People on the autism spectrum should share their stories

I would like to speak out on an issue that has negatively impacted me my entire life. It is the problem of a day-to-day struggle of self and mind that makes it an uphill battle each and every day to function in normal society. The problem I speak of is the that of neurodivergence; more specifically, autism and Asperger’s. Before I proceed, I will first give some context. For those of you who do not know, this month is Autism Awareness Month which is sponsored by the charity Autism Speaks. The purpose of this month is to raise both acceptance and awareness of those on the autism spectrum who often suffer from societal alienation due to misunderstandings, misdiagnoses and the unwillingness of those not on the spectrum to accept difference. I suffer from the developmental disorder known as Asperger’s syndrome, which is on the autism spectrum. I strongly believe that the only way to gain true acceptance is for people on the spectrum to share their stories so people can truly understand the struggle we face. That is why I have decided to share my story today.

I am not fond of sharing the fact that I have Asperger’s syndrome, and tend to only do it in therapeutic environments or in dire situations. However, I realized recently that Asperger’s is not a crutch, and it’s nothing to be ashamed of. It is a difference, and it is something that has caused me to struggle and persevere and has made me a much better person. I would like to share my struggle and make an appeal for neurodivergent people living in neurotypical environments. Despite it’s ridiculous sounding name, Asperger’s syndrome can be very severe. It is characterized by a lack of empathy and an inability to pick up on social cues. Other symptoms include obsessiveness on certain topics or hobbies, an inability to accept change and an inability to make proper eye contact. While these sound like minor differences from what is considered a neurotypical personality, they are actually quite significant.

Having one or two Asperger’s behaviors might be harmless and may simply be considered quirky personality traits, but altogether they create a heavy burden and a significant mental chasm between those with Asperger’s and neurotypicals. Imagine that everybody’s mind is a bucket, and the more weight in this bucket, the harder it is for them to communicate with others. Each Asperger’s behavior is a rock. When there is one rock in the bucket, the weight is manageable, albeit the bucket is a little off balance. However, somebody with Asperger’s does not have just one rock, but more likely five or six which heavily restricts their ability to communicate. I would also like to make the distinction between Aspergers and autism. While Aspergers is on the autism spectrum, and Aspergers and High Functioning autism can often be very similar, Aspergers is not simply another form of autism. Rather, the two share similar symptoms, but differ in that those with autism often have special difficulties with communication while Asperger’s has the unique quality of preoccupation or obsession with certain subjects.

For my entire childhood, I tried desperately to function like a normal kid. I struggled to make friends all through elementary, middle and high school. I went through scores of therapists, spent two months in a therapeutic wilderness program and even had a week stay in a mental hospital while my classmates had normal childhoods, going on playdates, hanging out, going on dates and to parties. This was all in the name of “treatment.” For nearly half my life I have been treated to try and remedy, or at least mask, my differences, the traits that make me unique, because they make it difficult for me to live amongst the majority of mankind. I have been, perhaps unintentionally, conditioned to believe that I am not only lesser than most people, but that I am fundamentally flawed. It is not just the treatment by others that gave me this impression, it’s my life experience. I have quarreled with many and bonded with few. I’ve had fallouts and animosities and emotional ordeals that have made me feel unwanted and unnecessary. I have learned much and changed a lot and gone through hardships that many people will never have to face. Every morning I wake up and ask myself, “What will I do wrong today?” Sometimes I question my own humanity because my mind works so much differently from everybody else’s, and that shows very clearly in my interactions with people. The decision to come to a mainstream college was one that I had to make very carefully, and yet it felt to me like a challenge from the world. It felt like the universe saying, “Can you really survive in the real world alone?” Often times it feels like the answer is no.

This is not to say that I am the least fortunate person in the world, far from it. I have been blessed with health, financial safety and a loving family. Yet, my struggle is one that is frustratingly unique. So few people in the world share the burden that I face, and so few can truly help me improve. I often hope that someone will invent a magical cure, but it is unlikely. Aspergers is not seen as something severe enough to invest serious money in. Moreover, it is also something that would be very difficult to “cure” in the traditional sense because, again, it is not a disease, just a disorder.

