4 posts tagged “aspergers”

"These children are born twice. Their second birth depends on you, on what you are able to give to them." Because they are born twice, their journey through life is a far more agonizing one than most. Yet ultimately, their rebirth will be yours too. This, at least, has been my experience. I have no more to tell you.”

Thirty years later, I want to thank you."  From the novel, Born Twice, by Guiseppi Pontiggia

Early in the movie, the Keys to the House, the biological father of a disabled 15 year old boy meets his son for the first time. Born with significant birth defects (though lets assume for the sake of the conversation that the word ‘defect’ simply means, not along the pattern of ‘normal’), young Paolo absorbs the father that abandoned him so many years earlier almost without blinking. For what he lacks in mobility, he certainly makes up for in ability to forgive. By the end of the movie, Paolo is comforting Gianni (his father), helping him to cope with the feelings of loss that he knows his father will experience when they must again be separated. In a sense, this is a story of a prodigal father. A father who ran away but who finds, upon his return, a boy running (albeit with a cane) to meet him, embrace him, and slay a fatted calf for him. Clearly, Paolo is not disabled. We are. And this may be the point.

Somewhere around the halfway point in the movie, Gianni is introduced to the book, Born Twice by Guiseppi Pontiggia. The novel, ironically, is largely the source upon which the movie is based so it is interesting to see it playing a starring role in the movie itself. The story line revolves around a father who simply records anecdotal experiences and reflections from 30 years of raising a “disabled” (or differently abled) child. Early on in the novel, a doctor tells the boys’ father, Frigerio, "These children are born twice. Their second birth depends on you, on what you are able to give to them" and it is precisely this mission that Frigerio sets out to accomplish, working for his son in every way possible. The book is dedicated to those with any number of attributes that place them off the bell curve.  

            "For the disabled who struggle not to be normal but to be themselves."

“Sometimes,” says the father in Born Twice, “he [Paolo] is almost fatherly with me. It is one of the things that touches me deeply.” I think this was probably the primary sentiment that the movie based on the novel is trying to highlight in the way that it portrays the relationship between Gianni and Paolo. Paolo’s handicaps make it essential that he be helped by a fatherly figure long after he should be. But Gianni’s handicaps as an adult necessitate that he also be cared for long after he should be as well. Sometimes people don’t understand things when it would be age appropriate to do so. Paolo is fifteen. His biological father is much older. Both were behind. The secret to their love is to not condemn each other for being behind in whatever way they find each other behind – to not be ashamed of each other’s “retardation” – but to simply offer to help in such a way as to say “Mostly, what I like is spending time with you.”

 In the movie, The Keys to the House, a mother of one of the other disabled children in the hospital recommends the book to Gianni and insists that he should read it and that it is “about them”. The message implicit in the chapters of the book that I have had the opportunity to read I think is simply that people who work with or care for those outside the bell curve of normalcy must eventually come to own what they feel. As the children they work with are not exactly “normal” so also the emotions that a person who cares for them will not necessarily be “normal”. Many people will be able to define what a person in such relationships “should feel” based on their own experiences of “normal children” but one should get used to simply being honest – feeling authentically instead of predicatively. One has duties, and they probably should not be shirked. But one does not have a “duty” to feel a certain way about anything. “We can think of many lives” says the father in Born Twice, “but we can never disavow our own.”

The blessing of this movie is that Paolo shows himself to similarly be a soul. His gift to his father is to feel towards him as he does. Not as the adults in Paolo’s life assume that he will based on what an abandoned boy should feel. He has no reason to love his dad. But he does any way. In the final analysis, we should all be so “disabled.”

Question for Comment: Have you ever learned something profoundly important from someone disabled?

"People with Asperger's want contact with other people very much; we're just pathetically clueless at it, that's all." Donald Morton

If you start out with the assumption that what you are going to watch in this movie is a caricature of a mental/emotional condition and not the condition itself, there can be much to be gained from it. There are aspects of the main characters' behaviors that are inappropriate (although I suppose that is often the point when trying to look at the difficulties that people with high functioning Aspergers or Autism face). For a variety of reasons, the movie is a paradox as it might be used to help children understand people with "outside-the-bell-curve" conditions but for a variety of other reasons, it is not really a kid's movie. It has entertainment value as a caricature but perhaps a well-done documentary will serve more effectively as an educational tool.

I suppose it should be said that the characters in this movie make all the same ethical, relational, moral, and life mistakes that all movies seem bound and determined to have their main characters make. Only in the case of people with certain disabilities (differing abilities) the mistakes are probably even dumber. It is not that people who are different cannot find people to love and be loved by. It is simply that the particular individuals in this movie do not know THEMSELVES well enough to be diving into intimacy as deeply and quickly as they do. They betray a greater lack of honest understanding about themselves than any functionaing relationship can handle.

