How I Feel as a Teenager With Autism

Do you know someone with autism? Have you ever wondered what it feels like for them? As a 16-year old with autism, I know how it feels. Autism is my life, and it is something I have.

I am not ashamed of it!

My mom recently told me that when I was 4 years old, I asked her why kids called me weird. I realized from a very early age that I was different. I don’t know how to describe this feeling, and to be honest, 11 years later, I forgot how I felt when I was 4. But I can imagine my confusion with why I was different, and then understanding the word “autism” and what “autism” meant. After I realized I have autism, I wanted to hide it from everyone because I was embarrassed.

In the past, I’ve been asked about how autism makes me feel and how I cope with it. Sometimes I really don’t know. There is no “main feeling” when it comes to this disorder. Sometimes I can be happy, joyful, funny, respectful and outgoing. Other times I can be mad, frustrated, irresponsible, upset and reserved. It all depends on a number of factors. Sometimes the most random or silly thing shifts my mood. Examples include when I don’t get my way, when I am stressed with homework, or for no apparent reason at all. Within a minute, my mood can just change. I still haven’t found out the reason, yet. If I’m mad, little things can also make me feel better. For instance, hugging a stuffed animal, getting told a joke, or being able to let out my tears of frustration or sadness with my mom.

I have sensory difficulties that make me feel uncomfortable and agitated. Too many noises or too many things happening at once is very difficult for me. I need lots of hugs and hard squeezes to help me make my body feel “OK.” I can see how it’s weird when I randomly go and ask my parents for a hug in the middle of a store. Sometimes (in private) when I want a hug, I squeeze so hard that it makes others physically uncomfortable. I try to squeeze more gently now, but sometimes I can’t help myself.

I have found many ways to cope with autism. On the professional side, for many years and still now, I go to a clinical psychologist and child psychiatrist. Also, I see a speech and language pathologist at my high school. In the past, I have gone to speech, social groups, occupational therapists etc. On the personal side, my favorite way to cope is to use my heavy blanket. It always calms me down!

Autism makes me feel many ways. I feel different from others, and I think I feel my emotions stronger than many typical people do. Certain things can make me have strong feelings very quickly. As I write more, I will talk specifically about many of the things that cause me to think and feel the way I do.

Follow Ethan on Journey Through Autism.

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Viral photo of barber Jakob on the floor cutting Wyatt Lafreniere's hair. Wyatt is on the autism spectrum.

What to Keep in Mind When You See the Story of the Barber With an Autistic Child

Sometimes the news isn’t as straightforward as it’s made to seem. Ellen Stumbo, The Mighty’s parenting editor, explains what to keep in mind if you see this topic or similar stories in your newsfeed. This is The Mighty Takeaway.

The picture of Franz Jakob laying on the floor while giving a haircut to 6-year-old Wyatt Lafreniere, who is on the autism spectrum, has gone viral. You’ve probably seen several news outlets covering the story as a “feel good” story.

As the parent of two children with disabilities, I am thankful for the people who are willing to adapt for my children, rather than expecting my kids to adapt to them.

But there is a problem in how we are framing these stories. From where I stand, it appears everyone believes Jakob, the barber from Rouyn-Noranda, Quebec, is an extraordinary person for extending kindness to a child with a disability. He is touted as a hero for doing his job in a way that worked for Wyatt.

Yes, not every barber might be willing to get on the floor to cut a child’s hair, but Jakob did. I suspect Jakob is a kind person, and he would have done this for any child, not just for a child with a disability.

As a matter of fact, I suspect if he had been on the floor with a “typical” child, the story would not have made the news. And that is really the point, isn’t it? It is only news because the child is autistic, and we still live in a world that sees disability as undesirable, “less than,” and where only “extraordinary people” are able to show kindness. A world where people with disabilities are used as inspiration for others and as feel good stories. It is the able-bodied person rescuing the disabled person, rather than one human being being kind to another (fully) human being. People with disabilities are rarely given full humanity and respected as such, especially in the media.

The issue is not that Jakob is exceptional. The problem is there are a lot of people who do not consider people with disabilities as valuable human beings who deserve dignity and respect.

