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Ask the Expert

What Does Autism Look Like?

By Apr 18, 2011May 13th, 201234 Comments

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When Jen, our health expert from Buried with Children, came up with the idea to dedicate a week of posts on SITS to Autism Awareness, I didn’t hesitate. “Absolutely”, I replied. Providing a platform for women to tell their stories so that we might all learn from one another is exactly why our website exists. After reading today’s post, I couldn’t be happier that we are doing this.

This post is Part 1 of a three post series.  Be sure to catch Part 2, The Faces of Autism: Meet Three Moms and Their Kids, and Part 3, Understanding Autism in the Classroom, too.

Autism.

It is a word that means a lot of different things to different people. For some, it’s just a word that they have heard and have no idea what it means. For others, it is something that they face each and every day. It’s their way of life.

To be honest, even though I am a registered nurse and a mother, I am in the group for which autism is just a word. It’s a topic I know very little about.

I can Google the word ‘autism’ and get a ton of information and a definition.. “Autism is a developmental disorder that appears in the first 3 years of life, and affects the brain’s normal development of social and communication skills.”

But what does that really mean? What is it like to live with Autism? What does Autism look like?

Because April is Autism Awareness month, we are dedicating this week on SITS to making us all a bit more aware. Our goal is to give autism a “face” by sharing the stories and experiences from the women in our community. I have really become enlightened in doing research for this project and I hope you will too.

Today, Amanda from Life is a Spectrum is sharing what autism looks like in her family.

What does Autism LOOK like?

Over a year ago, I was sitting in the lobby of one of Billy’s therapies when a well-meaning grandmother of another child remarked about Billy, “He’s such a beautiful child. It must make it easier that he doesn’t look disabled.”

At the time that she said that, Billy had his nose stuck down on the fake potting soil of the fake house plant in the lobby and was singing something to the plastic tree. I don’t know what that looked like to her, but that’s what autism looks like in our house.

But I get her point. Those of us with loved ones on the spectrum develop a finely tuned “A-dar,” as we call our ability to identify other kids on the spectrum. But I’ll grant you that, especially these days, there are a lot of times when we are out in public when I suppose Billy can “pass” as “normal,” if that’s how you want to look at it.

And that used to be important to me. Not so much any more.

Very early on, it would embarrass me when Billy would crawl under the table of the booth at Beef O’Brady’s and want to eat his grilled cheese there.

But eventually, I figured out that he likes sitting flush with the glass wall, his cheek pressed against the glass while he watches the lights of the cars in the parking lot. When I finally got down there with him and looked at it from his perspective, I thought, “You know, it is kind of beautiful.”

autism children

Also, I’ve had the opportunity to explain to the wait staff at the restaurant that he is autistic and why he likes to sit down there. At first, they were surprised to find out he’s ASD. Then, they sort of shrugged and rolled with it. They always remember his favorite meal, give him a bright smile and never raise an eyebrow when he disappears under the table with his cheese sandwich.

There are times when I wish we had a sign. For instance, when there’s a meltdown in a public place, I’d like a sign that reads, “Sensory overload in progress: Please don’t touch me or talk to me.” And that would just be the sign that I wore.

In those instances, there are always a few people casting scowling glances, as though the problem is just one of discipline. Those are usually the same people that wish human beings would just spring from the womb already aged 30-ish, so that their dinners/shopping experiences/serenity are never interrupted by the sound of childish squeals.

Some people just stare. Maybe they want to help. Maybe they feel like they should do something. (FYI, if you meet me in the middle of a Billy meltdown, I’d appreciate it if you’d catch him if he runs toward you; otherwise, feel free to go about your day and ignore us completely.)

Thankfully, meltdowns are few and far between these days. We go out to eat as a family, take Billy to the grocery store, to Disney World, to the beach. Sure, we hit a few speed bumps along the way, but in most instances, our perspective has changed from “How can we make Billy more ‘normal?’” to “How can we support him to succeed in a world that really isn’t set up for autistic people?”

Is it easier for us because Billy doesn’t exhibit a profound physical sign of his special need, as a child in a wheelchair or with Down’s Syndrome does? I don’t know. I haven’t been the parent of a child with those challenges. I can only guess that there are days when, like me, they think every other parent has it easier. But even on those days, I’ll bet when they look at their child, they know that they’ve never seen anything more beautiful.

with autism

What autism looks like is really immaterial. What’s more important to me is what Billy sees when he looks at the rest of the world. Because from where I’m sitting, looking at him right now, things are looking pretty good.

Amanda Broadfoot is a freelance writer, wife, and mother of two who blogs about the wild, wacky, challenging, beautiful life on the spectrum at http://www.LifeIsASpectrum.com.

About Francesca

Francesca has an extensive background in content marketing, public relations, and social outreach. She oversees all Operations at Sway Group, including our robust metrics capabilities. Prior to joining the online world, Francesca oversaw viticulture and oenology at various wineries in both California and Italy, and managed regulatory affairs and facility approvals at the biotech company, Genentech. Francesca has been featured on CBS Sacramento and Food Blogger Pro’s podcast. She has also hosted an AMA webinar and spoken at Social Media World.

