KindTree - Autism Rocks

2012-03-01T18:18:00.000-08:00

Thoughts...?

Subject: New Definition of AutismWill Exclude Many, Study Suggests

New Definition of Autism Will Exclude Many, Study Suggests
http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-woul
d-exclude-many-study-suggests.html?_r=1&pagewanted=all
Single Page Version

By BENEDICT CAREY
Published: January 19, 2012

Proposed changes in the definition of autism would sharply reduce the
skyrocketing rate at which the disorder is diagnosed and might make it
harder for many people who would no longer meet the criteria to get health,
educational and social services, a new analysis suggests.

The definition is now being reassessed by an expert panel appointed by the
American Psychiatric Association, which is completing work on the fifth
edition of its Diagnostic and Statistical Manual of Mental Disorders, the
first major revision in 17 years. The D.S.M., as the manual is known, is
the standard reference for mental disorders, driving research, treatment
and insurance decisions. Most experts expect that the new manual will
narrow the criteria for autism; the question is how sharply.

The results of the new analysis are preliminary, but they offer the most
drastic estimate of how tightening the criteria for autism could affect the
rate of diagnosis. For years, many experts have privately contended that
the vagueness of the current criteria for autism and related disorders like
Asperger syndrome was contributing to the increase in the rate of diagnoses
- which has ballooned to one child in 100, according to some estimates.

The psychiatrists' association is wrestling with one of the most
agonizing questions in mental health - where to draw the line between
unusual and abnormal - and its decisions are sure to be wrenching for some
families. At a time when school budgets for special education are
stretched, the new diagnosis could herald more pitched battles. Tens of
thousands of people receive state-backed services to help offset the
disorders' disabling effects, which include sometimes severe learning and
social problems, and the diagnosis is in many ways central to their lives.
Close networks of parents have bonded over common experiences with
children; and the children, too, may grow to find a sense of their own
identity in their struggle with the disorder.

The proposed changes would probably exclude people with a diagnosis who
were higher functioning. "I'm very concerned about the change indiagnosis,
because I wonder if my daughter would even qualify," said Mary Meyer of
Ramsey, N.J. A diagnosis of Asperger syndrome was crucial to helping her
daughter, who is 37, gain access to services that have helped tremendously.
"She's on disability, which is partly based on the Asperger's; and I'm
hoping to get her into supportive housing, which also depends on her
diagnosis."

The new analysis, presented Thursday at a meeting of the Icelandic
Medical Association, opens a debate about just how many people the proposed
diagnosis would affect.

The changes would narrow the diagnosis so much that it could effectively
end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study
Center at the Yale School of Medicine and an author of the new analysis of
the proposal. "We would nip it in the bud."

Experts working for the Psychiatric Association on the manual's new
definition - a group from which Dr. Volkmar resigned early on - strongly
disagree about the proposed changes' impact. "I don't know how they're
getting those numbers," Catherine Lord, a member of the task force working
on the diagnosis, said about Dr. Volkmar's report.

Previous projections have concluded that far fewer people would be
excluded under the change, said Dr. Lord, director of the Institute for
Brain Development, a joint project of NewYork-Presbyterian Hospital, Weill
Medical College of Cornell University, Columbia University Medical Center
and the New York Center for Autism.

Disagreement about the effect of the new definition will almost certainly
increase scrutiny of the finer points of the psychiatric association's
changes to the manual. The revisions are about 90 percent complete and will
be final by December, according to Dr. David J. Kupfer, a professor of
psychiatry at the University of Pittsburgh and chairman of the task force
making the revisions.

At least a million children and adults have a diagnosis of autism or a
related disorder, like Asperger syndrome or "pervasive developmental
disorder, not otherwise specified," also known as P.D.D.-N.O.S. Peoplewith
Asperger's or P.D.D.-N.O.S. endure some of the same social struggles as
those with autism but do not meet the definition for the full-blown
version. The proposed change would consolidate all three diagnoses under
one category, autism spectrum disorder, eliminating Asperger syndrome and
P.D.D.-N.O.S. from the manual. Under the current criteria, a person can
qualify for the diagnosis by exhibiting 6 or more of 12 behaviors; under
the proposed definition, the person would have to exhibit 3 deficits in
social interaction and communication and at least 2 repetitive behaviors, a
much narrower menu.