I also suspect Jakob did not think twice when he got on the floor; he runs a business and he was getting paid to cut the child’s hair. He did it in a way that worked for his client, and that is a sign of a well-run, professional business with a philosophy of doing whatever it takes to serve their patrons well. I do wish more businesses were as accommodating as Jakob’s, I really do, because sometimes our kids are turned away from services.

I would want Jakob to cut my child’s hair if I had a child who needed someone willing to work with their sensory issues. Of course I would. But  I would not think of him as a “special kind of person,” but rather as a creative and talented barber.

Jakob’s story mirrors the viral video of a young cashier at Chick-Fil-A who used sign language to communicate with a customer. The customer is a young lady with a disability who uses sign language. The video and stories accompanying it are framed the same way: “amazing young lady using sign language for customer with a disability.” We have another “hero” for being kind to another human being.

At my local Chick-Fil-A one of the cashiers speaks Spanish. When he serves Spanish-speaking customers, he speaks to them in Spanish. You don’t see his story go viral. The difference? In the first story, someone was being nice to a person with a disability who communicated with sign. People with disabilities are often used as inspiration for able-bodied readers. Their humanity is lost in the narratives.

So when you see these types of stories shared in the news, think of this:

1. Is the disabled person’s name mentioned and is that person humanized? Often, these stories focus on the “amazing” able-bodied people doing nice things for a person with a disability. Sometimes we get the name and age of the disabled person, but mainly we only know them as a diagnosis. That is dehumanizing.

2. Did the child or adult with a disability give consent for their picture and story to be publicly shared?

3. Is the story framed under the narrative of “the able-bodied hero rescuing the person with a disability?”

4. Would this be newsworthy if it happened between two able-bodied people?

I don’t want to spread the narrative that children with disabilities are hard to love and “bothersome” and only a few “special people” would be willing to step in and enter into their world.

Kids with disabilities are valuable and precious human beings. They are lovable, and entering into their world is not “extra work,” it’s simply life.

Editor’s note: If you are wondering how to help make haircuts easier for your child on the spectrum, here are a few suggestions from our Mighty community:

7 Tips to Help Your Son on the Autism Spectrum With Haircuts

5 Ways to Help Children With Autism Have a Great Haircut

Side view of Andrew Dugan working on his computer

The Autistic Visual Effects Artists Bringing The Good Doctor's Thoughts to Life

Lauren Appelbaum is the communications director of RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities for people with disabilities.

“The Good Doctor,” which ABC just awarded a full season, features a young surgeon on the autism spectrum who thinks in terms of visual images. What viewers may not realize is one of the show’s visual effects artist thinks in the same way.

Twenty-seven-year-old Andrew Dugan, who is on the autism spectrum, works in the visual effects studio at Exceptional Minds (EM), a nonprofit vocational school and working studio that prepares young adults on the autism spectrum for careers in digital animation and visual effects.

After completing EM’s vocational program, beginning part time and then full time for the last two years of the three-year program, Dugan was hired by EM to join its in-house studio in June 2016. A photographer and visual effects artist, Dugan is a very visual thinker. What viewers see when they watch “The Good Doctor,” Dugan sees in his life.

Dugan is one of five EM employees who completed split-screen shots for the first two episodes for ABC’s new series. Dugan, as well as Patrick Brady, Eli Katz, Tiana Fazio and Mason Taylor worked on split-screen composition, which involved creating a single, seamless shot from multiple takes. They combined two different takes of a scene using the performance of one actor from one take and another actor from a second take. Instead of reshooting, visual effects artists blend them together so it looks like it was the same take.

Exceptional Minds Executive Director Ernie Merlán said Dugan is a “star in our studio.” A quick worker, Dugan is making more money than anyone else in the studio because he is able to complete multiple shots. “His obsessiveness with detail has served him well in the job he is doing now,” Merlán said.

Dugan said his autism, as well as his ADHD, is an advantage for his career.

“I feel like it helps me in what I do. I get hyper-focused on whatever I’m working on. My ADHD sometimes makes me struggle to sit down and pay attention. With this work, because I’m interested in it, I can focus better than a lot of people.”

