September 7, 20178 Things Not to Say to an Autism Parent
By Alicia Trautwein
Autism parents have a lot on their plates. There are always multiple doctors and therapist appointments to go to every week. Daily life can present a wide array of stressors. Coping with everything from trying to dress a child screaming and fighting because they don't like how clothes feel to meltdowns because of a ringing doorbell. As a mom of four, two on the spectrum, I have heard my fair share of cringe worthy comments. When these comments were made, I am sure those making them were well meaning. Yet, that does not take the heartache away from hearing them. Here, I will share with you eight of those statements as well as the proper alternatives.
- Oh! My sister's son has autism. Yes, this was really said to me. First, I had to get past the fact that she could have just said "my nephew" has autism. This statement reflects the mindset of "I know so-in-so with autism, so I understand." Even if your child has autism, autism is different in every person. There's a saying "Once you've met one person with autism, you've met one person with autism." A better way to engage with an autism parent would be to ask "I understand autism is different in every person, how does autism affect your child?
- I keep hearing everyone saying their kids have autism, it must be over diagnosed; like ADHD. Yes, there have been a lot more diagnosis of autism in the last several years. A large majority of this is due to awareness. That does not negate the diagnosis. To receive an autism diagnosis, one must go through an enormous amount of paperwork along with numerous tests and several doctors all agreeing that they, in fact, do have autism. This is one of those statements better left in your thoughts. If you are ready to actively help bring awareness, then ask "I'd love to help spread awareness, do you know ways I can get involved?"
- He's not autistic, why would you think that?! I love my mother in law to pieces, but yes, she said this to me after we received the diagnosis. For her, it was her way of responding in shock and no ill will was meant. This type of statement I have heard several times since his diagnosis. To start, yes, he is. This is not like saying your kid is gold star medalist when they only received an honorable mention. No one wants to tell you their child is autistic unless they truly are autistic. The diagnosis standards are extremely comprehensive. The months of paperwork, interviews, and testing back that up. If you must ask a question or make a statement on this, a better one to ask would be "Can you tell me more about autism and the diagnosis process? I'd love to understand more."
- Really? He looks so normal! The intention of this is probably meant to be a compliment. However, it's just incredibly awkward for everyone. It's basically saying that you think autism looks a specific way. Some autism parents also may see this as a complete insult. It could be the person may feel like autism is a horrible thing. Though neither of these thoughts may be the intended response, it doesn't change how it affects the parent you are speaking to. A better question might be "I really don't know much at all about autism. Can you tell me how it affects your child?"
- He just needs to be around more kids. This one strikes my nerve the most, and many autism parents feel the same way. Everyone wants their children to make friends, have fun, and just be a kid. No one wants to see their child suffer from social anxiety, not understanding friendships. There have been many times where I held my breath the entire time my two-year-old has been around other children for fear of what may happen. Sure, I can tell him not to shove your child away from him for just getting to close. The reality is he's two and autistic. I cannot control every action of his and he doesn't mean them negatively. He's not old enough to understand that just yet. My nine-year-old daughter who has autism must attend different therapies weekly to learn these social skills. It is one of the harder parts of autism. If you would like to offer help, the better way would be to ask "I can see she has a hard time with social situations. Is there anything I can do to make it a little easier?"
- You always look so stressed, you should make time for yourself! There isn't an autism parent out there that doesn't want to make time for themselves. I would be happy to have more than five minutes every three days to take a complete shower. The last thing I need to hear is that I physically look the way I feel. If you really want the person to take some time for themselves, offer to babysit, even if it's just coming over for an hour so they can take a shower or nap.
- Oh, that's why I don't vaccinate my kids. This one makes me furious at times, and other times I just feel sorry for them. This is a myth, plain and simple. This myth came about when Andrew Wakefield back in 1998 published a research article that suggested the MMR vaccine leads to behavior issues. His paper came from research from an unacceptable low sample size, and cause a massive epidemic of parents not vaccinating their children at all. Since then, the CDC has researched and found no link whatsoever between vaccines and autism. This is the reason so much effort put towards autism awareness. To better educate those affected and not affected by autism.
- (He has autism) Oh, I'm sorry. As much as it can be a struggle to be an autism parent, most do not want sympathy. What they need is a friend that won't abandon them because things get tough. For most autism parents, balancing friendships is one of the hardest things to do. Their time is focused on their child. They may go long times without speaking to you or seem abrupt when in conversation. This is when many close friends disappear. Just be there to listen, and ask them if there is anything they need help with. This will mean the world to an autism parent!
Posted by Staff at 10:57 AM
Alicia Trautwein is an autism/parenting writer living in Missouri. She is the creator behind Adventures of The Mom Kind, a website dedicated to parenting neurodiverse families. She shares her expertise along with her experience in parenting children, both with and without autism. For more information visit www.themomkind.com. Permission granted for use on DrLaura.com.