What It's Like for Me as a Woman on the Autism Spectrum

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My name is Cass, I’m a 30-year-old graphic designer and I have high-functioning autism spectrum disorder (ASD). Like some other women on the spectrum, I wasn’t diagnosed until adulthood. It was recent; in fact, it was only last year. It’s still very much a secret as well. I had no intention of telling anyone, but my husband accidentally “outed” me to my mum, so then I tried to tell one of my sisters and then I gave up on telling my family. Both my mum’s reaction and my sister’s reaction to the news was immediate and negative: “No you don’t have autism.” My sister called it a pathology. I was so hurt.

I tried a few close friends and they had similar reactions. All of them said things like, “I don’t see that in you” and expressed general disbelief. So I gave up telling people. My husband consoled me that it should be enough for me just to know, and not to look to others to validate what I know to be true. I married a wise man. So I stopped telling people. My other two sisters don’t know, my in-laws don’t know, the majority of people who know me wouldn’t have a clue. Being a designer does tend to give you latitude for being a bit quirky; I guess I chose my camouflage well.

My husband on the other hand was amazing, as he so frequently is. When I told him what my psychologist suspected, and what in myself I knew for certain, he was reflective. I could almost feel him working it through, then in his quiet way he said exactly what I needed: “I think that fits, too. How do you feel about it?” You see, he’d become something of an unofficial expert on autism. Our 4-year-old son had been diagnosed with severe ASD (among other things) nearly two years earlier.

What I don’t think people realize about women on the spectrum, especially high-functioning women, is that sometimes we can mimic and model behavior perfectly. I can only speak for myself, but I know that my “social mask” was in place by about age 16. If you met me now at a party or out socially, I would present as a highly social, outgoing and self-confident woman, and as much as I would like to be that way, I’m not. I struggle daily with things like anxiety, self-confidence, selective mutism, OCD, ridged thinking and trying to cope with situations that are unpredictable or out of my control. I’m photosensitive, struggle with crowds and too many different noises at the same time, and I’m funny about textures.

Professionally I struggled. Why call someone when I can email them? I took criticism, even in its most constructive and valid forms, as a personal attack. As one of my roles as a designer, I had to attend social networking functions that involved public speaking and making small talk with what seemed like a never ending sea of people. By the end of one of these functions, I’d go back to the studio, talk nonstop at high speed for about an hour and then I wouldn’t utter a single word for the rest of the day. If someone talked to me I wouldn’t hear them, it was like static on a TV ringing in my ears. I now know this is a sensory meltdown, and I try not to put myself in situations where this can happen. Even attending dinner in a crowded restaurant, lots of ambient noise, table conversation and close quarters will leave me needing frequent bathroom breaks or trips outside for space.

Motherhood is a challenge for me (like all mothers I know), and I struggle with the little things. I struggle to go with the flow and can get panicked and anxious if the baby wont sleep when she’s supposed to or feed when I think she should. I love my routine and I need the safe predictability of knowing what’s next. I envy those mothers who seem to instinctively know how to mother; it really doesn’t come easily for me. I honestly spend all my mothers’ group catch-ups watching other mothers interact with their children, so when I go home I can try it out with my kids. I also have a predisposition to post-natal depression and anxiety.

Having a diagnosis of autism was a relief for me. It allowed me some freedom and allowed me some room under my stifling mask to breathe. It was the beginning of a celebration. Not all people with autism are savants, act like Rain Man, can fix your computer or have language delays. Some of us just struggle with the little things in life. If someone you know tells you they think they may have autism, don’t be dismissive. If they are like me, it took a lot of courage to own it enough to say it out loud and make it real.

It’s hard to describe the things that make me different from your average woman, wife, mother, professional. The older and wiser I get, the more confident I grow in my own skin, the more I’m letting my quirks show. I want to be the best possible role model for my children, and for me that means celebrating my unique Aspie quirks, the good and the challenging.

My name is Cass. I don’t like peas because they roll and touch the other food on my plate, my tea must be made at the exact moment the water boils, I can’t sleep with the wardrobe door ajar, I hate how my husband squeezes toothpaste from the top of the tube and I rub my feet together to soothe myself when I’m stressed (I’m doing it right now)… and I have high-functioning autism spectrum disorder.

