SILVER SPRING, Md., July 13, 2011 — In my last column here, I wrote that saying, “I’m so sorry,” to a parent who has told you that her child has autism can be hurtful. One thoughtful commenter asked, “What might be a good thing to say?”
This is an excellent question, and one with many answers.
One of my favorite conversations along these lines came two years ago when a teacher friend of mine, who has met my children and who has read about my family and autism, bluntly said to me: “I don’t know a lot about autism. Can you tell me what it is?”
Now, this woman is very intelligent and a teacher and no doubt has interacted with many special needs children. For her to stand in front of me and admit that she doesn’t really know what autism is, but that she wanted to learn, felt very brave to me. She didn’t let expectations about what she should know keep her from asking a hard question so she could learn. I was thrilled to talk to her about it. I admired her for asking.
I think the most important thing to remember when you are talking to parents of children with autism is that they want you to understand their child. Most of us are willing to explain how autism affects our families and are happy to answer your questions. What we don’t want are platitudes or assumptions.
If someone tells you his child has autism, ask how the child is doing. Ask what he is like. Remember that he is someone’s very loved child.
Maybe more important than your initial response is your follow up. Listen to what the parent tells you. Really hear what they are saying. Maybe they are telling you that their child is amazing, but has some extra challenges. Maybe they are telling you that the stresses of their special needs family has pushed them almost over the edge.
Autism is not something that will go away. This parent will be dealing with autism for the rest of her life. You can’t dismiss a lifetime of the worries and issues with one simple statement, be it “I’m sorry” or “How is he doing?” If the parent is a friend of yours, ask her again in a few days or a couple of weeks how her child is doing. I guarantee that if you really want to listen, she will have things to tell you.
Even as the parent of a child with autism, I sometimes feel at a loss as to what to say to a parent who has just gotten a diagnosis. Some parents react by grieving. Some parents, like me, are happy to finally have a road map for what to do. You can’t know what is going on in the parent’s head.
If you are unsure, ask. “How do you feel about it?” can be a good starting point. One of the best things someone said to me early on was, “Even if he gets a diagnosis, he is still the same child he was before.” It wouldn’t be the worst thing to add, “and he is such a great kid!”
There are a few things that are tough to hear. Most of them are said by very well meaning individuals who don’t know how they sound to someone who has a child on the spectrum.
Saying, “Oh, they diagnose everyone with autism these days. It seems like they over-diagnose kids all the time,” is one of these. While you may think you are having a conversation about diagnoses in general and kids that aren’t related to the person standing in front of you, the autism parent is going to feel attacked and that you are lumping him in with that group of people seeing disorders where there are none. Autism parents aren’t out and about looking for an autism diagnosis to excuse their child’s behavior.
I often have people tell me, “Oh, don’t worry about that. My kid does that too. All kids do that. It’s not a big deal.” Yes, my son has behaviors that typical kids do because he is a kid. But when you tell me that it’s not a big deal that my kid is studying wood chips instead of playing with the other kids at the park because your kid does that too sometimes? Well, you are minimizing everything about what I know about my child.
Furthermore, while a typical child may sometimes prefer to hang out by himself, you are not seeing the bigger picture where my child always chooses to interact with the flooring instead of other children. You are trying to make us feel better, but you are just pointing out how different our worlds are. That said, I think it’s okay to tell me, “My kid does that too sometimes.” Pointing out commonalities doesn’t hurt me, but pretending that our kids are the same does, because, frankly, they are not.
Another pet peeve of mine, and of many in the autism community, is when I tell someone about my child’s diagnosis and they launch into a story of how they have heard about the miracle of the gluten-free casein-free diet or how you heard that hypnotherapy cures autism or whatever the article of the week is.
Chances are that we already know about that particular therapy and have made up our own mind about whether we think it would work for our child. I cannot tell you how many times I have had to feign interest while some well-meaning acquaintance tells me how eliminating red food coloring from my kid’s diet will make him give up the wood chips for the other kids.
Are we autism parents oversensitive? Maybe. But you’re talking about our kids—our vulnerable kids—and an issue that is central to their lives. Of course we’re going to be sensitive about it.
Other nice things to ask are, “How can I help?” (Be my friend. Listen to me.) or “What should I tell my kids?” (It is important to treat everyone nicely and with understanding even if they act different. Sometimes differences make someone even more interesting.) or even, “Is there a book I could read that you recommend?” I’ve had several teachers ask me this and nothing makes me happier.
That said, you probably don’t want to besiege a parent of a newly diagnosed autistic kid with questions that they are still trying to figure out the answers for themselves. Save those for people who have been dealing with the diagnosis for a while.
If it seems that I’ve laid out a lot of do’s and don’ts that equal one big land mine for you to step into, just remember that every autism parent is different and has unique thoughts running through her head. If you don’t know what to say, admit that. If you are honest, open, offer an ear, but let her take the lead, the autism parent will surely appreciate it. I know I would.
Jean writes a personal blog at Stimeyland and an autism-events website for Montgomery County, Maryland, at AutMont. You can find her on Twitter as @Stimey. Read more of Jean’s work at Autism Unexpected in the Communities at the Washington Times.
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