Comments, Questions and Autism
My son Max will be turning nine in July. As he gets older I am getting a lot more comments and questions about him.
I can handle most honest questions fairly well. The comments and the rude questions drive me up the wall.
Last year, when we went to the Minnesota Renaissance Festival, Max spent a good part of the day riding in a stroller, and boy were there a lot of comments. “He should be walking!” “Aren’t you too big boy a boy to behaving that way?” “Don’t you think he’s too big for that stroller?” “What’s wrong with him anyway?”
The thing is, even if it sounds like a question, you can tell they aren’t really asking. They are letting me know they don’t approve of how I am handling my child.
The first few times I smiled and explained. I told them how Max has autism. How he has low muscle tone and tires easily. How he needs his space. That he isn’t being rude. He simply doesn’t speak much.
I rocked those teachable moments.
But by the end of the I was getting tired and annoyed and I didn’t hide it well. “Autism,” I answered curtly. “He has autism,” and I walked on. Leaving them embarrassed, confused and annoyed behind me.
Don’t get me wrong, there were positive encounters that day, but the rude looks and the intrusive questions somehow linger the longest.
Summer is rolling around again, and that means day trips. Zoos and festivals. Long walks and crowds. Stroller season.
So my questions is, how do you handle comments and question? Especially when you feel the person is being judgmental or downright rude? How do you manage to stay patient?
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Jenny is a single mom to two boys, one with autism and one neurotypical living smack dab in the middle of Minnesota. She blogs at http://www.jitteryplanet.com/ and is on Twitter as @jitteryplanet
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
I handle them the same way you do. I wish I had an answer. Not trying to hijack your thread, but where can I get a stroller that will fit a larger child? Allie is 6 and has outgrown ours, but we need one for her too. Can you give any recommendations? thanks, and hugs.
I’ve really only seen the strollers for larger kids online.
Max is very light for an 8 year old. For now he still rides in City Micro Baby Jogger stroller that I found on ebay.
It goes up to fifty pounds and he is outgrowing it.
I know there are other jogging strollers that go up to at least 80lbs, but if you need one larger than then you are probably looking at special needs strollers which are more expensive. I have seen some used special needs strollers on ebay but they seem to get snapped up fast!
I plan on moving up to a Maclaren Major Special Needs Stroller, probably sometime this summer. They go up to 110lbs and sell for around 500 dollars.
Thanks so much for the info on strollers. I love the vest or tag idea as well.
They’ve been recommended by another member: http://www.convaid.com/
I have not tried this yet, but here is a link I just got recently to a free handicap tag from Little Friends Center for Autism in Naperville, IL. They talk about possible uses for the tag and how it can alert others that you are caring for a person with special needs. Seems like the problem comes in when one has a hidden disability, i.e. your son is in a stroller as opposed to a wheelchair. Most people would not walk up to a child in a wheelchair and say ‘Why aren’t you walking?’ Although I am sure some would anyway! This is certainly a personal choice to use and it will not end all comments, but it might be helpful. I am planning to print out for restrooms as my son is now very tall for his age and we get those looks. I don’t like conflict and prefer to prevent the comments so I can enjoy my family time.
Best wishes!
http://littlefriendsinc.org/documents/LFCA_ASDAssistTag.pdf
Max usually wears an orange vest that says, “I’m not ignoring you I have autism” when we go to events it, but people miss it surprisingly often.
I was thinking about maybe even making a banner for the stroller, but I like the idea of a tag!
What about having cards printed? I know it sounds odd, but business sized cards with what you would tell people to educate them… Hand it to them, then walk away?? With info linking to websites of your choice, maybe even asking for a donation?
Just a thought… You could even do a kickstarter campaign (in all your free time) to pay for the cards, and maybe the video would go viral. Who knows? This is an opportunity to educate, shame on people who judge and assume, but maybe they are clueless? I loved the “just right for stroller” facebook page last year…
Is that totally off-base? I’d donate money to the campaign. Maybe people could even order pre-written ones. Maybe this could be a fundraiser for SFSN… This ties in to the recent post about Schulyer touching her classmates to try to communicate. The world needs to know and learn. Sorry that you/we have to do the work to let them know…
Oooh, I do like the idea of cards. I’m not great at speaking on the fly and having cards to hand out could help me deal with that.
Sorry, I’m in a bad mood,but I feel so badly you have to go through this! WHY can’t people mind their own business??? Why must they feel the need to comment on other people’s children? I don’t want every family outting to become talking to strangers about my child’s disability! He CAN hear and understand and I don’t like explaining him to strangers in front of him and I don’t want him to have to wear a sign or a vest like he needs a warning label! I don’t go up to strangers and ask why they don’t wear clothes that cover more of their jiggly bodies, or ask them why they wear their hair that way, because it’s RUDE! and They say our kids have social deficits?? Why can’t we and other families like ours just enjoy a nice day without talking about autism? Live and let live unless it’s obvious a child is being abused. If everyone would just be friendly and polite and stop trying to judge situations they know nothing about….wow what a world that would be. Okay, I feel better now 🙂
Yeah, that bugs me when people talk about him like he isn’t there. Max doesn’t speak much, but he understands so much more than people give him credit for.
The vest is more for if we get separated than anything else. He tends to bolt when excited and I want him to be easily identifiable in a crowd. I understand why it wouldn’t be for everyone though!
We also looked into the larger strollers but found a better solution. Buy a transport wheelchair! It has smaller wheels on both the front and back. It’s had so many advantages:
*can use all the way up to adulthood
*can find them more easily than the strollers and no more expensive
*easier to push than strollers
*offers the same defined, personal space as a stroller
*small back wheels mean it’s smaller and less heavy
*it’s more comfortable for the child
*they also come with seat belts!
and best of all…
*no more rude comments! People see the wheelchair and automatically think ‘disability’ so they’re more likely to be understanding and patient. Heck, with the wheelchair it’s not unsual for folks to go out of their way to be helpful 🙂