Don’t you hate it when parents take their rowdy children out in public, letting them run around, doing rude things, making noise? Perhaps you’d really like to grab one of those parents and say: “Why don’t you teach your kid how to behave?”
Maybe you’ve done something like that. And maybe you were talking to the parent of an autistic child.
Children can be messy, obnoxious, disgusting creatures one minute, lovable angels the next. They defy you, challenge you, frustrate you. You just keep trying, knowing that they go through phases, that they will grow out of this behaviour or that. You are rewarded when they smile, run to you happily when you come home from work, when they rush home with good news from school.
For parents of severely autistic children, hope comes in smaller servings. They rejoice at a moment of eye contact, a brief smile, a complete sentence.
It’s a mistake, though, to lump all forms of autism together. Autism spectrum disorder is a range of conditions defined by certain behaviours, and by saying that, I’m already uncomfortably deep into technicalities and at the extreme range of my knowledge.
This I know: At one end of the spectrum are people who succeed in spite of — or even because of — their autism. At the other end are those who will forever be dependent, forever children. This I know, because my family includes both.
We knew our son was different. His siblings read all kinds of stories; he never read fiction, but devoured National Geographic and other factual writings. He had little patience for make-believe, but was devoutly literal.
He said his hobby was “knowledge,” and he absorbed immense bodies of facts. But he could never figure out how to get along socially. When he was in Grade 9, an understanding principal gave him free rein of all high school courses, which he tackled enthusiastically. He was so uncomfortable at school, he dug in and finished high school a year early.
He has done well at several pursuits, but working with people causes him great anxiety, and that has held him back. As an adult, he has been diagnosed with Asperger syndrome, part of the autism spectrum. That explains many things from the past, but doesn’t explain what will happen in the future. He is still struggling. We are optimistic that when he learns to manage his anxieties and his responses, he will be able to make good use of his considerable talents and creativity.
At the other end of the spectrum is Meghan, our granddaughter. She was born with a severe cleft palate and other deformities, and was a day old when she was left at the door of a Chinese orphanage. She spent her first two years in a crib, never being held, never knowing affection, never being spoken to. Her only food was infant formula, and when she was adopted at the age of two, she was severely malnourished and unable to walk. Because she didn’t respond to sounds, it was thought she was deaf.
She has had some surgery to correct physical defects and will have more. She appears to have normal hearing in one ear. She eats a varied diet and is lively and strong. But now, at five years old, she does not talk, although she has learned a few signs. Her responses to people and events around her are increasing, but she is still very much in her own world.
She’s a handful. While her mind doesn’t work in a “normal” way, she is intelligent and curious. She is watched constantly, but she can slip away if attention is diverted for a second or two. On one of these occasions, a police officer brought Meghan in from the street and chewed out my daughter-in-law for being a bad parent, which is absolutely untrue.
That often happens in the world of autism. Parents’ skills and diligence are questioned; their children are labelled as unruly and undisciplined. They are the recipients of considerable unsolicited advice, most of it useless.
Just as autism is a range of conditions, so are the people with autism a range of individuals, from high achievers to the totally dependent. They all have different experiences, but what they all need is understanding.
