a collection of columns, sermons and musings on a variety of current issues
“Autism” a diversity-theme sermon by Rev. Brian J. Kiely Unitarian Church of Edmonton September 11, 2016
This month we are asking “Where Do I See Diversity?” In addressing this theme in Sunday services I wanted to stay away from some of the more obvious areas like race and gender and orientation. Today we consider individuals who are not ‘normal’ – who are ‘damaged’ in some way. This could include people with physical restrictions, mental illnesses, who live with the effects of brain damage and a few other categories. In short I am thinking about anyone you encounter in the street who might cause you to start…or look away in embarrassment.
Of course this is an enormous field of play, and so I have chosen to focus on a specific example trusting your intelligence to apply the basic principles to other situations. I picked something about which I am just learning for personal reasons: autism. Later I will define this condition, but first I would like to invite you to experience two video clips about what it’s like to live with autism.
It’s possible you haven’t noticed this, but I am kind of a verbal guy. Words matter to me. Shaping words, organizing words, speaking words. Some people communicate through art or music or touch. I primarily use words.
So when someone can’t use words in return, I am thrown. I get out of my element. I get uncomfortable.
I don’t think that’s particularly unique. In last week’s service I suggested that embracing diversity requires that we stretch out of our comfort zones and our familiar habits. In order to become truly accepting of diversity we have to open ourselves to really getting to know someone who is very different from us. We have to strive to build a connection in ways that meet the needs of the other person as well as our own. In order to do that we have to understand this person with whom we are trying to build a relationship.
Over the last nine months I have been slowly getting to know a severely autistic young man named Hunter Slevin. You have seen him around the church, no doubt, accompanied by his family and his service dog Linus. Hunter is non-verbal, nor can he write. That’s not to say he can’t communicate. He can, and very well on a limited number of subjects and feelings. But for someone as verbal as me, building a relationship with him has been a challenge. My prejudices, my fears, my lack of creativity keep tripping me up.
You have probably heard of the phrase Autism Spectrum. This suggests that this particular condition touches people in a wide range of ways. In fact each person’s autism seems to be unique to them. The videos we saw are attempts to give some sense of what it might be like. They are not definitive or absolute. They are just a first step in helping the rest of us understand the kinds of things that affect people with Autism.
Some people with milder forms of this condition find ways to function successfully in the world of the majority. In fact for some the qualities that accompany their autism – qualities like intense focus – are what helped them become so successful in their fields. Actor Dan Ackroyd, Director Tim Burton, Actor Darryl Hannah, Wolfgang Mozart (whose music we hear today), Isaac Newton, Emily Dickinson and Andy Warhol are people who have acknowledged or are suspected of having Asperger’s Syndrome or Autism.
And increasingly people farther along the spectrum are standing up and demanding to be heard. Temple Grandin is an aggressive activist for autism and a frequent talk show guest. With the hep of her Dad Carly Fischman wrote a book and produced the video you saw earlier.
Donna Williams is autistic but wrote a very compelling book in 1994 entitled Somebody Somewhere.
After twenty-five years of wondering what sort of stupid, mad or disturbed person I was, I had stumbled across a word that helped explain “my world”. That word was “autism”.
All I knew of the word had been a dictionary definition – “withdrawn”. So what, I had thought, knowing I had been withdrawn throughout much of my life.
From library books, I found a handful of conflicting theories. Throughout the ages, autism had gone from being seen as being caused by everything from possession by fairy spirits to bad parenting. From psychosis to emotional disturbance. From retardation to a sleep disorder, and most recently as a developmental disorder occurring from either before or shortly after birth that affects how the brain uses incoming information.
There is a bit of truth in most theories, but the total truth is probably to be found in none. Theories weren’t relevant to me. What mattered to me was how my difficulties crippled and tied up the me inside.
Autism had had me in its cage for as long as I had ever known. Autism had been there before thought, so that my first thoughts were nothing more than automatic, mirrored repetitions of those of others. Autism had been there before sound so that my first words were the meaningless echo of the conversation of those around me. Autism had been there before words, so that ninety-nine percent of my verbal repertoire was a stored-up collection of literal dictionary definitions and stock phrases. Autism had been there before I’d ever known a want of my own, so that my first “wants” were copies of those seen in others (a lot of which came from TV). Autism had been there before I’d learned how to use my own muscles, so that every facial expression or pose was a cartoon reflection of those around me. Nothing was connected to self. Without the barest foundations of self I was like a subject under hypnosis, totally susceptible to any programming or reprogramming without question or personal identification. I was in a state of total alienation. This, for me, was autism.
