Saturday, March 31, 2007
1. MTV's "True Life" Features Teens With Autism
2. "Strange Son" Recalls Struggle of Autistic Boy Who Gains Words
3. Recent Autism News Headlines
4. CNN's "Larry King Live" Features Autism Talk
5. Massachusetts to Consider Restrictions on Aversive Autism Therapy
Most popular categories or "labels" for readers researching articles on Autism Bulletin this month:
3. autism services
Source: Google Analytics
See The Morning News report online here. This news story covers the state Senate committee vote (Republicans voted in favor and Democrats against) and notes that families who have children with autism lobbied in favor of the bill as a way to get educational services for their kids. The teachers unions and education groups opposed it on the principle that any kind of voucher takes money out of the strained public schools pot.
Earlier coverage of this proposal noted that proponents of school vouchers have failed to win enough political support in the past to implement it; attaching the idea it to an issue like autism could be a way to get vouchers approved in Texas, according to this line of thinking.
The newspaper's report cited $14,000 per year as the average cost for educating a student with autism. Under the bill, parents opting to send their child to private school costing more would pay the difference.
Sen. Florence Shapiro, a Plano Republican, is the sponsor of Senate Bill 1000. You can see her February 28 press release on the bill here. A fact-sheet in support of the bill, nicknamed "ASAP" for Autism Services Accessibility Program, is available here (a one-page PDF file).
One of Shapiro's arguments is that a voucher plan for kids with autism makes economic sense. From her press release:
"Because symptoms can vary so greatly, a program that works for one child may not be effective for another," Shapiro said. "That is why individualized programs are so important."
Research shows that with appropriate intervention, almost 50 percent of children with autism can become indistinguishable from mainstream population. However, if proper services are not provided, the majority of adults with autism will require high-level care or institutionalization.
Senate Bill 1000 gives parents the option and the educational freedom to seek out appropriate intervention for their children, providing funding equal to the amount to which their child would be entitled in their home school district.
Autism Takes Stage in Texas School Voucher Debate
Thursday, March 29, 2007
The Standing Senate Committee on Social Affairs, Science and Technology on March 29 issued a report entitled "Pay Now or Pay Later: Autism Families in Crisis," which calls on "the federal government, in collaboration with the provinces and territories, establish a comprehensive National ASD Strategy." You can read a press release from the committee here, and see a copy of the 36-page report (PDF file) here.
The panel says that national strategy should cover lifelong services and supports for people with autism. Its list of recommendations (see here) is heavy on information-gathering, increasing public awareness about autism spectrum disorders, and including citizens who have autism diagnoses in future policy-making deliberations. It also calls for more research into best practices for delivering autism-related services and disseminating those best practices around the country. And it calls for tax policies that could help families deal with autism-related expenses.
These are good ideas, to be sure, and the Senate panel is clearly sticking a stake in the ground in front of Parliament Hill in Ottawa to put autism on the national agenda. However, as the listing of ideas above describes, the Canadian panel's recommendations appear to be light on concrete actions or specific proposals that provide direct services to people with autism and their families anytime soon. Contrast these recommendations with those contained in recent state autism task force reports in the United States, such as Washington here and Kentucky here.
On the other hand, the Standing Senate Committee on Social Affairs does endorse a proposal now in Parliament to have Canada's national health plan cover the costs of Applied Behavior Analysis (ABA) services (also called Intensive Behavioral Intervention, or IBI, in Canada). That's not something anyone in the U.S. could discuss without Washington enacting a health care overhaul or federal budget offensive.
Lastly, the Senate committee's report gives an important clue as to why it didn't come out more forcefully with a set of specific recommendations for national action on autism policies. The reason: Canada lacks a critical-mass consensus on what to do about autism spectrum disorders. Take this early passage from the report:
PART I: AUTISM: A COMPLEX ISSUE WITH SEVERAL DIFFERING VIEWS
The Committee heard many different points of view on the complex issue of autism. Contrasting views were presented with respect to the definition of autism, its prevalence, the effectiveness of various autism interventions, and the need for treatment. Sometimes, divergent opinions were highlighted among autistic individuals, advocacy groups and families. This makes it very difficult to achieve consensus and to identify potential options for policy considerations. For this reason, it is clear that any set of recommendations will not please everyone. At the same time however, this reinforces the call for a strong foundation of autism research and underscores the need for unbiased, accurate information through education, knowledge exchange and public awareness. This also suggests that consultations with all stakeholders including, perhaps most importantly, autistic individuals, are essential to policy decision-making.
Like the U.S., autism services -- the rising need for them and the challenge to pay for them -- is a hot-button issue at the provincial level. Also see:
Tuesday, March 27, 2007
The two-day workshop is open to the public and comes at the request of U.S. Secretary of Health and Human Services Mike Leavitt, according to the Institute of Medicine website (see it here, where you can access both a "statement of task" and a workshop agenda). The workshop will focus on these three questions:
- What are the most promising scientific opportunities for improving the understanding of potential environmental factors in autism?