The Mighty is asking the following: Tell us a story about a time you encountered a commonly held misconception about your disability or disease. How did you react, and what do you want to tell people who hold his misconception? 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 Share Your Story page for more about our submission guidelines.

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A Letter to Parents of Children With Autism, From an Autistic Adult

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Dear parents of children on the autism spectrum,

I’m an adult who was diagnosed on the autism spectrum, and I’m one of the many autistic adults who would love to help you understand your children, if you will let us. There’s a lot of emotion surrounding autism and parenting in general, and I will be the first to admit I don’t have the perspective of a parent. But I do have the perspective of growing up as the weird kid who’s having a lot of difficulty with ordinary things.

I do a lot of reading both in the autistic community and parenting communities. I see a lot of vehemence from some of you about us not being like your children and often a rejection when we offer advice. I feel this is partly due to said advice being offered in a way that causes parents to feel attacked, as though their worthiness as a parent is under the microscope. Sometimes this is the case, as autistic adults can have a lot of built-up hurt from a lifetime of being treated in awful ways for their differences; it can leak out over emotional topics. Often it can be a matter of incorrect tone in conversation because autistic people can be blunt and we have trouble modulating this. However it may seem from the outside, we’re motivated to want the best for autistic children because they’re a part of our tribe, and how you treat autistic adults today is how your children will be treated by society in the future.

A drawing by the author, Andrea Michael

A common argument put forth to negate our input is that because we can communicate in ways you understand, we’re “high-functioning” and not worth listening to because our experience is so very different from your child’s experience.

I was diagnosed with Asperger’s syndrome (or ASD level 1 in the new DSM criteria). I had no speech delay, I was hyperlexic as a child, exceptionally bright in school and I’ve been identified as having a savant skill in art. However, even now as an adult there are things I struggle with — so much so that I can be considered “low-functioning” in those areas and rely on support to manage them.

Autism is such a mixed bag of strengths and weaknesses; each one of us is completely unique in the various functions that have been affected and challenges we face. If fate had cast the dice and my brain had wired slightly differently, my speech and various bodily processes may have been included in those lower-functioning areas.

Despite our varying abilities to pass as “normal” at a cursory glance, there are many areas in which we experience similarities to your children, and that facade of normalcy was hard won over our lifetime and breaks down easily. To maintain it can be an effort of monumental proportions that take up a lot of energy, often leading to mental health problems over time, as it has with me.

Please believe me when I say I understand many of your child’s difficulties. I have insight on the meltdowns and shutdowns, the self harm, stimming, aversions to touch and eye contact. I understand how they feel when nothing is making sense and everything is fear and anxiety. I know what it’s like living with sensory problems that can take away every coping mechanism I have in the blink of an eye. I understand being swept up in obsessive focus on topics/objects. I know the terror of feeling like social interaction will never make sense no matter how hard I try. I understand having emotions so intense that I can’t express them no matter how much I want to so I appear to lack empathy. I know what it’s like to miss the signs of someone feeling bad or angry and accidentally cause them more upset. I know how it feels to have a body that doesn’t work quite right with a lifetime of digestive problems. I understand the heartache of seeing family members struggling and hurting because I’m different.

Some parents wonder if their autistic kids love them because we often don’t show it in ways they understand, and for most of us the answer is a resounding “yes!” — with everything that we have in whatever ways our various abilities will let us. There are so many areas where parents are led to believe one thing, but we may feel entirely differently, and it breaks my heart to see parents and autistic people at odds when we both want the same thing. Yes, some of our views are confronting, but please at least think about them and try to understand why we may feel the way we do. Please let us help you in understanding your children — there’s a large community online of autistic adults from all parts of the spectrum out there who are articulate about their experiences, including those who are nonverbal who have found their voice through writing. A quick search for “autistic adult blogs” should start you on your journey.

Read our blogs, talk to us, let us in — we want acceptance, and we want to help you and your children.

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Our 7 Autism Myths

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We were warned, and we pretty much listened. When my son Evan got his diagnosis in 2007, we didn’t Google “autism.” Our most relied-on sources of information included doctors, books and other parents.