"There is one difference between us," she says, "You want to be normal." And much depends on this difference. Which is why one asks, why have you moved in with someone who is so fundamentally different than you? I suppose the answer is that her particular form of the condition leaves her almost completely at the mercy of impulses.

 The movie makes sure that everything comes out right in the end but after living with theese challenges for any length of time, you wonder if they really could in real time. That will be the strike against it. It attempts to show how lack of knowledge of oneself and of another person can lead to painful heartwrenching trainwrecks in relational/emotional life. But it somehow fixes these trainwrecks up in short time and lets the characters charge right into another round of tragedy without learning to really show down and learn.

But, that said, it does assemble an intriguing lot of characters and gives each of them a different assortment of the symptoms of their condition and if you could just watch the parts of the movie where syptoms are highlighted, it would be interesting fodder for discussion.

 I sometimes wonder if we only find the blessings that have been buried in our day for us if we are living altruistically? Last night I picked up a hitch-hiker around ten at night and decided to take an extra fifteen mile expedition to get him to where he wanted to go. It actually feels good to do good deeds for strangers. Anyway, I felt a need for countering some sad things in my life today and wound up thereby, through a series of coincidences, reading a book about Daniel Tammet, entitled Born on a Blue Day. You can meet Daniel in a David Letterman interview HERE. 

Having just finished the book a few minutes ago, I find myself pondering just why it is that some people are given these "thorn in the flesh" brains that can be so "Shazam Cool" but render whole periods of their lives a wasteland of lonliness. I wonder if there has ever been a savant in the world that would not have, at some point in time, traded their "gizmo head" in for a simple working relationship?

If I forge to mention it later, I love some of the things this guy has to say about the use of metaphors and the invention of words.

What strikes me about this video, after reading the book, is how well Daniel Tammet has learned to "cover" his autism spectrum/Aspergers tracks in a rather daunting social situation like this. This is a young man who can recite pi out to over 22,000 decimal places and can learn to speak fluent Icelandic in under a week. I love the story of the moment when his brother Lee discovered that Daniel could calculate huge mathematical equations in his head instantaniously (Daniel feels and sees his way to answers to math problems more artistically than by means of mathematical process.) His brother, sitting there with a calculator, asked him "What is 82X82X82X82?" to which Daniel  almost immediately said "45,212,167." :His face looked different. He was smiling . It was the first time I had ever seen him smile at me."

If anyone reading this only gets a chance to read one chapter of this book, I would recommend chapter Five Odd Man Out. It is about the social difficulties of people with unusual wiring issues like Aspergers or high functioning autism. "I would spend hours awake at night imagingin what it would be like to be friends with somebody," he writes. On page 75, he talks about the problem that having uncesant cascading connectivity can have when trying to make conversation "in part because I remember so much of what I see and read and a chance word or name in the middle of a conversation can cause a flood of associations in my mind like a domino effect." He calls them "associative detours".

I also found it interesting how he tends to be able to think in short powerful bursts that are followed by periods when it seems he can't concentrate on anything. And I loved the part where he gave up on math because it seemed simply useless to learn a system of calculating that was infinitely less effective than the artistic method that he uses. What is fascinating to consider is how better art classes might lead to better math skills. The possibilities for what this one brain has to teach us are incalcuable, maybe to anyone but him.

What saddens me is that research indicates that something like 12% of the people diagnosed with high functioning autism have full time jobs in the UK. Why? The reasons are complicated I suppose but they boil down to societies which are unable to adapt their expectations to the place where they can stand to benefit from a different kind of servant savant. People on the autistic spectrum simply need help to BE OF HELP. As do we all.

Take a moment to watch Daniel Tammet learn Icelandic in one week. SEE HERE. Or watch the whole documentary HERE. In an interview on this documentary, he says something profoundly true. "The line between profound talent and profound disability seems really a surprisingly thin one." 

 Question for Comment: Do you think people with some sort of high functioning idiosyncrasy are better off partnering with someone else who shares their uniqueness, or with someone who doesn't? Why?

Look Me in the Eye: My Life With Aspergers, by John Elder Robison

John Elder Robison’s memories of growing up with Aspergers is the sort of book that is likely to make many  people say “I knew a kid like that” or “Doesn’t that just remind me of ….” Or “That is Sooo …. Me”.  

“Even at the age of five I was beginning to understand the world of things better than the world of people.” P. 18

I think in my case, I came to understand the world of ideas better than the world of people. At least I feel that way today. Robison suggests that it is important for an Aspergian kid’s peers to know that they WANT to learn how to relate. They don’t WANT to be humored and then ignored. “I never learned how to carry on a conversation from talking to grown-ups, because they just adapt to whatever I said. “ Robison writes,

“Kids, on the other hand, got mad or frustrated.  How do normal kids figure this out?  They learned from seeing how other kids react to their words, something my brain is not wired to do.  I have since learned that kids with Aspergers don’t pick up on common social cues.  They don’t recognize a lot of body language or facial expressions.  I know I didn’t.  I only recognize pretty extreme reactions, but by the time things were extreme, it was usually too late.” P. 21

