Tuesday, January 22, 2008

Bobby Fisher, Bioethics, and Asperger's

[Hat tip to colleague Terry Tomsick for bringing this to our attention] In a recent MSNBC article, bioethicist Art Caplan ponders the question "Would you have allowed Bill Gates to be born? Advances in prenatal genetic testing pose tough questions". Upon hearing the very sad
news this past week about the death of chess champion Bobby Fisher – I had to ask the same question: Would you have allowed Bobby Fisher to be born?

While we don't know for sure, Fisher's outrageous and at times hateful and bigoted behavior may have been caused by Asperger's syndrome which is part of the autistic spectrum . Or perhaps Fisher suffered from having an "extreme male brain" as characterized by Simon Baron Cohen, PhD, MPhil, a professor of developmental psychopathology in the departments of psychiatry and experimental psychology, a Fellow of Trinity College, Cambridge, and director of the Autism Research Centre at the University of Cambridge, in the United Kingdom, and author of the book "The Essential Difference: The Truth about the Male and Female Brain".

We may never know the truth but it would be tragic if he were simply remembered as a hateful, reclusive genius and not for the many accomplishments he brought to the world.

Dr. Caplan captures the key bioethical challenge these new genetic technologies and our understanding of the brain pose:

As genetic testing moves into the world of mental health, we are going to face some very tough questions. Will medicine suggest that any and every variation from absolute normalcy is pathological? How can we draw lines between disabling diseases such as severe autism and
more mild differences such as Asperger's, which may give society some of its greatest achievers? Will parents have complete say over the kind of children they want to bear? And what sorts of messages will doctors and genetic counselors convey when talking about risks, probabilities and choices that involve not life and death but personality and sociability, genius and geekiness?

Neither medicine nor the general public are at all ready to deal with the emerging genetic knowledge about autism, Asperger's or other aspects of mental health. But the future of our society may well hinge on how we answer these questions.

Bobby Fisher: May you rest in peace.


wreese said...

Very interesting and enlightening. I never knew this about Fisher--I have a 22-year old great-niece with Asperger's, who also suffers from OCD. I pray and fear for her everyday, particularly now that she's developed a fixation on becoming sexually active--a dangerous thing for someone as compromised as she is.
Her entire life up till now has been one "fixation" after another, combined with varying degrees of inappropriate comments/behavior, although nothing as extreme as Fisher's. Asperger's is a challenge for the aflicted and those who love them.

kiwihelen said...

I'm a 37 y/o woman with AS. I'm a professional, employed and in a relationship.

I didn't choose AS - and no amount of therapy or medications is going to change the way my brain is wired

Things I hate about my AS:

Sensory integration issues.
Despite my perfect hearing, I struggle to hear you speak if there is background noise, so you think I am rude or stupid asking you to repeat what you have said.

Dyspraxia. I will occasionally stumble and fall even on flat surfaces, and I hate it when people comment, because it emphasises my differences.

Co-morbid anxiety. I've needed my anti-depressant meds for 12 years now - they help me keep the worst of my fears under control - so as my health provider stop telling me I should be able to come off them. Conversely, stop trying to label me as Bipolar II - if this is hypomania, then I want a refund.

Isolation. Because I have been the victim of bullies in every school and in nearly every work place I have been in, I am kind of hesitant to be too friendly with you. Just accept you are going to have to win my trust, OK?

Things I love about my AS:

My memory. I can read journal articles and research in various professional areas and remember the gist of them (and where I read it), then recall them in meetings and training seminars and for clients. I've noticed this helps your meetings, your learning and your care.

My intuition. Despite the research to the contrary, some of us aspies appear to have empathy - it just doesn't work in a neurotypical way. When I can manage that difficult staff member and reduce the problems she causes, it is because I can see where things are going wrong...because I have to constantly monitor the environment to see if it fits the schema I've been development or not.

My systematising ability. It doesn't cause me a problem that I have to find order in things - because it allows me to see things differently from most people. And you in my workplace benefit from the off-the-wall solutions I suggest to the problems we have at work.

My sense of fun. It is gentle and quirky, like spotting a discord between words and images. I hate the times when humor degrades or belittles another human or harms any being. I still retain my childlike excitement at the miracle of life.

My fellowship with animals and other aspies. I'm the person to whom you say "but our cat never goes to strangers", and I have a rich correspondence with other aspies, both men and women around the world.

In the AS community, we talk about whether we are "out" as AS. Some like me choose to keep our diagnosis quiet, because we are not sure you will not try to limit us with your assumptions and perceptions but let me share 3 more things

Do I want a cure? No. This is not a disease, this is who I am.

Do I wish I was not born? No. Because I am valuable as a human being.

Who am I?
I could be your neighbour, your work colleague, your nurse,doctor or vet. I could be the researcher who has worked on the new drug saving your life. I could be the Mom at the school gate, or the neighbour who smiles at you as you put out the trash.

Ours is a spectrum - so don't assume I am disabled by my AS

wreese said...

This is great and wonderful commentary and so appreciated. Your knowledge and perspective obviously comes as the result of seasoned years living with your "condition" and wisdom achieved after growth in learn who you really are--as we all must do.

I hope my post did not come across as one of ignorance and disapproval of Aspies. I love my 23-year old great-niece very much, and have suffered in watching her go through major depression throughout the course of her young years at not having friends, not having dates or boyfriends and being summarily rejected by the majority of peers and those she encounters because of her AS. It pains me to see what she endures, and angers me to see her immediate family treat her dismissively. She's a wonderful girl.

I have a 23-year old daughter--her second cousin--who despite us living in California, and her living in Michigan, tries to give her as much attention and time as she can, as there are few her age within and outside our family she feels free or comfortable talking to.

That is not to say that AS colors the entire spectrum of her personality. But of course, most as you know, merely focus on the cons of her condition, refusing to see HER--but isn't that the case with all of us? We all have to constantly prove to the world that we are not the sum of our "cons".

I applaud your insight and growth over these years in understanding AS and embracing it as you have. It would probably be a terrific boost for my great-niece (Sheena is her name), to hear about Aspies such as yourself.