15 Things I Hear as the Parent of an Autistic Child — And My Responses

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I have heard some real corkers over my years and sadly been privy to what other parents have had to listen to. Mothers of all children with special needs and autistic children likely hear a whole lot of different things throughout their journeys, so to make appropriate social conduct a bit clearer and more defined, below is a list of what I believe is better not to say — with my responses next to them.

1. “Have you tried giving the Paleo diet a go?” — Why?

2. “My nephew had autism, but he grew out of it.” — Autism isn’t something you can grow out of.

3. “But she looks so normal.” — So what does autism look like, to you?

4. “Maybe she’s just attention seeking.” — In which case, there would still be an underlying cause as to why.

5. “But her eye contact is so good!” — Autistic people can have good eye contact — it is a myth to assume it’s impossible.

6. “Are you sure?” — No, I just make this stuff up to make myself feel good.

7. “But she’s so social!” — Autistic girls can be really social, and people who are autistic can also really enjoy the company of others. They may just tire immensely afterwards.

8. “But all kids do that!” — But do they do it all day, every day?

9. “Everyone is a little bit autistic!” — No. You can’t be a little bit autistic. The diagnostic criteria is long and complex; you are or you are not.

10. “If that is what autism looks like then maybe I am autistic, too!” — Hmm.. Well, maybe you are?

11. “I’m so sorry.” — Why, what did you do?

12. “Why does every child need a label these days?” — Because labels or diagnoses can help struggling children gain support, and they can also help in educating others and raising acceptance for neurodiversity.

13. “She’ll eat when she’s hungry.” — Except she won’t. Because autistic food issues are driven by anxiety and sensory issues, and children on the spectrum may starve themselves if they don’t have access to the food they will eat alongside food that is new to them.

14. “Didn’t Rain Man have autism?” — *Face palm.*

15. “But she doesn’t behave like that around me.” — She may be keeping it together around you because she doesn’t feel comfortable letting it out when you’re around. It is well-known that girls on the spectrum rarely ever melt down at school or kindergarten, and mostly always only around their trusted inner-circle.

So what should you say, instead? Well, how about:

“Wow, you’re a great mom!”

“I hope you take a breather for yourself later.”

“Let’s have a cup of tea and a chat sometime.”

“Your daughter is really lucky to have you as her advocate.”

“She’s an amazing little person, isn’t she?”

“Hello. What are you up to today?”

“I’d love to learn more. What can you tell me?

And finally:

“Here’s the cider/wine/chocolate.”

Remember people, autistic children are human beings — every judgment you make about them, in front of them, they are listening to. They think and feel things just as everyone else does, sometimes they can just feel them in different ways. Every mother of an autistic child can spend a great percentage of every day of her life advocating for her child, and if it isn’t apparent to you that the child is autistic — that might just show you how hard everyone is working together to make the life of the child fuller, easier and happier all around.

If in doubt, simply be kind.

a young girl sitting on her fathers lap on a sandy beach
Jessica’s husband and daughter.

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What I Want Others to Know This Month as Someone on the Autism Spectrum

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Recently I was asked to speak at New Jersey City University, the college I was accepted at for doctoral school, to share my story of living on the autism spectrum. This is what I had to say:

“Good evening, everyone. April is Autism Awareness Month and I was asked to share a few words about it.

A person who has autism is different and not less. No two people with autism are alike. Some people may have very few differences while others may have more. People with autism have unique abilities. They can process information at such a fast rate at times and are some of the most intelligent people you’ll ever meet.

You may not know this about me, but I couldn’t talk until I was 2 and a half. I have autism. I am just like anyone else. I have a job. I have a girlfriend. I love basketball, movies, “The Fresh Prince of Bel-Air” reruns and being around people like my friends and family. When people touch me at times it can scare me. Loud noises affect me as well. I twirl my hair and my hands sometimes when I have too much information to process in my head. I also have a hard time understanding sarcasm and other people’s perspectives.

While each person with autism has their own challenges, I can say that people with autism just want to be accepted. Autism is a part of who we are. Love us for that and everything else that makes us special in this world, because what often makes us different makes us oh-so beautiful, too. Thank you.”

After this talk I introduced a free screening of the autism-related film “Jack of The Red Hearts” that was sponsored by the Golden Door Film Festival and New Jersey City University.

Follow this journey on KerryMagro.com and on Facebook.

