Asperger's Syndrome

[pagandeva2000]

I was watching a documentary about a woman who filmed her brother's development from birth who was diagnosed with Asperger's when he was 20 years old. This was a personal perspective. I had read about this before, but am trying to get the jist of exactly what this disorder is. I know that it is sort of a 'spin-off' of autism; but is it that these people have fixations on certain things such as television shows, trains (or whatever), and are unable to pick up on non-verbal communication? And that they act inappropriately by saying or doing things that are not socially acceptable?

This inquiring mind wishes to comprehend...

[rn/writer, RN]

I watched the show, Today's Man, about Nicky Gottlieb. What a fascinating peek into this family's life. It had an intimacy that might not have been possible had the story not been told by Nicky's sister Lizzie. An interesting bit of trivia. Maria Tucci, Nicky and Lizzie's mother, is a well-known character actress. When I was watching the program, I thought she looked like someone from Law & Order. Turns out that's exactly where I recognized her from.

Here is a link to an article about the program.

http://nymag.com/news/intelligencer/42619/

If you Google Today's Man and Gottlieb, there are many hits.

On the personal side, I have a son whom we took as a foster child at age five and adopted when he was eight. In addition to many Asperger's traits, we believe he has something called a non-verbal learning disorder. IMO, this is a poor label for the condition as it suggests that he is non-verbal or that he struggles in the area of speech. Nothing could be further from the truth. He is exceedingly verbal with an outstanding vocabulary and the ability to express himself well in writing. He taught himself to read shortly after we got him. None of that coaxing with flashcards and phonics for him. He just seemed to awake one day able to read simple words and he took off from there.

On the down side, he has sensory issues. He hated scratchy clothing and used to beg to be taken out of school assemblies because the noise hurt his ears. He does poorly with managing anxiety and change. Relationships have never been easy because he lacks the ability to gauge the effect of his words and actions on others if they are at all subtle. He always excelled at parallel play but interaction was painful (and painful for us to watch).

Non-verbal learning disorder (NVLD) is a condition in which the ability to process all those nifty non-verbal cues like body language, tone of voice, facial expression, etc. is severely limited or missing entirely. Since so much of human interaction relies on the non-verbal, people who have this limitation suffer greatly. It's like trying to play Monopoly without the rules.

Because Asperger's folks have difficulty processing that which is fluid and changeable, they often have problems extrapolating data from one situation and applying it to the next. A rule is a rule is a rule, and good luck explaining that there are such wiggly things as individual preferences, elastic guidelines, and extenuating circumstances. This inflexibility is less stubbornness than the effort to make sense out of a world that seems tricky and arbitrary. It is also why AS folks do so well in areas like history and the sciences where objective data makes up the bulk of the information.

For severe AS people, everyday living is filled with danger. According to others, they are always doing something wrong, something socially awkward or even hazardous. Little wonder then, that many retreat to the parts of their brains that function well. The combination of superior ability (in specific areas) and obsessional attraction lead to folks that can perform with amazing (if limited) capacity.

Because this is a condition rather than a disease, and because it isn't a progressive disorder, and because many AS people find ways to carve out a satisfying life (usually with much help from family and friends), AS is being looked at more and more as a trait or collection of traits rather than a malady, per se. If you look at it as a form of social, relational, and adaptational blindness, you can see how those who have it would rather be thought of as people who need to find ways to compensate for their limitations and who would like to be appreciated for their positive attributes rather than as cripples suffering from an affliction.

This is one reason why it's important not to refer to them as "Aspergers." They are people who have AS or Asperger's people or something similar. They shouldn't even be called Asperger's patients apart from circumstances that involve some aspect of treatment. To refer to them just as "Aspergers" limits their identity to their condition. It is comparable to calling a sightless person a "blind."

Our son is not nearly as severe as Nicky Gottlieb, but even so, he often feels uncomfortable and off kilter. He has done well in jobs that do not involve a lot of decision making or customer service (he either gets irritated or wants to give away the store out of misguided compassion).