When friends said they had an uncle’s brother’s cousin’s neighbor’s son who had autism and we could talk to them, we did. Eight years ago it seemed a little harder to find someone on the spectrum. Now it seems like everyone knows at least one person with autism.

In the months following Evan’s diagnosis we read a lot of books (and yes, we did end up looking online, too). We asked a lot of questions, and we got a lot of great information and advice. But, as we look back at some of the things we were told or read, we shake our heads in disbelief about the stereotypes and misinformation that came from trusted sources so many years ago. Here are some of my favorite fallacies.

1. The “window of opportunity” closes at the age of 5. There is no magic window of time to help a child overcome some of the challenges that accompany autism. For us, early intervention was crucial and probably most beneficial, but there’s no time limit on intervention or progress.

We panicked at Evan’s 5th birthday because his ability to verbally communicate was minimal. His meltdowns were increasing, not decreasing, and we couldn’t get him to stop demanding that each and every light be turned on no matter how bright it already was. He was almost 5, and we desperately needed more time to reach our son, to help him feel comfortable in his own skin.

Then something unexpected happened. Evan turned 6 and continued to progress in his development and desire to interact with others. Even now he acquires or masters skills and makes progress in ways we never imagined. For example, instead of just making requests when he talks, today he’s able to verbalize thoughts and feelings and often asks and answers meaningful questions.

Not so long ago, some friends whose kids are in their 20s shared the recent milestones and first-time accomplishments of their sons and daughters. Did I mention these kids are in their 20s? The window never closes.

2. People with autism lack empathy/don’t have feelings. Wrong again. Autism doesn’t make someone incapable of emotions. It just makes it hard to communicate feelings or recognize the emotions of others.

Evan saw and mostly enjoyed the Disney movie “Inside Out” (although he found parts of it boring – not enough destruction). The film is set in the mind of an 11-year-old girl where her emotions — joy, sadness, fear, anger and disgust – try to help her adjust during a family move from the Midwest to San Francisco. One of the takeaway messages from the movie is that sadness is not only OK but necessary. This message was not lost on Evan, who cried during the ending.

3. Individuals with autism are not capable of showing love. This myth seemed to hold true during the first four years of Evan’s life. Then, we did not get a sense that he felt attached to us in any way. I used to wonder if he’d even notice if suddenly we were not around.

Those years, parenting him reminded me of a child with a pet goldfish. The child loves his fish. He plays with and takes care of it by providing basic needs, like food and clean water, but the fish never appears to notice the child. While it seems harsh to compare my son to a pet goldfish, in all honesty it’s the most accurate description I can think of (as painful as it is to admit).

Fortunately, as Evan got older, he started to show us his love. He did this by playing with my hair, smiling at his siblings and burying his head in his dad’s arms. More recently, he began responding to an “I love you” with “I love you, too,” but it was something we taught him to say. We were glad to hear those three words from a child we once thought might never talk. But we still wondered if he was truly capable of reciprocating our love.

Now he totally understands. He knows how it feels to be loved, and he knows how to love. He says “I love you” spontaneously (and appropriately). Sometimes, like any kid, he says it because he wants something, but mostly it’s because he loves us. Recently he crawled into bed with my husband Jon and me, and the three of us snuggled. “This is what love feels like,” Evan said. Yes, Evan gets it because that is exactly what love feels like.

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4. He will likely be really, really good at something – like Rain Man. We were so hoping to discover that Evan had an autism superpower but so far nada, zilch, nothing.

Once he heard the music from the ice cream truck and immediately played it on the piano. We thought we’d discovered a savant skill, but right now he’s a one-hit wonder. We’re fine with that. It just would have been cool to have a prodigy living under our roof. Someone’s gotta pay for the all the occupational therapy, physical therapy and social skills groups.

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5. A child with autism likely will lead to his parents divorcing. “Eighty percent” – that was the statistic that kept getting thrown around as the divorce rate among families with autism. Those statistics never made sense to me because the vast majority of couples I know with children on the spectrum are still together. I once had an opportunity to spend a weekend at a retreat with 29 other moms of children with special needs, and only two of the moms were divorced. It turns out, a 2010 study officially debunked this myth.

