articles on autism in The New York Times

[maomao]

In the past week, two articles have appeared in the New York Times about autism.

Here's the first:

In Autism, New Goal Is Finding It Soon Enough to Fight It
By ANAHAD O'CONNOR
Published: December 14, 2004

SEATTLE - Sitting in a small evaluation room at the University of Washington, apprehension written on her face, Christa Zamora turned her eyes toward her son Connor and contemplated his future. A talkative and animated 2-year-old, Connor appears normal, Ms. Zamora said, but it is too soon to be certain. Doctors diagnosed autism in her older son, Cameron, just before he turned 3. And with Connor, who is also at risk for developing the devastating neurological disorder, which runs in families, she has decided to be proactive, enrolling him in an early diagnosis study for children as young as 16 months.

"I'm very concerned," said Ms. Zamora, who is also worried about her third child, a boy due in February. "Connor seems to be past the danger zone. But Cameron repeats himself a lot, and sometimes I see Connor doing the very same things."

Across the country, thousands of toddlers like Connor are joining studies that could signal new hope for a baffling childhood disorder. For years, autism was rarely noticed before the age of 2, its symptoms overlooked by busy parents or so subtle that pediatricians missed them. According to federal figures, only a third of the 6-year-olds who were receiving treatment for autism in 2002 had been identified by age 4.

But in the last two years much has changed. Propelled by an explosion of public awareness and growing evidence that early treatment with behavioral therapy can improve a child's chances, scientists have set out to diagnose the disorder as early as possible, and slowly, more children with autism are being identified before they turn 2. Already, the average age of diagnosis in Britain has tumbled from roughly 43 months to 38 months or younger in only a few years, a pattern experts see emerging in the United States. And studies now under way could sharply alter the landscape of early detection by allowing physicians to routinely screen children before age 2, perhaps even in infancy.

"Part of it is that parents are more interested, and that pediatricians are getting a lot more sophisticated at detecting it," said Dr. Fred Volkmar, a professor of child psychiatry at Yale. "As these things have come together, there's no question we're seeing a lot more parents who are coming forward around the country with younger and younger children."

Autism isolates, robbing those afflicted of their ability to communicate or to grasp even basic social cues. Human faces, awash in meaning to most people, are inscrutable to people with autism; many cannot look another person in the eye. But behavioral therapy is one bridge to the outside world, and while experts say it can make a difference at any age, almost all agree that it has the largest effect on a child's language, social development and I.Q. when started before children turn 4.

"Intervention should start before the age of 3, and certainly by the age of 4," said Dr. Deborah Fein, a professor of psychology at the University of Connecticut. "After a certain point, you can still teach an autistic child certain things, ameliorate destructive behaviors, but you're not really going to change the developmental pathway that they're on."

The goal now, experts say, is to augment screening techniques so cases no longer elude them as the window for intervention narrows.

At the University of Washington and elsewhere, researchers are experimenting with a routine test that can flag children by 18 months, the earliest point for reliably identifying the disorder, many experts contend. It is also early enough for therapists to intervene.

At the same time, other researchers see promise in more sophisticated diagnostic tools - devices that can measure brain and behavioral responses to the sound of a mother's voice, or genetic or biological markers that can be detected in infancy.

"The goal is to be able to identify these kids at birth," said Dr. Geraldine Dawson, director of the University of Washington's autism center. "Until fairly recently, we hadn't really defined the very early symptoms of autism. But in the last several years, research has identified the behaviors you can see in a child as young as 12 months."

[maomao]

Here's the second article from The New York Times:

Asperger's syndrome, was How About Not 'Curing' Us, Some Autistics Are Pleading
By AMY HARMON
Published: December 20, 2004

OICEVILLE, N.Y. - Jack Thomas, a 10th grader at a school for autistic teenagers and an expert on the nation's roadways, tore himself away from his satellite map one recent recess period to critique a television program about the search for a cure for autism. "We don't have a disease," said Jack, echoing the opinion of the other 15 boys at the experimental Aspie school here in the Catskills. "So we can't be 'cured.' This is just the way we are."

From behind his GameBoy, Justin Mulvaney, another 10th grader, objected to the program's description of people "suffering" from Asperger's syndrome, the form of autism he has.

"People don't suffer from Asperger's," Justin said. "They suffer because they're depressed from being left out and beat up all the time."

That, at least, was what happened to these students at mainstream schools before they found refuge here.

But unlike many programs for autistics, this school's program does not try to expunge the odd social behaviors that often make life so difficult for them. Its unconventional aim is to teach students that it is O.K. to "act autistic" and also how to get by in a world where it is not.

Trained in self-advocacy, students proudly recite the positive traits autism can confer, like the ability to develop uncanny expertise in an area of interest. This year's class includes specialists on supervolcanoes and medieval weaponry.

"Look at Jack," Justin pointed out. "He doesn't even need a map. He's like a living map."

The new program, whose name stands for Autistic Strength, Purpose and Independence in Education - and whose acronym is a short form of Asperger's - is rooted in a view of autism as an alternative form of brain wiring, with its own benefits and drawbacks, rather than a devastating disorder in need of curing.

It is a view supported by an increasingly vocal group of adult autistics, including some who cannot use speech to communicate and have been institutionalized because of their condition. But it is causing consternation among many parents whose greatest hope is to avoid that very future for their children. Many believe that intensive behavioral therapy offers the only rescue from the task of caring for unpredictable, sometimes aggressive children, whose condition can take a toll on the entire family.