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To the Fraternity That Became a Part of My 'Village' as a Person With Autism

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Dear Alpha Xi Delta,

One message I share a lot about is the importance of having a “village.” In our autism community it is often the parents, family, teachers and therapists of a person with autism who become part of that village. Just like no individual with autism is the same, you can say the exact same thing about every person’s village. Today, I want to share with you though that you will always have a place as part of my village for what’ve you done.

It was in 2009 that I first learned about your work to help raise awareness and funds for those with autism like me. I would see photos of your members at Walk Now For Autism Speaks events on Facebook, doing volunteer work at different autism schools, participating in Coaches Powering Forward for Autism events to spread autism awareness in college basketball, and then if that wasn’t enough, spreading awareness for those with autism on national television for World Autism Awareness Day.

Your work didn’t stop there. Just last year you showed me an act of kindness when you shared with me that you were making me a “FOX.” At first I didn’t know what FOX meant, until one day I decided to look it up. “Friend of Xi” it read on your website. It made me a fan of your fraternity even more.

While reading more about your fraternity over the years, seeing that you’ve grown to over 150,000 members, become a national sponsor for our Walk program, and then have raised over $4 million to support our cause, it has made me realize the lasting impact you’ll continue to have for years to come.

But you’ve become so much more than just a village to people like me who are on the spectrum. You’ve become a part of my autism community family. Each one of your members has shown me kindness and respect. Something I think we can all show a lot more of for anyone in this world.

If you ever read this, I just want to say thank you. In college, I joined a national service fraternity to help others. While I was a brother in that fraternity, I learned so much about the importance of giving back like you have for so many. I can’t thank you enough for your impact.

girls showing support for Alpha Xi Delta

To learn more about Alpha Xi Delta, click here.

A version of this post originally appeared on Kerrymagro.com. Follow this journey on Facebook.

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A Letter From Someone With Autism Who Was Told She'd Never Talk

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Not many people understand me or really take the time to. They don’t understand meltdowns or sensitivities. It can become difficult to deal with.

When I was 2 and half, I was diagnosed with autism after I’d stopped talking and socializing. The doctors initially figured it out because I had a meltdown over being in the boys’ “Cars” room instead of the “Strawberry Shortcake” room. It was followed by about two years of not talking, many meltdowns, and sensitivities that even I didn’t understand. Doctors said I’d never talk again, I’d never be able to participate in normal school, and I would never socialize.

I was picky about my things. My stuffed animals had to be organized a certain way. I had to have matching clothes made out of material I was comfortable wearing. My toys had be organized by size and color. My bed had to be made perfectly. My food couldn’t touch. Only certain people could hug me or help me through a meltdown. I screamed when someone didn’t understand what I was telling them — because not being able to physically tell them made me upset.

I was often picked on for my organization, and I didn’t always understand things right away. A lot of people did it out of fun. But they couldn’t really understand how much it hurt me.

I had many people, namely my mom, help me so I could speak again and learn to cope with meltdowns. I started talking again when I was about 4. I still had to get speech therapy, but it really helped.

isabella with her family

Often times I was misunderstood. Nobody knew why I broke down in class, or got frustrated and didn’t want to do my work, or got in trouble so I could go to the library and read books. Nobody knew anything about autism spectrum disorder, and often told my mom I needed to go to a mental institution for evaluation. I was fine, just neurologically different.

I know there’s frequently this belief that being autistic means you’re not smart. But autistic people often have high intelligence and really are smart people. I’ve always gotten mostly A’s and B’s in school. If I get bored in school I won’t do my work because I feel like I can’t learn anything. I remember most things, including conversations I had years ago. I was accepted into an advanced program for middle school and received an award from the President in fifth grade along with four other people. I skipped eighth grade. I can read most books in eight hours. I can remember lyrics to a song after listening to it twice. I soak up everything like a sponge. I have friends and family who understand me. Point being: autistic people aren’t unintelligent people, regardless of what others say.

I know this may not make much sense. I know there’s a lot of information that may be confusing. But I’ve come a long way from the little girl I was.

If you’re in a situation like this, don’t give up. You’ll be OK. If you’re watching someone go through this, they’ll be OK. Doctors aren’t always right in saying a person won’t speak, or be in school, or socialize. You can’t give up. Work with them. Help them. Everything will be OK. Just have hope that it will.

