Tuesday, November 3, 2015

" How to Dance in Ohio" HBO takes a glimpse into living with Autism.

So recently I caught wind of an HBO special/documentary that was due to air on Autism. Anytime I hear of a documentary that deals with the raw realities of human behavior in any form, my attention is immediately captivated.

I attribute most of this to the fact that my entire life has been spent studying people in a die hard attempt at understanding them. All the while, without realizing it was never due to a lack of effort on my part, but rather a short circuit in my wiring from birth.

With that said, being able to witness how Autism/Aspergers looks in real life from an entertainment perspective, was both heartbreaking and endearing.

The documentary is shot in Columbus, Ohio, and follows three young women with varying degrees of Autism as they prepare for a spring formal set to be thrown by the moderator of a support group they all belong to.

I'm not going to go into a synopsis or play by play. I'll tell you that if you are interested in getting a glimpse of what the realities of being on the Autism Spectrum look like, you should watch it.

The reason for my writing this is to shed light on a few points that were touched on during the documentary that struck me as relevant and of importance as a female diagnosed on the spectrum.

First and foremost, the documentary discussed the difference in challenges as an adult and as a child on the spectrum. I think that many people who lack a solid understanding of the varying degrees of the Autism Spectrum have a tendency to dismiss the diagnosis in adults, while placing more emphasis on the treatment in children. As an individual who was diagnosed well into adulthood, I can attest to the fact that more often than not, certain behaviors can and are overlooked in children and later on as adults become less socially acceptable and begin to cause more problems.

A good example of this is shown when one of the young ladies is reprimanded by her boss at work for being rude to her coworkers. The young lady sits in the chair across from her boss in tears, completely unaware of her behavior and exhibits true remorse over it. In her mind she was expressing her feelings and didn't understand that in the process, she was hurting someone else's.

I think that females especially have a tough time with this. It has been studied that females on the spectrum are better at adapting to social norms in childhood and early adulthood which ends up masking the symptoms and delaying diagnosis. Years of bottling up feelings of confusion, misunderstanding and isolation in turn leads to depression and anxiety in adulthood, which are often comorbitities of those diagnosed on the spectrum. Many times, individuals will be diagnosed with anxiety and depression early on, with professionals never really getting to heart of the matter, which is the Autism. This was true for me personally. I was treated with antidepressants since I was teen, medicated with dozens of different medications until the day I told my psychiatrist I was strong enough to see myself through these difficulties without the aid of prescription drugs. Only then was I able to identify where the real issue had been all along.

When I was growing up I was called shy, slow to warm up, defiant, sneaky. At summer camp one year I received an award for making the best facial expressions, which, looking back, were most likely rooted in confusion. What I am trying to say here is that in females, certain characteristics are more acceptable and tend to go unnoticed. That is, until adulthood hits.

What was once shy and slow to warm up turns into rude, antisocial and standoffish. Character traits deemed highly unacceptable in adulthood. Things necessary to coexist in the adult world in the the workplace, relationships, and parenting that haven't been cultivated come to the surface. I think its important to note that just because a person is grown, does not make their diagnosis any less difficult. I agree with the psychologist in the documentary when he states that if anything, the diagnosis of Spectrum disorders presents more challenges and becomes more difficult with age.

Another aspect of the documentary I felt was relevant was the emphasis the psychologist placed on empowering these individuals. Being on the spectrum I have spent an overwhelming amount of time second guessing my behavior in social settings and later punishing myself for screwing it up. I think when you spend most of your time trying to make sense of circles when you only see in squares, you get used to feeling defeat. I have, on more occasions than I can count, tried to talk myself out of a challenging situation because I felt so afraid I would fail. Never having a solid grasp on what was expected of me as a human and being able to carry that out with success drove me into a hole.

I have said in prior posts that I feel unsure of whether receiving a diagnosis as a child would have changed anything about my life now. I can honestly say I am conflicted. While I may have bypassed a great deal of pain and hurt, I believe that I am here today despite my difficulties and I have overcome so much, and I am proud of who I have become.

I do believe that those who are diagnosed as children and grow into adulthood learning to navigate through life according to their specific needs are absolutely at an advantage. In the documentary there was a scene that struck me where one of the young ladies is sitting at the kitchen table with both her parents and what appeared to be a caseworker. They sat and encouraged her to advocate for herself in regards to her feelings and her needs, while equally supporting her and allowing her to feel safe and protected offering their advice in whatever decision she made. She mentioned not feeling secure in the idea of living on her own and that when the time came, she preferred a roommate. Listening to the way she was expressing herself and how she had that support system to encourage her, to me, was bittersweet. I cant lie, I found myself wishing I had the same when I was growing up.

One of my biggest hurdles is my struggle to feel safe. I think that if I had the kind of support I needed emotionally where I felt encouraged to express my needs and feel understood that would have provided an enormous help to me. Lets face it, a person cannot feel safe unless their needs are being met consistently and they feel understood. Communication is an essential component to the human condition.

The last point I want to touch on briefly is something the psychologist stated about the way he encouraged interaction between the teens despite the inherent difficulty they would encounter. He mentioned how in reality , even to neurotypicals , the world of socialization and relationships can be frightening. And how he felt almost guilty inviting them to take part , as if it were his job to protect them , but also encourage them to grow.
Navigating through the world of social norms can feel at times, impossible to any individual, not just those on the spectrum. It comes with pain, and hurt and sadness, but also tons of happiness. The reality is, in my opinion, if individuals on the spectrum aren't exposed to situations to promote growth, understanding and acceptance, they face stagnation. I'm not saying this is true in all cases. There are varying degrees and everyone has their abilities. I'm saying even if we are pushed just a little bit outside our realm of existence, who is to say that no good can come from it. I am a firm believer in self expression, honesty, thinking outside the box and challenging myself as a human in order to experience growth.

I'll always have Aspergers, but my difficulties day to day don't have to be riddled with shame and confusion. I think if more people were exposed to what its really like to live on the spectrum, those of us who live it as a reality may feel more inclined to share these parts of ourselves that have for decades been largely misunderstood. Kudos to HBO for shedding a little light on the world myself and fellow Aspies live in.


  1. Thanks for writing this, Emily. I wish you had the supports you needed early on, too, and didn't have to deal with the frustration of wrong diagnoses for so long. Will share this on TPGA FB in the morning.

  2. Reading your story made me cry. To think that what you went through has happened to me and to so many girls out there! Suidecidal thoughts, because of not fitting in anywhere, is so normal for girls with aspies.

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