In “The Good Doctor,” the lead actor does not have autism himself, though he plays a doctor who does. While Dugan said he does not think it should be a requirement for the actor to have the disability he is playing, he said it is important that consultants make sure the actor is doing so properly and not just based on stereotypes.

Dugan also talked of the importance of people with disabilities having the option to be employed both in front of and behind the camera.

“It’s better if someone has a disability to be more independent,” he said. “Then they don’t have to rely on the government or their parents taking care of them. They’ll also be a lot happier.”

“Being in a career helps a lot with my symptoms,” Dugan added. “It gets me a lot more focused, wanting to wake up and do everything I need to do during the day.”

Co-Founder and Vice Chairperson Yudi Bennett said all people deserve the same opportunities.

“People who are neurotypical, without a disability, are allowed to follow their dreams, so why shouldn’t people who have disabilities also be allowed to follow their dreams?” Bennett said.

“Work is a paycheck but it is more than that – life, passion,” Exceptional Minds spokesperson Dee McVicker added. “At Exceptional Minds, we want the same thing for our young adults.”

EM currently has 34 full-time students, with an additional 50 studying part-time or virtually. Last summer 135 students participated in summer workshops. Students learn both animation and visual effects before choosing to specialize in one. Thus far, 35 students have graduated, 15 of whom are working in the in-house visual effects studio and four at the in-house animation studio. An additional seven people were placed at external studios. All of these students and graduates are on the autism spectrum.

EM classes teach not only the technical aspects, but as Dugan says, “also cover the behavioral side, preparing me in how to deal with that aspect of a career and how to act.”

Growing up in Manhattan Beach, California, Dugan was “not a huge fan” of the K-12 system’s special education program. After graduating, he went to a couple of colleges for a semester and tried a vocational school to learn Adobe programs while he was deciding what he wanted to do. Then, his father, a television producer, told him about EM, which Dugan said “definitely changed my life for the better.”

In the past year and a half, Dugan has worked on several movies and television series including: “Doctor Strange” (removing a boom mic in the shot); “War for the Planet of the Apes” (removed tracking markers); “The Mummy” (removed light spillage) and “Atypical” (replaced license plates on cars to change the location).

For those graduates who find external jobs, Merlán explained that EM not only provides training for the employee but also coaching for employers as well as support for both the employer and employee once the individual begins the job.

“Our whole goal is to get these guys work and let them accomplish their dreams just like everybody else,” Merlán said.

“We are looking to change hearts and minds,” Bennett added. “We need people in the film industry who are not all the same; diversity is a blessing.”

Learn more at RespectAbility.

Speaker giving a talk in conference hall.

6 Things We Learned at the Autism Society Conference

The Autism Society Conference is a safe place to be around people who genuinely want the best outcomes for autistic individuals at every stage of their lives. The people who organize it do a great job at being inclusive — all voices are welcome and everyone has an opportunity to be heard.

More autistic voices than ever were represented at this summer’s conference. Self-advocates took center stage to talk about their experiences and offer advice worth hearing and taking to heart.

Here are the six things that left us feeling hopeful and positive:

1. There’s a new definition of success.

Becca Lory is one you should follow whether you’re a self-advocate, parent or professional. She’s an emerging leader and powerful voice for the autism community. Becca energetically delivered the message that no one but you should define what it means to have a successful and happy life — not society, family, cultural norms or employer. Instead, she walked us through her process for achieving one’s best possible life.

2. Autism is an asset.

We have the power within ourselves to share our stories and guide people towards a better understanding of what it means to be autistic. In sharing his personal story, Jonathan Murphy said  he has been told by his employer and agent that his “autism is an asset.” It took him years to feel that way about himself. Now, he encourages every person on the spectrum to take pride in being different.

3. One size never fits all.

Conner Cummings, Lydia Wayman and Chloe Rothschild want you to know there isn’t one way to communicate, make friends and give a presentation! Through the internet, the three have become close friends and influential advocates. Though verbal, their speech can be unpredictable so they often type to communicate. They delivered an information-packed presentation in a style
that worked for each of them individually: Conner wrote a script and read it out loud; Chloe used a combination of speech, video and AAC devices; and Lydia pre-recorded her part since she couldn’t be there in person.

