Asperger’s

Oliver Sacks: June 9, 1933 – August 30, 2015 – Some People Can’t be Replaced

Oliver Sacks mattered much more than most people will ever know. He is not a household name, so here’s some background. Oliver Sacks was born in London and educated at Oxford, California and New York. He was a professor of clinical neurology at Albert Einstein College of Medicine and author of numerous books, including Awakenings (1990) which became a film starring Robert De Niro and Robin Williams.

I’m not going to recount Mr. Sacks’ achievements or claim to have studied all of his work. This post is not about that. It’s about what came over me when I was given the stunning news that I was the father of a son who had a permanent neurological disability. This was back in the mid 1980’s and it hit me like a ton of bricks. I began to read and research everything i could to understand and learn of ways I could make a difference in my young son’s life.

Needless to say this was before access to digital content. I had to visit libraries, universities, and doctor after doctor. I was not happy with what I was learning or with any of the results.

Then I read Awakenings by Oliver Sacks, and I began to understand that things were not my fault. Nor my son’s fault. The brain is a complex organ. The muscle of thinking. When it’s not shaped perfectly as it grows, things can go a bit off the reservation.

Dr. Sacks demystified the brain, especially brains that work in unusual and sometimes fantastical ways. He did this through deep study and research. By spending time with his patients. By explaining things in stories. He wrote in journal style. Almost like a diary, in great detail. You were there and you began to understand and eventually appreciate people who processed stimuli in a completely different manner.

Mr. Sacks was diagnosed with cancer at age 81 and he faced it head on. My Own Life, which appeared in The New York Times is an amazing read.

His intelligence, creativity and amazing stamina has helped countless people better understand loved ones who are in a way, “out of this world.” He also inspired numerous people to take up brain practice. I always looked forward to his writings and insights, and found it interesting that he was frequently photographed with a hand near or on his head, seemingly trying to reach into his own grey matter for more answers.

He was rare. He will be terribly missed. But at least we had him for a short while. Long enough, I think, to make a huge difference. I know he did for me.

Near the end of his life he said, ” When people die, they cannot be replaced.”

Photo Credit: Joyce Ravid for Alfred A. Knopf publishers, 1995

Chess Incarnate Bobby Fischer on the Spectrum

So much has been written in the wake of Bobby Fischer’s death. It’s all covered, the chess brilliance as well as the strangeness of his life. Mr. Fischer was the essence of chess in human form. When someone operates at the genius level, particularly as a child, we are naturally in awe. We want to know more about them and unknowingly apply pressure to push them into the sunlight, so we can observe and marvel. He captured the imagination of millions and struck fear into the hearts (and minds) of any would be opponent. But he did not want to be on display. Of course the great game would ultimately reclaim its source material in an inescapable checkmate, a predestined gambit; 64 squares, 64 years.

Photo Credit: Steve A. Furman

In reading about his life and quirks it seems quite probable to me that Bobby Fischer was on the Asperger’s spectrum.

Asperger’s Syndrome is the dominance of specialized thinking and an obsession to do one task, one way, one step at a time. This specialized thinking is detail oriented, logical and original. But the person often has challenges developing skills such as conventional socialization and communication. Definition: Brian R. King

If you have browsed my writings in the past, you know I have an adult son with Asperger’s. He is in many ways a genius as well. A passionate student of history and geography with a nearly photographic memory and a mind crammed with facts, and full of quirks.

It is clear that Mr. Fischer lived a tortured existence; paranoid and demanding, in nearly every facet of his daily life. Fully consumed with chess and only chess, he dropped out of school because it robbed him of his time to play. His fixation on the kind of chairs he sat in during tournaments, his insistence that he could hear the TV cameras whirring behind glass, down to a small, locked suitcase that contained special diet and nutrient items. All of these things point to someone who is part of the spectrum community.

