Things NOT to say to parents of children on the spectrum.

I am going to start with with a PSA that I am not speaking on behalf of the entire autism community. Every parent is different, what pushes my buttons may not push theirs. These are the questions and phrases that takes my day from ordinary to disastrous. You know, the ones that make you want to crawl in a hole and never climb out. Don’t say these things to me.

“Is he autistic?”

It’s not a secret. I blasted our business all over the internet with our faces attached. I am not ashamed, or embarrassed; I am open to sharing. If you want to have a dialog about autism, if you want to ask me about Rivers, I would love to have that conversation. Any day, any time. But if you are just curious, keep it to yourself. Quite frankly, its none of your business and I am not quite sure what value that information has in your life. All it does, for me, is remind me that Rivers is so obviously different that you needed to open your mouth and tell me. Not everyone is comfortable talking about their diagnosis, and you likely ruined their day with that question.

“Have you tried……?”

It doesn’t matter how you finish that question. The answer is yes we have tried it. Or maybe its no we haven’t. But generally, that choice was made intentionally. Most parents I know with children on the spectrum have done extensive research on just about everything related to autism. Just because something works for your friend, or you read about it online, does not mean it’s right for me. Just keep your unsolicited advice to yourself.

Sharing what has worked for people you know can be helpful, in the right context. Don’t be afraid to connect us with people who have had success trying something. And it’s completely prejudice of me, but its completely different hearing this from a special needs parent. Just make sure you know your audience when offering up suggestions.

“But he is so smart”

You can replace smart with creative/funny/attractive/social whatever adjective fits. I am going to say this really loud for the people in the back. AUTISM IS A SPECTRUM. To learn a little bit more about what that means, click HERE. It is NOT an intellectual disability, it does not prohibit creativity, has no bearing on how you look, and it doesn’t even mean they aren’t social. There is a saying floating around the universe “Once you have met someone on the spectrum, you have met 1 person on the spectrum”. Its cheesy, and not exactly the phrase I would coin to explain differences, but you get the idea. People on the spectrum can be smart or artists, or engineers, or teachers or scientists, you tube stars or grocery sackers. They are still people after all.

“He will be just fine”

I don’t know why people say this to me. I think it’s meant to be comforting. Let me tell you something, it is not. I have little doubt that Rivers will grow up one day and fall right in line with us normies. I think he is capable of having a great job, getting married and having a family; capable of a very typical life. But this is a journey, sometimes focusing on the end is like a light at the end of a very long and dark tunnel. But there is a lot of work to do between here and there. Life is like a marathon, It’s like telling someone at mile 1 “don’t worry, I am sure your will finish.” Sure, it is, but there are 25.2 miles of hard work between where you are and where you finish. Yes, I think he will be “fine”, but I cannot and will not be so blasé about what it takes to get him there. I cannot sit on the couch, with my popcorn binge watching Netflix and just hope it all works out.

I am going to ruffle some feathers with this next one. which is why I saved it until the very end. Remember when I wrote my autobiography in the about me section of this blog? Remember the part about strong opinions? Here is one of them.

“I would rather my child have autism than die of the measles”

Yup, I went there; the vaccine debate. But it’s not what you think. The reason this phrase makes my skin crawl is because it’s painfully obvious but definitely not that simple. Yes, I would 100% have my Rivers be exactly the way he is than dead. Good grief. Do you think people who choose not to vaccinate prefer their children dead? Ludicrous. It’s easy to wax poetic on this topic. I am not a doctor, but the CDC says the last reported death from measles in the US was in 2015. I won’t discount the seriousness of this disease. I don’t want measles. I don’t want my children to get measles. Its sounds terrible. Autism is a life long disorder. It has many struggles, that span across a lifetime. The likelihood of you dying from measles in America is unlikely. So, please make that vaccination choice that is right for your family. But please stop comparing a virus to a life long disorder.

And I will add a disclaimer, because I don’t want hate mail. My children are both fully vaccinated, on an alternative schedule I worked out with our peditrician. I do not believe they cause autism, at least in our case. I can back date symptoms to when he was months old. There is also a huge genetic component for us, which I did not know until I started really suspecting something was different. I can’t speak for other parents on either end of this debate. I respect YOUR right to choose. Vaccines are not without risk and it is for each family to weigh those risks and rewards themselves. I will be your friend regardless of where you fall on this debate. And I will listen as you argue why you feel that way. I love debates, as long as they are healthy and respectable.