"Inside the autistic mind" - TIME

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The road to Hannah's mind opened a few days before her 13th birthday.
Her parents, therapists, nutritionists and teachers had spent years preparing the way. They had moved mountains to improve her sense of balance, her sensory perception and her overall health. They sent in truckloads of occupational and physical therapy and emotional support. But it wasn't until the fall of 2005 that traffic finally began to flow in the other direction. Hannah, whose speech was limited to snatches of songs, echoed dialogue and unintelligible utterances, is profoundly autistic, and doctors thought she was most likely retarded. But on that October day, after she was introduced to the use of a specialized computer keyboard, Hannah proved them wrong. "Is there anything you'd like to say, Hannah?" asked Marilyn Chadwick, director of training at the Facilitated Communication Institute at Syracuse University.

With Chadwick helping to stabilize her right wrist and her mother watching, a girl thought to be incapable of learning to read or write slowly typed, "I love Mom."
A year and a half later, Hannah sits with her tutor at a small computer desk in her suburban home outside New York City. Facilitated communication is controversial (critics complain that it's often the facilitator who is really communicating), but it has clearly turned Hannah's life around. Since her breakthrough, she no longer spends much of her day watching Sesame Street and Blue's Clues. Instead, she is working her way through high school biology, algebra and ancient history. "It became obvious fairly quickly that she already knew a lot besides how to read," says her tutor, Tonette Jacob.

During the silent years, it seems, Hannah was soaking up vast storehouses of information. The girl without language had an extensive vocabulary, a sense of humor and some unusual gifts. One day, when Jacob presented her with a page of 30 or so math problems, Hannah took one look, then typed all 30 answers. Stunned, Jacob asked, "Do you have a photographic memory?" Hannah typed "Yes."

Like many people with autism, Hannah is so acutely sensitive to sound that she'll catch every word of a conversation occurring elsewhere in the house, which may account for much of her knowledge. She is also hypersensitive to visual input. Gazing directly at things is difficult, so she often relies on her almost preternatural peripheral vision. Hannah's newfound ability to communicate has enabled her intellect to flower, but it also has a dark side: she has become painfully aware of her own autism. Of this, she writes, "Reality hurts."...

http://www.time.com/time/magazine/article/0,9171,1191462,00.html

[ayeshahaqqiqa]

1. I have a friend on the cutting edge of treatment for autistic children

She says that each autistic kid varies in what isn't working in their systems. One of my friends has a son who is mildly autistic. After taking him to my doctor friend, they found a diet and supplement regemine that would help. The young man started to have feelings, became a greeter at his church at his own volition, went from failing grades to A and B grades and school, started growing (he had stopped growing some time ago) and became, in his own words, "happy".

[Demeter]

2. Thanks for The Posting--Very Useful!

[Mr_Spock]

3. It's great to read about people breaking out of their shell

That specialized keyboard sounds like it has promise - I hope it helps other kids. I'm sure at times her parents had wanted to throw in the towel - I'm sure many do - it's very satisfying to hear about a positive experience in this area.

From my own personal experience, I can so relate to the super hearing and overly sensitive vision. I used to listen to most of my parents conversations by having my bedroom door open a crack - even though they were in the kitchen that was a 40' hallway with two bends in it away. I still find some visual stimuli overwhelming.

Thanks for sharing this story...

[KingM34]

4. re: autism

I have read that the rate of autism (formerly skyrocketing) has been going down as the newer vaccines no longer use mercury. Does anyone have any information on this?

[bloom]

6. I posted this in the Health section

a little while back:

"Study links vaccines containing mercury with autism"

http://www.democraticunderground.com/discuss/duboard.php?az=show_topic&forum=222&topic_id=5604

It suggests that autism has gone down - at least some with the removal of thimerosal. If that is one of the factors - that would be the expected result. I expect that there are others.


I also posted this about Thimerosal and immune function:

http://www.democraticunderground.com/discuss/duboard.php?az=show_topic&forum=222&topic_id=5876


I think that there are multiple things that interfere with the immune system - of people who genetically are inclined to be susceptible. A lot of research has been wasted (and arguments) because some research was designed assuming that all people would react the same way.

"Lower levels of glutathione linked to autism"

http://www.democraticunderground.com/discuss/duboard.php?az=show_topic&forum=222&topic_id=1047

[KingM34]

9. muchas gracias

Thanks, that's just what I was looking for. While the benefits of vaccines have saved millions of lives, it frustrates me as a parent that I didn't have all the information at hand before making decisions about vaccinating my children. I probably would have waited until they were older on certain vaccines, so as to lower the risk. Fortunately, everything turned out fine in my case.

[goddess40]

7. I read there is now an increase in China

since we sent them our mercury preserved vaccines. I gave the article to my son's physiologist who has since passed away. Both of my son's have Nonverbal Learning Disorder (NLD), a mild form of Autism, and the younger who has it the worst had more shots in the first few months of life.

Once this subject gets brought up the naysayers descend touting studies that say it isn't true, but many are done by "interested parties" so are suspect. Actions speak louder then words and the fact the the numbers decreased with the removal of the mercury doesn't speak as loudly as the republicans declaring lawsuits for injury by vaccine illegal does.

[bloom]

10. It also mentioned in the article

"Its causes are still uncertain, as are the reasons for the rapidly rising incidence of autism in the U.S., Japan, England, Denmark and France."

I would be interesting to study the connections there.

[Mr_Spock]

11. I'm not aware of any conclusive data as of yet.

It would be nice if this helped reduce some of the environmentally induced forms of autism.

Aspergers syndrome is genetic in my family, so my daughter, for instance, already showed signs of having issues even before any vaccine was administered.

