I'm Not Asking for Autism Awareness. I'm Asking for Acceptance.

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I have written my entire blog around the theme of being “Anonymous” because many autistic people feel invisible, unseen and anonymous in the world. Autism is an “invisible disability,” meaning you can’t tell someone is autistic unless you ask them (or know autism very well and are paying close attention).

People have awareness of autism – they know it exists, they know autism is a popular conversation, and its prevalence seems to be increasing. In 2014 it was estimated that 1 in 68 children (1 in 42 boys and 1 in 189 girls) are diagnosed with autism spectrum disorder (ASD).

People know autistic children can have trouble in school and may be prone to meltdowns, but they don’t understand what causes a meltdown. Being aware that autism exists and having acceptance of autistic people are two very different things.

October 10th was World Mental Health Awareness Day – but today I am not asking for more awareness. What I am asking for is understanding, true understanding, and acceptance.

Accept me.

When I am staring at you blank faced because I did not understand what you just said, give me some time to process your words. Sometimes my brain works on a delay. It doesn’t mean I am not listening.

Don’t automatically repeat yourself. I may ask you for clarification. I might have heard you wrong. I’m doing my best. Don’t get frustrated if I ask you to repeat something.

I’m not Rain Man.

I shouldn’t even have to say it – but most autistic people are nothing like Rain Man. Some of us have unique skills and abilities, and some of us do not. No two autistic people are the same, and I can’t go into this without ranting because I get the “You’re nothing like Rain Man!” comment far too often.

Understand me.

Sometimes I have a hard time verbally expressing myself. It is hard for me to come up with on-the-spot conversations or talk about my feelings. Words do not come from my mouth easily – if I am talking to you, my brain is working hard and I am doing my best.

If I am not talking, don’t take it personally. Sometimes, if I am worn down and if I am tired, the words get stuck in my mind as if traveling through glue. By the time the words are ready, they are no longer relevant.

Don’t underestimate me. 

I do have some unique challenges, abilities, and disabilities. My brain works differently than most of the world, but I am not “stupid.” Sometimes people talk down to me or talk to me like I am unintelligent. Technically, despite problems with my working memory, I am an adult, so being talked to like a child is extremely offensive.

There will be things I cannot do from time to time and tasks I may find difficult, but I always try my best and do my hardest. On occasion I may ask for more time to complete or learn something new, but in general I tend to be unstoppable once I set my mind to something.

Stop asking me to blend in (and don’t compliment my ability to hide my autism).

I can blend in if I have to, but passing is a lot of work and takes up tons of mental energy. Let’s say I have 12 spoons to get me though my entire day. I only have so many spoons available to me, and passing costs me about one spoon per hour. I need to save my spoons and  “passing” is too costly. (Please read “The Spoon Theory” written by Christine Miserandino if you have no idea what I am talking about.)

This world was not made for me. Our school systems teach us to blend in, sit still, and follow the crowd. This push to conform has haunted me all my life, and eventually, when trying to blend in finally failed, I ended up with an autism diagnosis.

Let me be me. It’s been hard for me to learn to accept myself. Asking me to blend in, to fake it and be “less autistic” makes me feel as if the “real me” is not good enough. I won’t do it anymore – nobody should have to feel ashamed of they way they were born.

My Mental Health Awareness Day wish – more than anything I am putting out a deep wish for true acceptance. Being aware is not enough. It is important that we accept people as they are.

Editor’s note: Because World Mental Health Awareness Week is also referred to as World Mental Illness Awareness Week, The Mighty and the author of this post just wanted to clarify: autism is not an illness, nor does it require a “cure.” It is a neurological difference, which is why we raise acceptance for it on World Mental Health Day.  

Image via Thinkstock.

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3 Questions for Caregivers of People on the Autism Spectrum

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Dear parents and caregivers of people on the autism spectrum,

I’ve written my share of articles and stories, and even a book as someone on the spectrum myself. Some articles were explaining why I have issues with certain things. Others would describe how I’ve learned to cope and what has helped me to grow. And these stories are important to me. But a good friend of mine helped me realize the other day that all of these writings are one-sided. They are only about what I want to say. And in order to make a difference, there needs to be a conversation — and conversations need to have an exchange of ideas, not just my own.