Growing up I remember the focus placed on his match with Boris Spassky in 1972. That event, but mostly Bobby Fischer, got me and so many others interested in chess. The match defined a moment in history between the U.S. and the Soviet Union. Russians have always dominated chess, Bobby Fischer was the western world’s first hope of cracking that monopoly, and he did.

Photo Credit: The New York Times

As more is discovered and awareness is raised about Asperger’s, the people who have this condition will be able to integrate more comfortably into society at large. Perhaps Mr. Fischer’s life would have been better understood if neuro-typicals knew more about these still largely secret ways human neurology operates.

Photo Credit: The New York Times

He’s gone now, reclaimed by the universe. I hope his stunning performances on the chess stage will be how he is remembered.

Suggestions

Play chess and teach your kids how to play
Watch the film Searching for Bobby Fischer
Learn more about Asperger’s Syndrome

American Airlines Finds A Way

Several posts ago I commented on a recent experience traveling United Airlines. It was a mixed bag, as anyone who travels by air these days knows is a generous statement. But I recently had an experience with American Airlines that proves a great customer experience can be delivered regardless of the state of an industry, or the attitudes of C level executives.

My oldest son is an Aspie (Asperger’s Syndrome). See my earlier post here for a more detailed explanation. He is an experienced air traveler, but if there is a gate change or things don’t go as expected, he gets rattled and confused. To avoid this I obtain a gate pass and accompany him through the concourse and then wait until he boards the plane.

He was recently booked on a flight from Chicago to Philadelphia but we couldn’t get a seat assignment. We went to the airport, checked his bag and instead of the self-service check in machine giving him a boarding pass we got a slip of paper instructing us to go to the gate for the seat. Here is where American personnel really delivered. The coach check in line was extremely long, so an American employee directed us to the First Class check in area where there was no line. Have you ever noticed that the First Class check in countertops are made of granite vs. the formica you get in coach? And instead of the cattle maze being flat, black straps, they’re velvet ropes. Sorry, back to the story. I was immediately issued the gate pass, and was told that there were blocked seats on the flight and to explain the situation to the gate agent. He notated my son’s status in the system so they would know when we got to the gate.

Once at the gate, we learned the flight was oversold and they were asking for volunteers to take a later flight that connected through Dallas. When I explained to the agent about Julian’s situation, that he couldn’t really handle connecting flights, and his bag was already checked on this flight, she said she would do all she could to get him a seat.

During the wait she used the public address system to update us on the status, even calling Julian’s name to remind us she hadn’t forgotten about him. She did this several times. As small as this sounds, it meant a lot to Julian. He was able to stay calm and hopeful. As the flight was boarding, she happily called his name and handed him a boarding pass. To top it off, it was a First Class seat, 6A!

A great customer experience goes a long way to keep customers loyal. In many cases it is just as important as price. Hats off the the thoughtful American Airlines employees, who on this day, took the extra time to put the customer first. If you are someone that interacts with consumers on behalf of your company it is critical to remember the following. What a customer experiences defines the brand. Maybe American really does know why we fly.

Neuro-Typicals Still Struggle to Understand, But Keep Trying

New York Universities’ Child Study Center had a great idea. They were looking for a way to raise awareness of children’s neurological conditions. Certainly a noble idea. The ad agency BBDO worked pro-bono to create a campaign to interrupt consumers and get them to read the ads. Their creative execution was to put the message content in the form of a ransom note. Of course breaking through the clutter is always the challenge for any ad campaign, and as it turned out their goal was met. The ads ran for only two weeks, and they were indeed interruptive. So much so that calls and e-mails poured into the Child Study Center. Here is one of the ads that actually ran.

I am a parent of an Asperger’s Syndrome adult (see previous blog here). When I first saw the ad I was alarmed (the creative was doing it’s job), my immediate next reaction was that this would help raise awareness (the campaign was doing its job). But it did feel negative to me and that is something my son and I are trying to leave behind.