34 Comments

  • Irene Penny says:

    Beautiful post! Well done. It was suggested to me to have a little card made up with autism info websites on it to hand to those scowling folks at the grocery store during meltdown moments, and to say “I’m sorry my child with special needs is disturbing you, here is some information if you would like to learn more about autism.” Sha-zam.

  • My sister has Aspergers and was diagnosed 2 years ago. Thanks for sharing your story!

  • S Club Mama says:

    Amanda,
    this made me just tear up. My son is 3 and has autism. I love the sign you wish you had sometimes. Sometimes I wish I had a sign around relatives (when meltdowns happen): “if my son cries, he doesn’t want grandma/grandpa/auntie/daddy’s help – he wants his mommy and it’s ok!”

  • Tara says:

    Hey all! can’t wait to check this blog out…make sure to check out my giveaway!
    http://livingintaradise.wordpress.com/2011/04/16/giveaway/

  • misssrobin says:

    I love this post. I wish we all, as parents, looked for more of the beauty in our children. And I wish we were all more supportive and less judgmental. Every child is different. Why not celebrate them all?

  • I totally agree… I wish I had a dollar for every time someone says, “but he looks normal” – great piece!

  • Your son is adorable! I am a teacher for kids with Autism and there are many times when I take a moment to try to see things from my students’ perspective – curious as to what they see that i don’t. Many times, they show me something new and better.

    *****
    April is Autism Awareness Month. I’m dedicating my blog all month long to Autism.

  • Leah says:

    Thank you for such an honest look at autism and what it really looks like. I know many friends with autistic children on both ends of the spectrum. It’s certainly not a life sentence and I think the more people who show their children leading happy lives, the better it is for society. Thank you.

  • Laura says:

    I’m studying to be a special education teacher (should be finished December 2012!!!!). And I want to work with children who have autism, cerebral palsy, multiple disabilities, etc. & I HATE bullying. I blog quite a bit about bullying, so when I (finally) have a class, the rest of the school better learn respect real quick, because I will not stand for any of my kids being bullied!

    • Gloria says:

      We need more heroin’s like you out there when we cannot be…thank you Laura for wanting to make a difference in our chidrens lives.

  • Ninisays says:

    I really enjoyed your post. We don’t have kids but every year hubby works with kids with different disabilities helping them enjoy their favorite sports. This year we worked with “The Friendship Circle” which is an organization helping Autistic kids. I was able to see these kids he worked with, all different ranges of Autism but all one thing: BEAUTIFUL! You are an amazing mom and I love the way you handle Billy’s under the table move. You attitude and outlook is refreshing!

  • Jean says:

    What a great post Amanda. I couldn’t agree more with so much of what you say. After a while, you do stop really caring what others think, but still would love that sign.

    I have thought how great it would be, but I would never do this, to get Jaylen a shirt that says, I have Autism. And I saw a mother the other day, at an Autism event, who I am sure would have loved it. The looks and stares she got were just terrible, but I knew exactly what was happening. They aren’t just brats, we aren’t just bad, non disciplining parents. Our kids have invisible disabilities.

    You are an amazing mom. I especially love how you realized that what Billy was seeing in his spot under the table was amazing. I try to do that, but not often enough.

  • Patty says:

    Thanks for sharing. I have a sweet son on the spectrum. He is 13 years old now and is one of the sweetest most considerate human beings on earth with a great big heart. He also has developed quite the sarcastic sense of humor. Our biggest fear was that our son was not going to be able to develop frienships and live a life of loneliness. Happily, sending him to school and because he is such an amazing person, he attracts nothing but good people. He has great buddies and is now in band. He is progressing greatly and is now even taking swimming lessons (he used to throw a fit when we put him near the water). We also suspect our 8 y.o. is on the spectrum but have not had him tested nor do we plan to. We plan to just treat him like we’ve done his brother, with love and understanding that maybe his view of the world is just a little better than ours. 😉

  • Kimberly says:

    This is a beautiful post. Thank you for sharing. I think this week of posts is a great idea!

  • SarahK says:

    These stories are so real and touching- the pictures are goooorg, too.

  • Grams says:

    What a beautiful, beautiful boy!

    A week focusing on autism is a great idea. It can only be a good thing to make us all more aware of the spectrum of special needs that these families face.

  • Lala says:

    This really is a great post!! I learned about Autism several years ago when my good friend had her first son, who has Aspergers. I was clueless about it. As I spent more time with them, I started to really understand more and see first hand, the difficulties. She now has two boys and the youngest does have Classic Autism too. I give much credit and love those families with similar struggles. If only the rest of the world would take a moment to sit back and really educate themselves about autism.

  • :::aj::: says:

    As someone who has seen quite a bit of autism (my ADORABLE nephews, and some of my close coworker’s children), I’m really glad you posted this. I’ve gotten my company to start working with MIT Media Lab on some of their technology to help parents understand their kid’s emotion. It’s so inspiring. Thanks so much!