6. People with autism do not lie. I’m pretty sure this fib was started by someone with autism. When Evan was younger, it was true – we never, ever caught him in a lie. For some reason, that changed a few years ago. Fortunately for us, like most young kids, he’s really bad at it.

Just the other day he called his brother a “fat, stupid pig.”

The entire family heard it.

When confronted with a stern motherly, “What did you say?” Evan’s first response was: “Nothing.”

I asked him again.

“I said, ‘love you.’”

These interactions remind me of the main character in the book “David Gets in Trouble,” by David Shannon. Even when all the evidence points to young David as the culprit of mischief, he always has an answer.

“It was an accident!”

“I didn’t mean to.”

“No! It’s not my fault.”

7. People with autism don’t want friends and like being alone. Yes, early on this appeared to be true. But it’s hardly the case now. Evan really likes having friends and enjoys the company of others. The problem is that he lacks the ability to spontaneously develop effective social interaction skills.

Mostly, we have to teach him these skills. As an example, he does not always know how to get people’s attention, so he will make silly noises in an attempt to engage others. We tried to teach him to look at someone and smile. He followed our advice exactly as we told him. He caught the attention of a teenage boy in a crowded elevator by smiling at him. What we failed to teach him was what to do next. He held his gaze and smile for a good 10 seconds or more. The teen shifted uncomfortably and Evan shouted, “Look, I got his attention!”

His playdates – which he asks for frequently – may look a little different because he’s often satisfied with the mere presence of a friend and does not need the interactions seen among his typically developing peers. While he still often chooses to play alone, he very much craves social interactions – but often on his terms.

Socialization is one of Evan’s biggest challenges, but he tries. Often it’s by asking people if they have spider webs in their basement or what kind of lights they have in their house. But that’s why there are social skills groups and activities we do at home to teach him the “rules” of socialization that the rest of us inherently know. But, a lack of social skills does not mean a lack of interest in socializing.

  Jennifer Lovy and her family

This post originally appeared on Special Ev.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires 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 “Share Your Story” page for more about our submission guidelines.

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This New App Could Help Kids With Special Needs Develop Daily Life Skills

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Seth Truman had grown frustrated with adults always reminding him how to behave in public. The 13-year-old has Asperger’s syndrome, and remembering to complete daily activities and understanding social cues can be difficult for him, The New York Observer reported.

So, Seth came up with an idea for an app to help kids with special needs remember to complete daily activities, like brushing their teeth and putting on deodorant, to eventually help them form lifelong habits.

In partnership with Tech Kids Unlimited, a technology-based educational nonprofit that works with students with special needs, Seth and other students in the program worked together to develop such an app. LOLA (Laugh Out Loud Aid) is a program that helps people with special needs develop daily life skills through funny reminders.

Users set challenges for themselves through the app, which reminds them through humorous short animation and images to complete daily activities at specified times throughout the day. If the user completes the activity, the app gives him or her a virtual gold star. If not, the app shows a crying face and a 10-second phone lock-down with the message, “LOLA is sad.”

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LOLA reminds app users when it’s time to brush their teeth. Screenshot via YouTube video below.
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What happens when a task isn’t completed on time. Screenshot via YouTube video below.

The LOLA app won “Best Social/Emotional Solution” and “Popular Choice Award” at the Connect Ability competition in late July, which won Tech Kids Unlimited $12,000 in prize money. After the basic version of the app is released in fall 2015, the development team hopes to use the prize money to develop future iterations of the app — particularly a version where parents, kids and teachers can work together using one app.

Beth Rosenberg, the founder of Tech Kids Unlimited, said LOLA’s development team hopes the app encourages students with autism and other special needs to incorporate technology into their lives, according to The New York Observer.

The special needs world has been left out of the technology realm,” Rosenberg said, according to the outlet. “These kids have computers in their brains. They’re so smart, and they just need to be taught in a different way.”

Learn more about the LOLA app and the story behind it in the video below.

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5 Things Aspies Wish Other People Understood

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Hi there! I’m Catherine, and I’m a proud Aspie. It makes me who I am.

There are a lot of misconceptions about being on the autism spectrum. Today, I want to tell you about some things I wish people understood about us Aspies. I wrote a bunch of examples on a piece of paper and decided to share my top five decisions with you. Remember — everyone on the spectrum is different.

