Autism Appearances……are Deceiving

There are 2 stories that I want to tell. About appearances, and how they are not necessarily reflective of reality. One is about autism, the other is not. In both cases the families live on the edge, at the extreme end of a theoretical bell curve that defines a normal life.

I want to tell these two stories because I worry about judgement. I write this blog because I want to spread autism understanding, I want to go one step beyond awareness. Yet there is a real risk involved. Because we all see the world through our own uniquely myopic lens; and for each of us, our lens is truth. We think we know best, when in fact, we do not. I am talking about how autism appearances… are deceiving. I am talking about judgement.

My first story is about autism.

Once, at an autism parent support group, a parent told me about the troubles she was having with her teenage son, who had uncontrolled fits of aggression. She was forced to lock him in his room at times, to protect him, and herself, and his siblings. She tried to make it a “teachable moment” for him by telling him: “first be quiet, then come out”. Her son had difficulty calming himself and regulating his emotions, which is not unusual with autism. Also typical of a teenager, he rebelled from time to time against parental control.

On two occasions he rebelled against his confinement to his bedroom by opening his second floor bedroom window and climbing down and out of the house.

On the first occasion the window was unlocked, and he slipped out and down into the bushes. So the family locked the window. On the second occasion, the family was stunned to discover that he was able to open the window lock. Miraculously, he was uninjured, at either descent from the second floor bedroom. In both cases the family was immediately aware of his act and immediately brought him back into the house.

A neighbor who did not know the family, who had heard some commotion, who had seen the child climbing out of the bedroom window, called the Children’s Aid. The neighbor meant well but clearly did not understand the situation. She heard a boy screaming in his room, she saw a boy attempting to escape unsafely through a second floor window. The neighbor may well not have known he was autistic: nor did she have any understanding of autism, and in no way could not relate to the challenges that the family next door faced. When the Children’s Aid showed up at her house, the mom was humiliated and embarrassed. She went on to explain to our group the lengthy process she was forced to go through to convince Children’s Aid that she was a capable parent, and that the family had taken every precaution to protect their son. I wondered at the many families who could not afford the high level of security services they had already installed. It truly frightened me, how vulnerable a family could be, how a loving home could be inaccurately perceived as not providing for their child’s needs. Autism appearances are deceiving.

My second story is about poverty. This was a story I was told years ago by my grandmother, about a family that lived down the road from the family farm in rural Quebec. They had 13 kids in a small house without any conveniences. They were very poor, so poor that there were only 3 or 4 pairs of shoes for the children, so at any given time only 3 or 4 kids would show up at school, on a rotation basis. It was not long before the community had figured out the connection between poverty, shoes and attendance at the school.

Several charitable groups tried to help the family out. They had a common and admirable goal, to see the children properly loved and cared for. The first group that intervened gave the family money to buy shoes for the kids. But the father used the money to buy beer and cigarettes. Still, 3 or 4 children whose turn it was to wear the shoes, came to school.

The second charitable group bought shoes for the children. But the father sold the shoes and used the money to buy beer and cigarettes. Again, only 3 or 4 kids at any given time would show up for school.

Finally a third group decided that the children lived in neglect and needed to be rescued. So the 13 children were removed from the family home and dispersed to kind, well meaning families in the local town.

To everyone’s amazement, something surprising happened: one by one, the children returned home. They left their comfortable, warm and well appointed homes with plenty of food and clothing, and even properly fitted shoes, for their crowded, squalid, tiny rural home. Why? My grandmother told me why: because that was home, and those children wanted the life they had known, and they wanted to be with their real family. They slept best with 6 siblings in a bed. They did not like having their own bed. And their dad, who was judged by the community as a lazy smoking good-for-nothing drunk, was still their beloved dad. The trappings of life could not take the place of their reality, no matter how foreign or undesirable that reality might seem to the majority of us.

I remembered this story, told to me many years ago, after hearing that story told by a mom in my autism support group. While the circumstances were not at all alike, the issue of judgement was common. It reminded me, if I see something or read something I do not understand, to consider perhaps I must wait until it is my turn to wear the shoes and attend school. I hope that you are likewise reminded.


About lifewithautistickid

I am a Chartered Professional Accountant (CPA), with an MBA and BA. I have been fortunate to have had an extraordinary life with an autistic kid. I have learned so much from him about people and life in general. I want to make a difference by sharing my extraordinary experiences. Raising a son with severe autism and developmental disability has made me realize how we who are "normal" do not understand "disability". Instead of trying to "fix" people like my son by burying them in the community, I would like to see a society that respects and honors them for who they are. The potential is endless, in a world that can celebrate with sincerity, the dignity of the individual. Love and blessings to people of all "disability" . That includes you and me!
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