I am the mother of two young children living with the Autism Spectrum disorder. My oldest child is a seven-year-old boy that is located between moderate to severe on the spectrum. My youngest one is a five-year-old girl that is considered to be on the lighter end of the spectrum. From the time prior to the diagnosis of my son (which happened at 3 years old) until now, I have encountered numerous situations with strangers that were difficult due to their lack of knowledge about autism.
- Many people believe that people with autism are all mentally challenged. The first heartbreaking situation happened at the local public pool. My son loves water. He is also considered to be non-verbal as he has less then ten words to express himself. He was a month away from his third birthday. For the prior year or so, he had been showing his excitement by flapping his hands. I thought of it as a cute way to show how excited he was about things in life. He was also making various sounds, accompanying his hand flapping. We were standing a few feet away from two women with their ten-year-old sons. The boys were play fighting with towels. My son was getting excited and was getting close to the action. As one of the boys almost backed up into him, his mother told him to move away as he was about to hit him with his towel. I was guiding him away to a safer distance when he replied: “Why should I move for a little retarded boy?” Shocked, I waited for an admonition from his mother but it never came. I was too heartbroken to defend my son, which made it even worse. I held him tight, then left the poolside.
- People tend to make fun of people with autism as they consider them to be “weird.” A few days prior to my son’s third birthday, we went to the local park’s wading pool. It was a hot sunny day. My son was playing in the pool, flapping his hands as he was excited to watch other kids play, but refused to join in. A mother sitting beside me introduced herself. I soon noticed that she was observing my son closely. We started to chat while watching our sons play side by side. Out of nowhere, she asked me if his behavior seemed “weird” to me. She then asked me if I ever thought that he might be autistic. Shocked and hurt as it was months prior to the diagnosis, all I could think about on our way home was that my son had been labeled as “the weird kid.” I love that kid no matter what; he is one of the loves in my life and I can’t bear the thought of him being misjudged.
- People seem to think that a distressed child with autism is just a brat that his parents can’t control. My son was five years old. We were at the zoo. He was sitting in a special stroller and was trying to stand up in order to view the bears better. I unlocked the safety belt and took him in my arms to make him higher. My husband took our daughter to see the monkeys in the meantime. Suddenly, he asked to go down on the ground and I put him down, not expecting him to try to go down into the bears’ den. Panicked, I decided that it was time for him to sit down in the stroller. He fought with all his might, sending my glasses flying. Parents gathered, making comments about bad parenting and him acting up like a brat. Nobody thought of him as being distressed by the fact that he was restrained, stuck in a stroller and being prevented from seeing the bears. Nobody realized that he could not see the possible danger of going down into the bears’ den. He has a big teddy bear at home just like these bears. All he wanted to do is to give them a bear hug. Instead, people judged him as a brat!
- People mistake hypersensitivity for fussiness. I was sharing my concerns about the lack of options for eating for my son and the gagging reflexes of my daughter regarding food. I thought this colleague of mine would help me out by suggesting ideas. Instead, she blurted out that I was too soft and that my kids were just being fussy. What she didn’t know is that my son’s perceptions of texture, mixes, colors and smells can make him feel sick or be downright painful, just like when he gets his hair cut. For my daughter, the size of the food, even if it seems to be bite-size to us, can make her gag. Certain textures will also be literally sickening. This is a normal issue for people with autism; unfortunately, a lot of people do not understand that.
- People think that if a person has vocal chords, they can talk no matter what. Family can feel like strangers too, sometimes. My parents have been telling me over and over to keep talking to my son in order to teach him to talk (as if I was not already doing that). What did they think? That I surrounded him with silence and avoided communicating with my own son? The fact is that the brain of a person with ASD processes information differently than the brain of a person without it. It also matures at a slower pace. He has a 50% chance of talking before the age of 7 and the percentage diminishes as he grows older. He may be able to talk someday. I never thought that he would say the word “Mommy,” but he surprised me with it when he was 4½ years old.
- People think that a parent explains that her child has autism so as to get special treatment. I was in the children’s hospital for my son to see the doctor. I expected the waiting period to be long. As I was registering him, I mentioned that if he was starting to become impatient or distressed that it was expected, as he has autism. I did not expect to see the doctor faster and I explained that I just wanted them to understand his behavior if it occurred. I just wanted them to be informed, aware and understanding. When I saw the doctor, whom I did not see before it was our turn; she said that I should not use autism as an excuse for his behavior or to get special consideration. When I asked her what she knew about autism, she replied: “Not much, only that “these people” are “different.” “What’s up, Doc?” I felt like replying. You would think that a doctor would know better.
- People think that autism is an excuse for “soft” parenting. During a discussion with some friends, parents were sharing advice about how to deal with difficult behavioral situations as far as their children are concerned. When I had mentioned that time-outs were not effective with my children, some people sneered. Intrigued, I explained that even specialists agreed that children with autism would not understand the link between the misbehavior and the time-out, so it would be useless in their situation. We have to deal with a situation immediately, explain it and repeat as often as needed. They will eventually understand and adopt a positive behavior instead. For example, it makes more sense for my daughter to pick up a mess instead of having a time-out. She will understand that such a chore is not fun and that it takes away some of her playing time. Also, she will understand that every time she makes a mess, she must clean it up!
As you can see, people who have seen the movie "Rain Man" figure that it is the same reality for anyone who has autism. They think that people with autism should adapt to their lifestyle and expectations, without making any effort to change any misconceptions about this disorder. In fact, their ignorance about ASD is often due to a lack of interest about it, as they see people with special needs as people looking for special treatment. I think it is time for these people to get some information and become involved (instead of judging inaccurately and with a certain cruelty). Either way, they should always consider a person living with the Autism Spectrum disorder as a human being that has feelings and rights like everybody else.