Before I went back to grad school, I worked as a behavioral interventionist working with children on the autism spectrum.
There’s a quote frequently used in the autism community:
“If you meet one child with autism, you’ve only met ONE child with autism.”
It is a disorder, sometimes called a condition, and it can look very different from case to case. I would go to families’ homes and use play therapy to work on specific goals set out for a specific child. Some children seem typical, yet may get very aggressive when they are agitated. Some have poor social skills and don’t know how to make eye contact. Some are completely non-verbal and don’t sleep for more than a few hours per night.
The Centers for Disease Control and Prevention estimates that in the US, one child in every 68 is on the spectrum.
Working with these children was one of the most physically and mentally challenging, yet rewarding things I have ever done. My favorite part of the job was the connections I made with the families.
These are the lessons I learned that I will never forget:
If you meet someone who is irritated or seems standoffish, don’t write him or her off as rude.
Everybody is fighting some battle of which you aren’t aware. Don’t take it personally.
A parent who has a child with autism is probably sleep deprived. You might meet someone who snaps or just doesn’t have the patience for bullsh*t. It was hard for me to complain about being “tired” when these parents were awake day and night trying to entertain a restless kid.
Stop caring what other people think about you.
Anyone who gives you a dirty look or says something insensitive about you has his or her own problems.
Some kids may act out and behave in a manner that is erratic or “strange.” Just because someone or something is different, doesn’t mean the person is defective. Some parents have said they used to get embarrassed when people would stare, but eventually, the parents realized other peoples’ judgments weren’t their problem.
Choose your words carefully when speaking to people.
Words have more power and influence than many people realize.
Using the words “retard” or “retarded” is offensive. I know people don’t mean to put a negative connotation on the word and some may argue that, “Oh, it’s just a word.” To a parent, however, it can be one of the most hurtful things one could say. The word demotes a child to a “thing,” rather than a human being.
There is always a way to see the positive.
Sometimes, we face obstacles we didn’t anticipate. That doesn’t mean you have to give up hope or you can’t continue living.
For the parents who have a non-verbal child, it is absolutely heart-wrenching. Their child doesn’t know how to speak and can’t say how he or she feels, so instead, the child acts out in different ways. A parent says, “I love you” to his or her child and won’t hear the words repeated back. Imagine you feel sick or you want something and the words just don’t come out.
These kids have opinions and thoughts, but they just don’t have the ability to express them. Parents have constant anxiety of whom they can and cannot trust to be around their child. Unfortunately, there are sick and cruel people in our world, and parents constantly worry if their child is okay.
Fortunately, there are great companies that offer wonderful techniques and behavior interventions that can help children to live as independently as possible. Some nonverbal children learn sign language, and technology makes it possible for kids to use speaking programs on iPads to communicate.
On my last day of work, I was so emotional because I knew I would probably never see some of the families with whom I worked ever again. After seeing what life is like inside of these homes, you’ll never look at autism — or anyone struggling with a disability — the same way.
If you meet somebody who acts differently than you, don’t be afraid. Ask questions, offer help and always show compassion.
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