So I want to hear from you. I want to ask questions. I may not always be able to understand the answers, but I’d like to at least hear what you have to say. Some (but not all) of my questions include:

1. Do you feel like you are being heard? Or do you feel like no one is listening?

2. What can I do that would be most helpful to you?

3. What else do you want to say?

I want to open the door for a conversation. I cannot speak for anyone else. However, I personally want you to feel as though you are allowed to share your thoughts and opinions. Because I know how important that is for me.

I look forward to hearing from you.

Sincerely,

Erin Clemens, an adult on the autism spectrum

Image via Peter Brown.

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Kristina Bant Jenkins Photographs People With Autism for 'THIS is Autism' Series

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As the mother of a child on the autism spectrum, Kristina Bant Jenkins wants people to know her son for who he is and not just what condition he has.

“Early on in the autism journey, I would talk about my son and autism, and people immediately put that label on him, then identifying him with anything attributed to that label,” she said. Others’ notions of her son left Bant Jenkins feeling boxed in, so she decided to use her skills as a photographer to help those outside of the autism community understand that autistic people are more than just their diagnosis.

Young boy smiling

“I want people to know our children for who they are as individuals first, people, children with souls and hearts,” Bant Jenkins told The Mighty. “I didn’t want the first impression a stranger had of autism to be a really negative one, that of expectation of an outburst or aggression. I deeply wanted people to know my child. Who he is, what he loves, what makes him smile and his eyes twinkle with awe. I felt every child with autism deserved that.”

Little boy grinning

As part of her “THIS is Autism” photo series, Bant Jenkins has photographed 45 people on the spectrum, most of whom are children. While she only photographs each person for 30 minutes, she shoots continuously so she doesn’t miss a single moment.

Young boy outside looking up

“’This is autism!’ I found myself saying every time I showed one of those photos,” Bant Jenkins explained. “THIS is Autism shines a light on what love is in their life. When I look through their eyes, to see their world, I see what they love, then I see their face light up and their eyes shine and their wonderful little personalities come through my camera lens.”

Young girl wearing a fairy costume outside with two other children

Bant Jenkins photos have been featured in a number of publications, and, most recently, at the Love and Autism conference in San Diego. The series isn’t over yet. “Right now, I don’t turn anyone away. I am somewhat limited to Southern California because that’s where I work, but I am open to expanding the reach,” Bant Jenkins said. By the close of the project, she hopes to photograph at least 100 subjects. The last photo in the series will be a photo of Anita and Abraham, an autistic couple Bant Jenkins got to photograph on their wedding day.

Anita and Abraham

“People with autism are individuals just like everyone else,” she said. “We have more commonalities than differences. What we have in common is usually really easy to find – music, our pets, our moms or dads, Scooby-Doo or the Minions, skateboarding, surfing, playing basketball – and a deep need to be understood, accepted and to have friends.”

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How a Question That Led to My Autism Diagnosis Could Help the Country

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Growing up there were two great influences on my life. These influences taught me how to live a life of faith, love and sacrifice. 

My father was a military man. He spent more than 20 years serving our country. As a child, I was privileged to travel the world. I am a better man for it. My father’s time serving the nation deeply influenced my love for multiculturalism. Living with and loving other races, ethnicities and cultures was a part of my early childhood development.

My father wasn’t just a military man; he was also a minister. He was equally as serious about being a pastor as he was a soldier. He was committed to doing both with excellence, and, in many ways, his ability to give his life to something greater than himself influenced the way I serve others today.

Although I had a fairly good childhood, I also had a particularly difficult childhood. I struggled to understand people and to make sense of the world around me. But when you move every few years and live in different countries, those challenges are to be expected. It always seemed as if the entire world was in on an inside joke that I just didn’t understand. Despite almost being kicked out of high school my freshman year, I survived. I made it through college. I got married. I became a father. I earned a doctorate degree. Despite all of these accomplishments, I still had an internal struggle I had yet to address.