These are five things I personally wish people understood about having Asperger’s syndrome.

1. Sometimes we, too, can be nonverbal

I say this because “verbal” is often in people’s descriptions of Asperger’s syndrome. But we, too, are on the spectrum, and when we shut down or have a meltdown we can be nonverbal. We may even come off as “lower functioning” during this time, and that’s OK. We all react to an overwhelming sensory overload in our own way. Those who loves us most know what we need or don’t need in that moment. Please understand even though we are “higher-functioning” we also have moments where we’re not. That’s OK.

2. Don’t listen to the media.

The media doesn’t always speak the truth. Journalists are most likely not professional doctors, and they’re often not even speaking to doctors who know about the autism spectrum. Just because someone is a “loner” doesn’t mean they have Asperger’s syndrome. Asperger’s syndrome isn’t something that makes someone kill somebody else. We will not shoot up a school. Please understand we are empathetic. We experience feelings too. We just have trouble expressing them. Sometimes, we feel the others’ emotions to an extreme. We can sense what you’re feeling before you tell us. 

3. There’s more to it than what you see.

Yes, we have may trouble socially, but other challenges can exist. Some of us may have a learning disability. For example, I have Central Auditory Processing Disorder, which means I can’t process what I hear the way others do. Sometimes I need to tell people to write on a piece of paper or look at me when they talk. People with Asperger’s may also have digestive problems, ADD/ADHD and/or sensory issues. We may have hypo- or hyper-sensitive hearing, touch, sight, smell or taste. There’s more to a diagnosis than what’s commonly acknowledged, so please understand these other common challenges.

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4. Socializing isn’t easy.

I’ve learned that not everyone is going to talk to me. I have to make the first step too. In my first semester of college I told myself I wanted to make a friend. I only had one class this semester because my anxiety was so high. This was five years after I’d graduated high school. I sat next to a girl in the computer lab and decided even though I’m not a purse girl that I would compliment her purse in the hopes that she would say something back. Maybe we could talk. I practiced this for weeks until one day I just decided to do it. My voice was shaking, but she said thanks and I responded with a question about the class assignment. We kept talking and ended up in the next three classes together. After three years, we’re still good friends. Yes, we want to have friends too; it’s just hard for us to make the first, or even the second, step. Sometimes we wish people were a little bit more understanding and realized we don’t always want to be alone. 

5. Stimming isn’t only for the kids.

I’m 26 years old, and since I was 7 have been doing the same thing when I get overwhelmed with hyperactivity, when there’s a thunderstorm, when I get anxious, when the sensory overload begins.  That’s OK. Now that I’m older, I sometimes can acknowledge a situation and be able to handle myself, which means I stim to avoid a meltdown or shut down. Remember, Aspie kids grow up to become Aspie adults; we don’t grow out of Asperger’s syndrome. Some of us may be able to be more subtle about our stimming and some of us sometimes cannot. Please understand, stimming helps us, and it’s OK to do if it doesn’t hurt us.

If I could add a number six it would be that most of us who understand, love and are proud of our diagnosis don’t see it as a disability. We wouldn’t ask for a cure. I’m one of those Aspies who would never ask for a cure. I am who I am, and I’m on the autism spectrum. I’m an Aspie. I’m unique, and I may have certain challenges in my life, but I wouldn’t change it. I’m proud of myself, and I love who I’ve become. A cure isn’t needed because I’m not sick. 

Of course, every life experience is different for each individual. I just wish others would take the time to understand the people they know on the spectrum.

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17 Autism-Related Tattoos and the Wonderful Stories Behind Them

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Bumper stickers, T-shirts, ribbons — raising awareness for autism comes in many forms. Some people, though, opt for a more permanent route when it comes to bringing acceptance to the condition they care about. We’re talking about tattoos. Below, 17 people shared their autism-awareness ink with us and then explained what their design meant. Some feature the popular rainbow-colored puzzle piece, a symbol adopted in 1999 as the universal sign of autism awareness, according to The Autism Society. Others feature poems and quotes that have taken on new meaning since an autism diagnosis. All of them, though, have one thing in common: acceptance.

