Autism

[Myrtle]

El D……

My oldest son was diagnosed as autistic in 1972 as a 4 year old child by, at the time, two of the supposed foremost authorities on autism, Children’s Hospital in Boston, and the Hitchcock Center at Dartmouth College in NH.

They both recommended that he be institutionalized. My responses to them would be edited by the censor software here.

We searched for alternative treatment and found an experimental behavioral modification therapy program in which we enrolled him. Within 8 weeks a child who was non-verbal, not toilet trained, head-banging & swaying and constantly running away was speaking full sentences, was using the bathroom, was no longer throwing temper tantrums or running away. It was a truly amazing transformation; however it was just the beginning of an incredibly painful and difficult journey for him, and all of us who love him.

A book could be written about his journey, but I won’t bore anyone with all the details other than state that it was punctuated with episodes of psychotic breaks, hospitalization, self-mutilation and alcoholism as we enrolled him in special education classes in an attempt to “mainstream” him.

I will note to all that you have never seen true cruelty until you experienced how a child such as this can be taunted, humiliated and made fun of by supposed well-intentioned adults, but especially by his own contemporaries.

Along the way he developed some idiot-savant type qualities. Give him a list of 6 digit numbers and ask him to add them up, and he’d give you the answer almost before you had a chance to ask him. He also had an ability to handle bees & wasps without ever getting bitten that was amazing; it was almost as if he could actually communicate with them.

He learned to read & write, but developing social skills was painfully slow and difficult for him.

He studied for 5 years to get his drivers license. He passed the test without a single error and can quote the rules of the road to you verbatim. He works part time, but has difficulty in holding any job for a period of time. He owns his own car and pays his own way. He reads a newspaper every day, and is much more familiar with both local and national issues than most people I know.

If you saw him walking down the street, you could easily mistake him for a professional wrestler; 6’1” 240 lbs., crew-cut with a goatee. Many would view him as physically intimidating, but he is a truly gentle man, and his smile and laugh reflects that fact.

He will turn 39 this summer, and if you were to meet him today, it would take you a while to see that he is “different”. He has never been able to develop the complex conceptual and rationalization skills that most adults possess, but he appears to have the ability to see through issues and get right to the heart of any matter, whether it be talking about the war in Iraq and crime in the streets.

When I think back to the dark days of his early childhood, it is amazing that he has come as far as he has. He did not graduate from high school because of his affliction, but he still, to this day, goes to GED classes so that he can one day get his diploma.

He has faced so many challenges and obstacles in his life, and he just keeps working his way through them with stoic determination.

Every great once in a while, he will share with us one of his memories from the “dark days”, almost as if he’s trying to give us a clue as to what it was really like for him to make that journey.

Life has been challenging for my son. People talk all the time about what courage and bravery is.

He is truly one of the most courageous men that I have ever known.

[jba]

^^^^

great post, thanks

[Roan]

I'm a 4th year medical student and although I'm not going into child psych, I always thought that autism was one of the most interesting topics in medicine. It really sits at this fascinating nexus of scientific, emotional, and societal issues.

During my 3rd year, I worked with an autism expert for a few days and learned a lot of neat stuff.

1) Incidence:
The diagnosis of autism is a tricky phenomenon because unlike other medical illnesses there are much fewer "rules" to follow in the diagnosis. A bone is either broken or it's not, autism is not so easy to categorize. Also, these diagnosis are trying to be made in 1/2/3 year olds. The spectrum of what is normal behavior in a kid that age is incredibly wide.

But the most interesting fact was that if you were to add together the percentage of kids over the last 20 years that have been diagnosed with autism to the percentage that have been diagnosed with mental retardation (MR) that percentage has remained constant. What has changed is the individual percentages of autism vs. MR. This is amazing because it suggests that the rise in incidence of autism is at least in part a function of a shift in diagnostic preferences. This makes sense, as there are many pressures on practitioners - 20 years ago there was no social support for a kid with autism and thus an MR diagnosis would at least offer some support in terms of school help etc.

2) Vaccines:
He was unaware of any link between autism and vaccines. At all.

3) But the part I thought was most interesting was a study where they described several "life situations" to autistic folks and "normal" people and asked them for their responses. I'll paraphrase, but the gist is there. For instance:

You are getting on an elevator in a building. The door closes and the guy next to you says "beautiful day huh?"

A- Thats unusual, the elevator door is closed, I can't comment on the weather right now.

NML - Normal Small talk.

You are in a park and there is a young mom with 2 young kids, one of whom is in a stroller. She and the other kid are playing with a ball a little ways away from the stroller. The kid in the stroller starts crying, but the mom can't here the kid as she is too far away. What do you do?

A-Pick up the kid and comfort it, I've seen this done before and thats what the mom would want.

NML - Tell the mom her kid is crying.

Oversimplified for sure, but an interesting insight into their views on social norms and appropriate behavior etc.