It is very difficult for neuro-typicals to put themselves inside the complex minds of these children and adults. Frequently their days are filled with anxiety, confusion and fear. In a way this ad transforms a neuro-typical reader into someone on the autism spectrum. You read it and you can’t quite figure it out… It doesn’t fit into the familiar buckets… You are searching for meaning… Based on that I find it difficult to be overly critical about the campaign, but there has to be a better way.

So what to do next? I wonder if the well-meaning people responsible for this campaign consulted with the parents and individuals who live in this world everyday. A simple focus group would have told them that they want to move beyond the negatives and into the positive attributes that our children have. These are wonderful people and can contribute to society in meaningful ways, and in some cases in superior ways. The human spirit, regardless of what mental or physical differences shape it’s vessel, is essentially universal. People want to make a difference, to live fulfilling lives, communicate with others, and be happy.

The attitude and approach of all of us must evolve and advance, just as the attitude toward regular medical conditions have evolved (diabetes, cancer, etc…). The key to this, as with so many things, is awareness followed by education. Once those building blocks are in place, people will get it and go to work.

I was happy to read at the end of The New York Times article on this topic (you can link to it here) that they were going back to try again. I’m grateful for their efforts and will look forward to what they come up with next.

Why Should Neuro-Typicals Make All the Rules?

My son is an Aspie. That means he has Asperger’s Syndrome. Probably more frequently known as autism. I attended a day long seminar yesterday entitled Asperger’s Success: All Things Positive, Practical and Possible. It was an incredible experience full of ideas and dialogue, but mostly of hope. Brian R. King is an Aspie and he has given all of us a precious gift by having the vision and courage to define Asperger’s Syndrome in a completely new way. Usually Asperger’s is defined as someone who has a broken mind. A brain that doesn’t work like the majority of us who are referred to “neuro-typical” (one good label deserves another).

Here is how Brian defines Asperger’s.

The dominance of specialized thinking and ability that prioritizes doing one task, one way, one step at a time with limited flexibility. This occurs to various degrees and results in strengths in the areas of focus (especially in the area of specialization), honesty, detail orientation, logic and original thinking. This tendency toward specialization also often results in challenges developing more generalized and complex skill sets such as conventional socialization and communication.

Brian takes a very different approach, saying that Asperger’s is not a syndrome, but a spectrum, not a disease but a collection of characteristics. He gave all of us sitting in the audience hope and energy. You can find more at his web site here. To see Wikipedia’s Asperger’s entry go here.

My son is now 26 years old. When we were going through the school system, no one really understood how he processed information. Most of the educators didn’t know what to do. Asperger’s did not enter the official psychological diagnostic manuals until 1994. As the years progressed it got better in school. Julian survived quite well, but I wish it would have been easier for him. We didn’t have web sites, email or blogs to connect other parents or kids. Now you can do a simple search and find out so many things.

One in 94 children born today will be on the spectrum. For reference, Juvenile Diabetes affects one in 150 children. Asperger’s is being diagnosed at a very rapid pace these days. And although there is a lot more awareness and money being raised to find a cure, Brian is championing a new concept. These kids/adults are not broken. The neuro-typicals shouldn’t make all the rules. Education, not therapy will make a bigger difference in the lives of these special people. But the neuro-typicals (NTs) must “get it.” They have to start seeing that these people can make just as valuable a contribution to society and culture as anyone else.

Julian got his Bachelor of Science degree last year. He lived in a dorm on the campus of Edgewood College for four years and thrived. It was an amazing accomplishment. He is working part time now and doing very well. But independence is the goal. Success the endgame. As Brian says, “success is when you find the place where passion and ability meet.”

If you are looking for help or to help, you might want to take a look at Disability Community Solutions, a not for profit organization. “The mission of DCS, in partnership with persons with disabilities, their families and corporations, is to elevate the experience from standard to extraordinary.” You can visit them online here.

Brian in action.