[bloom]

8. It's sad

(and happy too) - to hear about autistic children who had been thought to be retarded - but just didn't have the means to communicate.

The idea that there would have been so many who never did have the means. How frustrating that would be.


(I think there are a LOT of us - with ASD - who have found the internet to be a really great way to communicate with people).

[dipsydoodle]

5. Also check out this kid

http://www.stephenwiltshire.co.uk/index.php When he was younger they took him inside St Pauls Cathederal and he just looked at it, went away and drew all of the vaulted arches etc to such perfection that repcted architects were amazed.

And also : http://en.wikipedia.org/wiki/Daniel_Tammet
He can do mental calculations faster than you could key into a calculator.

Both of the above have had TV documentaries made about them.

[Lydia Leftcoast]

12. Doubt has been cast on facilitated communication

I remember seeing a documentary years ago in which an autistic girl was unable to answer questions about an event that her facilitator had not witnessed. It also noted that the kids were doing one-finger typing without looking at the keyboard (as opposed to touch typing, which requires you to keep your both hands in the position marked by the ridges on the keys. Try touch-typing with one finger. I've been touch-typing the regular way for 35 years, and I just tried one-finger touch typing with ridiculous results.) It also looked to me as if the facilitators were doing more than just "supporting" the kids' hands and were actually moving them toward the correct keys.

The investigator theorized that the facilitators were functioning like the people who unconsciously manipulate a Ouija board.

Now there are some autistic kids who have made breakthroughs, but they have done so without the aid of facilitated communication. (Temple Grandin, the animal behavior expert, comes to mind.)

As for the mercury/autism connection, autism is increasing even in countries that don't use mercury in vaccines.

But do you know what IS increasing in China and is ubiquitous in all the developed countries? Autombile exhaust.

[bloom]

13. There could also be some "facilitators"

who want it to work and go overboard - I don't think that that means it never works.



With causes - seems like now would be the time to see - what countries/areas have it - what ones don't. What they share/what they don't. It's just going to get harder to do studies - the more countries all become the same. I expect there are multiple causes - all part of our "lifestyle" one way or another - whether it's vaccines, coal emissions, mercury in fish, and other toxins that are similar in nature, etc.


Schizophrenia is another thing that some countries have/other don't or not so much.

http://www.democraticunderground.com/discuss/duboard.php?az=show_topic&forum=222&topic_id=7277

[bloom]

14. I have always done this - looking at the mouths of speakers

"Autistic people have been shown to use their brains in unusual ways: they memorize alphabet characters in a part of the brain that ordinarily processes shapes. They tend to use the visual centers in the back of the brain for tasks usually handled by the prefrontal cortex. They often look at the mouth instead of the eyes of someone who is speaking."


I prefer to look at a person's mouth when they talk - It seems easier to hear. I was never comfortable with the pressure to "look at people's eyes when they speak". As if it's so terrible not to. As if the eyes are telling you more than the mouth is.

[TrogL]

18. You're lip-reading

I do the same thing.

I can't hear speech if there's any sort of background noise - it's a sensory integration issue. Hence I tend to lip-read all the time so that if there is a background noise, I've already caught the beginning of a word.

[woo me with science]

15. Sorry, but this is garbage.

There is NO good evidence that facilitated communication works. Every single well-designed study has shown that the miraculous improvements claimed for this approach completely disappear when the facilitator no longer is able to hear or see the questions being asked.

Shame on the mainstream media that keeps promoting this voodoo intervention without really looking into the research.

[bloom]

16. That's not actually the main thing that the article is about.

It's one thing.

And like I said earlier - I think that it does work in some cases. I don't know why it's so important to some people to think it never works.

Post your studies if you have them. You don't believe the article is true - but I'm not believing you on your say so.


P.S. If all the critics are like these critics - it sounds like they are clueless where it comes to autism:

"FC proponents argue that in most of the negative studies, the laboratory setting was itself the confounding variable: i.e., communication is inherently very difficult for autistic people, so they can't necessarily be expected to replicate their successes under unfamiliar or even hostile conditions (e.g., those in which continuance of access to FC was contingent upon passing or failing the test).... Critics of FC question why people who can give speeches in public and go to college cannot answer a series of simple questions under controlled conditions."

http://en.wikipedia.org/wiki/Facilitated_communication

My college age daughter, for instance, cannot write under "hostile" conditions. For her - that can mean under any pressure - even being in a classroom can be "hostile" as far she is concerned.

So if the studies are not taking that into account - then they are invalid.

[woo me with science]

17. I'm glad to know

that the article is not just about FC. That would have been really depressing.

As for the research, there have been several good meta-analyses of the FC research that have paid close attention to methodology and study design, and all of the conclusions are the same: FC is myth. If you are looking at research that claims to support FC, you need to find these meta studies, because they will clarify the difference between good research and junk science that passes for research too often. Please don't ask me to do your research for you.

People can "think" that FC works they like, just as people can "believe" that crystals promote healing, and astrology predicts personality, and homeopathy cures illness. However, that kind of belief is exactly how myths get spread. it is important to distinguish between solid research and junk science.

[bloom]

19. You're the one making the claim

From what I read - there are differing opinions and few people think that it absolutely doesn't work.

[woo me with science]

20. No, you are the one expressing belief

in an intervention that has no scientific support behind it. And your demand illustrates your lack of understanding of the scientific method. It is not the role of those who disbelieve in astrology, homeopathy, or facilitated communication to prove that it DOESN'T work, because science does not prove a negative hypothesis. Those who believe must show evidence that it DOES work. Controlled studies of FC have consistently failed to provide such evidence.

Of course there are differing opinions. Lots of people are of the opinion that walking under a ladder brings you bad luck, too, but that doesn't make it true.