Dr. Kupfer said the changes were an attempt to clarify these variations
and put them under one name. Some advocates have been concerned about the
proposed changes.

"Our fear is that we are going to take a big step backward,"said Lori
Shery, president of the Asperger Syndrome Education Network. "If clinicians
say, 'These kids don't fit the criteria for an autism spectrum diagnosis,'
they are not going to get the supports and services they need, and they're
going to experience failure."

Mark Roithmayr, president of the advocacy organization Autism Speaks,
said that the proposed diagnosis should bring needed clarity but that the
effect it would have on services was not yet clear. "We need to carefully
monitor the impact of these diagnostic changes on access to services and
ensure that no one is being denied the services they need," Mr. Roithmayr
said by e-mail. "Some treatments and services are driven solely by a
person's diagnosis, while other services may depend on other criteria such
as age, I.Q. level or medical history."

In the new analysis, Dr. Volkmar, along with Brian Reichow and James
McPartland, both at Yale, used data from a large 1993 study that served as
the basis for the current criteria. They focused on 372 children and adults
who were among the highest functioning and found that overall, only 45
percent of them would qualify for the proposed autism spectrum diagnosis
now under review.

The focus on a high-functioning group mayhave slightly exaggerated that
percentage, the authors acknowledge. The likelihood of being left out under
the new definition depended on the original diagnosis: about a quarter of
those identified with classic autism in 1993 would not be so identified
under the proposed criteria; about three-quarters of those with Asperger
syndrome would not qualify; and 85 percent of those with P.D.D.-N.O.S.
would not.

Dr. Volkmar presented the preliminary findings on Thursday. The
researchers will publish a broader analysis, based on a larger and more
representative sample of 1,000 cases, later this year. Dr. Volkmar said
that although the proposed diagnosis would be for disorders on a spectrum
and implies a broader net, it focuses tightly on "classicallyautistic"
children on the more severe end of the scale. "The major impact here is on
the more cognitively able," he said.

Dr. Lord said that the study numbers are probably exaggerated because the
research team relied on old data, collected by doctors who were not aware
of what kinds of behaviors the proposed definition requires. "It's notthat
the behaviors didn't exist, but that they weren't even asking about them -
they wouldn't show up at all in the data," Dr. Lord said.

Dr. Volkmar acknowledged as much but said that problems transferring the
data could not account for the large differences in rates.

2012-02-15T18:04:00.000-08:00

A couple years ago I adopted a dog (named Kiddo) and wanted to share how much he has helped me. I thought maybe sharing could inspire someone else.

My dog Kiddo pretty much gave me a life, and vice versa- I gave him a life (was out of time at the pound). He opened my world to be able to do a lot of things that I previously had been to afraid to do or didn't want to do because of anxiety or being lonely. These days I can now go to all kinds of parks and go exploring to different places... I am not alone so I feel safer and in good company. I overcame my fear of driving on fast country roads too, because of Kiddo. This means I can drive to other towns now, when before I simply would NOT. I have gotten to see SO so many wonderful places in Oregon since I adopted Kiddo. And I think that going for drives in the country is one of my favorite things to do. We also go for bike rides and go swimming. Before I adopted him I would never go to a restraunt without a person with me, I know it sounds silly but maybe it was because I was anxious or nervous. When I first adopted Kiddo I would sit at outdoor tables at cafes with him and eat and have a nice time. Now when I come to a restraunt that doesn't have outdoor seating I can go inside and sit alone and be ok with that. I guess you could say he has given me more confidence. I used to always avoid crossing the street at a crosswalk at a busy intersection because I was nervous about people looking at me. But with Kiddo I didn't mind as much walking across the street. Maybe because all the attention wouldn't be on just me. All these changes happened the first month I had him. After adopting Kiddo I guess I realized all the things I had missed out on. I love that boy so much. I feel we are kindered spirits. There are so many personality traits of his that I see in myself. Kind of like he is my son.