- What scientific tools and technologies are available, what interdisciplinary research approaches are needed, and what further infrastructure investments will be necessary in the short- and long-term to be able to explore potential relationships between autism and environmental factors?
- What opportunities exist for public-private partnerships in the support and conduct of the research?
The agenda includes participants from government research bodies such as the National Institute of Mental Health, the National Institute of Environmental Health Sciences, as well as scientists and academics from institutions such as Vanderbilt University; the M.I.N.D. Institute from the University of California at Davis; Harvard Medical School; Mount Sinai School of Medicine; Columbia University; University of Arizona; the J. Craig Venter Institute for genomics research; Baylor College of Medicine; University of Rochester Medical Center. That's on the first day.
Autism advocates are also on the agenda, including Laura Bono, a board member of the National Autism Association and Sallie Bernard, the co-founder of SafeMinds, or Sensible Action for Ending Mercury-Induced Neurological Disorders, who is a board member at Autism Speaks.
This is interesting because both SafeMinds and the National Autism Association have criticized past statements by the Institute of Medicine that concluded there was no causal link between the measles-mumps-rubella vaccine and autism. You can view conclusions of a 2004 Institute of Medicine report here. SafeMinds has a list of press releases here that criticizes that finding and the authors of it, alleging conflicts of interest.
On its website (see here), the National Autism Association notes that this Institute of Medicine workshop, to be held right before a Defeat Autism Now (DAN) conference, formed with its leaders' participation. Here's what the group has to say:
Unlike the 2004 IOM Committee, the workshop group will not address causation or issue any formal recommendations. Also, it will not discuss the efficacy of any treatments. Rather, there will be presentations and discussions on strategies for research focusing on the potential relationship between autism and an array of environmental exposures.
A publicly available summary of the presentations and discussions made during the workshop will be prepared by a rapporteur and will reflect what transpired at the workshop. It will be published by the National Academies Press in the early Fall of 2007.
Laura Bono of the National Autism Association and Mark Blaxill of SafeMinds were two of three advocates invited to serve on the workshop planning committee. They were tasked with helping to develop the meeting agenda and presenters.
Laura and Mark made it their primary objective to direct the workshop toward the most relevant research areas to our community that have historically been overlooked by federal health agencies. In addition, Laura has been asked to give a statement at the workshop on the Perspectives of the Advocacy Community.
Monday, March 26, 2007
You can find the article, "Autism: It's Not Just in the Head," at Discover's website by clicking here.
Dr. Herbert gave a lecture about her research, which you can read about in "Studying Autism as a Whole Body Condition," by clicking here; there is some overlap to the issues covered in Discover's article.
What's exciting is that these accomplished researchers are very enthusiastic about the possibilities of their scientific inquiries, and that they could result in some medical treatments that make a difference in the lives of people with autism by changes in diet and other conditions. The Discover article specifically refers to the regimens advocated by the Defeat Autism Now doctors, for example, as mitigating some children's autistic symptoms over time.
What's also tough to convey, in my opinion, even in a well-documented story such as this magazine piece, is the complex, wide-ranging nature of autism spectrum disorders. It's interesting to note that a number of researchers are starting to refer to autism in the plural, as autisms, and that medical investigators who make progress on one of these autisms may not make progress on all of them. (See this article for an example of that idea.)
Or, as the researchers tell Discover:
Herbert’s full-body perspective helps make sense of the confusion surrounding the diagnosis of autism and helps justify the increasingly common use of the plural “autisms” to describe the wide variations in this disorder. As Newschaffer points out, “Children with Asperger's syndrome certainly share a lot of the behaviors of those with more severe autism. But is it the same disease, and is it caused by the same thing? A number of significant features of autism are not part of the diagnostic schema right now, but eventually, those features may end up distinguishing one causal pathway from another. How is a child sleeping? Does he or she have gastrointestinal symptoms? By looking at those things we may see risk-factor associations pop out that we’ve never seen before.”
One last note. In 2006, Autism Bulletin featured Herbert as one of our picks for advocates of the year. See that story here.
Saturday, March 24, 2007
The statement came during the Prime Minister's Question Time, when the head of the British government stands in the House of Commons in Parliament and answers members' queries. Among questions about the upcoming London Olympics, international treaties, ambulance services and efficient energy use came this exchange with Conservative Party member Lee Scott of London:
Mr. Lee Scott: Will the Prime Minister join me in supporting the National Autistic Society’s campaign to “make schools make sense”, and will he agree to meet me and a leading campaigner, Ivan Corea from my constituency, to discuss the inadequacies of services across the country?
The Prime Minister: I do not know enough about the details of that particular campaign to give an endorsement to it, but I am very happy to meet the honorable Gentleman and the campaign to discuss it. Autism is a very serious issue that has to be taken seriously by our medical services and schools.
You can see a copy of the official House of Commons transcript by clicking here.