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Why I'm Not Celebrating Autism Awareness Month

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It is April. It is Autism Awareness Month. Our Twitter feeds, Facebook pages and other social media accounts have no doubt been flooded with rainbows, jigsaws, blue or what ever symbol or color they have chosen to use this year. But mine has not.

I don’t feel the need to don my onesie for the day, or bake a load of cakes or whatever the latest ploy may be because to me it is just a publicity stunt. What will it be next month? To me “stunts” like this do little to raise acceptance of autism but serve more to reinforce the stereotypes.

I am also uncomfortable with the fact that many of these campaigns are run by charities who, let’s face it, want to make money. Many try to pull at your heart strings and make you want to part with your hard earned cash.

It makes me feel really uncomfortable.

Where are the stories that I want to show my son?

Because after all, isn’t that who it is about? Autistic people, like my son. What message do I want to give him?

There will be some who say, “Well, isn’t any publicity good publicity?” In my opinion, no. Not if it reinforces stereotypes.

I would like to see documentaries showing autism success stories, brilliant artists, musicians, dancers, etc., giving an honest account of their journey to get where they are now.

I would like people to see the diversity within the autistic community, not only the “extremes.”

I would like to watch a concert with amazing autistic performers or a play with autistic actors.

I would like to see autistic athletes competing.

I would like to listen to autistic authors speak, like Temple Grandin, or watch TED Talks like Rosie King’s “How autism freed me to be myself” or Steve Silberman’s “The forgotten History of Autism.”

I want acceptance! I don’t want awareness.

So I will continue to try and challenge those stereotypes and raise awareness of the real issues that face autistic families on a day to day basis. I will continue to write about us honestly and in my own quiet way…

But I will continue to keep one eye on Autism Awareness Month. Perhaps I will be pleasantly surprised.

Lead photo: Thinkstock Images

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The Choice I Hope People Make When It Comes to My Son With Autism

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Autism is not a choice. Acceptance is.

Take a moment to digest that…

Now imagine you’re at a busy supermarket, and as you approach aisle five you can’t help but notice a woman and her child. The child with his hands over his ears screaming and the woman, who appeared to be his mother, pleading with him to stay calm. The boy reaches out of the cart where he is sitting and begins to aggressively swing his hands at his mother. The mother responds by wrapping her arms around him and saying, “It’s going to be OK.” You go on your way to complete your shopping as if the incident in aisle five had never happened.

Finally at the checkout line, you begin to load your food on to the conveyer belt. Suddenly, you hear in the line next to you the familiar cry of the boy from aisle five. You peek over and watch as his mother tries to keep him from climbing out of the cart, dodging his hands from hitting her, all while she pays the cashier. Again you mind your business, pay for your groceries and make way for the exit. While leaving the supermarket, the woman and child were stopped at the exit by another shopper. As you pass, you hear the shopper say to the mother, “You shouldn’t let him do that to you.” The mother smiled and responded, “My son is autistic, have a nice day.”

OK, so we’ve all seen a child throw a public tantrum. Have you ever rolled your eyes or stared out of judgement of that parent? Saw a child acting out and said under your breath, “If I was that child’s parent…” Or my personal favorite, have you ever approached the parent and told them how to raise their child? If you answered “no” to the above questions, congratulations, I believe you’ve found acceptance. Be proud of it and hold on to acceptance; it exists but sometimes can be rare to see.

The reality is, the boy from aisle five is my son and I am his mother helping him through a meltdown. “Oh, a meltdown — that’s the same as a tantrum.” False. A tantrum, usually associated with young children, can be when the child acts out to overwhelm the parent and in return gains control or gets their way in the situation. A meltdown can happen at any age, the child or adult becomes overwhelmed and loses control of their behavior and sometimes there is no gain. The next time you see a parent struggle with their child at a supermarket, autistic or not, meltdown or tantrum, think before you act. Instead of staring, why not ask the parent if they need any help. My skin is not as thick as the world seems to think it is. Sometimes your stares and whispers don’t bounce right off me, sometimes they pierce my heart.

My child has autism, and he can’t always control his behavior. He did not choose this, but some people without autism choose to not find acceptance. Imagine if the opposite were true. Here’s my slice of awareness pie for Autism Awareness Month, take it or leave it — if you haven’t found acceptance, find it, because it’s a beautiful thing.

boy walking through crowd wearing superhero cape
Kathleen’s son.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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