a sermon delivered by Heather Gehron-Rice, M Div, at the UU Church of Delaware County on February 1, 2009
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I didn’t always know a lot about autism. My first exposure, as might have been yours, was the movie Rain Man.
A father dies, the younger son is angry that his only inheritance is a car and a bed of roses. Three million dollars goes into a trust fund for someone. In his quest to right the perceived injustice, he finds his older brother, Raymond, and solves the mystery of the Rain Man from his youth. Raymond is an autistic savant, or has Asperger’s Syndrome. He is brilliant with numbers, has a photographic memory and completely lacks any connection to what we call “The Real World”.
My personal introduction to autism came on the 4th of June 1998.
Benjamin came into the world screaming, and kept on screaming. As we experienced behaviors that were strange, inexplicable and exhausting, we struggled to find out what was wrong. In 2003 his preschool teacher at the Lancaster Cooperative School told us we should contact the IU-13 to set up an evaluation. When I asked her why, she couldn’t say anything more. For various reasons, the IU-13 evaluation didn’t happen. In the meantime, my therapist and I had narrowed his behaviors to those characteristic of both bipolar and autism. We needed to find a child psychiatrist.
We made an appointment and I filled out an overwhelming amount of paperwork. When we checked in for the appointment, we found out that they never received the paperwork and the appointment had been cancelled. I stood there, crying, devastated and enraged. I had been living for this appointment, struggling through every day trying to make sense of these foreign behaviors from this little boy who had come through my body.
I struggled not to take it out on the receptionist, but I didn’t do a very good job. Another psychiatrist overheard the problem and offered to cut short his lunch break to fit us in. The diagnosis was Pervasive Developmental Delay, Aspergers, Autism. I walked away from that appointment with a list of recommended reading. On the way out, I apologized to the receptionist.
My preferred coping mechanism is sarcasm; when that just won’t suffice, excessive research is my next line of defense. As soon as we got home, I ordered the books. While I waited for the books to arrive, I researched autism and Aspergers on the Internet. I spent hours and hours reading, and learned that there are as many theories about what causes autism as there are manifestations of autism. Diet, vaccinations, chemicals and environment are just a few. Much as I would like any one of those to be the elusive answer to the mystery of autism, it doesn’t seem likely. The Autism Advocate, a quarterly publication of the Autism Society of America, estimated that in China, India, US, UK, Mexico, the Philippines and Thailand combined there were almost 5 million people living with some form of autism in 2007. Only 1.5 million live in the US.
What is autism you ask? According to the Autism Society of America “Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a "spectrum disorder" that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.”
“Currently, ASA estimates that the lifetime cost of caring for a child with autism ranges from $3.5 million to $5 million, and that the United States is facing almost $90 billion annually in costs for autism (this figure includes research, insurance costs and non-covered expenses, Medicaid waivers for autism, educational spending, housing, transportation, employment, in addition to related therapeutic services and caregiver costs).”
We hear a lot of negative things about autism in the media – on airplanes, in churches, schools, from police and fire departments who lack the skills, inclination and training to support people who don’t understand the unwritten rules for any society and can’t learn them by osmosis.
“Temple Grandin is inarguably the most accomplished and well-known adult with autism in the world. Dr. Grandin didn't speak until she was three and a half years old. In 1950, she was labeled "autistic," and her parents were told she should be institutionalized.” Her book Thinking in Pictures allows a glimpse into the mind of someone who lives with autism and wouldn’t want to lose her abilities. “I think in pictures. Words are like a second language to me. …One of the most profound mysteries of autism has been the remarkable ability of most autistic people to excel at visual spatial skills while performing so poorly at verbal skills. When I was a child and teenager, I thought everybody thought in pictures. I had no idea that my thought processes were different. In fact, I did not realize the full extent of the differences until very recently.”
Now, I’m a verbal thinker. I can’t imagine thinking in pictures. It took me quite some time to figure out how to explain the frustrations and difficulties that Benjamin faces with communication. I finally stumbled upon an image that I find useful. Imagine that we live in a society that speaks Swahili. One of every 150 people does not speak Swahili and does not have a Swahili/English dictionary and doesn’t know the customs. The simplest daily interactions become difficult and frustrating.
Thursday night was awful. Andrew, Benjamin’s older brother, was upset because we wouldn’t give him quarters for a five dollar bill. He was hysterical, which means Benjamin is upset. Upset for these two isn’t pretty. Punches were thrown, objects were thrown and people were bitten. At one point, Doug, my husband, was in the dining room restraining Benjamin and I was in the living room restraining Andrew. Half an hour later Benjamin was violently sobbing on the futon. He was trying to tell me something about a bank taking your money. Ten minutes later, he got through to me that the five dollar bill Andrew had was a gift and if the bank took it, they wouldn’t give him that same five dollar bill. I was stunned. Most kids see a five dollar bill for the monetary value; he saw that specific bill as the gift.
