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Life is Like a Box of Chocolates
By Jason Cherish
"Life is like a box of chocolates - you never know what you are going to get." - from the film Forrest Gump.
Mark, an 18 year-old college freshman had been invited to join Sigma Phi Epsilon (SigEp), the new social fraternity at Arizona State University. His older brother David, a SigEp from St. John's University (NY) and a good friend of mine, phoned me a few days earlier knowing that I was in Phoenix and that I would be working with the group as an alumnus of the organization.
"Fraternities don’t exactly have a reputation of being the best places for outstanding acts of empathy. David knew that Mark was not going "blend in" - at least not right away." -Jason Cherish
David said he was excited that Mark had been offered a bid and was considering joining the fraternity. But he was also concerned. Mark has Asperger Syndrome (AS), one of several autism spectrum disorders (ASD) characterized by difficulties in social interaction among other things.
While a responsible fraternity experience could be therapeutic for Mark - giving him access to a social world he struggles to engage in, David was worried that joining Sig Ep might be a terrible experience for Mark, too.
Fraternities don't exactly have a reputation of being the best places for outstanding acts of empathy. David knew that Mark was not going "blend in" - at least not right away. Sometimes (albeit inadvertently) Mark interacts inappropriately. He does not pick up on nuanced communication such as sarcasm, and he comprehends the world in a particularly literal way.
It wasn't even that David was concerned that Mark might look "weird" he just didn't want Mark to be taken advantage of or to be the butt of some ignorant college frat guy's stupid joke.
David asked me to make sure Mark got the introduction and support he needed to make the most of this opportunity. I promised David I would watch out for Mark as if he was my own brother. In time, everyone watched out for Mark but back then we had no idea how Mark might change our lives.
Asperger Syndrome or (Asperger's Disorder) is a neurobiological disorder named for a Viennese physician, Hans Asperger, who published a paper in 1944 describing a pattern of behaviors in several young boys who had normal intelligence and language development, but who also exhibited autistic-like behaviors and marked deficiencies in social and communication skills. Individuals with Autistic Spectrum Disorder (ASD) can exhibit a variety of characteristics and the disorder can range from mild to severe.
Mark is diagnosed with AS and therefore is considered to be "high functioning", due to his typical language development and above average IQ. However, persons with AS show marked deficiencies in social skills and typically have difficulties with transitions or changes, preferring sameness.
For Mark, his meticulously planned schedule and to-do list were hallmark symptoms. For others it can be a favorite jacket that is always zipped three quarters up, a facial expression, type of movement or routine, etc.
"Mark is diagnosed with AS and therefore is considered to be "high functioning", due to his typical language development and above average IQ. However, persons with AS show marked deficiencies in social skills and typically have difficulties with transitions or changes, preferring sameness.quot; -Jason Cherish
At a SigEp awards ceremony Mark was introduced to several attractive young ladies from various sororities on campus. He was excited but he confided that he did not understand how to interact in that type of setting.
I did not really understand what he was talking about because on the one hand he was so self aware - he understood his "disorder, and the goals of his therapy. But on the other hand social protocols were beyond Mark's comprehension like quantum physics is beyond mine. But as I kept an eye on him I began to understand what he was telling me.
At one point, Jack - one of the of the more outgoing and friendly guys in the SipEp chapter- introduced Mark to a female friend of his who was a swimmer on the ASU swim team. This particular swimmer had shaved all the excess hair from her body, as swimmers often do, to reduce drag while she was swimming. Jack joked with the swimmer about how hairy she was. It was a funny joke and everyone laughed except Mark.
Several minutes later Mark took the initiative to introduce himself to another young lady who was not a swimmer and had not been a part of the previous conversation. Still, Mark commented about how hairy she was in the same manner he had learned from Jack moments earlier. Of course the young lady was very confused and maybe a little offended until we were able to pull her to the side and explain the nature of Mark's remark.
Meeting Mark sparked a personal interest in understanding autism for reasons bigger than preventing the occasional awkward moment. Because autism is a spectrum disorder incorporating a range of severity and symptoms, high functioning adults like Mark are often the most misunderstood.
While really low functioning patients stand out because of their obvious need for basic help communicating, Mark needed help forming and understanding close friendships and fulfilling relationships.
Mark is no different in craving the intangible connections that make us human, but he is different from most of us in that he needs a lot of help forming them. Consequently he appreciates those connections in the same way one might appreciate a prized possession.
"Mark is no different in craving the intangible connections that make us human, but he is different from most of us in that he needs a lot of help forming them. Consequently he appreciates those connections in the same way one might appreciate a prized possession.quot; -Jason Cherish
Autism Spectrum Disorders are the fastest growing type of developmental disabilities in the U.S. The rate of diagnosis has been increasing recently at a rate of 10-17% annually and 1 out of every 150 children born this year will be diagnosed with an ASD.
According to Morgan McCloskey, Speech Language Pathologist with ICAN of Washington based in Bethesda, Maryland, the drastic increase in reported cases may be due more to increased awareness than a surge in prevalence. In fact, despite the relatively new recognition of ASD as a known disorder there have been plenty of people throughout history who fit the profile for being "on the spectrum".
Indeed it has largely been fictional characters exhibiting symptoms of autism such as Raymond in Rain Man, Forrest Gump, and maybe even Sherlock Holmes who have introduced audiences to autism. However, the reality is that these characters are based on real people for whom autism is real and permanent.
There is no cure for autism and there is no consensus on what causes it either. People with autism are different from one another and, unfortunately, not all people on the spectrum are "high functioning" like Forrest Gump or my friend Mark.
Some cases are downright heartbreaking as children resort to self destructive behaviors, like hitting or scratching themselves, as a substitute for using words to express their basic wants and needs or their desire for attention. And as difficult as it must be to be locked away by an inability to communicate with the rest of the world, it is important to realize that it is often devastating for parents who can't get in.
We know that nearly 1.5 million Americans are on the spectrum. But autism research remains pitifully under funded. More children will be diagnosed with autism this year than with AIDS, diabetes, and cancer combined, but funding for research is way behind many diseases such as leukemia, muscular dystrophy, juvenile diabetes, and pediatric AIDS. Autism affects one in 150 people and public funding tops out at $15 million for research.
It is extremely important that money and awareness is raised simultaneously. Families coping with autism need help and support. The myths and misconceptions about autism need to be addressed, and there are tangible costs to consider as well.
During the 1990's the U.S. population increased 13% and disabilities increased 16% while autism increased 172%. According to the Autism Society of America autism costs us $90 billion annually. But 90% of those costs are in adult services and the cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention. However, at the current rate the cost in 10 years will be $200-400 billion annually.
Still, I have to thank Mark for helping me to understand this mysterious condition. We need to help people like Mark unlock their potentially exceptional strengths and abilities.
Mark is an exceptionally innocent soul who looks at the world in a way that is totally unique to most of us. Mark speaks in an authoritative, yet inquisitive manner on topics ranging from Italian architecture and European travel to candle making and clothing.
But the thing I will always remember about Mark is that while we were supposed to be showing him how to interact in a smoother, more seamless manner so he could "fit in" he was showing us how to breakdown the automation of our actions so we could really appreciate and savor the significance of our fraternal connections-no matter where we were on the spectrum-and we will always owe him for unlocking a little more of ourselves.
For more information go to http://www.autismspeaks.org