4. Autism is a competitive advantage.

Tom D’Eri is one of the co-founders of the Rising Tide Car Wash in Florida, a for-profit business based on the principle that “autism is a competitive advantage.” Tom and Michael Alessandri, Ph.D. walked the audience through the autism advantage roadmap for starting businesses that empower through gainful employment.

5. Make way for the wonder women on the spectrum.

The female side of autism was well represented at this year’s conference. The Autism Women’s Network’s anthology, “What Every Autistic Girl Wishes Her Parents Knew,” won the Dr. Temple Grandin Award for Outstanding Literary Work of the Year.

One of our favorite sessions was with tiara-wearing Brigid Rankowski, Jennifer O’Toole and Maura O’Toole who talked about dual diagnosis mother-daughter relationships. These three wonder women shared their personal experiences, including the tragedies of misdiagnosis and being misunderstood to the triumphs of standing up, speaking out and living spectrum-in-pink!

6. We do have common ground.

John Elder Robison gave the closing keynote address and it had a profound impact on me. I love the autism community — its diversity and untapped, talented individuals ready to break out and claim their place in the world. But the autism community is clearly divided: some talk of cures, genetics and environmental factors and others speak of neurodiversity, accommodations and acceptance. Each viewpoint comes from one’s own personal experiences with autism.

John says we must stop the infighting because it really doesn’t matter who’s right or wrong. What matters most is that we all share one thing in common:

We all want a better quality of life for those on the autism spectrum.

John called on each of us to treat each other with respect and focus on that common ground. We need to rise up as a unified force, like those in the civil rights and gay rights movements, to demand equal treatment and a better tomorrow for those with autism.

At the end of his presentation, John challenged every self-advocate in the audience to own their roles as emerging leaders who will lead the charge towards change. They stood in solidarity with fists of strength in the air! What a powerful way to conclude the Autism Society Conference. We
pledge to do whatever we can to help their voices be heard.

A version of this post originally appeared on Geek Club Books autism community blog.

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Thinkstock photo by Kasto80.

Lauren Hooper, red-haired woman wearing a black cap. Subway car in background.

We Need More Awareness of Autism in Women

Ask anyone about autism and they’ll most likely describe the stereotype: difficulty socializing, a “lack of empathy,” specific and focused interests. But, as with everything, it’s so much more complex than that, especially for girls and women with autism. While there are various statistics on the ratio of boys to girls, it’s clear there are many more girls and women with autism than was originally thought. And because the diagnosis of autism has always been based on the male presentation of autism, it can be really difficult for girls and women to get diagnoses and support. I can’t speak to anyone else’s experience, but I can speak to mine.

I was a shy kid. I was so shy, and so anxious that I couldn’t be left at after-school clubs or activities. I was petrified and cried until my mum would take me home. I was constantly told I was too sensitive, that I took things too personally, that I needed to grow a thicker skin. And that really upset me – but then I was being too sensitive, wasn’t I?

These issues continued through my childhood and into my teenage years. I was always anxious and strived for perfection in everything. I was a vigilant rule follower; I couldn’t, and still can’t, break a rule for anything. I was terrified of turning in homework late, convinced it was an unforgivable act. The one time I did forget a piece of homework (because I’d taken it out of my bag to check I’d packed it and then forgotten it in a panic about being late – another constant anxiety), I cried in a corridor and my hands shook when I told my teacher. It was fine, of course, but it didn’t help my anxiety. I was so scared of doing something wrong, of getting into trouble.

In addition to that, I never felt like I quite fit in anywhere. I felt like I was stuck behind glass, separated from everyone else and unable to break through it. Everything seemed so much easier for everyone else; everything they seemed to do effortlessly took all of my energy, leaving me exhausted. I couldn’t understand why I just couldn’t cope as well as everyone around me. For some unknown reason, I couldn’t function as well as everyone else and that made me feel like I was broken. Despite all of this, no one clocked that there was a problem, not a doctor, not my family, not me.

