What I Wish Would Show Up When You Google 'Autism'

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I recently read a terrific article reviewing a new television drama series centered on autism. The show is called “The A Word” and is a six-part series produced by the BBC (as far as I know it is still currently only available to watch in Great Britain but reflecting on the growing ease-of-access to international entertainment, I am certain it will come available in the U.S. soon).

The article about the show that I enjoyed was written by an adult on the spectrum and her father, and one of the things that stood out for me in the article was the father’s description of his daughter’s challenges in school, identifying it as a realm on the spectrum called “demand avoidance.”

What he described was so familiar, sounding so much like what my son experiences, that I wanted to learn more about this “demand avoidance.”

More to the point, I wanted to learn about tools and strategies to see if we could adapt them to help my son with his struggles at school.

After an initial search online, I discovered very little information that I could use, and it was frustrating.

There is a lot of information available about autism on the Internet — in truth, there is too much information about autism on the Internet. A lot of the information is too clinical to be of use (such as scientific papers) or too generalized (such as new media articles painting autism in broad, often stereotypical strokes).

Very few search results offer concrete tools and strategies for specific issues. In a lot of ways I think the disparate and unfocused information about autism currently available online mirrors the disparate and unfocused way our society has responded to understanding autism.

What I would really love to see is a one-stop shop of autism information; a site that would start at the 30,000-foot level (the broad strokes information) and then allow readers to drill down on the particular issues they need information about, all the way down to the clinical, in-the-weeds scientific papers if they really wanted.

The site would describe all the extraordinary that is on the autism spectrum, connecting the dots between research and theory, behaviors and experiences, tools and strategies, and the social and cultural.

It would offer tools and strategies for specific behaviors and needs, as well as opportunities for readers to interact with others to enrich what they know and are learning on their respective journeys.

Most importantly, the site would be alive; it would not be a dead repository of set, unchanging information, but instead would be constantly monitored, updated and evolve to reflect changing scientific and social understandings of autism, informed by its readers as much as by researchers, scientists and evidence-based studies.

If and when such a site shows up first in my internet searches, I will know our society has truly matured in its understanding of autism.

Follow this journey on Autism Mom.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. 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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Why Is There a Divide in the Autism Community?

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Looking back on my son’s first few years, nothing seemed “off.” I’d only really seen made-for-TV movies about autism, and let’s face it, I think they’re extremely poor representations of what autism is.

Autism wasn’t something that was talked about openly and honestly 10 years ago. I think a lot of parents are naïve and living under false assumptions. If a child talks by 2 or if there’s no regression around the same time, then this child you imagined in your mind is going to be a reality.

It turns out I was already raising an autistic child and didn’t have a clue. My daughter would be diagnosed with Asperger’s a few months shy of her 10th birthday. When my son started pre-K, all of the sudden I was that mom. The one the teacher always needed to talk to and the one who was getting letters home from the school social worker.

Seeing him around his peers, the differences were magnified. There was no denying he was “different.” So I did what I believe most parents do when they get a diagnosis of autism: I Googled it. Yes, I now know I was asking for trouble and misinformation.

Alarm bells went off in my head, and it felt like the world was crashing in around me. It’s a sensation of panic that’s hard to describe. I read every book and article I could get my hands on. I also thought there was a lot of scary information out there, not to mention some dangerous “treatments” that promise a “cure” for your “broken” child.

A year passed by, and the world didn’t come to an end. My child is still the same perfect little boy he was a year ago.

I started to relax into our new routine of therapy appointments and meetings at school. I got involved in the autism community, and once again, I was naïve to the fact that there is more than one way of thinking within this community.

You might stumble across a new page or group to like. Then it happens — you get caught in the crossfire. You’re quickly educated on function labels being offensive and how to properly address or speak about a person on the spectrum or autistic individual. Is it a disability? Is it a disorder? Do we need a cure? Is there anything to cure?

