Today, during a conversation with a colleague, the subject of autism came up. Said colleague made a joke about autism, and I have to say that it didn't go over too well with me. My reaction was somewhat more caustic than I intended, and apologies were made on both sides of the table.
Said exchange made me start thinking about why I reacted the way I did. Why was I so sensitive about it? I realized that there were a great many things that the general population doesn't understand about parents of children with autism. So, this is me, laying it out on the table. No offence is intended. Those who know me know that I call a spade a spade.
1) We hate the word "retarded". This word has gained a stigma in recent years as autism has reached epidemic proportions. Many of our children, in spite of their inability to communicate, have IQs that are off the charts. And even if they don't, the word "retarded" is such a minimizing, demeaning word. It takes all that they are and reduces them to an image of a drooling idiot. This word does not make its way into our vocabulary. Neither does that ridiculous, flapping hand gesture people use along with the word "retarded". You realize what people are mimicking, right? They're mimicking an individual with cerebral palsy. Specifically, these individuals have spastic hemiplegia or hemiparetic CP, which means they are completely or partially paralyzed on one side of their body due to brain injury, most often as a result of infant stroke. So, when you're uttering the word "retarded" and flapping your arm against your chest, you are making fun of someone who, despite being blessed with a body with severe limitations, still has much to offer the world if people will only stop and notice. Congratulations.
2) We are grieving. No matter how upbeat and positive we try to be, we are grieving for our child. Many of us watched our children as toddlers begin to change into something unexpected. Some of them slipped away. Some of them stopped talking and never uttered another word. Some of them began exhibiting odd behavior that we were powerless to stop. In any case, jokes leveled at our child, our child's behavior, or our child's condition, is about as classy as passing gas in a five star restaurant.
3) We are ultra-sensitive. We have been given dirty looks in stores, churches, and restaurants. We have been left out of social gatherings, birthday parties, and even had our children passed over at family events because the "normal" children garner more attention. (And lest my own family think I am talking about them, I am not. I am talking, in general, about what parents of autistic children experience.) Our "normal" children hesitate to invite people over because their sibling is "different" and they're afraid of what other kids at school will think. Pre-autism friends have disappeared into the woodwork, leaving space for friends who actually get it. We know not everyone is going to feel comfortable around our kid. We accept that that's the way it is. We also hate that that's the way it is.
4) We cringe when you say that a problem child needs to have his ass whooped. Yeah, yeah. We know you're from that school of thought that thinks a good ass-lickin' will solve that behavior problem. Walk a mile in our shoes. The old mantra that says, "My parents spanked me as a child. As a result, I developed a psychological condition known as "respect for others" doesn't really apply here. Do we discipline our children? Yes. Disabled or not, children need discipline. BUT. Think before you decide in your head what would actually help my kid. I have seen things you haven't seen and I have dealt with things you haven't dreamed of. I can no more beat the autism out of my kid than I can smack the ignorance out of you.
5) We think we're bad parents. We question ourselves. Over and over again. Some of us even blame ourselves for our child's condition. It may not have any logical reasoning and it may not make sense, but we do it anyway, because that's our kid, and we feel responsible. We think we can do better, try something new, change their diet, change their sleep patterns, change their medication. Some parents spend thousands and thousands of dollars trying to figure out what will alleviate, eradicate, or control autism. Then there's the other group of parents who decide they'd be better off taking a pill themselves. It's a fact.
6) Some of us don't care what you think, and some of us care too much. Some of us have reached the point where we know that the only important thing is parenting our child the best way that we know how and that giving them what they need is top priority, and we couldn't care less about your opinion of this. We don't care anymore about the noise our child makes during a public meltdown or if that odd noise is causing someone to stare. Some of us, on the other hand, avoid public places all together for fear of a potential embarrassing situation. We worry about offending the general public, we dread the stares, we want to sink into the floor. (Guess which group I belong to? Yes. Group A.)
7) We think you have it easy. So your kid brought home a C on his report card, or got benched during a ball game? Your three year old wouldn't sit still during church or spilled cereal on the floor? We try to be sensitive and understand that these things are a big deal to you. And we like hearing about what's going on in your life because a) we care about you and b) it takes our mind off of our own issues. On the other hand, you have to realize that some of us changed a diaper on a fourteen year old girl that morning or tried to keep our son from yelling profanities in the middle of the grocery store. Do the math.
8) We wouldn't go back to the way it was. Some of us see autism as its own blessing. Some of us think it's the worst kind of curse. But what most of us agree on is that we wouldn't go back to the way we were before dealing with it. The lessons have been too profound and too eye opening. Would I take away my son's autism and make him normal? Sometimes, yes, I would love to do that. At the most, I would erase his anxiety. If I could do that, I would have it made.
9) Autism has changed our family dynamic forever. We are divorced because of autism. We are at different stages of the grieving process because of autism. Our other children are anxious, tired, strong, mature, sarcastic, depressed, more kind and compassionate, or angry because of autism. Our child with autism is frustrated, anxious, and feeling unaccepted because of autism. We haven't been on a real date in years because of autism. We have distanced ourselves from other family members because of autism. We have moved, because of autism. (Yes, this is true. Some families will uproot themselves to find better care or because the town/neighborhood/school district they live in is so unsupportive and unaccepting). This condition affects the family unit in a variety of ways, and it's never the same from one family to the next.
I could go on forever. I really could. This is me, laying it out on the table, readers. If offense was taken, it was unintended...and I ask you to remember that I belong to Group A.
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