The National Autistic Society is the London-based group that is distributing a video produced by researchers at Cambridge University to helps 30,000 British kids with autism spectrum disorders recognize emotions. (See more about that project here.) The "Make School Make Sense" campaign has three goals:
* The right school for every child with autism. The campaign calls on the government to make more school programs available to children with autism spectrum disorders so each "has local access to a diverse range of mainstream and specialist educational provision, including autism-specific resource bases attached to mainstream schools, special schools and specialist outreach support."
* Autism-related training for every teacher. The National Autistic Society cites estimates that close to one percent of British children have an autism spectrum disorder -- and yet autism-related teacher training is not a requirement in the country. The campaign calls for an awareness program for teachers in the U.K., to give them "practical information, ideas and support on how best to support the differing needs of children with autism." It also calls for training for special education needs coordinators.
* The sharing of best educational practices across British schools. The group cites "a great deal of disparity" across the U.K. in the quality of education programs for kids on the autism spectrum. The campaign calls for "the right approach in every school" to elevate the quality of services in districts that are now lacking. "Some parents have experienced overt discrimination because of their child's disability, which is unacceptable and illegal," the National Autistic Society reports. "Many parents highlight the struggle of fighting to get the support their child needs and the negative impact this has on their well-being and family life."
You can find out more the National Autistic Society's "Make Schools Make Sense" campaign by clicking here.
Thursday, March 22, 2007
The "Expanding the Promise for Individuals with Autism Act" takes a seven-pronged approach to expand access to treatment and support. It would:
* Boost funding for autism-related services at the state level by awarding grants to states "to help them provide evidence-based treatments, interventions and services."
* Target programs for adults with autism. The bill would set up a grant program specifically targeting programs in states that serve adults with autism. "These grants will go to states to provide appropriate interventions and services, such as housing or vocational training, to adults with autism."
* Increase the supply of post-diagnosis services. Because many children and families have to wait months for treatment after getting an autism diagnosis, this bill "will mandate that the Secretary of Health and Human Services develop guidelines to increase the amount and quality of post-diagnosis treatments and services" through federal and state-funded programs.
* Address a shortage of service providers. The bill would increase the capacity of "University Centers for Excellence in Development Disabilities Education, Research and Service to train professionals in meeting the treatment, interventions and service needs of both children and adults living with autism."
* Examine financing for autism services. Under the bill, the Government Accountability Office would "study financing of autism treatment and services, including current public and private insurance coverage for autism treatment and support services, and identify geographic and regional disparities in access to care." The GAO also would make recommendations for financing treatment and care services "to remove both cost and geographic barriers and attain a uniform baseline of coverage across the United States."
* Increase access to advocacy services. The bill would create a program to expand existing advocacy services to help people with autism and other disabilities get the advocacy help they need.
* Establish a center for technical expertise on autism services. The bill would call for the Secretary of Health and Human Services to set up "a National Technical Assistance Center for Autism Treatments, Interventions and Services to serve as a resource for parents and service providers." The center would provide experience in training, research translation and service provisions.
A first-reaction analysis of the Clinton-Allard proposal
Analysis: Though it's tempting to view every action of a presidential hopeful like Senator Clinton through a campaign-season lens and see it as a political ploy, this proposal -- and its inclusion of a Republican senator as a co-sponsor -- is impressive in its reach and timing. It covers a number of areas that families affected by autism have been clamoring for: increased access to services, an effort to raise the quality of existing services, care for adults with autism spectrum disorders. And, notably, it brings to the fore a national examination of how to pay for autism services. This is a question a number of states have looked at addressing, narrowly, by prohibiting health insurers from discriminating against people with autism, for example, or by setting up state task forces to study the issue.
The timing is also interesting. It was only December when President Bush signed the Combating Autism Act (see background here). That law calls for spending more than $900 million over the next five years on autism research and awareness education programs. The Clinton-Allard proposal complements the Combating Autism Act and potentially brings more services to more people -- while continuing to build momentum in Washington for action to help a growing population of disabled Americans.
Neither Clinton nor Allard mention a price tag for their bill, but two others do: it's an estimated $350 million, according to the Autism Society of America, which put out a call to alert your senator to support the proposal (see that here). Also citing that figure is Suzanne Wright who along with her husband Robert Wright founded Autism Speaks. She mentioned the bill and the figure in passing during her appearance March 21 on Larry King Live on CNN. King did a show on autism awareness with Bill Cosby and Toni Braxton, among others. Read a transcript of the program here.
And here's the video clip of Clinton and Allard's announcement, from YouTube:
Tuesday, March 20, 2007
Senator is both an advocate for better autism services and the author of the book "Making Peace With Autism," which describes her experience as a parent discovering about autism and learning by many trials and errors how to make a difference in her son's life -- and the lives of her family which include two other sons. See more about the book, which my family has found helpful, by clicking here.
In her op-ed piece, Senator strikes an exciting and hopeful note by recounting the recent event of her son Nat's asking his first question ("where's my pajamas?"). It's a moment understandable for its import -- asking questions is a key building block for interacting with people, for social interactions. But she also expresses frustration with where to take her energy for her autistic teenager. She writes:
Like the parents of young autistic children, I have hopes for my son -- though others may not. I just know -- at least I hope -- that if we strike while the iron is hot we might end up making a huge difference in his future, his independence. We are not alone. The many families of older autistic children have needs, too. We want support such as home-based therapy and job training for our children. We want housing for them. We want to know that they will get the right kind of care when they are adults. And we want educational strategies for them, because often autistic people bloom late, as my boy has.Read the whole article; it's well-written.
