Celebrating autism awareness.
Posted May 30, 2017
By Andrew Solender, Vassar College Class of 2020
People on the spectrum should share their stories.
I would like to speak out on an issue that has impacted me negatively my entire life. It is the problem of a day-to-day struggle of self and mind that makes it an uphill battle to function in normal society. The problem I speak of is that of neurodivergence, and more specifically, autism and Asperger’s.
Before proceeding, here’s some context.
Autism Awareness Month
For those of you who do not know, April was Autism Awareness Month, which is sponsored by the charity Autism Speaks. The purpose of this designation 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 their differences.
Telling Our Stories
I suffer from the developmental disorder known as Asperger’s syndrome, which is on the autism spectrum. I believe strongly that the only way to gain true acceptance is for people on the spectrum to share their stories so people may better understand the struggles we face.
That is why I have decided to share my story.
It does not make me happy to share the fact that I have Asperger’s syndrome, and I tend to do so only in therapeutic settings or in dire situations. Yet, something new is now happening. It’s become clear to me that Asperger’s is not a crutch, and it’s not something shameful. This is a realization worth sharing.
Asperger’s disorder is a difference. 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 on behalf of neurodivergent people living in neurotypical environments. Despite its ridiculous sounding name, Asperger’s syndrome may be very severe. It is characterized by a lack of empathy an inability to pick up on social cues, and awkward body language. 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, it is a little off-balance, but the weight is manageable. 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 Asperger's and autism.
Asperger’s & Autism
Psychiatrists will argue whether Asperger’s is a unique diagnosis or a variant of autism. I strongly believe that it deserves its own place in their diagnostic manual, and here’s my take on the conversation.
While Asperger's is on the autism spectrum, and Asperger’s and high-functioning autism have some similarities, Asperger’s 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, tried many medications, and spent two months in a therapeutic wilderness program 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 among the majority of people in our society. 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 gives me this impression, it’s my life experience. I have quarreled with many and bonded with few.
The Wish to Connect
I’ve had fall-outs 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 the norm, and this shows very clearly in my interactions with people.
The decision to come to a mainstream college like Vassar, 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?”
Oftentimes, 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. Asperger’s 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 Asperger's 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 us 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 All Dream
Young people are 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 Asperger’s.
So when you encounter someone who cannot seem to empathize with how you are feeling or says something, not offensive, but a bit off, please don’t quickly label this person a jerk. When you meet someone in your dorm or at work, who cannot make eye contact or fidgets, do not call him or her crazy or nuts. When you come across an individual in class, or really any environment, who has trouble speaking or has a slow reaction speed, do not assume they lack intelligence.
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 very hard thing to do.
Andrew is a rising sophomore at Vassar College in Poughkeepsie, New York. Recently he wrote a version of this piece for the Miscellany News, the college newspaper.
For more information on Mark Banschick, M.D., visit his website.