Everything you thought you knew has just been thrown out the window. You’ve just entered the great divide. On one side, you often have parents and professionals, and on the other, you often have autistic adults. Each side is strong in their convictions.

I would never want to dismiss what an autistic adult has to say. After all, my kids will grow up to be autistic adults. But there’s a growing friction within the ASD community. The words are flying back and forth on both sides.

You’re not like my child. My child isn’t as high functioning as you.

You’re neurotypical, you would never understand.

My child isn’t defined by his/her autism.

I’m autistic, not a person with autism.

When you say you hate autism, you’re saying you hate your child!

Applied behavior analysis is cruel.

Applied behavior analysis saved my child.

Awareness or acceptance.

Why can’t there be both? 

My head is once again spinning. Why is there a divide? Both sides serve the same interests: the care of autistic individuals. Both groups seek respect, jobs, education, accommodations and understanding.

It seems if both sides stopped pointing fingers at each other, we might actually get somewhere with the things we all want to accomplish.

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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Why I'm Not Afraid of Public Speaking as a Person With Asperger's Syndrome

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As a self-advocate, I have done a lot of speaking engagements about my life living on the autism spectrum. I have presented at schools to students and teachers. I continue to share my story at trainings for therapeutic staff support and mobile therapists several times a year. I have even done a TEDx Talk called “The Natural Rhythm of Stimming.”

One of the most common questions I’m asked is whether or not I get nervous when I present. People tell me I’m so brave for speaking. Many are surprised when I tell them I usually don’t feel nervous, embarrassed, ashamed or anything like that. They are surprised when I tell them that speaking about my own Asperger’s syndrome experiences is easy for me. Then I explain why.

woman standing in front of screen showing powerpoint
Erin giving a speech.

When I was in school, before I was even diagnosed, I tried to ask for help. Most people just told me I was fine and moved on. This was where I really started to struggle. It was hard for me to ask for help, and to hear someone say I didn’t even need it was so frustrating. I began to back down, and give up. Why should I speak up if no one wanted to listen?

Once I received my diagnosis in 10th grade, I noticed people began to listen more. They wanted to hear what I had to say. They wanted to understand. At that point, I realized that maybe I could get across to them the things I had been trying to say before.

For me, public speaking isn’t something to be afraid of. It’s a gift. It’s my chance to finally be heard after years of being ignored, misunderstood and doubted.

As Candice Cuoco, a designer on the TV series “Project Runway,” once said, “Whether people agree with your voice or they don’t, being able to speak it is what matters.”

People are willing to listen to me. Why wouldn’t I be willing to speak?

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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The Simple Question That Helped Me Advance in the Journey With My Sons With Autism

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There are so many different parts to a journey with autism. Sometimes you may think you’ve got things under control, and then it can fall apart. Sometimes you just manage to get settled and then suddenly you’re starting all over again with another child. Sometimes you think you have a strong fierce warrior momma exterior, and then you realize inside you can feel everything. Every. Single. Thing.

I wish what I’ve learned I can teach to my children so they don’t have to learn for themselves. That’s not the way this works though, is it? No matter how badly we want to protect them from pain, we can’t do everything. We can’t prevent everything.

We can’t stop peers from telling him to stop following them. We can’t help the other understand that things won’t always happen in his specific order. Most of all, we can’t help but see ourselves in them.

Parts of this road have been bumpy and jagged. I’ve felt lonely, confused, torn apart.

But just stop for one minute and think, can you let go of that?

two boys holding up rocks in driveway of house
Casey’s sons.

Can you let go of the parts that really don’t matter? For example, does it matter what other people think of you and how you manage your life and your family? Honestly, do they actually have any idea? That woman at the grocery store has no idea that you’ve been awake since 2 a.m. Again. Basically for four years straight now. The family member who thinks you’re a “tad” bit overbearing has never seen your child in the midst of a sensory meltdown, to the point of self-harm. No wonder you can scan the room for potential threats or triggers as well as a Navy Seal.