So my first learning is that autism is not ‘retardation’ but more of an information processing problem. For most of us stimulus or information goes in, is processed and filtered for awhile and then a response comes out. It seems that autistic people have problem with one or more steps in that process.
In the first video we saw, the little boy being overwhelmed in the mall caught me off guard. I am so used to tuning out the distractions in malls and public places that it simply hadn’t occurred to me that others might have a problem with that. Most of us have some ability to decide what we will attend to and what we will shut out. It protects us from being overwhelmed with sensation.
Some autistic people do not have that safety feature installed. Can you imagine what it might be like to be unable to filter extraneous sights and noises? I think it would be a continuous assault and very disorienting. When it becomes too overwhelming, there is a meltdown. Those can be quite scary for everyone. So it’s important to help autistic people find coping mechanisms and to recognize the signs that the pressure is building.
But it’s not about managing the person or restricting them. It’s about helping them find what they need. As I said earlier, “We have to strive to build a connection in ways that meet the needs of the other person.” We have to!
Hunter, with help, has developed coping mechanisms. In the video clip the little boy had a small stuffed dog that gave him something he could control. In Hunter’s case you might see him with an iPad usually showing either Pride and Prejudice or an Esther Williams musical. He knows how to call up his movies. He gets to control that input. The familiar sounds comfort him. You might also see him with a belt or leash that he twirls with marvellous dexterity. His mom calls that his flippy. By twirling this familiar thing in his peripheral vision he is able to control some of that stimulus and manage his world.
I have learned these few things about Hunter and that has helped me grow more comfortable wit him. And that’s the point when we are striving to accept diversity. The inability to connect across some gap, whether its cultural, linguistic or medical is as much our problem as it is anyone else’s.
The other thing I appreciated about both videos were the expressions on the people observing the struggles. Fear, suspicion, frustration, distaste, disgust at what was judged to be poor parenting. All of these crossed the faces of the people in the videos. I know those expressions because I have worn them from time to time.
It might be that the majority of the population can filter outside stimulus better, but we seem to have a tougher time filtering and managing inner judgementalism. That’s one of the biggest barriers to increasing acceptance of diversity. But we can do it.
Last week I told you of my elder daughter not seeing racial or religious difference as a ‘thing’. This week it is younger daughter’s turn. As our families have grown closer, she has simply embraced Hunter. She sits near him in church, guides him when he needs it and is able to help him focus and stay calm just by looking into his eyes – by seeing him as a person. He is clearly growing closer to her.
Last week our DRE Lauren Kay said that Hunter would be welcome to try the children’s program. He was given the choice and immediately went with Elora into the class, a big smile playing on his face. I’m told it went well.
Like most people, Hunter just wants to be included sometimes. He might not be able to do all the same activities, but he can do some and perhaps even more importantly, he can feel a sense of belonging.
I don’t know where this natural skill and empathy comes from in my daughter…certainly not from her Dad, but I am very proud that she has it and can serve as my teacher. I asked her what she wanted me to say to you about Hunter and other people with autism. She said, “He is just him. We just have to see him for who he is and learn to just be with him.”
Author Donna Williams says much the same thing:
Autism is something I cannot see. It stops me from finding and using my own words when I want to. Or makes me use all the words and silly things I do not want to say.
Autism makes me feel everything at once without knowing what I am feeling. Or cuts me off from feeling anything at all…
Autism makes me feel sometimes that I have no self at all, and I feel so overwhelmed by the presence of other people that I cannot find myself. Autism can also make me so totally aware of myself that it is like the whole world around me becomes irrelevant and disappears…
The most important thing I have learned is that AUTISM IS NOT ME.
Autism is just an information processing problem that controls who I appear to be. Autism tries to stop me from being free to be myself. Autism tries to rob me of a life, of friendship, of caring, of sharing, of showing some interest, of using my intelligence, of being affected…it tries to bury me alive.
The world is filled with people who challenge our ability to affirm their inherent worth and dignity. Some are ill, some are broken physically or spiritually, some are just nasty people. The challenge for Unitarians remains: How do we find a responsible way to affirm that inherent worth and dignity? It is not easy, but when we have the opportunity to build a bridge to someone new, someone very different, I believe we are morally obliged to try out best.
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