In previous posts, I’ve written about how a diagnosis can lead to re-examination of your life – what went right, what went wrong, and what wasn’t what you thought, for better or for worse. My last post prompted me to do a lot of this examination – and I find myself thinking a lot about what went right for me.
In the autism community, they say that if you’ve met one autistic person, you’ve met one autistic person. There is a great deal of variability in what works for each of us, so it’s hard to generalize. In thinking about these experiences, I’ve often hesitated to share them, because I don’t know how much of them generalize.
What worked for me may not work for another person on the spectrum. But, I know a lot of parents and teachers follow this blog, and if there is anything to be learned from my early experiences, I certainly want to pass it on. So, I’d like to write a bit about it, and you can take from it what you will.
Since I wasn’t labeled as autistic back when, none of what I’ll recount here really counts as “therapy” or “treatment” of any kind – and in many cases my neurotypical classmates benefitted from it just as much as I did. A lot of it has to do with approach, attitude, and social environment.
Presumption of Competence
The teachers and caretakers that I most cherish in my growing up years presumed competence. Some to an amazing degree. We often use the phrase “presume competence” in the context of developmental disabilities in a very specific way – because the presence of a diagnosis often leads to a dismissal of potential and abilities that may be attained by the individual, sometimes in a non-traditional way.
My Kindergarten teacher is the first person who comes to mind when I think about presuming competence. While she was the first person to identify some of my challenges, she was also adamant about my strengths. Presuming competence was a way of life for her, which actually extended beyond kids like me who struggled in specific areas. She was also known for stretching accepted assumptions of what any child could do. She was often proven right.
In her class, we tried our hands at woodworking, sculpting, puppetmaking, candlemaking, and other creative hands-on activities. She emphasized multi-sensory learning, and active participation. Things that were more abstract, she often found ways to make more concrete. She taught mathematical concepts, for example, using the hand-counting system Chisanbop. She kept a full-size anatomy model in corner of her classroom, which we used both as a puzzle, and a method of learning about the human body.
When she wanted to make point about smoking, she did so in a very concrete fashion. One day, she appeared in the classroom one day bearing two containers. They contained real human lungs – one from a young person who’d died in an accident, one from a smoker. While some might think Kindergarten age would be too young to handle this, I didn’t find it so – most of us seemed to respond with curiosity and interest. It’s a curiosity that’s still with me. And, well, I’ve never even been tempted to smoke.
Acceptance and Empathy
In the autism community today, there’s a lot of talk about acceptance. I believe in it wholeheartedly, because I experienced a great deal of it early on. It’s one of the things I think went most right in my early life. I can think of many examples of it in my early life, but one of the environments that most defined it for me was the day care program that I went to from Kindergarten to Third Grade.
My Kindergarten teacher had been the first person to recognize some of my challenges, and mentioned them to my parents. Compared to my peers, I was “emotionally immature” -- and with my level of skills, she recognized that she could not send me on to First Grade. She went out of her way to work with me, but also recommended to my parents that they get me some additional help.
As my parents both worked, after school I typically stayed with a babysitter – but I wasn’t really thriving there. My sensory issues and social struggles were already driving me to withdraw, and my babysitter didn’t seem to notice it much. Though she was a good person, she had a very narrow view of her role. It was her job to watch me and keep me safe until my parents arrived. That’s it – it was just a gig to make some extra money. Whether I spent my time there alone in the dark with the TV, or with other kids, really didn’t mean much to her as long as I was well behaved.
The program my teacher recommended was very different. Although it was also run out of the proprietor’s home, it’s wasn’t a side thing. It was their primary business, one she and her husband had opened with the purpose to help children grow and thrive. They blacktopped a large portion of their yard, installed a jungle gym, and other amenities and opened up for business. They’d since built a great reputation. Most kids did well there, and they especially had successes with kids who had challenges of various types.
It was the only environment I can ever recall where I felt completely and truly safe. I was a kid who didn’t fit in with the others. I was small, sucked my thumb (until age 7) and had interests that were more consistent with a younger child. Soon enough, this began to prompt teasing from the other kids at school. I was a “baby,” a “shrimp,” and a “midget.” I’d come home crying, unable to understand why I was targeted so and my parents would have to try to explain.
At this new program, this didn’t happen. One of the most central things I remember about the experience is how strong a stand they took against such behavior. Taunting and bullying were simply not tolerated. They also understood that it wasn’t enough to tell a child what NOT to do, they also had to tell them why, and give them an alternative. That alternative was respect, and acceptance.
Today, in discussions about autism, there often seems to be a lot of angst about special interests that are atypical in nature. People worry about whether they should discourage said interests, because they could result in the child being targeted. At this program, they took the opposite approach. We were taught that everyone is different, and had different likes and interests. The fact that someone’s interests seemed “strange” by our standards was never an excuse to taunt or exclude.
In terms of acceptance, they realized that judging my interests or trying to discourage them, would set the wrong example. Kids are more skillful than we think at reading between the lines. Interestingly, the long term result of their acceptance resulted in my eventually developing interests that were more in step with my peers. Why? Those that accepted my interests and showed interest in them connected with me. That connection drove me to be curious about the things that they liked. Eventually, I came to really like some of things that they liked, and adopt them for my own.
