NYT article - Mind Over Meds
April 27, 2010
http://www.nytimes.com/2010/04/25/magazine/25Memoir-t.html
Interesting read. I am not against meds. I know they help people with serious mental health issues and diseases. And I am glad they exist for when people need them. However, I am a BIG believer in therapy. IT IS TIME CONSUMING! I spend more time in waiting rooms every week than I care to add up. But it is worth it.
Too many parents are medicating their children and not doing the hard work that goes with therapy. As a parent, you end up getting educated by the therapists on how to carry on with the therapy principles at home. So you, sometimes unwillingly, have to learn about things that you don’t have time for or have little knowledge about. It is also time consuming to find the right therapist, determine what the right therapies are, etc. I see how medication is the easy route. But I also see how it can be done without medication and how this is providing children with the skills that they can carry with them throughout their life.
Parents need to do what is right for their child. And medication may be the answer. But, more often than not, the children that I know of that are on medications are not receiving any kind of therapy to go along with the medication. The important work is not being done.
Sibiling of children with autism learn tolerance at an early age - baltimoresun.com
April 23, 2010
Sibiling of children with autism learn tolerance at an early age - baltimoresun.com
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good read from All Kinds Of Minds blog about teachers believing in their abilities as teachers but not believing in the abilities of their students
April 21, 2010
Survey Reveals a New Achievement Gap
I find the study to reflect real life in our schools. I am always amazed that general ed teachers believe they have the skills to teach kids of all abilities. And even if they secretly do not believe in themselves, they are not open to saying to administration that they do not feel confident in their abilities to teach certain kids. I wish more teachers would ask for more help - more training, more resources to allow them to teach all kinds of minds. And perhaps our administrations need to face reality that not all teachers are capable of teaching all kinds of minds. Instead, some teachers lose hope in our kids. They secretly believe that our kids won’t succeed in school and life and they lower their expectations of themselves as teachers and of our kids as students. And when this happens, we all lose.
EEU - Experimental Education Unit at the UW
April 21, 2010
This came across one of my email groups. It describes so well the EEU. If you have a child pre-kindergarten (developmental disability or not) this is an amazing school. I was fortunate to have Jennifer Annable, current Principal of EEU (and new principal of APL!), give me a tour of the EEU and see first-hand how they teach kids of all abilities. Their classrooms have 50% typical kids and 50% kids with a developmental disability. The mark of a great school - I could not pick out, in any of their classrooms, which child had a developmental disability, and half of them did! Also, to see how they teach learning differentiation is absolutely incredible - every child is participating in the classroom together but learning in their own unique way.
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What does the University do for society? How do its knowledge, its theories, its expertise play out in the world? Of course there are scores of good answers to those questions. But if you’re looking for a case that’s especially vivid and engaging, you might pay a visit to the UW’s Experimental Education Unit (EEU) at the Norris and Dorothy Haring Center for Applied Research and Training in Education. Few things are more concrete and immediate than a roomful of very young children learning how to be in the world, and that’s the business of the EEU.
The program began life some forty years ago as a pilot school for children with neurological injuries. Then as now, its focus was on using UW research and skills to help young children make the most of lives that had begun with bad luck and impairment. Tucked in behind the Medical Center along the Ship Canal, the EEU is now jointly run by the College of Education (specifically, the Special Education area) and the Center on Human Development and Disability (CHDD). It serves about 250 children from birth to age 7, roughly half of whom have a developmental disability—Down syndrome, autism, cerebral palsy, fetal alcohol syndrome, language or motor disabilities, challenging behavior, or problems with no official diagnosis.
Whatever image you may have of a school for children with disabilities, you will not find it at the EEU. The most striking thing about the school, if one arrives knowing its mission, is how hard it is to see the disabilities. The preschool class sitting in a story circle, the kindergarteners getting ready for lunch, the children swarming over brightly colored playgrounds (one designed by UW architecture students) or filing carefully through the halls, the cheerful parents arriving or departing with kids in their arms—the whole scene is scarcely distinguishable from any other early childhood center. What you see is children—bright-eyed, upbeat, lively.