Like the just-released MTV film "True Life: I'm Autistic" this CNN telecast is an awareness exercise for the broad segments of the American public who have little knowledge or awareness of autism spectrum disorders, or what it's like to have a family member with autism. (See more about the MTV show here.)
Larry King's website says this about the scheduled show: "Bill Cosby and Toni Braxton speak out on the epidemic affecting 1 in 150 children. As autism cases soar, what's behind the rise?"
Braxton is a Grammy-winning singer and songwriter who recently learned her youngest son has an autism spectrum disorder. She says on her website that the news prompted her to become a national spokeswoman for Autism Speaks.
Cosby is both an entertainer and an educator. It will be interesting to hear what both have to say to a public who is very interested in them and may not know much about autism.
You can see a press release from Autism Speaks about the April 9 concert in New York by clicking here.
Monday, March 19, 2007
Arkansas is considering forming an autism task force. A marked-up version of the bill, dated March 19, is available online here (PDF file). The Arkansas Legislative Task Force on Autism, if approved under the current language, would examine the state's response to autism spectrum disorders, determine treatment best practices and make recommendations on "more efficient methods" for treatment, how to obtain more federal funding for treatment and special education programs, and ways to change state law to provide more services and special education programs to autistic children. A report would be due by Aug. 31, 2008.
If Arkansas' efforts sound familiar, that's because other states have done this. See articles here on Washington and Kentucky, and a report about Mississippi's considering the same idea.
New Mexico has allocated $3.9 million boost to autism services, according to an article online in The Santa Fe New Mexican. The money goes to the state Department of Health budget for autism services, training and evaluations. Read the March 18 story online here at freenewmexican.com.
New Mexico's legislature is also considering a bill that would prohibit health insurers from discriminating against a patient based on an autism spectrum disorder diagnosis. See coverage on that issue here.
South Carolina is also considering a bill to require health insurers to cover autism treatments, according to TV station WIS-TV in Columbia, S.C. See this brief report, which includes some reporting by the Associated Press and a link to a short video.
Missouri looks to use education construction funds to build a new autism center. The Southeast Missourian newspaper reported March 8 that a $24 million proposal for construction projects at Southeast Missouri State University, that would include a $2.6 million center for autism diagnosis and treatment, has the support of Gov. Matt Blunt and legislative leaders. See the short article here. The Republican governor recently made a point of mentioning the need to boost autism services in his state of the state speech. Read about that here.
Connecticut is considering a proposal to create an autism agency. The Journal Inquirer newspaper reported March 17 that Rep. Christopher L. Caruso, a Bridgeport Democrat supports the idea to create a new agency as a way to make delivery of autism-related services to the state's estimated 2,900 children with autism spectrum disorders. See the story online here.
Finally, there were two items in the news involving people working to support their grandchildren with autism. The BBC reports March 19 about a grandmother who has started Hope House, a school for kids with autism she plans to open this summer in a former hostel. Terri Westmoreland says she was disillusioned with services the school system provided so she took matters into her own hands, including raising money for a program to serve 40 children.
And finally, there is the Grandparents Autism Network, a group that has started up in Tustin, California. The group says on its website:
The Grandparent Autism Network informs grandparents about autism and the medical, educational, legal and social issues that affect their families, enabling them to share how they may improve the quality of life for their children and grandchildren. Activities include social events for grandparents and grandchildren and advocacy efforts to increase support for autism causes.Sounds like a good idea.
Sunday, March 18, 2007
The communications device that Jeremy uses is called Lightwriter -- it's a device that a television reviewer for The New York Times, recapping this MTV show called "a keyboard that talks for you."
Here is a photo from the website of Toby Churchill Ltd., the company based in Cambridge, England, that makes Lightwriter:
Toby Churchill makes a number of different models of Lightwriter, and I can't verify yet whether this is the one used on the MTV documentary.
What is clear, however, is that this Lightwriter fits into a growing industry for developing, manufacturing and marketing technology-based tools to help people with disabilities including autism spectrum disorders communicate.
For example, David Dikter, executive director for the Assistive Technology Industry Association appeared on ABC News recently to discuss an array of products that help visually impaired people read and people who can't speak communicate with others and express their thoughts and emotions. One of the devices he demonstrated was a communications tool made by a company called Dynavox that allows people with autism to interact with others. (It's also marketed to those who are stroke victims, who have cerebral palsy and ALS, also called Lou Gehrig's disease.)
You can view an online video of this presentation at ABC News by clicking here. It's about 7 minutes long.
For more about MTV's "True Life: I'm Autistic" you can see:
* MTV's website for the "True Life" series here.
* Read The Times very positive review here. (It will be available to subscribers only very soon.)