What it eventually leads to is a sense of social failure and isolation that can be incredibly painful

“When I had a birthday my parents would make a cake and get me some presence and everyone ran around looking jolly.  But every now and then I got invited to birthday parties for other kids, and at those parties there would be 10 or 20 kids all running around laughing.  Those were the good parties, I thought.  Mine were crummy. . . . I didn’t fully understand the reasons why, I knew their situation was better than mine, and it hurt to see what I was missing.” P. 27

“All of the child psychologists who said ‘John prefers to play by himself’ were dead wrong.  I played by myself because I was a failure at playing with others.  I was alone as a result of my own limitations, and being alone was one of the bitterest disappointments of my young life.  The sting of those early failures followed me long into adulthood, even after I learned about Aspergers.” 211

Some of the traits that Robison highlights are the “flat affect”

“I have what you might call a logical empathy for people I don’t know.  That is I can understand that it is a shame that those people died in a plane crash.  And I understand they have families, and they are sad.  But I don’t have any physical reaction to the news.” P. 32

The “miners helmet” (my analogy)

“No one knows why some people have a gift like this and another doesn’t, but I’ve met other Aspergians with savant like abilities like mine.  In my opinion, part of this ability – which I seemed to have been born with – comes from my extraordinary powers of concentration.  I have an extremely sharp focus.” P. 65

The inability to keep up with the pace of normal conversation because of the need to think (maybe even overthink)

“I’m a very logical guy.  Psychologists say that it’s an Aspergian trait.  This can lead to trouble in common social situations, because ordinary conversation doesn’t always proceed logically.  . . . .  it’s clear to me that regular people have conversational capabilities far beyond mine, and their responses often have nothing at all to do with logic.  I suspect normal people are hardwired to develop the ability to read social cues in a way that I am not.”

Occasional Perseveration in speech patterns, almost as though the modem speed of the brain does not allow the play feature to keep up with the download function.

“It turns out the sentences are not formed in a single area of the brain.  It is far more complex than that.  We form the concept of a sentence in one spot.  We choose the verbs in another area and nowns and yet a third spot.  The sentence is built in pieces throughout the brain and then assembled into finished form.  For some reason, Aspergians like me experience delays in the transmission of the sentence fragments within the brain.  That gives a slightly ragged cadence to her speech that’s quite distinct from that of normal speech.  Once you begin listening for it, it is quite recognizable.” P. 286

But the central contribution of this book involves a celebration of the strengths and weaknesses that a person with aspergers can learn to live with and even turn into happiness by means of the alchemy of self-knowledge. “My conversational difficulties highlight a problem Aspergians face every day” Robison writes:  

“A person with an obvious disability – for example, someone in a wheelchair – he’s treated compassionately because his handicap is obvious.  No one turns to a guy in a wheelchair and says, “Quick!  Let’s run across the street!”  And when he can’t run across the street, no one says, “What is his problem?”  They offer to help them across the street.  With me, though, there is no external sign that I am conversationally handicapped.  So folks here some conversational misstep and say, what an arrogant jerk!  I look forward to the day when my handicap will afford me the same respect accorded to a guy in a wheelchair.  And if the respect comes with a preferred parking space, I won’t turn it down.” P. 194

He makes it clear that it is possible for any human brain to develop abilities once it sets such development as an intention.

“When we are young, our brains are constantly developing, making new connections and changing the way we think.  As I recall my own development, I can see how I went through periods where my ability to focus inward and do complex calculations in my mind developed rapidly.  When that happened, my ability to solve complex technical or mathematical problems increased, but I withdrew from other people.  Later, there were periods where my ability to turn toward other people in the world increased by leaps and bounds.  At those times, my intense powers of focused reasoning seemed to diminish.

I believe that some kids who are in the middle to more high functioning range of the autism continuum, like me, do not receive the proper stimulation and end up turning inward to such an extent that they can’t function in society, even though they may be incredibly brilliant in some narrowly defined fields, like abstract mathematics. . . . Papers I wrote back then are flat and devoid of inflection or emotion.  I did not write about my feelings because I didn’t understand them.  Today, my greater insight into my emotional life has allowed me to express it, both verbally and on paper.  But there was a trade off for that increased emotional intelligence.  I look at circuits I designed 20 years ago and it is as if someone else did them.” P. 209

“… it has been a good trade.  Creative genius never helped me make friends, and it certainly didn’t make me happy.  My life today is immeasurably happier, richer, and fuller as a result of my brains continuing development.” P. 210

 “I trained myself to respond in a manner that is only slightly eccentric, rather than out and out weird.” P. 239

All in all a book of hope for those of us affected by the idiosyncrasies of being differently wired or by the idiosyncrasies of differently wired children.

Question for Comment: Is there anything that you feel more comfortable with than people? Has it been difficult for you to assemble enough friends for a “decent” birthday party?