12/22/09

GOOD BYE TO KIM PEEK WHOSE AMAZING LIFE WAS ABOUT ABILITY, NOT DISABILITY


"You don't have to be handicapped to be different, because everybody is different", Kim Peek.

Kim Peek, one of the most amazing people to ever live and the man who the MSM promotes as the model for "Rain Man" died on Saturday of a "heart attack". Not only was the character "Rain Man" a compilation of many people, but Kim Peek was not autistic, he most likely had FG Syndrome. FG Syndrome is a genetic disorder which is linked to the X chromosome which contrary to  much which is published about it does affect girls. Once again all the research just like with Aspergers was done on males, so physicians and other health care professionals do not recognize it in females and they get labeled with personality disorders or misdiagnosed with a mental illness(not all with FG have the clear cut physical characteristics). When information is reluctantly received by these professionals and more are diagnosed with FG Syndrome everyone will start wondering what is causing the sudden upswing in cases when they were there all along, just misdiagnosed due to ignorance and a preference by the medical community to focus on males. FGs are very socially outgoing and socially skilled people. Now many autistics contrary to the media BS about autistics do want to be successful at socializing, they just aren't good at it, an FG is(I am talking about young autistics who haven't developed social skills yet).


Autistic savants are generally very focused in one area and not very knowledgeable in other areas. Kim Peek was a "megasavant" and absorbed everything, forgetting almost nothing. He could read two pages of a book at the same time, using separate eyes for each page, even with the book upside down(in 10 seconds), this is all a clue about his brain structure. His memory got better with age, instead of worse. He had no corpus calosum which is basically the highway in the brain which connects the different areas, nor an anterior commissure. He could remember the contents of 12,000 books yet had an I.Q. of 73 and could not dress himself. Most of the people who have FG Syndrome are not mentally retarded as much of the literature says. Just like autism it is a spectrum disorder and will likely have many more diagnosed in the future who have been misdiagnosed by the medical community who has very little understanding of it. I can envision many parents or people who have FG going to the medical community and saying they think they have it and being laughed at and told they don't know what they are talking about, especially if they are female. This is still happening to females with Aspergers.

The movie "Rain Man" has promoted negative characteristics of autistics for years based on false information about autistics, although I do have to say I used to get excited when Jeopardy was about to come on TV. When I watched Rain Man with my ex-husband he looked at me during the Jeopardy porch scene, the book fit scene smiling and after the movie said, "He kind of reminds me of you." I said, "I would never buy my underwear at K-Mart", to which he replied, "K-Mart and Mervyns aren't that different." Of course I could not argue with that and trying to be funny said, "Have you been rearranging my books again?" because he would often move one of them to see if I would notice. An autistic would generally not be throwing a fit on the front porch of a home where they did not know anyone because they wanted to watch Jeopardy.

Kim's father said this about him, "Kim is not behaviorally autistic. He has a warm, loving personality. He truly cares for people and enjoys sharing his unique skills and knowledge capacity(autistics for instance in general do not care for working in study groups). Known as ‘Kimputer’ to many, his knowledge-library includes World and American History, People and Leaders, Geography (roads and highways in U.S. and Canada), Professional Sports (baseball, basketball, football, Kentucky Derby winners etc), the Space Program, Movies and movie themes, Actors and Actresses, the Bible, Mormon Church Doctrine and History, Calendar Calculations (including a person’s day of birth, present year’s birthday, and the year and the date the person will turn 65 years old so he or she can retire), Literature/Authors, Shakespeare, Telephone Area Codes, major ZIP Codes, all TV stations and their markets. He can identify most classical music compositions and tell the date the music was written and the composer’s birth date and place of birth and death Kim has read (and can recall) some 7600 books. He also keeps current on world, U.S. and most local events by reading newspapers, magazines and by listening to the media. He reads constantly He can also describe the highways that go to a person’s small town, the county, area code and ZIP code, television stations available in the town, who the person’s pay their telephone bill to, and describe any historical events that may have occurred in their area. His expertise includes at least 14 subject areas.”

First of all autistics are often warm and loving people(In fact many Aspies become nurses, social workers, and psychologists) but many don't know how to communicate this to others and/or can't stand being touched due to sensory issues. Noticing that Kim does not behave like an autistic is a clue that he isn't autistic. Now, many autistics who learn social skills do develop the ability to communicate how they feel to other people and understand what people expect from them in order to feel like they are cared about(It's all about learning what people expect in order to facilitate communication for everyone). FGs are born with this ability, that is one of the huge differences.

Lynn Soraya's on the Aspergers blog from Psychology Today:

Dr. Darold Treffert, consultant on the movie and author of the book "Extraordinary People: Understanding Savant Syndrome" writes: "Along the way to its completion, the original script for the movie Rain Man underwent a number of modifications. While Kim Peek served as the initial inspiration for the story, Raymond Babbitt, as portrayed so admirably by Dustin Hoffman, is a composite savant with abilities drawn from a number of different real life individuals. The main character in that movie, Raymond Babbitt, was modified to be an autistic savant. The story thus is that of a person who is autistic but also has savant skills grafted on to that basic autistic disorder. It is important to remember, therefore, that not all autistic persons are savants, and not all savants are autistic. In preparation for his role, Dustin Hoffman spent time with several other autistic savants and their families, as well as with Kim."

