自閉症老了之後
美國國家廣播電台 NPR National Public Radio
最近兩年對自閉症的報導。
他們擔心，成年後的自閉症者要如何走繼續下去的人生路，在父母老了之後？
The federal law that governs special education lays out the goals pretty clearly: Students are entitled to an appropriate public education in the least restrictive environment.
But some parents of children with autism feel their local public schools aren't meeting their kids' needs. And with autism diagnoses rising, new schools are emerging specifically for autistic children.
Some parents see these specialized schools as a godsend. For others, they raise a new set of questions.
Carson Ellis' son, Hank, is autistic. He spent kindergarten in a special education classroom at his local public school in Portland, Ore. But Ellis says that while school administrators said it was inclusive, she found the special education classroom was quite segregated.
"We went on a field trip, and there were name tags for all the kids, but no name tags for the special ed kids," Ellis remembers. "And another time we went to some kind of art studio, and they had art supply packets, but they had forgotten to get enough for the special ed kids. So it was stuff like that."
Ellis says the teacher herself was very kind and caring, but that given the school's overall attitude and resources, Hank wasn't really a part of things. And when it came to an appropriate curriculum? Ellis says that at the age of 5, her son was reading at an eighth-grade level.
"He got his 'talented and gifted' designation, and I was like, 'OK! Sign me up for the awesome advanced reading group,' " Ellis says. "And they were like, 'That doesn't exist.' "
Ellis ended up feeling like there were a lot of missed opportunities, and her son was "really unhappy," she says. "There was a point where I felt like making him feel like a worthwhile kid trumped everything else."
Creating A Safe — Yet Challenging — Space For Autistic Kids
Now, Hank attends Victory Academy, just south of Portland. In some ways, it seems like a typical private school — one with small classrooms where kids study everything from math to music.
But at Victory, all of the students are on the autism spectrum.
Tricia Hasbrook founded Victory Academy after struggling to find a good fit for her own autistic son. She says teaching autistic students is about breaking down tasks, providing positive reinforcement and following specific instructional strategies.
"The world around them might feel very chaotic," Hasbrook says. "So we teach them sensory regulation skills and social cognition, so that they can have purposeful relationships throughout their life."
Hasbrook acknowledges that a lot of these kids have nontypical behaviors or ways of interacting with the world that aren't going to change. But the teachers meet the kids where they are and give them the tools to pursue what they want out of life.
"They get an environment that they feel is safe — sometimes to act out, or to be their very best selves, and shine here," Hasbrook says. "I think that a separate school for children with autism is an amazing thing."
'Segregated Schools Lead To Segregated Societies'
“ I would never ask families to make a political statement with their children's future. I spent time in public schools where I was bullied and not challenged and underestimated. I know we have a really serious problem.
Ari Ne'eman, who heads the Autistic Self Advocacy Network, disagrees. "Segregated schools lead to segregated societies," says Ne'eman, who is also a member of the National Council on Disability. "Inclusive schools give us the opportunity for inclusive societies."
Ne'eman says that many segregated schools and classrooms — like the ones he attended — have what he calls a culture of low expectations. But even ones that don't can still create hurdles, he says.
"If we have an environment in which autistic people are over there, in that other classroom, in that other environment, it really sends a very clear message that we are not a part of your society," he says.
But Ne'eman acknowledges that parents often face a tough choice between the world they want to create and the world their kids may be living in.
"I would never ask families to make a political statement with their children's future," Ne'eman says. "I spent time in public schools where I was bullied and not challenged and underestimated. I know we have a really serious problem."
Another Answer: 'Inclusive Education'
Wayne Sailor, director of the SWIFT (Schoolwide Integrated Framework for Transformation) Center, funded by the Department of Education, is working on a new model of inclusive education — one where special education and general education teachers work together as a team.
In a fully integrated school, Sailor says, kids with autism may have a very complex schedule to help in meeting their specific needs. And all students get different tiers of assistance — whether it's a bit of personal attention, or engaging with the whole class or helping the student next to them.
"The important point is kids move fluidly back and forth through the tiers as needed," Sailor says. That sort of fluid inclusion model undeniably takes coordination — but not necessarily more resources, Swift says. And so far, the outcomes look pretty positive for all students.