In 2013, I finally hit the proverbial wall. My self-taught coping strategies stopped working. I came face to face with the reality that the issues I had worked so hard to hide weren’t as hidden as I had once thought. Success didn’t strip me of my struggle. In fact, to some degree, my success seemed to place me at the center of finally having to deal with my internal struggle.

When you grow up the way I did, you learn quickly how to defend yourself. As a child who was often the subject of bullying, I learned to defend myself. By the time I was 36, I had developed the perfect response to every question about me. When people observed what seemed to be a lack of social skills and social awareness, I did what we all do. I denied it. I defended it. I dismissed it.

After decades of this battle and the burden it had become on my mental, emotional and spiritual health, I took a deep breath, looked myself in the mirror and uttered four simple words: “Everyone can’t be wrong.” Realizing there had to be a reason for these observations, I finally mustered up the courage to take a hard look at what I was experiencing and what people were observing. The result was that I was professionally diagnosed at age 36 with Asperger’s syndrome, an autism spectrum disorder (ASD).

I am in no way making light of autism spectrum disorder. As autism advocate myself, I take very seriously the need to provide resources and support to those in the autism community. It is a cause to which I have given my life since being diagnosed in 2014.

With that being said, I believe that out of all the factors that may have led to my years of living with ASD undiagnosed, I think the biggest factor is my developmental history is a mystery.

We didn’t know what to look for then, so as the years went on the struggles I had were attributed mainly to character flaws or behavioral issues. My diagnosis eventually helped to bring some closure to a period in my life that was very difficult, but it also helped to promote a series of conversations about both my past development and the future direction of my life. As a result, I understand the world around me in a much different way than before.

In a time of social, civil and racial unrest in our country, I believe we have lived with the same silent struggle I had experienced until just two years ago. America has excelled despite her difficulties. She is indeed a great nation. She has grown up and had a lot of success, but she has still struggled and many of her self-taught coping strategies are no longer working.

Perhaps our great nation also has a mysterious developmental history, and the result is a country that struggles to find herself and appreciate both the beauty and the burden of living up to its fullest potential by embracing its ideals and core values that all people are created equal.

As I child, I learned to give my life to something greater than myself. As an adult, I learned it meant learning to listen to what everyone else seems to know about me except me. Eventually, it meant asking myself a tough question: “What do people experience when they experience me?” It’s the question that led me to the conclusion that everyone can’t be wrong.

Yes, I am sure there were people who didn’t mean me well. I am not totally naïve, but I also believe there were enough incidents and enough verifiable evidence to suggest that I take some of their objective observations seriously.

Our country is great, but she has been left to figure herself out for so long that she learned to deny, defend and, in many cases, dismiss the objective observations of those around her. When people of color, the LBGT community, the Native American community, the disability community and immigrants are all making objective observations about what they experience in our country, it has been my personal experience that everyone can’t be wrong.

While I don’t pretend to have all the answers, I do know the value of asking the right questions. My hope and prayer is that our nation, as great as she is, finds the courage to finally ask herself the question that I had to ask myself: “What do people experience when they experience me?”    

In the end, asking that question has allowed me to become a much better man, and I believe if you have the courage to do the same, you can become a better country, too.

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Lead photo source: Thinkstock Images

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The Truth About Parenting a Child on the Autism Spectrum

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What does the real life of the parent of a child with autism look like? As with any parent, appreciating the good parts is essential, both for the parent and for the child.

I came away from a workshop a while back about raising a child with a disability, and the speaker, Kathie Snow, said something really important. She said that too often, we identify our children by their disabilities, naming them first before their names. Even worse, we tend not to spend a whole lot of time on their positive attributes, despite the fact that there are so many. When you talk about your child, say his or her name, talk about three things you appreciate about him/her, and discuss the child’s likes and dislikes. Allow other people to see, through you, the good in your child.

In John 8:32, the Bible says “the truth will set you free,” and as often as this quote is used, it seems infrequent that we pursue the actual truth.

What are the truths I know about my son?