According to Dr. Treffert, "Kim Peek was born on November 11, 1951. He had an enlarged head, with an encephalocele, according to his doctors. An MRI shows, again according to his doctors, an absent corpus callosum — the connecting tissue between the left and right hemispheres; no anterior commissure and damage to the cerebellum. Only a thin layer of skull covers the area of the previous encephalocele." His unique brain structure led to his amazing abilities, but also caused difficulties. He found many typical daily activities, such as dressing himself, difficult.


Despite his challenges, he was able to memorize every book that was read to him by the time he was 16-20 months old. Over the years he was able to developed encyclopedic knowledge in at least 15 subject areas. He was an expert in everything from history, to literature, area codes, zip codes, classical music, and calendar calculations. Barry Morrow summed up Kim's impact on people in the following quote: "I don't think anybody could spend five minutes with Kim and not come away with a slightly altered view of themselves, the world, and our potential as human beings."

From the FG Syndrome Family Alliance:

 FG Syndrome was first described in 1974 by Drs. John M. Opitz and Elizabeth G. Kaveggia as a multiple congenital anomaly/mental retardation syndrome(some functions of the brain which are considered neurotypical abilities are limited simply due to the lack of connections within the brain structure). While FG Syndrome was originally diagnosed as rare, since the mid-1990s, clinical researchers have debated and studied the likelihood that it is more common than first suggested, manifesting in known traits that may or may not actually include intellectual disabilities(in other words not all of them are intellectually disabled, each individual will have their own unique abilities and should be assisted and allowed to develop to their full potential and not labeled "retarded"). Different is not defective and differences have in history helped society a great deal.

While some of the "known" traits of FG Syndrome have changed and/or researchers do not agree about all aspects of FG Syndrome, there are many common features which are discussed in this site. But it is important to remember that a child can have the syndrome without having all of the characteristic features; in fact, it would be exceedingly rare for any one individual to have every known trait of FG Syndrome.

What are the features of FG?

Some of the common features of the syndrome include poor muscle tone, chronic constipation, hearing loss, vision problems, genital abnormalities, and respiratory problems. Some children have heart defects, agenesis of the corpus collosum, and/or imperforate anus. Other features sometimes include kidney problems, a large head, broad thumbs and big toes, characteristic fingerprint patterns, webbed fingers and toes, skeletal defects (occasionally including craniosynostosis and scoliosis), and a sacral pit. Tethered (spinal) cord and Chiari I malformations (structural defects in the cerebellum) have also been found in people with the FG Syndrome.

Many individuals with FG Syndrome have a similar appearance. They may have wide set eyes, a broad nasal bridge, and low set simple ears. They tend to have an open-mouthed appearance with a thin upper lip and fuller lower lip. Their tongues often protrude slightly from their mouths. Many have cowlicks in their hair and a widow's peak hairline. Some people are so mildly affected by the FG Syndrome that physical features are not obvious to anyone but a trained geneticist.

Many children with an FG Syndrome diagnosis experience developmental delay, particularly speech delay, whether or not they are eventually diagnosed with mental retardation/intellectual disability.(This appears to be a spectrum type syndrome like autism, development is structured according to how the brain functions. A delay could be the sign of a genius or a person with unique abilities.)

What are the behaviors of a child with FG?

Individuals with FG Syndrome tend to be outgoing, talkative, and crave lots of attention. They also tend to be very gentle-spirited and are often called "mellow." However, they may be easily frustrated and are proned to prolonged temper tantrums. This frustration might be due to common traits such as obsessive/compulsive tendencies ("OCD"), sensory integration dysfunction ("SID"), lack of communication skills, ADD or a number of possible neurological issues. Some say that people with FG Syndrome display "autistic-like" behaviors. Again, this may be due to common traits such as OCD and SID. However, people with FG Syndrome are not believed to be autistic. It is important to remember that all children are unique individuals and will have their own distinct personality (and intellectual abilities, so don't limit them by the description).

Kim Peek was a very unique man. He is a prime example that people who have extraordinary abilities are very valuable to society. Some may be limited in one area, but brilliant in another. He could have worked as an expert in many different fields. I.Q. does not necessarily equate with success or ability to perform brilliantly, as I.Q. is a test of a neurotypical brain and is limited when it comes to brain structure which is different than the norm. Each person with FG Syndrome is unique and carries a set of skills which others do not have, while sometimes missing some others normally have. People with brains that are not neurotypical do not learn the same way others learn and can struggle in a school system which labels them as deficient until they figure out for themselves how they learn as my generation of autistics had to or someone shows them how to learn their own unique way. Colleges used to make exceptions for those with different ways of learning and now many who are brilliant in many ways are not able to get a college education because of required groups, etc. The disability centers at colleges are often not very receptive to people who are intelligent complaining about not wanting to work in groups. How many Einstein-like individuals is society missing out on? We should be using people with unique abilities as a resource instead of keeping them from society. It is time those who have very special abilities are integrated into the workforce and academics.

My condolences to Kim's family. Kim Peek you will be missed.

This is a video of Damiel Tammet who is a math and linguistics savant with Aspergers who went to meet Kim Peek. Naturally it was in a library.




For a more technical description of FG Syndrome:
http://www.opitznet.org/fgorphanet.html
http://www.orpha.net/data/patho/Pro/en/FGSyndrome-FRenPro1053.pdf
http://www.ncbi.nlm.nih.gov/pubmed/16691600
http://www.optimnem.co.uk/about.php

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