Someone mentioned a relative who showed little emotion. This is one face of AS. But what I have seen with our son and others (including Nicky Gottlieb) are people who have strong emotions coupled with a tendency to show them inappropriately. They can frighten others with the intensity of their feelings, and may end up frustrated because they don't have the skills or the necessary outlets to discharge their emotions safely. They often don't have the filtering system that helps the rest of us keep from showing improper anger or attraction or blurting out our private thoughts. This can result in conflict ranging from social awkwardness and rejection to disciplinary actions all the way to legal problems. Affection + obsession = stalking.

Someone else mentioned the author Temple Grandin. She has written several books that give an extremely insightful look into the autistic brain. Because she is "disconnected" in the "what will people think of me" realm, she writes with an honesty that is touching and troubling at the same time.

Another wonderful book is Finding Ben, by Barbara LaSalle. She shares her struggles as an AS parent and the constant pull between improvement and acceptance in her son's life. Another candid account that ends with comments from the adult Ben.

Most of the autistic/AS people I have known have to deal constantly with loneliness and frustration. And yet, many of the members of this community have a persistence and a drive that keeps them trying to "get it right." A fair number are also quite sensitive and care deeply that their condition is off-putting to other people. They are usually exceedingly grateful for those who are willing to be patient with them and loyal to them as they navigate a world they will never fully understand. They are often quite brave and deserving of our deepest respect.

[suzi-Q]

Forgot, another good movie...

Mozart and the Whale.Two people with asperger fall in love and get married.

Based on a true story. Very good.

[jax2130]

check out the BBC site....re: bill gates. i don't know for a fact that he's been diagnosed, so i cannot assume. i just know what i've heard.

http://news.bbc.co.uk/1/hi/magazine/3766697.stm

[lpnstudentin2010, LPN]

The Curious Incident of the Dog in the Night-time

is a really good book. it is about a boy with aspergers.

here is what amazon.com says about it

"Amazon.com

Mark Haddon's bitterly funny debut novel, The Curious Incident of the Dog in the Night-Time, is a murder mystery of sorts--one told by an autistic version of Adrian Mole. Fifteen-year-old Christopher John Francis Boone is mathematically gifted and socially hopeless, raised in a working-class home by parents who can barely cope with their child's quirks. He takes everything that he sees (or is told) at face value, and is unable to sort out the strange behavior of his elders and peers. Late one night, Christopher comes across his neighbor's poodle, Wellington, impaled on a garden fork. Wellington's owner finds him cradling her dead dog in his arms, and has him arrested. After spending a night in jail, Christopher resolves--against the objection of his father and neighbors--to discover just who has murdered Wellington. He is encouraged by Siobhan, a social worker at his school, to write a book about his investigations, and the result--quirkily illustrated, with each chapter given its own prime number--is The Curious Incident of the Dog in the Night-Time.

Haddon's novel is a startling performance. This is the sort of book that could turn condescending, or exploitative, or overly sentimental, or grossly tasteless very easily, but Haddon navigates those dangers with a sureness of touch that is extremely rare among first-time novelists. The Curious Incident of the Dog in the Night-Time is original, clever, and genuinely moving: this one is a must-read. --Jack Illingworth, Amazon.ca --This text refers to an out of print or unavailable edition of this title."

[EmmaG, RN]

Someone else mentioned the author Temple Grandin. She has written several books that give an extremely insightful look into the autistic brain. Because she is "disconnected" in the "what will people think of me" realm, she writes with an honesty that is touching and troubling at the same time.

I highly recommend her book "Thinking in Pictures". She's an amazing woman.

http://www.templegrandin.com/

[pagandeva2000, LPN]

Again, I have to thank everyone here of their input on making this disorder easier to comprehend. I am enjoying the web sites and interaction. Thank goodness for this site!