* See background information, including links to one of the families highlighted in the show, here.
I called this article "Notes on Assistive Technologies" because I realize this is just a start, where mentions go to only fraction of the offerings on the market. You can share more information with me about what you have found helpful -- and why -- in your family's life by posting a comment on Autism Bulletin at the end of this article, or by writing to me at michaelsgoldberg AT yahoo.com.
And because many families with autistic kids are strapped for resources, I would just add a note of buyer diligence. If you are looking to buy something, please consider checking out more than one product and ask people who work with your autistic son, daughter or relative what they know about it. Don't buy something based solely on the positive difference you see one product making in one person's life on TV. Check it out with a couple of other knowledgeable people you trust.
Thursday, March 15, 2007
The episode scheduled to show March 18 is called "True Life: I'm Autistic" and it features profiles of three teens with different profiles, all on the autism spectrum. Author and advocate Valerie Paradiz has posted background information on the show which features her 16-year-old son Elijah Wapner, who has Asperger's and has worked as stand-up comedian in New York City. In this piece written a year ago during the filming of the show, Ms. Paradiz explains that she hopes the show will give her son -- whom viewers can see and especially hear during his own voiceover narration -- the chance to speak for himself to a world that doesn't understand autism spectrum disorders. In this article on her website, Valerie Paradiz explains more about the show and publishes a description of the True Life episode from its producers. It's short and to the point, written for a mainstream audience who has heard something about autism but knows very little or nothing: Here it is:
True Life: I’m AutisticAbout 1.5 million Americans are believed to have some type of autism, a developmental disability that impairs a person's social interaction and communication skills. Because of recent news stories about the rate of autism diagnosis rising to 1 in 150 births, this disorder has captured the media’s attention.
Yet to most us, autism is still mysterious, and we tend to keep people with autism at arm’s length. Few of us understand what autism really means, and even fewer know what it’s like to live with.
In this episode of True Life, we get up close and personal with three young people with autism. Each is affected by autism in a unique way (autism is considered a “spectrum disorder” that affects individuals differently and with varying severity). Yet they’re all capable of amazing things.
Jeremy, 17, has autism so severe, he can’t speak, make appropriate facial expressions or make gestures. Because he has so much difficulty communicating, he’s never had any friends his own age. Now he’s learning to use a portable machine that speaks the words he types, and he’s reaching out to peers at his high school. He’s even decided to host a party at his house for the first time in his life. Can Jeremy break through and make friends at his high school?
Jonathan, 19, is an autistic savant – someone who has both a severe disability and an extraordinary talent, like a math or music skill. In Jon’s case, he creates astonishing charcoal drawing and paintings without ever having taken lessons. Lately, though, Jonathan’s been having sudden, mysterious outbursts that are derailing his life and creative ability. Because of his autism, he can’t articulate what’s happening when he has these outbursts. His parents have tried every test and medication imaginable, but nothing has worked. Can Jonathan and his parents stop these outbursts so he can get back to his art?
Elijah, 16, has Asperger’s Syndrome, a high-functioning type of autism that can be nearly invisible to people who don’t know about autism spectrum disorders. Asperger’s affects his ability to process speech and non-verbal social cues, but to most people, Elijah would simply appear quirky. His goal is to become a comedian, but he also wants to hide his autism from people who wouldn’t be sensitive to it. Now he’s going to a comedy festival in Las Vegas, where he’s being pressured to make jokes about autism in his act. Will Elijah find the courage to reveal himself onstage?
Their autism sets them apart. But can they reach through their disability and connect with the world? Find out on “True Life: I’m Autistic.”
Wednesday, March 14, 2007
The process is part of the legal right to a free and appropriate public education afforded children with disabilities under the federal Individuals with Disabilities Education Act (IDEA) of 2004 (with U.S. Department of Education regulations issued in summer 2006).
Wrightslaw.com, the well-informed legal and special education advocacy team of Peter W.D. Wright and Pamela Darr Wright, have reminded their newsletter subscribers about a series of articles related to the IEP process, students' rights under that process and tips for what to do for IEPs. Whether you have a 3-year-old with a recent autism diagnosis and you need to start thinking about special education services or you are not satisfied with the progress your middle school student is making, even though she may be hitting the goals set out for her, these articles are worth scanning.
Because the work of diagnosing and treating autism spectrum disorders is rooted in observed behaviors, writing these performance goals in a precise way, so that it's clear to everyone what a child needs to do to make effective progress -- progress that can be observed (or clear lack of progress if things are not going well) -- is essential. So while these articles are relevant to all all children with disabilities, it's particularly important for parents of kids on the autism spectrum to familiarize themselves with the IEP process and the rules that govern it.
Among the Wrightslaw articles are:
* A good primer on writing effective goals, the benchmarks in your child's IEP that help you assess how the school year goes. See "What You Need to Know about IDEA 2004: Present Levels of Functional Performance & Functional Goals in IEPs," by advocate Pat Howey, by clicking here.
