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My son was diagnosed with autism 4 years ago now. It’s been quite the rollercoaster ride ever since, dealing with the IEPs, therapists, emotional breakdowns from him and myself and learning all about what it means to have autism. We have overcome so much and watched my son not only grow and exceed expectations, we have learned so much from him, about him and about ourselves!
One thing that is still constant though is the comments. Comments that I probably would have said myself to another parent had my child not been autistic. I know the comments are well meant and my feelings aren’t ever hurt but sometimes when you’re already having difficulty just navigating through the hardships it can be a gut punch to have someone ask you what you did to give your child autism…
So if your friend, family member or someone you know is going through an autism diagnosis with their child and you have questions or comments, here are some things to avoid:
Was It The Vaccines?
This is the number one question you should never ask. There is still no known cause of autism, and I can’t tell you the number of times I’ve been asked if it was his vaccines. That is one of the most asked questions I get and it’s never appropriate. The guilt a parent already feels when their child is special needs is great enough without outside insinuation that you could have avoided autism. Feel free to ask if there’s a known cause yet, but remember that just because I have a child with autism doesn’t mean I automatically know all the most up to date info on it either.
Are All Of Your Kids Autistic?
This is usually the second question I get after the vaccine question. It’s just inappropriate. Why not ask me if I have other kids and just leave it at that? If I want to share that info I will make sure to let you know all about it.
But He Can Talk
I get this one a lot. My son happens to be high functioning and a lot of times people are shocked he has autism. “Man, you would never know it, he talks just fine!” What? What does that even mean? That wasn’t a one time thing though. It’s been said several times to us by strangers and even friends. There are definitely children with autism who don’t speak, but because the spectrum is so broad the “symptoms” differ greatly with each child. Instead of focusing on what you think autism is or isn’t, just mention that the child is doing great. Every parent loves to hear praise of their child.
Is He Super Smart?
I think because Rainman is the only autistic person a lot of people know about it is assumed that all people on the spectrum are geniuses. That’s not the case. In fact, I was told by one of our psychologists that a greater number of people with autism are actually below average IQ than above. I love talking about ALL of my kids academic levels and intellect, so ask about how school is going instead.
There’s No Way He’s Autistic
This one infuriates me. Because my son is high functioning, some of his symptoms aren’t as noticeable to the everyday person. I had friends, family and strangers tell me that there was just no way…that he’d been mis-diagnosed in a world over over-diagnosing. I get it. I know that a lot of our friends and family thought that maybe I needed to hear that he was fine or that the countless doctors and therapists we’d seen before the diagnosis were somehow out to gain something by diagnosing my child with autism. I understand that you may not see it, but know that an autism diagnosis also isn’t handed out like lollypops at the doctor. There is a reason he was diagnosed. Curious about it? Ask about how the diagnosis process went-most of us have quite the story to tell!
Does It Make You Sad That He’s Not Normal?
Yep, it’s been said. A lot. First off, PLEASE don’t refer to a child with autism as being not normal. It’s hurtful. The term used in the offices we visit are “typical” or “mainstream”. To have someone say that your child isn’t normal or that they’re weird, different etc is like having them read your pain out loud. Yep, I know things are different for our family but it’s our normal. I absolutely grieved the son I planned to have and won’t anymore because our path has changed. Absolutely we get sad about it, but asking about it only brings that pain to the surface. Would you ask someone if they were sad that their parent died? Do what you would do with anyone you know might be sad: offer help. “What can I do?” “Can we bring you dinner one night?” “Want to meet up for a walk?” (Adult interaction is the BEST help!)
How Do You Cure Him?
I think people see autism almost as an injury. That the day of that diagnosis your child suddenly got hurt and just needs some therapy and maybe medication to be back to “normal” (see above). Are you doing enough? Are you doing too much? Who knows? As far as I know, autism is something my son will be dealing with forever to some degree. It’s ok to ask about how therapy is going or how school is going, but asking how to cure autism is like asking how to cure cancer. We just don’t have the answers.
Everything Happens For A Reason
Let’s just all agree not to ever say this to anyone going through a trial of any kind. Ever. I don’t know why this is the go-to response for any hardship or sad story but it’s become the anthem for people who don’t know what to say. You do know it’s ok to say nothing? When I told someone it looked like our son would be diagnosed and they told me that “Well, everything happens for a reason”. I would have just appreciated “Oh, ok” or “How are you doing with that?”. I didn’t need someone telling me that this extremely difficult time was all for a greater good or that is was just meant to be. I needed a hug. I’ve come to see the diagnosis in a more positive light over time but still don’t need anyone else to tell me that there’s some unknown reason we struggle daily.
I’m an open book when it comes to my son’s story and our journey the past 4 years and I love to share what we’ve been through to help others. I hope that by sharing my personal observance of the cringe worthy comments that might not seem so cringe worthy to the average person it might help others to be a little more aware of the things they are saying to a potentially fragile parent. If you want to know more about autism, check out Autism Speaks, a wonderful organization with tons of resources and information to learn all about autism.