Take a look:

1. “I had the puzzle pieces encased in a shield because as the father of my children, I’m their protector. I fight for them. I had it placed on my forearm for all the world to see because I am not ashamed.” — Jon Leger

JonLeger

2. “We got our matching tattoos on April 2, 2014 to mark Autism Awareness Day for our beautiful boy. It’s green as that’s [his] favorite color.” — Janine Lomax

3. “My daughter is nonverbal autistic, and I dedicate the Rascal Flatts song ‘I Won’t Let Go’ to her. [She] loves to swing on the swings.” — Samantha Tabala

Samantha Ranzie Tabala

4. “It just symbolizes the love and support I have for my brother.” — Marrisa Coyle

Marrisa Coyle

5. “I’ve flip-flopped between what I want to do with my life, but one day I was fortunate enough to meet a young individual [who] was diagnosed with autism. When I met him it was like a light turned on. I spent the next five weeks tutoring him and teaching him how to play music. It was the most fun and rewarding thing I had ever done.” — Cody Thompson

CodyThompson

6. “I count my blessings every day. One of those blessings is my son and the gift he has given me, which is an opportunity to see the world through his eyes.” — Kathy Hooven

Tatto reads: “The meaning of life is to find your gift. The purpose of life is to give it away.”

7. “As a whole, the piece is a reminder of that day I found out my son was different and everything he has gone through to get where he is at today. To take something so painful and turn it into something beautiful.” — Jorge Porras

Jorge P

8. “It is dedicated to my students who have taught me more than I could ever teach them.” –Katie Doherty

Katie Doherty

9. “I was 15 when I had her, and two months after birth she was diagnosed with optic nerve hypoplasia (completely blind). When she was 5 years old she was diagnosed autistic. So, I chose to put her name in braille to represent her main diagnosis, and her middle name is Irene, which means ‘peace’ in Greek.” — Connie Bonilla

Connie Bonilla

10. “There are a few reasons I got my tattoo. The first being my best friend’s younger sister has autism. The second reason is for my soon-to-be nephew, who is on the autism spectrum. And the third reason is a personal one. The phrase ‘look past limitation’ stood out to me immediately when picking out my tattoo. I have spina bifida, and my whole life has been overcoming the obstacles that come with it.” — Felicia Spataro

Felicia Spataro

11. “One of my best friend’s son has autism. I put [my tattoo] where I did so more people will see it and ask me about it to spread awareness!” — Terin Garrett

Terin Garrett

12. “I’m not ashamed of my little brother’s disorder, nor would I trade him in for any ‘normal’ person in the world.” — Alex Weldon

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13. “I got it for my sister, Skylar, whom we found out had autism when she was 4. She turns 15 in about two weeks and starts high school in August. She’s the light of my life. Ariel is her favorite princess, and the name is in her handwriting.” — Alex Adkisson

Alex Adkisson

14. “My brother was diagnosed when he was 2, and it has a huge impact on my family’s life. It also reminds me that even though life hasn’t been easy… the situation has made us close as a family.” — Abby Crouch

Abby Crouch

15. “My youngest son was recently diagnosed with autism and I am afflicted with a rare disease called Behcet’s. I want whoever sees my tattoo to know, even though we [have] these conditions, we keep our heads high and live life to the fullest. Every day life hands you struggles, but you can rise above them and find the great joys in life, too.” — Amy DiMonda

Amy DiMonda

16. “I got this poem tattoo because my sister is nonverbal but has been writing beautiful poetry from a very young age. This poem is featured in a book that my sister and my mom wrote titled “I Am In Here: The Journey of a Child with Autism Who Cannot Speak but Finds her Voice.” The poem is right in the front cover of the book, and I got the tattoo in the same exact font as it appears in the book.” — Gale Bonker

Tattoo reads: “I sometimes fear That people cannot understand That I Hear. And I know That they don’t believe I go To every extreme To try to express My need to talk. If only they could walk In my shoes They would share my news: I am in here. And trying to speak every day In some kind of way.”

 17. “The tattoos are both ways to honor my son and open a door to discuss autism with someone who might not know about it or who might want to know more about it.” — Diana Gatrell Anderson

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 Do you have an autism-related tattoo you’d like to share with us? Send a photo and the story behind it to [email protected]




17 Autism-Related Tattoos and the Wonderful Stories Behind Them

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