One of the most challenging things about parenting a child with autism is the uncertainty you can experience. And sometimes, no matter how much we reinforce positive behavior and attempt to understand other behaviors, they crop up quickly and without much warning. But I know even though we go through many rough patches, no matter how badly I sometimes handle his meltdowns, he always comes back to me with love in his heart. If I need a confidence booster, he’s there to tell me how great a mom I am. In fact, according to him, I’m “the best mom ever,” but I’m also pretty and sweet and I make him proud. When it comes to his brother, Squeaker has no competition for the most protective brother. He will defend him and protect him always. If you need a cheerleader, he’s there. If you need a hug or a kiss, he’s ready to give one. And he has a mind like a steel trap. Once the information gets received, it never leaves his mind. My son has an inquisitive nature, a good heart and a delightful sense of humor — not to mention a large amount of gratitude for the small things in life.

It’s unfortunate that so many people overlook the most wonderful things about my son. There is so much more to him than the challenges he faces. There are things he does to cope with his need for structure, attention, routine and comfort, but they do not encompass all of who he is.

Parenting requires you not only to have the courage for advocacy and the strength for getting through hard times, but to have a heart large enough to hold all the love. So tell me your truth. Shout it loud and proud. Tell the world about the wonderful world of parenting and your child with autism.

Follow this journey on Embracing the Spectrum.

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How I Succeed in a High-Stress Career as an Autistic Person

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The shrill sound of bone saws. Bright lights. The harsh smell of bone cement. Many people talking at once. Different tones of beeping from the heart monitor, oxygen sensor, and ventilator. Heavy metal music blasting from a speaker right near me. Sounds of hammering from big orthopedic equipment.  Oh, yes, I forgot to mention, I have a patient’s life in my hands.

It’s not for the faint of heart. It’s almost certainly not the environment you’d expect to find an autistic person working in. Yet each weekday morning I’m up at 3:00 A.M. to get ready for work in the operating room as a Certified Registered Nurse Anesthetist, doing anesthesia for major surgery. It isn’t an easy job for anyone, but toss in being autistic and the job gets even tougher.

I wasn’t even diagnosed with autism until age 50. I went my entire life not knowing why I was
different and never fit in. It wasn’t until one evening while at work when a co-worker told me about her son getting diagnosed, and I looked at her papers that I realized I’m on the spectrum. I got formally diagnosed three weeks later.

Embarking on my career wasn’t easy, because there are so many sensory issues to contend with in the operating room, and I had to learn to cope with it all. Back when I was in my training at Columbia University and the big New York City hospitals, I didn’t know why all the extreme levels of stimuli never seemed to bother anyone else in the operating room. Now I understand.

I have to interact with endless people each day in preparation for each case — the patient, their family, the surgeons, the OR staff, the anesthesiologist, and other staff. Back in the beginning, it was so painfully difficult for me to do this. Yet because I’ve done it over and over, it got easier all the time. I have now been in this career for 28 years, done over 50,000 cases, and interacted with over 1 million people.

Each patient presents with a different medical history, type of surgery, and medications they are taking. All that affects the type and way each anesthetic is administered. I’ve learned to be flexible and spontaneous to adapt to the daily changes that present themselves. Each weekday I go to my job and spend 10 or more hours working with an ocean of neurotypicals. I must keep up with them or else I’d sink.

Yes, I’m mentally drained by the end of each day. I listen to my co-workers in the locker room at the end of each day talking about how exhausted they are. I feel as though my exhaustion goes far beyond theirs, because they are not autistic. The massive sensory overload I endure does take a toll on me. But somehow I have built up a tolerance, to be able to withstand it and function at my job. I developed this ability over time, from doing over and over again. My success demonstrates that despite being autistic, I was able to gradually build that tolerance.

I know many people on the autism spectrum who have a job, which is great. But it’s rare to find someone working a high-stress, fast-paced job like I am, with lots of social interaction. I aspire to be an inspiration to others on the spectrum, and their families, and to demonstrate that you can achieve great things if you push yourself beyond your comfort zone and follow your dreams.

I often feel like a magician, “Master of the Impossible,” doing a job so demanding, so fast-paced, so high-stress, and with constant change. Over the years, I had to step outside my comfort zone. Of course it was scary, but I did it. And I believe you can too!

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