There are many beautiful stories in The Myriad Gifts of Aspergers. As I was reading these vignettes, I came across stories that reminded me of Benjamin.
Vaschel the Liberator tells of an 11 year old boy whose parents were perplexed about how he was spending his allowance. It turns out he was buying and donating bags of dog food to the local animal shelter. Thanksgiving of 2006, we were watching Animal Planet. The APSCA was running commercials all day long for donations. At one point, Benjamin informed Doug and me that he was donating his Christmas money to the ASPCA. We offered to match his donation, not really expecting that he would still want to. To our chagrin, we talked him down from a $25 donation because we weren’t expecting him to want to donate so much of his money. To this day, he takes issues of animal welfare very seriously.
The Community Patriot tells of a nine-year-old who appointed himself the flag police after September 11th. He gathered his “flag enforcement kit” and went around the neighborhood either commending people for properly displaying the flag, or educating them on proper flag etiquette. Following Hurricane Katrina, Benjamin was obsessed with wanting to help. His school was collecting supplies for Hurricane buckets because his class had a car wash fundraiser. Benjamin repeatedly came up with ideas about how he could earn money to send to Katrina, and signs appeared all over our house.
The Auto Salesman is a seven-year-old who seems to have memorized Consumer Reports auto issues, including the strengths and inherent flaws in each. Benjamin was obsessed with airbags. He was very upset when I replaced my 1984 Volvo station wagon without airbags for a 2002 Saturn with airbags because he couldn’t sit in the passenger’s seat. When he would ask questions about my car, I handed him the owner’s manual and after he finished his research, he would hold it on his lap.
The Anti-Smoking Vigilante is about a nine-year-old girl who was so adamant about not smoking that friends, relatives and family members would hide their cigarettes and sneak outside. She had pamphlets and brochures with her at all times to hand out to anyone she came across who was smoking. Benjamin has been trying to get one of our family friends to stop smoking for quite a few years now. When I went to Turkey and Lebanon for seminary, I brought back a No Smoking sign in Arabic; I think that was his favorite gift.
The collection of stories about the positive things that people are able to accomplish only because they have autism is truly astounding. As the mother of a child who is still struggling to find his way in this world he does not seem to understand, these stories give me hope.
The first chapter of The Soul of Autism: Looking Beyond Labels to Unveil Spiritual Secrets of the Heart Savants is entitled The World Needs Autism. We need autism because of their unique perspectives. What would the world be like without Einstein or music without Mozart? Would we still be using candles without Thomas Edison? Perhaps we would still be riding horses without Henry Ford. Who but Thomas Jefferson could have written the Declaration of Independence? Would we all have Macs if it weren’t for Bill Gates? The list of people who have had a profound impact on our lives today goes on and on. Could any of these people have accomplished the same things without a “persistent fixation on parts of objects”? Perhaps the “lack of interest in peer relationships” is what allowed these people to stay focused.
Looking ahead, I wonder if the contributions of those who are still growing and learning to live with autism might not be the ones who could save this world. I think William Stillman says it best “I have yet to meet a person with autism who has not, in some capacity, declared their desire to give back of themselves, to share their gifts, and to teach others. In their gentle way – as befits their nature – people with autism compel us to higher standards of deference and respect for humanity.”
How would my life be different without Benjamin? How would my life be different without autism? I’m not sure I can even begin to imagine all the ways that I have changed because of autism. Would I be an advocate for those who struggle to achieve mental health? Would I understand that saying a person with autism honors the person as an individual of whom the autism is only a part of who they are? I wouldn’t know the importance of having flush toilets in this day and age of automatic toilets. I wouldn’t understand the huge difference between going to see the Titanic and going to see a museum exhibit about the Titanic. The importance of asking for a hug from your own child.
These words are from a Michael, a 15-yr old with autism. “Autism is unique to each individual. It is a side effect of the connectedness of soul. Only through a broken body can you retain your spiritual connectedness to the whole. In the body we lose all memory of our divinity. It is for us to seek experientially in physical form our divineness. The reality is in the physical experience. Without it there would be just the “knowing” without the experience of “being.” “Being” is what life is all about. God gives us the choice of what we want to experience. These choices direct our lives. My choice was to lead people home to their source. It requires my keeping my own connection and that requires a broken body. It is the beauty of it: a whole soul is a broken body; a broken soul is a complete body. To find divinity in a whole body is a very difficult thing. People lose themselves in the physical being and nothing can permeate. All the physical is but an illusion created by the soul yet it controls the soul for its duration on earth.”
© copyright Heather Gehron-Rice 2009