But for parents like Carson Ellis, who can't find a truly inclusive approach nearby, autism-only schools can feel more accepting. Ellis says Hank likes having classmates who are a lot like him. But that's not why the school works, she says.
"There's a really kind of special degree of empathy and patience and love — I will even say it, love — and innovation," she says.
For a school like Victory Academy, innovation, empathy and love are part of the job. And advocates of inclusive education hope that when classrooms have all kinds of kids working together — autistic and not — that innovation, empathy and love will become a part of daily life.
20140412
ＮＰＲ自閉症牽連更廣，與族群因素相同，牽連甚廣
Children have tantrums. They yell and grab at things that
they should ask for nicely. And when a child has autism, like my son, these
episodes can be epic: toys hurled across a room, screaming fits that last
hours, and flurries of hitting that get triggered by even a minor change in a
routine.But when my son screams at his therapist and tries to snatch Magic Markers from his hands, I gasp. I think of Trayvon Martin.
I'm black, and so is my son. And even though at that moment he's just 5 years old, I know that an angry swipe at a white man's hands could get him killed one day.
At some of the toughest moments with my son, this therapist has been a sanity saver ... for me. A middle-aged white man, he has the warm, easy manner of everyone's favorite uncle. For my son, he has compassion and endless patience. But at times he's told my son NOT to do something, and my son has not only done it; he's also gotten physical.
My instinct is to snatch my son up and hit him with everything I have. But I don't. I watch while his therapist waits for him to get the hollering and grabbing out of his system. After 10 minutes, it all quiets down. But I'm still holding my breath.
Generations of black parents have had to have the talk with our sons, the explanation that while they have a right to do everything a white kid does, exercising those rights under the wrong circumstances could be fatal. And a transgression like the one he's committed against his doctor — one that might get a white child arrested — could get him killed. It's hard to explain, and hard for many boys to understand at first.
My kid still doesn't quite understand that he's expected to answer to his own name or deal with a broken toy without screaming. These are not social graces; these are skills that most kids develop in their early years with no special training: looking people in the eye, or saying hello, or sitting still in a chair. He has to practice these things several hours a week with a team of therapists, at home and at his special school.
It's costing a fortune, but he's getting better. Many parents of autistic kids don't have my options. They don't have the money, or the understanding employer, or the family and community support that I do. Or, what's most heartbreaking, their child's condition just doesn't respond to anything they've tried.
Most of our days now pass without problems. And when my son has a bad moment or a meltdown, he's surrounded by caring people who are trained to coax him into using his words. They know not to grab his arm or shout or make sudden moves, and that it might take two or three times for him to respond to a question. But I know that black boys like my son, even the young ones, don't get the benefit of the doubt in real life.
So what do I do? Take him out of the day care where he's cared for like a son? Tell his openhearted teachers to treat him with a little less tenderness than they do the other kids, to help him toughen up? Or the next time he gets physical, have his therapist grab him by both wrists, and tell him sternly to keep his hands to himself?
Autism, like race, complicates almost everything, especially questions of who's privileged. Almost everyone with a child on the spectrum is living with constant anxiety, and navigating from one crisis to another. When I'm with parents of kids with autism or other disabilities, I feel like I'm in one of those zones where race doesn't matter as much. Autism is its own identity; the parents and our children, we are a People. There are conversations we have with each other that we can't have with anyone else.
All of the parents — white, black, Latino and Asian-American — have to grapple with indifferent or hostile teachers, worry about cops who think their kids are acting strange or suspicious. They're fighting to create a place for their children to thrive in a world that views them as worthless or scary. And there's that fear — the one that I used to think only black parents really understood — that you could do everything right, spend every dime, minute, ounce of energy on your child, and it still might not be enough.
20140327ＮＰＲ
The government's latest shows that 1 in 68 children in the U.S. has an autism spectrum
disorder. That's a remarkable jump from just two years ago, when the figure was
1 in 88, and an even
bigger jump from 2007, when it was just 1 in
150.But officials at the Centers for Disease Control and Prevention say the agency's skyrocketing estimates don't necessarily mean that kids are more likely to have autism now than they were 10 years ago.
