When your child receives an autism diagnosis, there can be a lot to process. But one thing I didn’t really think about was how others would react to my daughter Tink’s diagnosis. Of course, the vast majority of people are well-meaning, but unless they have personal experience, it can be difficult to know what to say or how to react to the news. In my experience, there are several things people will say to parents when they hear of their child’s diagnosis. Here are some examples and suggestions of things to say instead.
“I’m sorry.” This is probably the phrase I heard most often immediately after my daughter’s diagnosis. Most of my closest friends and family haven’t had a lot of experience with disability or autism specifically. Most people who saw me for the first time after Tink’s diagnosis began a conversation with, “I’m sorry to hear about Tink…” Of course, it was the beginning of my personal journey too, and I didn’t know any better, so I’d just nod and say, “Thank you.” Now, of course, we’re 18 months on and I’m not remotely sorry she has autism. It’s what makes her the fantastic person she is! I can’t imagine her any other way, and we certainly don’t need people’s pity. I’m not ungrateful, though. They meant well and were probably, like me, wondering what a diagnosis would now mean for our family.
What could I say instead? Instead of saying, “I’m sorry,” try asking that very question. “So, what will having a diagnosis mean for you all? Will it help?” Or even, “How do you feel about it?” Really, I had so many emotions running through my mind, I would have liked someone to ask me so I could have unburdened some of that.
“Oh, you can’t tell!” This is one that gets me just a little bit riled! It’s another statement well-meaning people tend to say without thinking first. Yes, while it is possible to spot that some people have a disability or difficulties in some areas, autism is a neurological condition and, as such, is an invisible disability. I’ve heard it several times about Tink. I’ve even taken to telling people that, “no, it’s amazing how she just looks like a little girl, isn’t it?”
What could I say instead? If your first instinct is to say something about how you can’t tell, it’s probably best not to say anything.
“Oh, like Rain Man?” No. Not like Rain Man. Like my child. Just like everyone else, one autistic person is different from the next. We’re all individuals, and that includes those on the autism spectrum. While the film “Rain Man” thrust autism into the consciousness of those who never even knew it existed, it’s just one (Hollywood-style) interpretation of one person’s condition.
What could I say instead? “Tell me more about him,” is a good start. We parents want to gush to others about our kids. We want to enthuse over how she tried a new food, or how he learned all the words to a particular episode of his favorite program. We want to celebrate how diverse our children can be. Heck, that’s why so many of us have blogs and Facebook pages! Ask us!
“What’s her special talent?” This is another one that most likely stems from “Rain Man.” People with little experience of autism often have the misconception that all autistic people have a special skill or talent. Many can have “special interests” or “obsessions” or can be exceptionally gifted in one area or another. But everyone is different and has different abilities.
What could I say instead? Try asking, “So, what kinds of things does she like?” or, “Is he interested in anything in particular?” That way, if the child does have a certain affinity for something, it gives us parents a chance to talk about it.
“I don’t know how you do it.” If I had a pound for every time I’ve heard this gem, I’d be sunning myself in the Seychelles instead of sitting here writing this! It’s another well-meant comment, but really, think about it. We do it because we’re parents, just like you. Our purpose is to make sure our children are fed, clothed, hydrated, warm, healthy, educated, stimulated, happy. Just like yours. Yes, it can be tough. Being a parent is tough! Yes, autism can bring its own set of interesting challenges, and there are some hard days. But along with those difficult times, there are many, many wonderful ones, too.
What could I say instead? Perhaps ask about what help we get. “What sort of support network do you have?” Obtaining support services can be challenging. That’s the difficult part, the part that would make the actual parenting part that bit easier. And if the person you’re talking to says they have no support, then perhaps you can help them? You could be a listening ear from time to time, or even help them to find their nearest support group so they can chat with other parents just like them.
Next time you meet a parent and you hear their child is autistic, please, please consider this before you speak. We know people mean well, and we welcome questions and comments, but some are more welcome than others.
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