While this might not happen with every child (and shouldn’t be the goal), I don’t find the fact that it did occur that surprising. Think about it – when’s the last time you reacted positively when someone put conditions on friendship or caring? If they said, “I’ll only like you if you don’t like X”? Or conversely, “I’ll only like you if you DO like Y,” are you more likely to like X or Y? Or do you find yourself pushing back – and standing up for your own individuality and resenting someone who would attempt to force you into their own mold? Discouraging special interests tends to send a similar type of message, and the people who ran my day care program understood that. They never made me feel less than for me differences. As long as my interests were not harmful to anyone else, they were respected every bit as much as my peers’.
Another attitude I remember us all being taught was empathy – to imagine ourselves in another person’s shoes. Some of this was taught explicitly, through example, or direction, and some we learned organically, through interaction with others in the group. One day, I remember getting angry one of the other kids. In my estimation, he’d seemed grumpy and unfriendly. Worst of all, he didn’t follow the rules – a particularly heinous sin in the eyes of someone as rules-bound as I was.
I remember being pulled aside by one of the adults…I don’t remember what she said, but I do remember clearly the impact of what she said. It stopped me cold in my tracks, and transformed my anger to curiosity and concern. Eventually, I came to learn out that there was a reason for his withdrawal, pain, sadness, and anger. His mother had recently died in a terrible auto accident. His father had been behind the wheel. One afternoon, I remember trying to talk to him.
He was sitting on a path up that went up to a wooded area of the yard, an area where all of the kids used to like to sit. The hillside had been planted with honeysuckle, and it was colorful, cheerful and smelled wonderful. We’d sit there in the sun, sometimes picking the blossoms and eating the sweet nectar found inside. He did not show interest in those sorts of activities. He just sat there, staring at his feet.
I tried to talk to him, but his responses were very short, and eventually he fell into silence. I remember just sitting next to him, hoping that just my presence would let him feel some kind of comfort. I hope he felt my concern, but I’ll probably never know. What I do know, is that eventually he seemed to begin to heal. And, I am absolutely certain that the gentle, but firm redirection I got the day I was angry with him was not the only one that happened in that place. I’m sure that at least a few occurred when others responded badly to me.
What I learned from that, and a number of similar experiences, was not to jump to conclusions about people. I learned to react first with concern, rather than judgment. And I learned how important it is to look out for one another. It’s something that I learned well, and I believe that others did, too. Studies have shown that having friends protects strongly against bullying. Even one friend reduce the chances of being attacked. When I think back to this time in my life, it bears this out. In a community where were were taught respect for differences and care for one another, I can’t remember being bullied once. And if anyone at school dared try, the close-knit community that came from my day care banded together and refused to tolerate it.
They’d seen adults take a stand against it, and would not stand for it in peers. The effect lasted for years. When I left the state, and came back years later, they reached out to me again – as if the five years in between hadn’t even occurred. Unfortunately, by then I’d experienced the opposite realities that existed out in the world, and I no longer believed that such friendship was possible. I turned my back on it, a decision that saddens me to this day.
While my early life was certainly not perfect, I am deeply grateful that I had early caregivers, teachers and mentors who exhibited these attitudes. Had I not, I firmly believe that I would not be where I am today. When a child has a diagnosis or difference, it’s easy to get caught up in treatments and therapies to the exclusion of everything else. But my experience is the right attitude can have just as much impact. It shapes how you relate to the child, and how they relate to you. Most importantly, it shapes how they feel about themselves.
That means everything.
When I try to pinpoint the factors that have helped me best reach my potential, the various turning points in my life that meant the difference between ability being recognized or overlooked, the same word repeats again and again. Acceptance.
There are many that hear the term acceptance and think that it means giving up – simply throwing up one's hands and ignoring the struggles and challenges of the individual. My experiences tell a different story. When I think of the people who accepted me most, they were also those who asked the most of me. What set them apart was not a difference in expectations, but in how they worked with me to achieve them.
Acceptance is about recognizing that an autistic person is, and will always be, different but not less -- even as some challenges are addressed.
Accepting an autistic person is accepting the autism as part of that person. Challenges can and should be dealt with, but the neurology, how we see the world is unique and should be celebrated.
So what does “presume competence” really mean? And how and why should we carry out a presumption of competence?
In an interview, Douglas Biklen explained: ”Assume that a child has intellectual ability, provide opportunities to be exposed to learning, assume the child wants to learn and assert him or herself in the world.”
The message of presumption of competence is of encouragement and acceptance. The presumption of incompetence sends a negative message, a message that says no matter how much one tries, success is out of reach.
For disabled people, especially the ones who need more support, who can’t communicate through speech or who have other communication difficulties, this negative message is an added hurdle, yet another obstacle towards acceptance, inclusion and respect.
Cheryl Jorgensen, PhD: The Least Dangerous Assumption
- Examine your attitude —practice saying, “How can this work?”, “How can this child
- Question your stereotypes —how someone looks, walks, or talks does not tell you
about how they think and feel.
Demonstrations of Chisanbop
A teacher demonstrates Chisanbop:
A child applies Chisanbop: