Pretending to be normal: A photo story of Asperger’s Syndrome

The video and narrative below is the third in a special series on five individuals with Asperger’s Syndrome as told through the lens of photographer Leah Nash. The project was made possible in partnership with Street Roots and the Regional Arts & Culture Council in an effort to chronicle the diversity of this complex diagnosis of autism, illustrating the challenges and beauty of an unconventional life. Click here to view a transcript of the video.

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The fourth installment, “The man I am: A photo story of Asperger’s appears in the current edition of Street Roots. Look for the final piece in the up and coming Street Roots on Dec. 23.

Catching the snowflake: A photo story of Asperger’s (Part one). 

Accept normal: A photo story of Asperger’s (Part two)

In her own words: By Elesia Ashkenazy

If you exhaust yourself to hide your challenges, you are often penalized for not showing evidence of your struggles. And if you possess no ability to hide from your challenges, you are often pitied or shamed. Damned if you do and damned if you don’t.

When someone says to me, “You don’t seem deaf or autistic,” my response is, “You might want to expand your perception of individuals who are deaf and autistic.”

Disabled people are as unique and varied as the rest of our world’s population. And it is everyone’s duty to stop limiting us by enabling and promoting archaic typecasts. Disabled people vary in personality just as much as non-disabled people. In a nutshell, there is no one way for a disabled person to be. And what all people have in common, regardless of whether or not disability is present, is the need for support and understanding. Every person on this planet will experience challenges in one form or another.

It is human nature to approach situations and to make assumptions and judgments based only on our previous experiences. Our brains are hard wired to explore and interpret the world in this way. But it is our collective responsibility to understand and address the limitations we unconsciously bring into our interactions with others—and especially so with others who are different. When any given person leaves the confines of his or her home, they will often interact with people who are not at all what their minds might perceive.

Some disabilities are invisible and are not immediately apparent. In the case of autism, it is a spectrum. While some people on the autism spectrum have noticeable profound support needs, others have light support needs. And yet there are also autistic individuals who seem like they don’t need much but actually, behind the scenes (e.g. in their homes, at work, and elsewhere), they might be getting a lot of support — it just isn’t observed in a context where it shows. Note that it’s important where you catch an autistic person in life. One month or year, or whatever have you, a person on the spectrum who previously had light support needs might all of a sudden require more support to meet the demands of life. This can be brought on by changes such as relocating or starting a new job, etc. Once a “script” is in place to address that change and all the dust settles, then that person’s needs might return to accustomed levels.

One of the most important things to understand about autism is that autistic individuals have uneven skills. For example, a person on the spectrum might be a genius at math, yet have difficulty preparing a simple sandwich. In my case, my math skills are light years behind my skills as an artist. I have the same issue with language, as my spoken expression (especially if I am expected to address an unanticipated question) is not in the same league as my written expression. This is the case for a notable percentage of autistic individuals.

In addition to being autistic, I have a profound hearing loss. I was born with a mild progressive hearing loss and lost a significant amount of hearing after a severe case of chicken pox in my teens. Becoming deaf is not something I mourn. It has actually been a blessing in disguise as I am very sensitive to and often bothered by noise. Via my cochlear implant and hearing aid, I can choose when I do and do not want to hear. I am also fluent in American Sign Language (ASL). A person might say to me, “But you speak and hear just fine.” In quiet settings, I can comprehend a lot of spoken language in close proximity, but as soon as too much background noise interferes, I am no longer aided by my cochlear implant or hearing aid. I am deaf and always will be deaf regardless of any future advances in technology. And that is okay.

Perhaps you might be wondering why I have used identity-first language more than person-first language (e.g. autistic verses person with autism). The idea behind person-first language is to support recognition that someone is a person first and that the disability is secondary. I support this approach for those who have made a personal choice to use it. In my case, I feel that deafness and autism are too much a part of me to warrant secondary status. Of course I am a human being first. But there is no part of me that is lost and needs to be mourned or recovered. I am who I am: a deaf autistic individual who is passionate about art, disability rights, and self-advocacy. And I will let nothing stop me as I explore, learn, and grow. When disabled individuals are truly included, the concept of disability and its supposed limits change.

Lots of mothers have warned their children not to judge books by their covers. I know, that same old tired cliché. But it’s true. Not all disabled people are in a constant state of grief and pity. Matter of fact, fear mongering and shame are the very things that serve to hold disabled people back from what we truly need: acceptance, accommodation, accessibility, and integration in the here and now. We are just as shaped by community, education, opportunity, parenting style, and overall approach to our support needs as is the case with any other member of society.

Elesia Ashkenazy’s lifelong aspiration is to become a traditionally published author. She recently completed a Young Adult paranormal manuscript, Truth Seeker, which is under review by an agent. In addition to writing, Elesia enjoys spending time with her family, classical ballet, cooking, disability rights, nature, and reading.

Visit other stories in this series.

About this series:

Autism is the fastest growing disability in the U.S. with an economic impact of more than $90 billion. The Center for Disease Control reports that now one in 110 children are being classified with autism spectrum disorders, compared to one in 10,000 in the 1970s, and according to the Autism Society of Oregon, our state has one of the highest rates of autistic diagnosis in the country.

First documented in 1944, many with Asperger´s Syndrome can be quite gifted, but are often socially awkward and unable to make friends. Frequently misunderstood, those affected live in a world of missed social cues and difficult exchanges. Called “little professors” by their namesake, Hans Asperger, who noted their talent of acquiring expertise in specific topics. Those with the syndrome usually want to fit in and have interactions; they simply don’t know how.

The objective of this series is to explore the diversity and complexity that exists across this spectrum, for it is often said that people with autism are like snowflakes — no two alike. This work is especially relevant given controversial revisions proposing to do away with the Asperger’s diagnosis altogether in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the diagnostic encyclopedia of American psychiatry.

As history changes, a record must be kept, these stories must be told. Through the support of Street Roots and the Regional Arts & Culture Council, the goal of this series is to encourage viewers to question their perceptions of both Asperger´s and autism and challenge themselves to gain a deeper understanding of the people behind the label.

Please join us as we give a voice to those that often have none.

Leah Nash is a documentary photographer based in Portland. More of her work can be found at www.LeahNash.com.

The project was made possible in partnership with the Regional Arts & Culture Council in an effort to chronicle the diversity of this complex diagnosis of autism, illustrating the challenges and beauty of an unconventional life.

14 responses to “Pretending to be normal: A photo story of Asperger’s Syndrome

  1. Well Done! YOUR FAMILY is so Beautiful.
    Thanks for allowing us to get to know you.

  2. Thank you to all who have stumbled upon this project. Your comments are appreciated!

  3. What an excellent article. It is very valuable, articulate, and loving. Thank you for helping me to know what is needed.

  4. Are there any plans to post a captioned version of the video or a transcript of the narration (which, from what I can gather, is not the same as the accompanying text)? Given that autistic people with auditory processing difficulties and deaf people will be interested in this video, it seems like an unfortunate omission.

  5. Thank you for uttering the magic words, “I don’t want to be fixed, I want to be accommodated”. If only that message can be broadcasted worldwide, the world would become a more tolerant place to live in.

  6. Magnificent, illuminating and beautiful. You are a great mom and person. Would you be willing to be a mentor for our candidates with Autism on how to live a great life?

    Not only do we understand and respect you but we love you!

    Best wishes and continued success!

  7. Pingback: The man I am: A photo story of Asperger’s Syndrome | For those who can’t afford free speech

  8. A very nicely presented set of pictures and commentary there, which certainly deserves all the positive comments above. Congrats and well done!

    To me as a 70yr old only recently diagnosed Aspie myself, that “Damned if you do and damned if you don’t.” does provoke some thought, because I detect something of an anomaly where on the one hand you say you want to be understood and accepted by others, but on the other hand you’re driven to hiding your disabilities.

    I face this dilemma too; should I persevere at pretending to be an NT, or should I blurt out my differences to gain understanding before they start to irk other people?

  9. So true damned no matter how you respond. And I too am autistic first, when I speak it is NOT “just the autism speaking”. acceptance is hard to come by, as the temporarily able bodied, if they truly accepted us, might have to admit that it is *not* their way or the highway….but that there are many paths and all are OK.

  10. The video and narrative below is the third in a special series on five individuals with Asperger’s Syndrome as told through the lens of photographer Leah Nash.

    Would like to access all 5 segments of the series. Where will I find the other four?

    Many thanks

  11. very interesting i wish there were more things in my community to support autism my son who is gonna be 17 next year i am just constantly wondering what does kind of future does he have to look forward to…

  12. Jane, I think it depends on who you tell and how you tell them. When I was first diagnosed a couple of years ago, I was afraid to tell anybody in case they immediately categorised me as a nutcase, and that would basically be undoable. But after a while, I started to try carefully telling a selected few of my NT acquaintances as an experiment to see how they reacted. I have to say I was very pleasantly surprised by their acceptance and understanding. I’m now slowly (and still carefully) widening the circle of acquaintances that I’ve told, and so far, happy to say I haven’t experienced any negative reactions. In fact just the opposite, because with these chosen confidantes, I don’t feel I have to pretend any more.

    But I wouldn’t advocate going out and telling everyone in the street. I reckon It’s only OK if done carefully and selectively.

  13. Pingback: Special Report: Photo stories of Asperger’s Syndrome | For those who can’t afford free speech

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