So is the situation improving? The study of Asperger’s has made great strides in recent decades. If you’ve read the books of John Elder Robison, a man with Aspergers who is now in his late 50s, he will tell you that during his childhood he suffered from an undiagnosed case of Asperger’s because the science simply was not there in the ’60s and ’70s. His lack of a proper diagnosis resulted in him being labeled a miscreant and a deviant, and caused him to believe he was those things and to behave as such. Eventually he was able to pull himself up and make a life for himself, but he still attributes many of his difficulties to the misunderstandings that people had back then about those on the autism spectrum.

Even in 2010 when I was diagnosed the science was somewhat insufficient, and though it has been gradually improving over time, it is still often difficult to make an early Asperger’s diagnosis. This speaks to one of the key issues with Asperger’s: that those who suffer from the syndrome may face a great deal of pressure to act like neurotypical children and, until a diagnosis is made, may accumulate additional mental health issues as a result. Some argue that the subtlety of the behaviors associated with Asperger’s is an asset, allowing them to blend into environments and situations with minimal persecution. I would argue that this is also a detriment because it puts us between two worlds, that of the neurotypical and that of the neurodivergent, and causes us to suffer crises of identity. It is also relevant to add here that Asperger’s syndrome is probably the greatest force stopping me from personally achieving my goals. I aspire to be a public servant and an elected official. We as young people are always told to follow our dreams. So I have. I have attempted time and time again to become an elected official in many places; middle school (I tied once with a really good speech), high school (I only won once: I was unopposed) and now college (I have lost every college election I have participated in). Charisma is such an important factor in politics, and not just school elections. While people argue that school elections are just “popularity contests,” they ignore the fact that local, state and national elections are just larger popularity contests with a couple more random factors mixed in. I am the antithesis of ideal to achieve my goals, and winning elections takes a lot more effort, perseverance and failure for me than it does for most because of Aspergers.

So when you encounter someone at Vassar who can not seem to empathize with how you are feeling or says something, not offensive, but a bit off, do not label your fellow Brewer an asshole. When you meet someone in your dorm who cannot make eye contact or fidgets, do not call your neighbor crazy or nuts. When you come across an individual in class who has trouble speaking or has slow reaction speed, absolutely do not call them retarded. These people are not lesser, they are different. These people are strong individuals who have spent their entire lives overcoming difficult obstacles. They are brave souls who have not let fear of ostracization hinder their desire to live happy and fulfilling lives. They are neurodivergent people living in a world of neurotypicals, and that’s a damn hard thing to be.

 

3 Comments

  1. Drew, you are obviously an incredibly brave and resilient soul. Thank you for sharing the challenges you face in your journey. By putting a name and a face with Asperger’s, you help others better understand the obstacles that those with Asperger’s must overcome. Again, thank you.

  2. This post was well thought out, I too suffer from the various hardships plagued by Aspergers. As a high functioning individual I find it rather difficult to deal with relationships whether they be homosocial, heterosocial, or heterosexual. I come off as a complete neurotypical in very formal situations. Most people can’t tell I have autism until I either tell them or attempt to hide it. I over the years have attempted to use it as an excuse. I tell most people within an hour of conversation during the times that they truly last long. I find myself blessed by hearing people say they couldn’t tell. At first I thought that it would excuse anything unusual I do or say at times, but I have quickly learned it doesn’t. I have attempted to take advantage of excuses revolving around my various achievements considered neurotypical, Such as my tennage occupation working at and managing public pools during the summer time, getting my drivers license not 3 months after turning 16, and my ability to get into an accredited big 12 university despite my poor grades in highschool as well as my lack of effort which reflected upon my sat score as such. As a sophomore I’ve come to realize school is easy so long as you put in the time, however when I was expecting a fresh start and anonymity I still found classic American traditions such as Greek life to not be an option due to my social characteristics and difficulty being liked. I’ve had heterosocial relationships since starting before college , however hetero sexual relationships never lasted longer than a couple of weeks at most due to what I believe is the most overwhelming aspect of being on the spectrum of having insecurities that will more than likely end in fallouts until we learn to understand them. Being in this pocket of the spectrum is difficult because I always felt wierd in the highest functioning social skills classes offered by my public schools, yet I wish they had them. In the grand scheme of things I geuss I wanted to share my story due to the inspiration I found in your post as I stumbled upon it searching for closure on the internet.

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