* A useful summary and explanation of the IEP process, with sections on IEP meetings, what's in IEPs, information about reviewing and revising them, school placements and transfers. See "IDEA 2004 Roadmap to the IEP," by clicking here. This additional article includes information about requirements for highly-qualified teachers and research-based instruction, with citations from the federal law.
* Information on draft IEPs, which are documents that school district representatives bring to IEP meetings. They are not binding, but some parents feel they have the effect of cutting off parental input. This article also by Pat Howey, explains why it's important to discuss the IEP before the IEP team assembles to discuss such a document.
It's free to sign up for the Wrightslaw.com newsletter and receive it via e-mail. Wrightslaw does a very good job of informing parents about their children's rights, explaining how to be advocates and also interpreting important court cases. When you see the promotions and ads on their website you will know that they also make part of their living from selling books, videos and seminars. I have read lots of their online articles and find them authoritative, but I haven't had the chance yet to read their books or attend a seminar.
You can find other information about IDEA in the Autism Bulletin sidebar, under "Resources" and "Government Related" headings. If you have trouble seeing any of that, let me know.
Monday, March 12, 2007
Don Meyer, director of the Sibling Support Project in Seattle, wrote that his Seattle-based group provides training and technical assistance to create "Sibshops" and that there are now close to 200 sibling support groups in eight countries. "We'd be happy to talk to anyone who is interested in creating a Sibshop or similar sibling program in their community," he added.
The Sibling Support Project provides this support to families of people with disabilities besides autism. The organization also provides support via an online discussion group for both young siblings and adult siblings of people with various disabilities. You can go to www.siblingsupport.org, or write to the group at: Sibling Support Project, A Kindering Center Program, 6512 23rd Avenue NW, No. 213, Seattle, WA 98117.
Some parents who responded to the earlier article on sibling groups mentioned that their children, older brothers and sisters of kids with autism, said they weren't interested in support groups. That's great, of course, but based on the literature at this Seattle-based project, it might be wise to revisit those answers some time in the future. In the meantime, it could be helpful for all parents who have both "typically developing" children and children on the autism spectrum to check out this article: "What Siblings Would Like Parents and Service Providers to Know." This is a list that was developed by Sibling Support Project participants in an online forum, which includes adults. Among items on the list:
* "The right to one's own life" -- parents and siblings should not make assumptions about the responsibilities of typically-developing siblings "without a frank and open discussion. It's a matter of self-determination.
* "Acknowledging siblings' concerns" -- brothers and sisters "will experience a wide array of often ambivalent emotions regarding the impact of their siblings' special needs. These feelings should be both expected and acknowledged." Noted: most siblings, because they are expected to survive their parents, will have the longest-lasting relationship with the family member who has a disability.
* "Expectations for typically-developing siblings." don't set them unrealistically high. Some siblings "feel that they must somehow compensate for their siblings' special needs. Parents can help their typically-developing children by conveying clear expectations and unconditional support.
* What kind of behavior to expect from typically-developing siblings: typical. That is, they will fight and treat their siblings with disabilities badly, like other kids do. Then comes this quote from the siblings' discussion paper:
When conflict arises, the message sent to many brothers and sisters is, "Leave your sibling alone. You are bigger, you are stronger, you should know better. It is your job to compromise." Typically-developing siblings deserve a life where they, like other children, sometimes misbehave, get angry, and fight with their siblings.
Thought-provoking stuff, no matter what your kids' ages.
Thursday, March 08, 2007
I am trying to form a sibling support group, but I am not having much luck with finding space to hold the group or anyone who will sponsor this type of group out here. I have a 10 year old daughter who is "normal" and my son was diagnosed with Autism, ADHD and Intermittent Explosive Disorder. She feels very alone and like no one understands her and it is heart breaking. Anyone have any ideas of how to get a sibling support group up and running?
Carol posted a comment in response to an earlier article, "What A Child's Autism Means to Brothers and Sisters." She is voicing an issue familiar to families who have a "typically developing" child and another child with an autism spectrum disorder: how do you find places where your child without autism can discuss her feelings in a safe, supported environment?
I've come up with a list of suggestions below. It would be very helpful if you, Autism Bulletin readers, could add your own suggestions to this list by posting a comment on this website, or writing to me at michaelsgoldberg AT yahoo.com, so I can share your ideas (anonymously if you wish).
Some suggestions for finding information about sibling support groups where you live:
Ask other parents, wherever you meet them, including the places listed below. Ask them about the issue of sibling support groups and listen to what they say. Some may know nothing. Others may lead you to the people and places you need.
Inquire at your autistic child's school. What have parents in past years done to get sibling support? Did the school host one? Have other parents found support through agencies that provide autism services to kids on the spectrum?
Check with autism service providers, including those that provide applied behavior analysis (ABA), or places that deliver other kinds of services to kids on the spectrum, such as occupational therapy. Even if the direct service specialist doesn't know, you can ask them to ask around their office, and other families.
Look up autism advocacy and support groups. In Massachusetts, the Autism Spectrum Division of the Office of Health and Human Services provides some funding for seven regional autism support agencies, including money to run sibling support groups. (See a list of the regional support groups on page 2 of this PDF document.)