But for real, all of that? I’ve been there (frequently). I hate that I feel things so strongly sometimes. But what I have realized is that holding on to all the things I can’t change was stopping me from advancing. Literally holding me back. I need to be the best version of me so I can help them become the best versions of themselves.

I choose to let go of the fear, the anger, the pain. Of course they may come to visit, but they will not rule me. This isn’t an easy path, but so what if the road is uneven? It is a lot easier to navigate without holding onto the extra baggage.

boy with train set and jurassic world sign
One of Casey’s sons.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. 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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Malaysian Filmmaker’s Movie About Autism Aims to Reach Global Audience

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Redha” is a film about Danial, a 6-year-old boy with autism, and the challenges he and his parents face.

The independent motion picture was directed by Malaysian filmmaker Tunku Mona Riza, and she tells the Sun Daily that it was inspired by her close friend’s child, who has autism.

After a lengthy discussion, Riza’s friend introduced her to other parents of kids with autism, and she moved forward with production on the film.

“I want ‘Redha’ to be a movie that represents the voice of families with autistic children, and what they have gone through to bring them up,” Riza told the Daily Sun. “Almost all the scenes in ‘Redha‘ are based on true experiences.”

“Redha, the film, is not just about autism; it is about family, it is about the people we might know,” reads a brief bio on the film’s Facebook page. “It is about us.”

“The movie not only entertains you but also creates awareness about autism,” ­Shahili Abdan, the actor who plays Danial’s father, told the Daily Sun. “It tells you that no child should be discriminated against. All children deserve to be loved and cared for.”

The film was released on April 14, 2016.

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Why the Puzzle Piece Symbol for Autism Awareness Doesn't Do It for Me

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I used to love puzzles.

What a nice way to spend a lazy Sunday, going to and from a really tough puzzle and loving that feeling of satisfaction when it’s finally done. Then leaving it on the table to be admired, at least for a little bit.

I’m now the mom of a child with autism, and puzzles don’t really do it for me. I find I just don’t have the patience anymore — my patience is otherwise used for my kids.

Which brings me to that dang puzzle piece symbol for autism.

It never really bothered me before, until I really started thinking about it.

Some autism organizations use the puzzle piece symbol for autism awareness with the tag line, “Until all the pieces fit.” Well, tagline creators, I’ve got some news for you.

Those pieces? They will never all fit. That puzzle will never be completed. You never get that feeling of satisfaction upon completion.

Now before you all get riled up, hear me out.

Parenting — no matter if you parent a neurotypical child or a child like my TJ, who has autism — is a journey. There is no ending.

“Until all the pieces fit” contains the hope that eventually all those pieces, even the toughest ones, will fit into a nice, neat puzzle that you can stand back and admire.

For many of us, just as soon as we have figured out one tricky part of the puzzle, another one can pop up. Or maybe a year after we thought we had resolved an issue, it re-presents itself in a new form, maybe slightly different from its original presentation, but needs to be addressed all over again.

Parenting is fluid.

Wouldn’t it be nice if it wasn’t? Can you imagine finally finding out how that last little bugger of a puzzle piece fits into the whole picture, and you have laid before you a beautiful portrait that you have been waiting to see in its completion?

Yeah — not gonna happen.

Please, don’t get me wrong — there are plenty of amazing moments in parenting: moments of celebrating successes, solving problems, connecting to your child’s journey and life in a real and meaningful way. Joys. Sorrows. Ups and downs.

See? Fluid.

Instead of that puzzle piece, I like to picture something more like one of those desktop wave machines. Rocking back and forth, beautiful blues and greens, ebbing and flowing. And always in motion.

Without an end.

So in theory, that puzzle piece works for many, I get it. And I’m all for anything that increases autism awareness and acceptance in the world.

But for me, for my family, for my boys with unique ways of living in this world, give me a wave machine any day.

family in pool with dolphin

Follow this journey on Laughing… Like It’s My Job.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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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