Sunlight angles through the windows of the multi-faith chapel where a half-dozen figures sit silently in a semi-circle facing Anlor Davin. Anlor is lay-ordained in the Soto Zen Buddhist tradition and this is Autsit, the meditation group Anlor founded in order to share with other autistic people the practice that put her own life on track. The path to this day, however, was not easy for Anlor.

 logo _ 2016 Autsit
Sitting Together

Anlor grew up in Les Sables d'Olonne, a French coastal town best known as the starting point of the Vendée Globe sailboat race. Then, as now, France was in the grip of the discredited psychoanalytic view of autism, a view that condemned many autistic people to lives in institutions. Instinctively shunning this fate, Anlor fled to America where she settled in Chicago, Illinois. At the time Anlor had no idea what caused her incessant social difficulties and sensory overload, so severe that she sometimes passed out at the sound of a passing truck.

With the birth of her son, Anlor's sensory issues became extreme and she began to spiral downward. Fortunately an acquaintance happened then to give her a book about zen Buddhism. Within months, Anlor was living in California at the Green Gulch Farm and Zen Center, rising each morning long before dawn to sit on a meditation cushion facing a wall in the cold beside the other monks. She ended up living and working at Green Gulch for six months.

Through meditation, Anlor gradually came to realize that her sensory problems were beyond her control. Ten years of further turmoil followed her departure from the zen center, but Anlor credits the subtle guidance of the meditation with leading her eventually to a formal diagnosis of autism and to her receiving the medical care and support she needed all along. Anlor reports that regular upright sitting transformed her life from one of chaos and despair to a life of stability and purpose.
Anlor says, "I chose zen because I stumbled upon it, but it suits me well because I can sit at home and it doesn't cost me money I don't have. It also keeps me away from stimuli. Other forms of practice, like verbal prayer, are not as well suited to my particular autistic nature. For me the simple upright posture of Zen meditation (called zazen) is the most important part. When I sit quietly things happen inside of me that really change how I get around later in my day. It makes me less nervous."  Anlor reports that other parts of formal zen practice, for example lectures and chants, are important but that zazen is by far the biggest help to her.

When asked to offer any suggestions to autistic people interested in testing Zen practice Anlor had the following to say: "People wanting to distract themselves is the biggest obstacle. Everything we try to push away comes back in our face. Zen is not a distraction, and not pushing difficulty away can be very uncomfortable, particularly at the outset. It's not a matter of turning thorns into roses, but of just being aware of the thorns and watching what happens with those thorns. Although I sit alone most of the time I could never have begun this practice on my own, and few people can. My suggestion is to sit. Have some faith that the sitting can help in time. Start little; a few minutes a day is plenty at the outset. We are all seeds that can be grown if we water them. When we sit the good that we all have has a chance to develop."

Though lay-ordained, Anlor is not ordained to formally teach in the Soto Zen tradition: The Autsit meditation group she has started thus is a meeting of autistic and neurodiverse peers finding their way together with the aid of simple upright immobile sitting.

In the chapel the sunlight warms the dark wood walls. The only sounds are those of a distant motor and the occasional rustle of a meditation cushion. Silently the assembled autistic sitters face their lives, and perhaps sense their lives' directions.


Anlor Davin is the author of
Being Seen, a memoir about her experiences in autism, France and zen. She lives in Marin County, just north of San Francisco, and blogs at her website, AnlorDavin.com. Read more about Autsit at Autsit.net.
Just-Sitting
Gregory Yates
I was a head-banging, toe-walking little boy who cried at the touch of a few water drops, stuffed toilet paper into his ears, aroused comment with his poor eye contact, and acquired the nicknames The Brain and World's Foremost Authority. I was also troubled by a feeling of vast remoteness from other people, as if I stood at night in snow watching a bright social world through a window. Upon hearing about spiritual enlightenment when I was in my mid-teens I filled with hope! I decided then to become enlightened, and failing that, at least to become someday a kind and principled person of the sort called mensch.

I am now much closer to the end than the beginning of my life, with a long journey behind me. Along the way I tested many religions and, inspired by wild radio evangelists, was even baptized as a Christian at one point, though in a sedate tradition rather than a revival tent. 

I think my aim at the beginning was to end my isolation and then to give the world a report about how this can be done. In the event, however, I lacked the temperament for orthodox practice and so persisted hesitantly on my own.

I had read that the paragons of enlightenment often spoke of meditation and so in my mid-twenties, still hoping for an Earth-shattering breakthrough, I began a regular practice of immobile upright sitting that continues to this day. Like almost everyone who tries it, I right away felt myself to be "no good at meditation": My mind raced everywhere at once! Significantly, at the outset I committed to sit only ten minutes a month, the only level I felt a mind as chaotic as mine could sustain. The practice grew from there. Throughout I also attempted occasional non-dogmatic prayer with what humility I could muster.

What places meditation led me! It led me into and out of marriage. It led me to employment and to homelessness on the streets. It led me to a ten-year residence in a basement closet surviving on one twentieth of the prevailing local income. It led me to awareness of autism and how it has dominated my life. Very importantly it led me to seriously attempt spiritual practice with other people for years, without violence to my basic nature. Throughout this riotous voyage my one steady companion has been immobile upright sitting. 
                     
Today meditation, or what is perhaps more aptly called just-sitting, reminds me of the hole in the middle of the old stones used to grind wheat to flour: The hole is empty but the stone is useless without it. Likewise the hole is useless without everything else. When I sit I am letting the universe - God if you prefer - do what work on me is indicated, without my interference. I constantly return my ever-raucous mind to my breathing. Just-sitting is to me very clearly a form of prayer.   

Now when I hear people say they are "no good at meditation" I smile and hope that easier approaches will guide them as truly. And I am no longer certain of any difference between enlightenment and mensch.
 
Copyright © 2016 Gregory B. Yates, who grants permission to copy this article freely.


Greg Yates is co-chair of AASCEND.org, a San-Francisco-based non-profit composed of adults on the autism spectrum, their families, and professionals who work with them. Greg speculates about autism as an adaptation at autismtheory.org, and he works happily as a part-time handyman in the San Francisco area.

More from Sharron Loree
 

 Adoration


Spiritual Quest

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