Seek information at social service agencies. A recent New York Times Magazine story highlighted the sibling support group at the Jewish Community Center in Scarsdale, N.Y., run by a social worker and "fervent 'sibshop' advocate," according to The Times. There must be other similar efforts in other states. (See more about the magazine article here.)
Look into colleges and universities that prepare teachers to work with autistic kids. The demand for autism services is rising along with the prevalence of autism spectrum disorders. (See more on that issue here.) With preparation and support, teachers and teachers-in-training can be good sibling group facilitators -- and learn a lot about autism from these siblings who live with their brothers and sisters on the spectrum. Researchers working on educational models for children on the spectrum have opened schools on campus -- including the Douglass Developmental Disabilities Center at Rutgers, the State University of New Jersey in New Brunswick. They should know something about sibling support groups, where to find them or how to start one.
Ask at advocacy groups. The Autism Society of America has a helpful article online about helping siblings understand what autism means, written by Sandra Harris, executive director at the Douglass Center at Rutgers. Find the article here. The article notes that the well-known advocacy group, New Jersey Center for Outreach and Services for the Autism Community (COSAC) has an active sibling support program. The article also mentions The Sibling Support Project, established in Seattle in 1990, as a national effort "dedicated to the interests of over six million brothers and sisters of people with special health, mental health and developmental needs." See more at www.siblingsupport.org. Notably, this group trains sibling support group facilitators. And it provides support for adult siblings of people with developmental disabilities.
Tuesday, March 06, 2007
The bills come in response to reports describing the use of aversive therapies at Judge Rotenberg Center in Canton, Mass., according to State Sen. Brian A. Joyce, a Milton Democrat and a leading sponsor of the three bills filed March 1. Those reports include one from New York State education officials that raised questions about the safety and health ramifications of the treatments applied to students at the school. You can see a PDF file copy of this report via The Boston Globe's website Boston.com, by clicking here.
The bills as filed would do the following:
Restrict the origination of aversive therapy programs so that only board-certified behavior analysts (BCBAs) can develop them.
Require that BCBAs oversee the implementation of such programs through direct observation and supervision.
Create a state commission to investigate the use of aversive therapy in Massachusetts and the policies and procedures governing their use.
Establish standards for aversive therapy techniques. Joyce's announcement states: "These standards will specify the scope of techniques permissible under statute and regulations, the classification system of behavioral interventions, the format and content of behavioral plans, the policies and procedures governing the development, review, approval, implementation and monitoring of aversive interventions, and the adequacy of procedural safeguards to ensure the health, safety, privacy, dignity and human rights of individuals with behavior plans in place."
Set up a state peer-review board to oversee and approve all aversive treatment interventions.
Define associate behavior analyst as someone who has passed a certification exam, and define behavior analysis as "the design, implementation and evaluation of instructional and environmental modifications to produce socially significant improvements in human behavior through skill acquisition and the reduction of problematic behavior." And define a behavior analysis program as being "based on empirical research" which includes "the direct observation and measurement of behavior as well as a functional behavioral assessment" which uses "antecedent stimuli, positive reinforcement and other consequences to produce behavioral change."
Senator Joyce said in a statement issued March 2: "We have a duty to provide these protections to our most innocent and vulnerable populations -- autistic and mentally disabled children. I am confident that the passage of this common-sense legislation will go far in ensuring that this controversial therapy is only used by qualified individuals, while adding layers of oversight to the process."
The controversial aversive therapy, which few schools offer, has made Judge Rotenberg Center a subject of intense media attention over the past year. Reading the school's own literature (available online via www.judgerc.org) and also by reading and viewing this piece from ABC News Primetime Live, "'Shocking School' Takes on Severe Autism," it's clear that the school's educators believe that severely disabled children who are prone to violent outbursts and self-injurious behavior are better off with techniques that use with electric shock and other aversive therapies than they are taking psychotropic drugs. It's also clear that the school has a community of parents and some students who defend the practices as effective -- indeed, life-altering for the better.
However, there is a lack of research studies validating the effectiveness of aversive therapies as this extensive resource page on the issue from the Wrightslaw special education advocacy website points out. (Wrightslaw shares resources on this issue in the context of the New York State report.)
Further muddying the waters on issues involving this particular school: Judge Rotenberg Center has been the subject of Massachusetts' officials scrutiny over its alleged claims that some clinicians there were psychologists who were not in fact licensed. The state and the school last October reached a consent decree, a kind of enforced settlement by which the school agreed to stop making such claims and the school agreed to pay $43,000 to settle the matter. See information about the consent decree here. The school may have to refund an estimated $800,000 in tuition fees related to this matter, the Associated Press reported March 2. See that report here, via Boston.com.
More information and background on this issue:
From Judge Rotenberg Center:
- You can read part of a research paper, "Use of Skin-Shock As A Supplementary Aversive at The Judge Rotenberg Center," by the school's executive director, Matthew Israel.
- See a description of the program here -- see especially section on "GED" or graduated electronic decelerator.