What had always just been a feeling of not coping started to take over other areas of my life. I’d always done well in school, despite missing more than 18 months when I struggled with an unidentified illness that caused debilitating fatigue. My lowest grade at GCSE was an A (although I was disappointed with not having achieved more A*s). I got to sixth form and everything changed. Suddenly every class, every test was a struggle. Learning and applying knowledge had always come easily to me, something I’d enjoyed, but all of a sudden, it had become so difficult and that was incredibly distressing. My anxiety got higher and higher and depression started to creep in. I was constantly exhausted and just getting through the day started to feel like an impossible task.

The turning point came when I failed an exam. I locked myself in a toilet stall and scratched at my arms over and over with a broken paper clip, desperate to feel anything other than this howling feeling of failure that came from somewhere deeper than I’d ever experienced. I don’t know how long I sat there and I don’t remember much of that day, but that was when my family and I started to realize something was really wrong.

A lot went into getting my diagnosis. I’ve lost count of all the doctors I’ve seen, the amount of times we left without any answers, the amount of books we read. I’ve been diagnosed with multiple mental health problems and tried a lot of different medications. I tried various therapies like CBT and EMDR. Nothing helped. But due to my mum’s never ending commitment, I ended up at the Brighton and Hove Neurobehavioural Service and after several hours answering questions, I walked out with a diagnosis of autism spectrum disorder. To start with, I was too exhausted by getting to that point to take it all in, but slowly, everything started to make sense. All these disconnected pieces of my life and my personality began to click into place.

I’ve always felt emotions strongly. If something goes well, I feel like I’m bulletproof. If something goes badly, I can end up in a meltdown: crying, shaking, screaming, and often self-harming. Either that, or I go into shutdown where I retreat to my room and lie in the dark, unable to think or talk properly. Sometimes a meltdown leads to a shutdown and it can last for days, or even weeks.

I’m extremely sensitive. To a lot of things. A change of plan, loud noises, bright lights, unfamiliar people and places, all of those things increase my anxiety, making it difficult for me to function, to make decisions, to interact with people or the environment around me. Processing that information takes a lot of energy and I’m easily exhausted and overloaded. Too much sensory information, too many demands placed on me, the closer I get to a meltdown. It’s a fragile existence, like walking on a tightrope.

I’ve never had trouble with empathy, with “stepping into another’s shoes.” Or more accurately, I’ve never found that difficult to do. My struggles tend to be with the other extreme: I’ve been told I’m too empathetic. I frequently experience other people’s emotions as if they’re mine and with such strength that I feel completely overwhelmed. It’s strange and upsetting to, for example, feel grief for someone I didn’t know. It can feel like I’m intruding even though all I ever want to do is help because I know how strong those emotions can be. It’s incredibly difficult for me to see someone upset and not be able to do anything.

It can also be very difficult to do something as simple as walk down the street. I feel overwhelmed by how big everyone’s lives are, how much makes up a person: memories, favorite colors, foods they hate, things they want to happen, things they don’t want to happen, phone numbers they’ve forgotten, songs stuck in their heads. I could go on forever. And when I’m surrounded by people, I feel all of that pressing in on me. It makes it hard to breathe.

Socializing is difficult. Again, processing all the information around me takes a lot of energy: a person’s words, body language, tone, how other people are reacting, everything going on in the background. It’s hard work. It feels like everyone else has a rulebook I never received and so I’ve had to learn how to be social. Where everyone else processes all this information automatically, I have to actively process it, which takes a lot of energy. So it’s not hard to imagine why I’m tired out very quickly by social situations. Of course many people don’t notice this and have no idea I’m autistic. Even the visible signs go unnoticed, like my difficulty with eye contact. Aside from the fact that I have no idea how long you’re supposed to hold eye contact for or which eye you’re supposed to look at, I also feel very vulnerable when someone is looking into my eyes, like they can tell what I’m thinking and feeling.