4) I would also recommend The Curious Incident. But more for the effect on his family than because I think the kid is an extremely accurate portrayal of autism.

[Mermade]

I remember watching a documentary years and years ago (maybe 20+ years back) about the purported technique of assisting severly autistic individuals to communicate by steadying their hands at a computer keyboard. I remember some of the individuals wrote heart-wrenching poems, some were even published. They wrote very sophisticated letters expressing emotion towards their parents. The first time parents had heard "I love you," but then too there started this wave of sexual abuse allegations. The autistic children started accusing various individuals of improper sexual contact, sometimes giving quite graphic descriptions.

In the end, it was discovered that the assistants, the adults who were steadying the hand of the autistic individuals were subconsciously leading the hand. In tests where the assistant was not allowed to view the screen, the autistic individuals weren't able to construct comprehensible words or sentences. It was incredibly sad, and I believe spoke more about the general human psyche than anything else. So odd to see what the assistants subconsciously were communicating.

[Roan]

The guy I worked with saw this kid as a patient when he was 3 and 4 and still has some of his doodles from way back when.

Jonathan Lerman

considering how autistism often results in considerable emotional difficulties, i think it's amazing how his art reflects feelings so well

[fifield]

I have a female cousin in her 20s who's autistic. She constantly gets made fun of at our family reunions and is brought up as a freak and so weird fairly regularly when my family's talking about theirs. Terrible, I know.

She never makes eye contact and freaks out if she can't 'go jump' - most reunions she spends half the day jumping on a trampoline - and she used to ask for people's phone numbers, and would remember people by it even years later. Several funny stories from her doing this.

But most recently, she's been into birthdays. Her parents say she's memorized 'in the thousands' of people's birthdays and that's her socialization with people, she'll ask your birthday, tell you everyone she knows who has that same birthday, and move on. Like it was nothing.

Autism must suck, but certain aspects of it like this fascinate me.

[MoistToes]

Trying to understand people, especially those that are different and have challenges communicating with the general population, is a worthy and noble goal.

Try to imagine attempting to talk and the words simply not coming out and then trying to write the words down and you hand over the paper to someone and have them not be able to read it. Imagine your whole life is like that. Not only may you not be able to say what you like but it might come out wrong when you attempt it. Your favorite color may be blue but the word "Yellow" may come out of your mouth.

It is impossible to fathom what some people endure...

Many times I've been and seen people shrink away from individuals with Autism or sneer, be afraid, etc...

Helping people become aware of understanding other people with unique challenges was a great idea for a post El Diablo.

Thank you.

[Voltaire]

Thanks Myrtle. Just a great post.

[ozyman]

[ QUOTE ]
I've recently read a couple of articles on Autism in National Geographic and I believe Discovery Magazine. It's really alarming to see the unexplained growth in Autism and actually makes me weary of having children.



here is a USA today article, obv not as good as the ones found in more in depth publications



Link

Here is a movie about Autism made by Don Imus who along with his wife has been very active in trying to get more funds directed towards research

Link

[/ QUOTE ]

Time Magazine had an article earlier this year on the rise of autism and a book about it called
"In Unstrange Minds: Remapping the World of Autism" by Roy Richard Grinker. It gave some pretty good background on the increase in the diagnosis.
Is the Autism Epidemic a Myth?

[nolanfan34]

[ QUOTE ]
Asperger's is one of the more prevelant forms and it also is one of the most functional forms. That's probably part of the reason.

[/ QUOTE ]

My main experience with autism is through Asperger's as well. My wife's cousin has it.

I had never heard of it when I first met him. I guess when he was little, they first made the diagnosis after he wouldn't stop acting out in school. When he was in preschool, he would try to force the teacher to stop reading a book if it was one that he had heard before. Basically, after the first word once he recognized it he would freak out - he basically had already stored that knowledge in his head and was ready for something else. Which of course is different than most children, who want to hear the same story over and over.

At most family gatherings he generally will be reading a book, or pacing around somewhere in the house by himself. Doesn't interact much with the other cousins at all, and took a long time to warm up to me, although we'll chat now about things like comic books, which he's really into.

For school he mostly went to special education schools, but in the past couple of years he's recently started attending the public high school that he brothers attend, and he goes to regular classes. His dad said that the main challenge in the regular classes has been teaching him to not blurt out the answers to the teacher's questions - he knows all of them and has a hard time letting others respond first. Especially in math and science classes, where he works at a college level.

Socially he still has challenges, but his parents say that attending the public high school has been a big boost to his confidence a bit. Apparently he absolutely won't let either of his parents do any clothes shopping for him - so they send him out with his brothers to shop, because he'll buy anything that they deem as cool. They said that's helped him to fit in with the high school crowd.

Overall he's a really fascinating kid, and I'm really interested to see what he does when he finishes high school. His parents fully expect that he'll live with them for the rest of his life, and I don't think they'd want it any other way.