This is not an accident. “The EEU is unique in integrating disabled children with their typically developing peers,” says special-education chair Ilene Schwartz, who has been the school’s director for 3 years. “What you’re seeing here is the power of good models—the ‘normal’ kids—which is why we believe in inclusion and work really hard to achieve it. The disabled kids rise to the occasion—they look better here, and they look more disabled in segregated classrooms. It’s like tennis: if you’re trying to learn the game, it really helps to have someone there who can volley with you.”
But of course there’s more going on in EEU classrooms than immediately meets the eye. Dr. Schwartz points out the casually-dressed adults mingling with the children in any given room: the head teacher with a master’s degree in special education, the assistant teacher who’s a UW graduate student, the occupational or physical therapist, the speech and language pathologist, the classroom aides (undergraduates in early childhood education), and perhaps a visiting psychologist. Unobtrusively, children are getting highly specialized and individualized therapy in the midst of regular classroom activities and social play. Behind the scenes, meanwhile, parents have their own support and counseling services, starting with home visits and play groups for infants and continuing through the transition to “regular” school after kindergarten.
Years of educational research, much of it conducted at the school itself, underlie the curriculum, methods, and philosophy of the EEU. It is indeed “experimental.” When the school opened its doors, many people believed that children with Down syndrome could not learn. Today, these children are being educated in classrooms all over the country with an approach that was developed at the EEU. “We did the seminal work,” says Dr. Schwartz. “It is now recognized that people with intellectual disabilities can lead fulfilling lives.”
The urgent issue now is autism, which some are calling an epidemic. The current rate of diagnosis, says Dr. Schwartz, is one in a hundred eight-year-olds. School districts are mandated to provide appropriate education for these (and all disabled) children, and in 2008 there were 6,025 autistic children in Washington public schools.
“What we are demonstrating at the EEU,” says Dr. Schwartz, “is that children with autism can succeed in school settings.” Her own Project DATA (Developmentally Appropriate Treatment for Autism) gives autistic children small-group or individual instruction in addition to their time in a regular EEU class. “We have to teach many of these kids to play,” she says. “It’s critical, because play is the medium in which children learn.” For parents, the EEU is an alternative to the kind of intensive, home-based autism therapy that can overwhelm family time and resources. Most of the Project DATA children (and indeed of all EEU disabled students) gain enough independence and social skills to go on into blended public-school classrooms. Some succeed spectacularly, like the boy who entered Seattle’s gifted program and is now first-chair trumpet in his middle-school orchestra.
But not all have such happy outcomes. Much remains to be learned about autism, and it is a subject of intense study by UW scientists, along with other aspects of human development that pertain to the EEU. As part of the UW and CHDD, the school has a direct line to these researchers, many of them national leaders in their fields. “We don’t do the basic science,” says Dr. Schwartz, “but we learn from people all over campus, and sometimes they do research right here.” The EEU draws on the science to understand and attack practical problems in the classroom, doing what Dr. Schwartz calls “translative research.”
The UW funds only 10-20 percent of the EEU (the building and two salaries), but the school’s campus location, its ties to both the College of Education and CHDD science, are crucial to its work. Most funding comes from contracts with Seattle Public Schools and other agencies, which in effect hire the EEU to teach disabled students (those aged three and over), to develop model programs, and to train people who work in the field. These contractual arrangements, and the program’s many grants, mean that the parents themselves pay nothing. (The program even includes two Head Start classrooms, which work with both disabled and “normal” children from low-income families.) Hundreds of observers spend time at the EEU every year and take new ideas and expertise back to their own schools and agencies across the country.
A year ago, the EEU learned of a planned bequest that will likely augment still further its work and influence. Norris Haring, the school’s founding director, and his wife Dorothy have established an endowment that will ultimately bring the school more than $4 million. The gift will fund 15 graduate fellowships every year in special education, as well as supporting other aspects of the work of the new Norris and Dorothy Haring Center for Applied Research and Training in Education.