2012-01-31T19:14:00.000-08:00

I just read this op-ed. Seems to be supporting the more restrictive diagnosis of Aspergers. What do you think? - Autism Rocks

Asperger's History of Over-diagnosis
by Paul Steinberg

Asperger syndrome and Aspies — the affectionate name that people diagnosed with Asperger syndrome call themselves — seem to be everywhere.

Considered to be at the high-functioning end of the autism spectrum, Asperger syndrome has become more loosely defined in the past 20 years, by both the mental health profession and by lay people, and in many instances is now synonymous with social and interpersonal disabilities. But people with social disabilities are not necessarily autistic, and giving them diagnoses on the autism spectrum often does a real disservice. An expert task force appointed by the American Psychiatric Association is now looking into the possibility of changing the way we diagnose Asperger. True autism reflects major problems with receptive language (the ability to comprehend sounds and words) and with expressive language. Pitch and tone of voice in autism are off-kilter. Language delays are common, and syntactic development is compromised; in addition, there can be repetitive motor movements.

Eventually, biological markers, now in the beginning stages of development, will help in separating autism-spectrum disorders from social disabilities. For example, researchers at the University of Pittsburgh Medical Center have recently developed three-dimensional brain scans that look at brain wiring. In preliminary studies people with autism-spectrum disorders appear to have too much wiring and disorganized wiring in areas involved with language acquisition.

Nevertheless, children and adults with significant interpersonal deficits are being lumped together with children and adults with language acquisition problems. Currently, with the loosening of the diagnosis of Asperger, children and adults who are shy and timid, who have quirky interests like train schedules and baseball statistics, and who have trouble relating to their peers — but who have no language-acquisition problems — are placed on the autism spectrum.

In recent years speculation has abounded that Albert Einstein must have had Asperger syndrome. Christopher Hitchens speculated that his intellectual hero George Orwell must have had Asperger. Indeed, Orwell had major problems fitting in at British preparatory schools — not surprisingly, he hated the totalitarian tenor of teachers and school administrators — but someone on the autism spectrum could probably never have become a police officer in Lower Burma, as Orwell did. Similarly, writers like Charles Morris have noted that Warren Buffett is thought to have a condition on the autism spectrum, presumably Asperger syndrome.

A 1992 United States Department of Education directive contributed to the over-diagnosis of Asperger syndrome. It called for enhanced services for children diagnosed as being on the autism spectrum and for children with “pervasive developmental disorder — not otherwise specified (P.D.D.-N.O.S.),” a diagnosis in which children with social disabilities could be lumped. The diagnosis of Asperger syndrome went through the roof. Curiously, in California, where children with P.D.D.-N.O.S. were not given enhanced services, autism-spectrum diagnoses did not increase. Too little science and too many unintended consequences.

The downside to this diagnosis lies in evidence that children with social disabilities, diagnosed now with an autism-spectrum disorder like Asperger, have lower self-esteem and poorer social development when inappropriately placed in school environments with truly autistic children. In addition, many of us clinicians have seen young adults denied job opportunities, for example in the Peace Corps, when inappropriately given a diagnosis of Asperger syndrome instead of a social disability. George Orwell might never have been able to write his brilliant essay about the shooting of an elephant if Asperger syndrome had been part of his permanent medical record.

Given that humans are social animals, interpersonal intelligence is perhaps the most important natural human skill — as valuable as or more valuable than verbal-linguistic intelligence and logical-mathematical intelligence (to use the terminology of the Harvard psychologist Howard Gardner), the skills focused on in school. Social disabilities are not at all trivial, but they become cheapened by the ubiquity of the Asperger diagnosis, and they become miscast when put in the autism spectrum.

In his 2009 book “Parallel Play,” Tim Page, a former music critic for The Washington Post, describes his relief in being given an Asperger syndrome diagnosis as an adult and thus having an explanation for his longstanding social difficulties. But the rubric of a “social disability” would be more accurate than “autism spectrum” for people like Mr. Page, and potentially just as relieving. In addition, adults and children who have normal expressive and receptive language skills can benefit more fully from social-skills programs than adults and children with true autism. In fact, Tim Page learned a large measure of his social skills from an Emily Post course, just as Warren Buffett credits a Dale Carnegie program with changing his life.