"It may be that we're getting better at identifying autism," says , director of the CDC's National Center on Birth Defects and Developmental Disabilities.
A look behind the numbers shows why the agency is cautious about interpreting its findings, and why government estimates are likely to continue rising.
The CDC figures come from its , which tracks 8-year-olds in 11 communities around the country. Government researchers decide which children have autism by reviewing records from schools, doctors, social services agencies and other places that work with children who have developmental disabilities.
But it turns out this approach can still miss a lot of kids with autism, Boyle says. "If a child is not getting services, we won't pick them up."
That could explain why autism rates vary so much among the communities that are part of the CDC's surveillance network. For example, the latest figures from a community in New Jersey show that 1 in 45 children has an autism spectrum disorder, while numbers from Alabama indicate the number is just 1 in 175.
The CDC also found that white children are much more likely to be identified as having autism than black or Hispanic kids, even though scientists say race doesn't seem to affect a child's risk of developing the disorder.
There's no reason to think that children in New Jersey are at higher risk for the disorder, researchers say. What's more likely, they say, is that in some communities children are much less likely to be diagnosed or referred for services.
"You can't count what you don't see," says , an anthropologist at George Washington University who has studied autism prevalence in the U.S. and other countries.
What all this means is that government autism estimates will probably continue to rise as communities continue to get better at recognizing the disorder, Grinker says. He thinks that the true prevalence of autism could be twice the current estimate.
A 2011 by Grinker and other researchers found that in South Korea, 1 in 38 children met the criteria for autism spectrum disorder. The U.S. is on a pace to reach the same conclusion within a few years.
The CDC also found that white children are much more likely to be identified as having autism than black or Hispanic kids, even though scientists say race doesn't seem to affect a child's risk of developing the disorder.
There's no reason to think that children in New Jersey are at higher risk for the disorder, researchers say. What's more likely, they say, is that in some communities children are much less likely to be diagnosed or referred for services.
"You can't count what you don't see," says , an anthropologist at George Washington University who has studied autism prevalence in the U.S. and other countries.
What all this means is that government autism estimates will probably continue to rise as communities continue to get better at recognizing the disorder, Grinker says. He thinks that the true prevalence of autism could be twice the current estimate.
A 2011 by Grinker and other researchers found that in South Korea, 1 in 38 children met the criteria for autism spectrum disorder. The U.S. is on a pace to reach the same conclusion within a few years.
20140326從子宮就發展為自閉了
The symptoms of autism may not be obvious until a child is a toddler, but the disorder itself appears to begin well before birth.
Brain tissue taken from children who died and also happened to have autism revealed patches of disorganization in the cortex, a thin sheet of cells that's critical for learning and memory, in the New England Journal of Medicine. Tissue samples from children without autism didn't have those characteristic patches.
Organization of the cortex begins in the second trimester of pregnancy. "So something must have gone wrong at or before that time," says , an author of the paper and director of the Autism Center of Excellence at the University of California, San Diego.
The finding should bolster efforts to understand how genes control brain development and lead to autism. It also suggests that treatment should start early in childhood, when the brain is capable of rewiring to work around damaged areas.
The study grew out of research
by Courchesne on development of the cortex in children with autism. In typical
kids, the cortex is "like a layer cake," he says. "There are six
layers, one on top of the other, and in each layer there are different types of
brain cells."
Courchesne suspected that these
layers might be altered in the brains of children with autism. So he and a team
of researchers studied samples of cortex from 11 children with autism and an
equal number of typical kids. The cortex came from areas known to be associated
with the symptoms of autism.
In the brain tissue from
typical children, the cortex had six distinct layers, each made up of a
specific type of cell. But in the children with autism, "there are patches
in which specific cells in specific layers seem to be missing," Courchesne
says. So instead of distinct layers, there are disorganized collections of
brain cells.
These patches of disorganized
cortex would have different effects on the brain depending on where they occur
and how many there are, Courchesne says. That could help explain why the
symptoms of autism vary so much.