Meanwhile, you will find no greater fans of the EEU than the parents whose children have learned there. “It’s world class,” says Tracy Brown. All three of her children, the middle one with Down syndrome and the other two without disabilities, have been EEU students. “I’ve been astounded by the professionalism of the staff but also by their personal qualities—their understanding and compassion, their encouragement and willingness to try anything, to work on whatever you want, academics, social skills, anything. It’s really a family. I’ve so appreciated the parents who brought their typically developing kids there, because the disabled kids really do learn by mimicking. But the typical kids also learn—the EEU breaks down those walls of fear about relating to people who are different. This school is a hidden gem.”
So when people ask you what the University contributes to the larger world, remember the EEU.
from WAA - preparing for mental health parity 7/1/10, will it work for autism?
April 19, 2010
Is Autism treatable? Is the treatment attainable and widely accessible? Are highly trained and competent treatment providers covered by insurance companies and Medicaid?
With scientific advances in the last decade promising treatments have emerged and are gaining national attention. Yet the payers (insurance carriers and self-funded plans managed by insurance carriers) continue to arm themselves with old, carefully selected misrepresenations of the truth that autism is treatable and these treatments are attributing to better outcomes for patients with ASD’s.
For this reason, 18 states have now passed laws that ban specific policy exclusions of autism treatments and require coverage of evidence based diagnosis, develpment of treatment plans and the treatments by private insurance.
In Washington State, Full Mental Health Parity will become LAW on 7/1/2010. Mental Health Parity covers medically necessarty treatments for individuals with a DSM diagnosis for life, with the same dollar cap as medical & surgical benefits.
After that if evidence based diagnosis and treatment is still being denied, then the law has to be court tested. You may have read about class action lawsuits that have required insurance to cover autism. Several prominent WA attorneys have expressed serious interest in testing out WA’s Mental Health Parity in courts. If you’re insurance is denying treatment that is prescribed and found to be medically necessary to treat autism, this may be of interest to you. Please get the denials in writing, ask a lot of questions:
- Is the treatment being denied by XYZ or is it not included in my employers plan?
- Is the treatment covered for other conditions?
- Is the treatment covered for patients who are not insured through XYZ company?
Ask them to put all the information in writing, if they refuse, get their contact information, you put in writing what they told you & send it to them. You need a paper trail for any appeals or other action. Keep a separate folder with all these records.
Please distribute this information to your local listserves and among those with ASD’s. Insurers have worked hard to create barriers to assure minimum payouts on claims. Consumers will have to be well informed and know their rights.
All my best,
Arzu Forough
Scientists fear MMR link to autism
April 17, 2010
By SALLY BECK, Mail on Sunday
http://www.dailymail.co.uk/news/article-388051/Scientists-fear-MMR-link-autism.html
New American research shows that there could be a link between the
controversial MMR triple vaccine and autism and bowel disease in children.
The study appears to confirm the findings of British doctor Andrew
Wakefield, who caused a storm in 1998 by suggesting a possible link.
Now a team from the Wake Forest University School of Medicine in North
Carolina are examining 275 children with regressive autism and bowel
disease - and of the 82 tested so far, 70 prove positive for the measles
virus.
Last night the team’s leader, Dr Stephen Walker, said: ‘Of the handful
of results we have in so far, all are vaccine strain and none are wild
measles.
‘This research proves that in the gastrointestinal tract of a number of
children who have been diagnosed with regressive autism, there is
evidence of measles virus.
‘What it means is that the study done earlier by Dr Wakefield and
published in 1998 is correct. That study didn’t draw any conclusions
about specifically what it means to find measles virus in the gut, but
the implication is it may be coming from the MMR vaccine. If that’s the
case, and this live virus is residing in the gastrointestinal tract of
some children, and then they have GI inflammation and other problems, it
may be related to the MMR.’