For Mr. Buffett and Mr. Page, these social skills do not come naturally and automatically. But these men are able to compensate more completely than a truly autistic child or adult whose language deficiencies and cognitive deficits can often put him at a level of functioning in the mentally retarded range.

Many people, now inappropriately labeled as Aspies, make the world a richer, more interesting place. Their quirky absorptions in, say, physics, baseball stats or investment strategies add enormously to human advancement. Unlike adults with a Peter Pan syndrome who never move beyond adolescence, children and young adults with significant social disabilities tend to grow quite effectively into their adult lives. Their seriousness and singularity of focus fit more compatibly with the interests of older adults rather than the interests of their childhood or young adult peers.

For better or worse, though, Asperger syndrome has become a part of our cultural landscape. Comments about a person’s having “a touch of Asperger’s” seem to be part of everyday conversations. Even an episode of “South Park” last year was devoted to Asperger syndrome. We can only hope that better physiological markers distinguishing between the autism-spectrum disorders and pure social disabilities can stem this tide of ever more pathologizing.

But, as Martha Denckla, a pediatric neurologist at Johns Hopkins University, has lamented, the only Americans in the future who will perhaps not be labeled as having a touch of Asperger syndrome will be politicians and lobbyists. Members of the political establishment may have other kinds of psychopathology; but, unlike the rest of us, they at least cannot be thought of as Aspies.

Paul Steinberg is a psychiatrist.

Getting Into kindtree by Katie Clark

2012-01-20T15:36:00.000-08:00

My mom was with a guy named Robert Pasley who found out of kindtree and they had him do karaoke for them at there camp retreat he did karaoke and started doing karaoke for some of there events him me and my mother went to one of there retreats in 2005 and did karaoke for them lots of people who joined the retreat really liked the karaoke and so we kept doing karaoke at the retreat as well as did karaoke at a few other of there events up until like i think the year before last year well Robert and my mom started having issues between each other and Robert had a health issue as well we stopped doing karaoke for kindtree. Well i really liked kindtree as i have Autism and became good friends with Mary Minn the president of kindtree i emailed her like in 2006 and we've been emailing ever since she has invited me to some of kindtrees events such as the autism artism and such she also invited me to the kindtree support group for adults with Aspergers and such i went for a while i liked it at first but then i realized i wasn't getting much out of it and so then when the Social skills group started by Michelle who founded kindtree and by Mary i started going to that and liked that much better we learn social skills one month and then the next month we go on a social outing somewhere well being social doesn't come as easy to those on the spectrum so having the group helps and going out somewhere and using our social skills helps.Me and Mary have hung just the two of us a few times its nice to have a friend who understands me well because she also has Autism she's probably the best friend I've had so far. Well since kindtree I've made quite a few friends then ever before and Mary is on the top of those friends i think.

the coast

2012-01-19T16:39:00.001-08:00

I want to talk about the coast.
I went Thursday afternoon. I went with Melissa, she is my trainer.
I went to the beach and the Heceta head lighthouse.
At the lighthouse I climbed to the top.
It has a crack on the cement. I was looking at the ocean through the window. It had 52 steps.
The weather was warm and sunny.
My favorite part of the day was playing on the beach and going out to lunch at mo’s.

2012-01-17T18:05:00.000-08:00

Take note - people with autism get in free!

Benefit Concert at Sam Bonds - Sunday, February 5th, from 8 p.m. to 11 p.m.

Come enjoy some great music while you help support our programs for the Autism Community.

Catch the Debut Performance of "Steel Wool", the newest combo featuring TR Kelly and Randy Hamme of the Raventones, plus Tim Mueller and Nel Applegate doing all original songs. Rockin'.

Followed by DJ & Ray, doing some serious instumental Rock Blues and Acid Jazz.
What a bill! And people with autism can get in free.

So put it on your calendar. Come on down. Have a beer. Have a slice of Pizza. Join the Community.

Rockin!!!

2012-01-15T22:18:00.000-08:00

Greetings,

KindTree - Autism Rocks is reaching out to people experiencing autism with our new blog "Your BLOG at KindTree - Autism Rocks". With the help of our intern Melissa, we are inviting your participation in this new online community centered in Eugene, Oregon. Got something to say? We'll be listening.

Thanks. - Autism Rocks