Other resources and information
New York State Board of Regents memo, March 2006, on policy question facing state on use of aversive therapies. See here.
Massachusetts State Sen. Brian Joyce website.
Readers note: I can't find the text of the three bills cited in this article on the state's Mass.gov website, but they are listed in the Senate docket, which you can see here. The bills are called:
SD01988, An Act Creating a Special Commission on Behavior Modification
SD02033, An Act Creating and Authorizing Level IV Behavioral Treatment Interventions
SD02039, An Act Relative to Behavior Analysts
Quotes in this article come from the text of the bills and from Joyce's announcement, with information provided by the offices of Sen. Joyce and Rep. John Scibak, who is a BCBA.
One last note of interest for Massachusetts readers: One of the other sponsors, Rep. Barbara L'Italien, is the mother of a child with autism.
Saturday, March 03, 2007
Here is a rundown of other important and interesting developments:
The New Jersey Legislature is taking up nine bills related to autism services, with an emphasis on funds for research and adult services, The Asbury Park Press reports on March 3. See the newspaper's story here. See more background on what the lawmakers are thinking here.
The New Jersey Department of Education announced Feb. 20 that it was awarding $15 million in state grant money to 55 local school districts "to establish, expand or enhance public school programs and services for students diagnosed with Autism Spectrum Disorders (ASD)." See the state agency's press release here.
The Florida Autism Center of Excellence (FACE), slated to open near Tampa in August, announced Feb. 28 that it has set up an enrollment hot line for parents to get information about entering the new charter school, according to a press release you can see here. FACE received a $700,000 state education department grant last year to help set up the school, which is a project of Educational Services of America, Inc., a non-profit corporation that develops special education schools around the country. FACE won approval from the Hillsborough County, Fla., school board on Feb. 13, the press release states. More background on the project is available here.
A tragedy involving an autistic teenager in upstate New York has led a state lawmaker, to say he would urge reform in the way the state serves people with autism, the Gannett News Service reported on Feb. 23. A 13-year-old boy died after being improperly restrained in a van while two employees of the O.D. Heck Development Center, near Albany, ran errands for 90 minutes. The boy was a resident of the center. The two workers face second-degree manslaughter charges in the incident, the news agency reported. Sen. Thomas Libous, a Binghamton Republican, told the news agency he would file a bill to create an autism division within the state Office of Mental Retardation and Developmental Disabilities.
Researchers from Scotland published a study in the February issue of the journal Science describing their success in reversing the effects of Rett syndrome, a type of autism, in mice. The New York Times on Feb. 20 was one of several news outlets to highlight the study's results. A short and technical abstract of the paper is available here. Key take-away, as described by Times science writer Nicholas Wade: "This is a surprising result for a neurological disease. Biologists generally assume that if the brain does not wire itself correctly at specific stages of development, the deficit can never be corrected." Wade goes on to write: that the treatment for the Rett mice "would not work in people because it involved genetically engineering the mice before conception." Still, he adds, "the finding may encourage new approaches."
Researchers from the University of Medicine and Dentistry of New Jersey told The Star-Ledger of Newark they believe they found a diagnostic tool that uses urine and blood samples to detect a person's biological risk factors for autism. Read the Feb. 18 article online at NJ.com here. The researchers' tests zero in on how much fatty acids are in a person's blood and urine, and whether a certain gene called GSTM1, is present. Such a test, if successful, potentially would be a big deal because it could yield a method, other than observing and identifying behaviors, for an autism spectrum diagnosis.
Finally, in case you haven't seen it, there's Amanda Baggs, a very articulate video blogger and blogger who posted the video below on YouTube.com that explains, vividly, what her behavior -- that which many people would call atypical, and self-stimulatory -- means to her. This 8-minute video inspired CNN to profile her (see "Living with autism in a world made for others"), and attracted the attention of, among many others, the media consultant and blogger Andy Carvin (the writer of this piece which got my attention).
Thursday, March 01, 2007
For a nonverbal boy, this achievement meant that after years of silence, Dov could reveal his ability to read, could say how he felt about his younger brother, could express desires for certain toys. What makes the account resonate, says reviewer Abigail Zuger, is Iverson's refusal to sugarcoat the ongoing challenges: "Although teenage Dov can now communicate effectively and learn at his grade level, he remains saddled with profound emotional, neurological and behavioral abnormalities" -- a point made in contrast to many media messages that suggest parents should look for miraculous recoveries from autism, Zuger writes.
Iverson also describes her experience bringing from Bangalore, India to southern California Soma Mukhopadhyay and her autistic son Tito, who has learned to write poetry and communicate very well -- as long as his mother is nearby. The book recounts how Soma's style of teaching her son helped Dov.
Iverson probably could write a second book about her experience as an activist and advocate. She co-founded the advocacy group Cure Autism Now (which recently merged with Autism Speaks) and also co-founded the Autism Genetic Resource Exchange, a gene bank for researchers.
To read more about the book, visit StrangeSon.com. The Times posted an excerpt on its website which you can find here (it's a PDF file).