I do have my own specific interest: writing, in all forms, but my favorite is songwriting. I’ve read a bit about these focused interests and apparently the interests in the female presentation of autism tend to go under the radar because they can be similar to a neurotypical girl’s interests, like animals, TV shows, books, particular singers or music groups. It’s the intensity that’s different. I’ve never simply liked something; once I’m interested in something, nothing else matters.

When I’m writing, I lose all sense of time. I recently spent ten hours working on a particular piece and only stopped because I noticed my hands shaking. When I looked up, it was dark and I realized a whole day had passed and I hadn’t eaten. Writing, and writing songs, is everything to me. It’s the only thing I want to do, the only thing I want to do for the rest of my life. It’s hard though, because there’s a big part of me that feels like my life isn’t worth living if I’m not doing that one thing, if I’m not doing songwriting. The music industry is tough as hell so it’s terrifying to think like that. But that’s the truth.

Of course there are other symptoms, and this is just one presentation of autism. As the specialist that diagnosed me said, we are the experts of our own autism. But, in my experience, it’s really hard. And it’s made harder when there’s so little understanding around the way autism affects girls and women. Life post-diagnosis is difficult, but at least I know what I’m struggling with. I’m learning what helps and what doesn’t. Not knowing was awful. I felt like I was drowning, like I couldn’t even find the surface. And the years of asking for help and being turned away made it worse.

The lack of awareness and understanding about how autism affects girls and women has real consequences. The time it takes to get a diagnosis and the repeated invalidation causes problems of their own. The people supporting me now think that that was part of the reason I developed borderline personality disorder, a mental health problem that involves instability of mood, behavior and self image. And I will never forget one particular doctor’s opinion, that maybe that’s just how life was going to be for me. That remains one of the most upsetting experiences of my life and years later, I’m still struggling to believe I will ever be happy.

I am so lucky to have found the people who are supporting me now, and I believe without them, there’s a very real chance I wouldn’t be here now. But there are so many people without this support. There needs to be more information, more awareness, more understanding of autism in women. Too often it goes unidentified, and the effects of that can be worse than the struggles caused by autism itself.

If you struggle with self-harm and you need support right now, call the crisis hotline at 1-800-273-8255 or text “START” to 741-741. For a list of ways to cope with self-harm urges, click here.

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How My Autism Diagnosis Helped My World Make Sense

I’ve been having a difficult week. An emotional roller-coaster, if you will. On one hand, I am extremely happy I finally have answers. On the other hand, I’m an emotional wreck. I wish I would have known this as a child, so I would understand why I struggled with so many things that seem to come easy for everyone else. Why I would get made fun of all the time as a child and teenager. But now I understand why. I know why I am the way I am. I’m just going to come out and say it: I am Autistic. I have autism spectrum disorder.

Being diagnosed with autism has helped me understand myself better. It helped me understand that my brain just works differently. It helped me understand why I have trouble making friends and maintaining friendships. It helped me understand why I struggled with my hair. It helped me understand why I would “freak out” when my routine was disrupted. It helped me understand why I would hand-flap as a child. It’s why I would make unusual facial expressions. It’s why I would wander off all the time as a child.

But my autism is also the reason I love to research things. If I am interested in a subject, I love researching it inside and out, to the point that it’s a little weird. Haha. The same thing with birthdays. A person can tell me their birthday, and I remember it. Which can be a little creepy if they forgot I told them. It’s why I am very empathetic.

I found out when I was in college that I did get tested… when I was 3. I was diagnosed with static encephalopathy with global developmental delay. My parents were told I would never be able to take care of myself. That I would need to be put in an institution. My parents didn’t believe the doctors, and I never went back.

I proved the doctors wrong! I graduated high school with pretty decent grades. I got my bachelor’s degree and graduated magna cum laude. Every time I feel down about myself, I am reminded that I was told I would never get anywhere. That I could never do anything. That I would never amount to anything. That I could never take care of myself. Every day, I prove them wrong!

I know I can do anything I can set my mind to. Yes, I have limitations, and I can’t pretend they don’t exist. But since I received my autism diagnosis, I now have a therapy plan. I will be able to work with my limitations and make my place in the world.

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