And finding that the damage
isn't everywhere suggests how a child's brain might compensate by rewiring to
avoid the trouble spots, Courchesne says. "That's one of our guesses about
how it is that autistic children, with treatment, very commonly get
better," he says.
And finding that the damage
isn't everywhere suggests how a child's brain might compensate by rewiring to
avoid the trouble spots, Courchesne says. "That's one of our guesses about
how it is that autistic children, with treatment, very commonly get
better," he says.
The new study appears to
confirm from the University of California, Los
Angeles showing that people with autism tend to have
genetic changes that could disturb the formation of layers in the cortex.
And it adds to the already considerable evidence that
autism starts in the womb, says , a geneticist at UCLA. "The overwhelming
set of data is that the problems are existing during brain development, probably
as an embryo or fetus," he says.But some of the new study's findings are surprising and even a bit perplexing, Nelson says. For example, it's odd that only certain bits of brain tissue contain these disorganized cells. "Why is the whole cortex not disorganized?" he says.
It's also odd that 10 of the 11 children with autism had the same sort of disorganized patches of cortex, Nelson says. That's not what you would expect with a disorder known to involve many different genes, presumably affecting many different aspects of brain development.
So he'd like to know what researchers would find if they looked at hundreds of brains instead of just a few. "What fraction of all the kids with autism are going to have these small patches?" he says. "I think the jury's out on that."
Nelson is right that there's no clear answer yet, says , one of the paper's authors and an investigator at the Allen Institute for Brain Science in Seattle. But it's possible that many different combinations of genes involved in autism could lead to the same patches of disorganization in the layers of cortex.
Finding out whether that's the case will be difficult because there is a of brains from children available to researchers. Parents of children who die — with and without autism — rarely agree to donate their child's brain to science.
Scientific and advocacy groups are trying to change that with that informs families about tissue donation and a that encourages people with autism and their families to get involved in research projects.
20140127 ＮＰＲ更嚴格的鑑定
But researchers say the changes, which were rolled out last May, are likely to have a bigger effect on government statistics than on the care of the nation's children.
Results from published last week found that about 19 percent of 8-year-olds previously classified as having an ASD didn't meet the updated criteria from the latest edition of the Diagnostic and Statistical Manual of Mental Disorders, or . The results suggest the that 1 in 88 children has an autism spectrum disorder could be reduced to 1 in 100.
DSM-5 eliminates for problems like Asperger's. It also changes the way specific symptoms are used to reach a diagnosis.
The study findings have got some advocacy groups worried that children will lose care and support services. "This raises serious concerns," says a statement from Rob Ring on the website. The group says it has found examples of children losing autism services because their diagnosis was changed.
A South Korean , funded in part by Autism Speaks, found that previously diagnosed children who didn't fit the new autism criteria would instead be diagnosed with the newly created social communication disorder, which would likely qualify them for services.
But of George Washington University doesn't think that's going to happen to a lot of kids. The DSM-5 will be used primarily in research settings, where "diagnoses are based on rigorous application of criteria," he says. "In everyday life, diagnoses may be made for short or long-term benefits, like helping a child get into a classroom environment that will help him or her."
The people who actually assess kids with social interaction problems or repetitive behaviors usually aren't focused on the DSM-5 criteria, Grinker says. Instead they are asking, "What is the best set of services for this person?" and, "What diagnosis should I give the person to get him or her those services?"
So even if the government lowers its estimate of children with an autism spectrum disorder, Grinker says, there could still be an increase in number of kids across the country who receive an autism diagnosis from a local clinician.
The new study confirms that "the overwhelming majority" of children diagnosed with an autism spectrum disorder under the old criteria will also meet the new criteria, says pediatrician of the University of Rochester.
And the new criteria may actually help some kids qualify for additional services because DSM-5 no longer prohibit clinicians from adding problems such as ADHD to an autism diagnosis, Hyman says.
But "the jury is out on the DSM-5," Hyman says. "It might be more accurate. It might just be different."
In the meantime, she says, researchers need the more rigorous diagnostic criteria of DSM-5 because it will help them identify the underlying brain changes associated with autism spectrum disorders. And until scientists find good biological markers of autism, Hyman says, we won't know how many children truly have the disorder.
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