The autistic activists say they want help, too, but would be far better off learning to use their autistic strengths to cope with their autistic impairments rather than pretending that either can be removed. Some autistic tics, like repetitive rocking and violent outbursts, they say, could be modulated more easily if an effort were made to understand their underlying message, rather than trying to train them away. Other traits, like difficulty with eye contact, with grasping humor or with breaking from routines, might not require such huge corrective efforts on their part if people were simply more tolerant.

Spurred by an elevated national focus on finding a cure for autism at a time when more Americans are receiving autism diagnoses than ever before - about one in 200 - a growing number of autistics are staging what they say amounts to an ad hoc human rights movement. They sell Autistic Liberation Front buttons and circulate petitions on Web sites like neurodiversity.com to "defend the dignity of autistic citizens." The Autistic Advocacy e-mail list, one of dozens that connect like-minded autistics, has attracted nearly 400 members since it started last year. "We need acceptance about who we are and the way we are," said Joe Mele, 36, who staged a protest at Jones Beach, on Long Island, while 10,000 people marched to raise money for autism research recently. "That means you have to get out of the cure mind-set." A neurological condition that can render standard forms of communication like tone of voice, facial expression and even spoken language unnatural and difficult to master, autism has traditionally been seen as a shell from which a normal child might one day emerge. But some advocates contend that autism is an integral part of their identities, much more like a skin than a shell, and not one they care to shed.

[maomao]

Oh, I hope I didn't screw it up with cutting and pasting. If I did, you should be able to find these on nytimes.com. I think you will need to register, but I think it's free of charge.

[expatkat]

That's great that you posted those, maomao. I was thinking of posting them myself, but wasn't sure how to get around the fact that you have to register in order to read the articles. (Cutting and pasting was a good idea!) I think both articles might be a bit longer than what you managed to copy on here, maomao, so people who are interested in the full version might try this link and yes, you will need to register, but maomao's right in saying it's free.

There have been loads of articles on autism in the last months, some of which are v. interesting. Today's article, though, was deeply disturbing and I think will upset loads of parents who have been trying hard to improve their autistic children's lives with behavioral and language therapy. It seems these parents are being given yet another reason to feel guilty, or that they just can't win.

I think that once you're on the New York Times website, it shouldn't be too difficult to do a search for all other recent articles on autism.

[Jimjambells]

it's not really upsetting- many people with AS or HFA feel that way (and I know several adults who are quite vociferous in their ASness- Davros will know one person I'm thiking of).

AS/HFA is so far removed from where ds1 is that its fairly irrelevent to us. I'm certainly not trying to remove his autism (no point it's lifelong- he's autistic through and through) and I don't value him any less for being autistic- I just want to give him the skills to live as independent a life as possible. He has to be taught those skills- he doesn't just pick them up- but what we aim to do is teach him, not change him. No different from ds2 really- we just have to think a lot harder about what he needs to know and how to then teach it.

There's a very interesting book written by a non-verbal autistic adult called Jasmine Lee O'Neill called "Through the Eyes of Aliens". I don't agree with everything she says in it, but its stunning that despite being completely non-verbal she could write such a book. A real eye opener. I haven't read it for a couple of years- and last time I did ds1 we were expecting ds1 to become verbal, not sure we are anymore so I should read it again.

Anyway had a nice surprise today - his latest SALT report has assessed his understanding as being at a 2 to 3 key word level. First one that hasn't said one key word- so we're moving in the right direction.

[Davrosthesnowwoman]

Anyone who wants to get news items on autism from around the world should subscribe to the Schafer Autism Report, visit lists.envirolink.org/mailman/listinfo/sareport

This militant movement is a bit worrying but I have no problem with some of their views, that all individuals deserve respect, that lots of the manifestations of autism should be accepted and can't be stamped out and, even if they could be, shouldn't be. However, these vocal and articulate people do not represent children like my DS, partly because they can do something he can't do - TALK - and they are using that skill to undermine his and others' chances of getting something they have, limited independence. The spectrum is very wide and the militant Aspies/HFAs are on a very small part of it and many people in the same place on the spectrum do not share their views. Furthermore, their very "disorder" makes it less likely that they can fairly represent anyone but themselves. They are also ignoring the very high number of indivuals with autism who have a comorbidity with learning disability or mental retardation as it is still called technically. Many people with ASD will need to be "cared for" for the rest of their lives and will need a high level of supervision and support, anything they can learn to make this caring less intrusive and pervasive the better surely? The example of ABA is completely incorrect and misleading. ABA is concerned entirely with trying to find out the cause/function of a behaviour and does not seek to just stamp out behaviours, that would be ridiculous and totally unrealistic.
The person Jimjams refers to, and others like him, are treated with more tolerance than they are able to reciprocate, often by the very sort of parents who are being portrayed as intolerant.

[Jimjambells]

yes agree davros. I remember being told about one argument between the mother of a non-verbal child and a militant AS adult. The AS adult said something along the lines "and what exactly do you want him to be like when he's an adult" and the mother replied "I want him to be like you" (as in autistic but living independently, able to represent yourself etc).

I know lots of adult Aspies who aren't at all like this though. I did know you would know who I was talking about

[Davros]

More of the same coming! Got this info from the NAS whose Chief Exec has also been interviewed.

A feature should be appearing in the Sunday Telegraph this weekend on p3 if all goes to plan news permitting.

The hook of the feature will focus on a US organisation/activist group called The Autistic Liberation Front - see link althouse.blogspot.com/2004/12/autistic-liberation-front.html

They are a 'right on' activist group for people with autism, who want to celebrate autism as opposed to find cures and intervention. They have a range of products and merchandise for sale, mouse mats, mugs and T-shirts - all very pro-autism and anti-intervention.

[Davros]

Link to Telegraph article:

news.telegraph.co.uk/news/main.jhtml?xml=/news/2005/01/09/nalf09.xml