    <3
    aj

  • Maggie Sessoms says:

    Thank you SO much for writing this! Your life sounds a lot like mine! Although my son has transitioned out of many of the “typical” ASD behaviors, he is still “special”. His quirks are what I love about him most, and they don’t feel like problems for me anymore…I “get” him 🙂 Even though I am VERY happy, proud, relieved, etc…that he isn’t classicly Autistic, I am grateful to have been immersed into the world of Autism and gain true knowledge into this common issue. Everyone has someone dealing with this, and a little education would go a long way!

  • My niece is on the spectrum but was not diagnosed until she was in college. Times have really changed with early intervention.

  • Gloria says:

    I forgot to ad my twitter handle…below
    I must have written my website incorrectly…but it’s alive at http://www.baxies.com

  • Gloria says:

    My 11 yr old daughter has Aspergers…the normal response from her Dr, teachers and other ignorant people are that it’s so rare for girls to have Autism…that it must be me. I’m the one who wants something to be wrong with my child. The pain and the mountains I’ve climbed to help my daughter to receive a good education has been the fight of a life time. People who suffer from Aspergers, a form of Autism on the higher functioning end of the spectrum are very complicated. It took us until she was in 4th grade to understand that she was in fact on the Autism spectrum. It was when she said she wanted to commit suicide that I went full steam in to getting her into the best educational setting. She is in 6th grade and is now as happy as a person can be. She was tested as a gifted child in 2nd grade but was always performing at or below grade level. She is now able to perform in school as a gifted child. She now reads & comprehends at the college level whereas in her previous school she was reading barely at grade level. But know this, special education has been cut in half for 2011-12 by the government. One more cut and my daughter will be back in the public school system, back into being bullied, back into not being understood…back into therapy and I will possibly be trying to save my daughter from killing herself again. I’m hoping and pray that those of us who have gifted children with disabilities and those of us who have children with Autism are spared from the eminent government budget cuts.

  • Jen says:

    I with Dani G! Amanda is one of the most supportive autism bloggers and moms out there! Great person to start this feature.

    I write about my experiences with raising a preschooler on the autism spectrum at http://www.wantapeanut.com.

  • Jenny says:

    This is a great post. I get comments about my son all the time, so we had him checked out (mainly because of our main medical concern for him) He’s still in the evaluation process but they think he has Aspergers. And it’s hard because I get comments from family and some doctors and stuff saying this was MY fault. That I did this to him. And I know it’s not true but it still hurts… 🙁

    • Gloria says:

      They will all blame you and you can’t help but to want to take responsibility…but don’t be a victim. Focus your pain on helping your child. Helping him and seeing him grow as a person will strengthen you.

  • ramona says:

    I worked with an autistic girl for years and this subject is near and dear to my heart. Great post

  • What a beautiful post.

  • Cheryl D. says:

    Great post, Amanda! Thanks so much for sharing your story with such beautiful words! And thanks to SITS for spreading some autism awareness!

  • This is a great explanation. Until this past year, when I “met” several blogger moms with autisitc children, I never really had a clue. I was one of those moms at the grocery store who wished you would just do something with your screaming child. I have now changed my perspective and blogging has helped me to be able to understand better what life with a child with autism is like.
    I am looking forward to reading more of this week’s posts!
    Bernice

  • Gina says:

    My son has Asperger’s, so he’s high-functioning and more communicative than most ASD kids, and we still struggle with many of the same problems. We were at a playplace recently and a woman tried asking my son to stop something… but he doesn’t respond to most verbal communication. He wouldn’t look her in the eye. She flipped and started yelling at me and calling me and my son all sorts of terrible things. She wouldn’t even listen to the fact that he’s on the Autism Spectrum; he handles things differently. I was able to step in and get him to stop doing what he was doing, but the damage had been done. The hurtful things had been said and the ignorant woman remained the ignorant woman.

  • Ashley says:

    Couldn’t have picked a better post to start the week! Thank you so much for doing an Autism Awareness Week! I’ve never seen anything like the Autism community and, like Dani said, it really is a sisterhood. Since our son was diagnosed, I’ve gotten to know some of the most amazing mothers to ever walk the earth! So glad to see some of them being featured here! =)

  • Heather says:

    Thank you for sharing your story. It has been a year since my son was diagnosed with Aspegers.

  • alicia says:

    Couldn’t have said it better myself. My 11 year old son was diagnosed with a mild form last Aug. And this makes so much sense to me and explains so many unexplained behaviors in his life. But I am trying to love him and be the best mom I know how. I shared a post about my little man last week. http://www.projectalicia.com/2011/04/celebrating-my-little-man.html

  • Dani G says:

    Those of us raising kiddos with Autism are members of an elite sisterhood, but we’re willing to share our stories in effort to raise awareness and spread a little understanding and compassion while we’re at it.

    This is so fabulous!! Amanda, I love you, sister!