Stigmas, Alienation and Stupid Things People Say

Thinking back over your autism journey with your child, have you gotten negative reactions from others while out in public? Or have people said stupid things? Or even from a family member or friend?

Did you ever feel the stigma of autism or have you felt alienated from others because you were worried about how your child would behave? Have you feared not being accepted due to those behaviors or differences? I find this topic beneficial as many parents experience this feeling at some point. Though this is a serious topic, you may have reached a time in your life where now you can laugh at some of the experiences of ignorant people that you had to endure. I have certainly reached that point. My autism journey is about 18 years old now and I wanted to share some of the experiences that I was fortunate enough (enter sarcasm) to be a part of at the expense of my son. 

I did not attend many friend functions when Noah was 3 years old as he didn’t engage with the other children. The other children didn’t bother to engage with him, and their parents would make snide comments as my son would sit alone crashing his small wooden Thomas the Tank Engine into the dirt then bury him to dramatize that crash. That would happen over and over again while making some sort of quirky sounds that was most likely a script of the Thomas video playing in his head. One particular comment that I overheard and it may not seem like much, but I was 25 at the time, shy, and worried about how others saw me as a mother. A friend of a friend at this point said, “I would never let my son bring his trains outside, look how filthy they are now.” Well the 43-year-old me would have advised the 25-year-old me to say “Well, he’s happy and that’s all that matters to me.” Instead, I felt like I was a horrible mother. Isn’t that crazy?!?! Something as little and stupid as that could make me feel small and challenge my self-confidence as a mother. 

There were other instances too that I’d love to share with you, these ones will be more abbreviated so this doesn’t turn into a novel…yet. 

1. “That’s why I never took my children to the grocery store.” This is a quote from an extremely lovely elderly woman at a Target checkout. You know, those checkout lanes where it entices your child to beg you for whatever they see (candy, cookies, toys) at eye level. A freaking nightmare. I just smiled at her.
2. “I’ll pray for you.” A wonderful sentiment gave by a waitress at an Olive Garden that should have been bringing me the bill as my son is melting down at the table for all to see. I replied “Great, can you please give me the check so I can get out of here?”
3. “He doesn’t look autistic.” This was said by many people, people I knew. I just stood there and looked at Noah as they would say that. Never once did I respond by asking the question, “Well what does autism look like?” I bet the answer would be from the movie Rain Man though.
4. “You certainly have your hands full.” Another statement by many people. Never offering any type of assistance mind you.
5. This next one I’ve heard in two different ways, but pretty much means the same. “Special children are given to special people” and “God gives you what you can handle.” This one, in particular, I would LOVE to hear your take on this. I get that people are trying to be encouraging and have good intentions, but do they really hear what they are saying when they say these words? Am I more special than you? Because there are days I’d rather not be. Can I be less special, please?
6. “Do you think he’ll grow out of it?” Now this gem was from a family member.
7. “I don’t know how you do it.” Well to be frank, I don’t either and I certainly don’t have time to sit around and contemplate it.

My advice is this:

1. Continue to expose your child to community outings and get-togethers, because they are human too, and deserve inclusion, and you need to get out of the house.
2. Just go with very few expectations that it will go well and have an exit strategy.
3. Leave a cart at Target in the middle of the aisle if they decide to melt down and you have to bolt.
4. Have the server bring you the check and get your food to go if you can’t finish your meal.
5. Tell people to mind their own business and you just keep doing what you’re doing with your child. 

Most people have no clue what pressures we have as parents of autistic children. Don’t let society rob you of having experiences and making memories (good or bad) with your child.

I’d love to hear what your experiences are in this matter and if you have anything to add to the list. Please reply to this email if you’d like to share!

We’re in this together! Check out my other post on How is your support team?

Pam