The 1998 study by Dr Wakefield, then a reader in gastroenterology at the
Royal Free Hospital in North London, and 12 other doctors claimed to
have found a new bowel disease, autism enterocolitis.
At the time, Dr Wakefield said that although they had not proved a link
between MMR (measles, mumps, rubella) and autism, there was cause for
concern and the Government should offer the option single vaccines -
instead of only MMRs - until more research had been done.
The paper - and the confused interpretation of its findings - caused
uproar and led to many parents withdrawing their co-operation for the
triple jab. Ten of the paper’s authors also signed retractions on the
interpretation but stood by the science.
This is the second independent study to back up Dr Wakefield. In 2001
John O’Leary, Professor of Pathology at St James’s Hospital and Trinity
College, Dublin, replicated his findings.
Last night Dr Wakefield said: ‘This new study confirms what we found in
British children and again with Professor O’Leary. The only exposure
these children have had to measles is through the MMR vaccine.
‘They were developing normally until they regressed. They now suffer
autism and bowel disease.
‘The Department of Health and some of the media wanted to dismiss our
research as insignificant. The excuse was that no one else had the same
findings as us. What they didn’t say is that no one else had looked.’
A spokesman for the Department of Health said they had not read the
American report, but added: ‘MMR remains the best form of protection
against measles, mumps and rubella.’
sharing a post from john elder robison - cure or embrace?
April 12, 2010
http://jerobison.blogspot.com/2010/04/i-am-autism-too-thoughts-on.html
Interesting blog, very difficult topic.
My personal experience. My 7 yo son knows that he has Aspergers. He thinks it’s a funny word: AssBurgers - what is AssBurgers, that isn’t a word! When I describe what Aspergers is, he says “no I don’t do that”, “no that doesn’t sound like me at all”. Because, of course, his view of the social world is different than my view of the social world. He doesn’t see it and he usually thinks he’s right. After all, one of the descriptors that I always use is how intelligent he is when it comes to visual memory, perceptual thinking, putting together complex puzzles, etc, etc. So if he’s so smart, how is that wrong? I don’t blame him for being confused.
And, when I bring up autism, he and his sister both agree that he in no way has autism - because they have personal experience with what classic and regressive autism look like. Yet, he goes to the Seattle Children’s Autism Center for therapy. This confuses him. He says he definitely does not have autism. His view of autism is that of the more significantly impacted. And, in their view, if they talk like typical speakers then he can’t have autism. It is very difficult to explain how it’s all the same spectrum. It’s easy to describe Aspergers and it’s easy to describe Autism, but all the in between is very difficult and it’s even difficult to show why they are on the same spectrum.
I definitely don’t want to cure my son. Am I providing him with opportunities to learn social skills, cognitive behavioral therapy to understand how his brain functions, to help him self identify and self manage, YES! And, he’s getting it. He’s picking up on the Michelle Garcia Winner’s Superflex curriculum brilliantly.
But he has the ability to communicate, he is very bright so he’s able to incorporate the teaching and the skills, we’re able to get the behaviors under control so that he can participate. Some don’t have these abilities. And I completely understand the need to unlock autism, or some would say, to cure it.
It really begs the question whether the changes to the DSMV should be made. It’s almost like we’re fighting two different fights. I mean where would we be if there weren’t people like Einstein, Mozart, Lewis Carroll, Andy Warhol, Thomas Jefferson, and Bill Gates. I don’t want to cure Aspergers because they are potentially the person who will unlock autism.
Personal History: Parallel Play: newyorker.com
April 10, 2010
Personal History: Parallel Play: newyorker.com.
Betting on the Blind Side Business: vanityfair.com
April 6, 2010
Interesting read about Michael Burry and Aspergers
Betting on the Blind Side Business: vanityfair.com.
Arthur® Explores Asperger’s Syndrome
April 4, 2010
New character in April 5 episode
http://www.autism-society.org/site/News2?news_iv_ctrl=-1&page=NewsArticle&id=15923
