Autism Spectrum Disorders (ASDs) are a group of developmental disabilities that can cause significant social, communication and behavioral challenges. There are still so many unanswered questions about autism, but one thing we do know is that we are currently in an autism "epidemic" with diagnosis of the condition rising dramatically in the last decade. A new government survey of parents suggests that 1 in 45 children, ages 3 through 17, have been diagnosed with autism spectrum disorder. This, combined with movies like Rain Man, means that more people have heard about or been touched by autism than ever before. More exposure has lead to better acceptance and more opportunities for people "on the spectrum".
In 1963, when PDS client David was born, things were very different. No one outside of cognitive professionals had even heard of the word autism, least of all Bill and Betty, David’s parents. They had taken their son to many different "experts" in an attempt to find out why he didn't sleep, was hyperactive, pulled away when they tried to embrace him, and didn't make eye contact. Finally an expert at Stanford diagnosed David with autism. Betty remembers hearing the word and then writing it down. "What are you doing?" asked the doctor. "I am going to go to the library and look it up," she said. The doctor could have just as well said "Quantum theory" for all she knew. "Frankly," said the doctor to her gently, "I don't understand why you are taking this so well. You should be more upset."
But the word was so entirely foreign to Betty that she didn't have any response other than puzzlement. Once she and her husband learned more about it, she at least began to understand a few things to help her son adapt. For example, the more routine and order David had in his life, the less he would act out and lose control. When he was home, he spent all of his waking hours setting-up mini gas stations all over the living room floor. (To this day he loves gas stations.) Sometimes he would take over the backyard, cutting out letters of the alphabet, putting them on sticks, and placing them all over the lawn in what looked like a post-modern art installation. This kept him busy and content.
When asked how she bonded with her son, who was so seemingly emotionally vacant, she responded, "I didn't. I felt that in his mind, I wasn't a mommy; I was the Person Who Got Things For Him. He would point to a cabinet or a closet, and I would retrieve what he needed for his activities." Betty says this with a matter-of-factness that comes from years of not taking it personally.
In fact, as David grew up, there were many things that Betty had to swallow and not take personally. First there was her extended family, who didn't understand David's condition, didn't enjoy being around him, and basically abandoned her and her husband. "That still hurts," she says. She misses spending the holidays with her family, who haven't seen her or her son since he was a child.
Then there were the teachers and doctors that she had to deal with who were under the very mistaken idea that autism was the mother's fault. She developed a thick skin about this early on. "Any new doctor I took him to, I would first ask, 'Are you one of those people who will tell me this is my fault?’" You would be surprised how many people responded, "Well of course it's your fault. It starts with the parents." Betty would politely stand up, grab David and her purse, and exit.
The schools at the time were also not prepared to deal with someone with David's challenges. By the time he was seven years old, a teacher at his San Francisco school told Betty that he was a hopeless case and needed to be institutionalized. With nothing to compare her experience to and all the years of struggle she had with David, still something inside her said that this was a wrong move. "I wasn't ready to give up on him," she says.
They had heard about a good program at a school in San Rafael and moved here to enroll him. With thoughtful attention, patience and expertise, the teachers at the school made an almost overnight change in David. "He began talking almost immediately," says Betty, who notes that he rarely spoke a word before that. David made friends with other autistic children and thrived in the predictable, safe, and stable environment that the school created for him.
Over time Betty was indeed able to "bond" with her son. The internal life of a person with autism is still somewhat of a mystery, but we do know from books written by people with autism about their experiences that the desire to make connections with people is very much within them; it is the attempts to do so that are so difficult. Betty first realized this upon the death of her husband, Bill. When Bill first went into the hospital for what they assumed would be a short visit, Betty told David that his dad had gone on a fishing trip. Abstract things like illness seemed impossible to explain to her son. Things at the hospital began to worsen, and after six months Bill passed away.
During the entire time David never asked about his father or seemed to wonder where he was, continuing on his daily routines and detailed building and constructing around the house. Betty chose not to tell David—how do you explain something as profound as death to a child, let alone a child with autism? When the time came to organize her husband's things, she removed his car from the garage and put it in the driveway for potential sale. That was when she realized that David was indeed missing his father. When he came home from school, he saw his dad's car and went running through the house saying, "Dad! Dad!" "Oh no!" thought Betty at the time, "What have I done?"
These days, it is apparent just how much David loves his mother, and how attached he is to her. Over the years he has become very affectionate, and he used to love to help his mother around the house. Betty has Alzheimer’s now and is living in an assisted care facility. However David sticks religiously to his visitation schedule with her. Part of his daily routine is a "countdown" of sorts about when he will see his mother again. (He visits her every other weekend at her nursing home). "Ten days, two weeks!" he says. "Home visit!"
Both his group home and the staff at PDS have given David a safe, solid, and structured routine in which he lives his life to the fullest. He swims at the College of Marin, goes bowling, eats out, and plays Bingo at the San Rafael Rec Center every week. He has become a fantastic table tennis player and a formidable opponent at the PDS table tennis tournaments.
David enjoyed being employed at Borders Books and Music in San Rafael until it closed in 2011. Since that time, David got a job with Diego Trucking where he is cleaning offices and doing a great job! He is known at PDS for making sure everyone has napkins at lunch and clearing our tables for us. As he has matured he has become sweeter than ever.
David's self-esteem is high as well. He really feels like a "good guy" (he often speaks in the third- person about himself, an aspect of his autism, saying, "You are a good guy, David!") and he gets a lot of person- all satisfaction from helping his friends. For example, he always makes sure everyone has napkins with lunch, and when his friends finish he throws all the trash away.
Years ago when Betty could still remember and speak she said, "Sometimes I think about showing up again with David at my family's house on a holiday," smiling slyly when she said it, but with hurt still visible around her eyes. "I think they would be very surprised to see him now."
David and Betty Burns are both amazing people and a real inspiration. We are so happy to have had them in our lives here at PDS.
David, you are indeed a "good guy"!
- September 2016