Wednesday, February 28, 2007
1. Autism Takes Stage in Texas School Voucher Debate
2. An Interesting Take on 'The View' Autism Episode
3. Florida Awards $700,000 Grant to Start Tampa Autism Center
4. Very Early Diagnosis Subject of '60 Minutes' Story This Sunday
5. Autism Bulletin's 2006 Autism Advocates of the Year
Source: Google Analytics
U.S. Centers for Disease Control, Feb. 2007 report on prevalence of autism spectrum disorders based on statistics in 14 states, PDF file. This is a state-by-state rundown of the latest study that suggests 1 in 150 children studied have an autism spectrum disorder.
A link to Leo Kanner's 1943 paper, "Autistic Disturbances of Affective Contact," from Pathology. (Courtesy of Neurodiversity.com website.)
The website for "Unstrange Minds: Remapping the World of Autism," by anthropologist Roy Richard Grinker.
P.S. Note to subscribers: I noticed that the poll posted earlier in the week did not get translated to the information from this blog automatically sent to you. If you are interested in seeing it and adding your vote, please see "What Do You Tell E.R. Staff About Your Child's Autism?" by clicking here.
Tuesday, February 27, 2007
1. "Freakonomics," by Steven D. Levitt and Stephen J. Dubner, in which "a maverick scholar and a journalist apply economic theory to everything from cheating sumo wrestlers to abortion and the falling crime rate," has been on The New York Times bestseller list (hardcover non-fiction) for 93 weeks.
2. The Wall Street Journal today published a page-one article about the work of another maverick economist, Michael Waldman of Cornell University, who has posited that too much TV watching can cause autism in young children. See the article "Is an Economist Qualified to Solve Puzzle of Autism?" here for a limited time (The Journal is subscription only).
In the article, reporter Mark Whitehouse uses Waldman's controversial paper as a way to analyze a research technique in economics called the instrumental variable, "a statistical method that, by introducing some random or natural influence, helps economists sort out questions of cause and effect." This research method, the article explains, allows economists to create experiments "that seek to approximate the rigor of randomized trials -- the traditional gold standard of medical research."
Some very interesting theories arise from this research method. For example: if you were drafted to serve in Vietnam, you were likely to earn less than other men who weren't; additional police hired in big cities reduce crime (a study by "Freakonomics" author Levitt); greater competition among school districts leads to better academic results. The Journal article cites all of these studies, and more, by esteemed economists over the past 17 years.
The problem with Waldman's study-- which said, basically that where it rains more, kids watch more TV; and where it rains more and more kids watch TV, there is more incidence of autism cases -- is that it doesn't appear likely to hold up to much scrutiny. As Whitehouse reports, more precipitation could be linked to household mold; does that cause more autism?
Back in October, when Professor Waldman posted his unpublished research study "Does Television Cause Autism?" it got a lot of press-- and as The Journal notes, created quite a bit of angst among parents of children with autism spectrum disorders who were prompted to ask if their struggles with developmentally disabled kids were their own fault. (You can read an Autism Bulletin article, with more information and a link to the study, by clicking here.)
If you have the time, read The Journal article not just because it's well done and interesting, but because the TV-causes-autism theory has some stamina. A Harvard economist plans to test Waldman's results. Your friends or relatives may bring it up.
We have seen time and again how parents of kids with autism spectrum disorders do amazing things -- start a support services center, write groundbreaking books, take their right to defend their children to the Supreme Court, lobby Congress to pass new legislation, fight for society's acceptance. In this context, you won't be surprised to find another correlation: Professor Waldman got interested in studying autism from his personal experience.
His young son was diagnosed with ASD. He later improved so much to qualify as "fully recovered," after a regime that included recommended therapies and a sharp reduction in television time. This led to his research questions, his publicizing a research paper, and his recommendation that parents of young children limit their tots' time in front of the tube.
If only life were that simple.
The case before the Supreme Court is expected to settle conflicting rulings by lower federal courts about parents' rights to represent their children under the Individuals with Disabilities Education Act (IDEA). The Wrightslaw special education law and advocacy website has good background information on these lower court decisions and other aspects of the case which you can see here.
The judges' voices come through clearly in the transcript. Justice Antonin Scalia's questions convey his skepticism that a parent can claim the rights to represent a son or daughter in court, based on the way the law is written. Meanwhile, Justice Samuel A. Alito Jr. asks the lawyer for the Winkelmans:
"How much of a practical benefit would it be for children with disabilities and their parents, if you are successful here, in light of the complexity of the IDEA and the fact that this is an area where some parents are going to have difficulty maintaining any kind of emotional detachment from the litigation?"The Winkelmans' lawyer, Jean-Claude Andre of Los Angeles, noted that parents become "intimately familiar with the relevant law" by the time they reach court.
The Parma, Ohio School District attorney, Pierre H. Bergeron of Cincinnati argued that the child's rights under IDEA are a separate matter than the parents' rights; in his view, the court should distinguish between the two sets of people as a procedural, legal matter. That would preclude parents who are not lawyers from representing their kids in federal court because they were not representing themselves (which is permitted), but rather a separate party.
Justice Stephen Breyer posed questions that boiled down to: well, how can you separate parents from their children as a practical matter in such a legal case? When a child is a minor, with a disability? Who pays for lawyers if they can afford one in such special education cases? Who pays private school tuition or services if the child doesn't get what the family feels is needed? (It would be the parents, of course.)
The Bush administration's lawyer, David B. Salmons, assistant to the Solicitor General, argued in support of the Winkelman's view. Salmons told the court:
"Our position is that parents share in the substantive right to a free appropriate public education under the [IDEA] Act. ... The definition says that the term free appropriate public education means special education services provided, quote, without charge and at no cost to parents. We think clearly the free aspect, again, is first and foremost a right of the parents, because they're the ones that bear the cost."A decision is expected in July.
As an experiment, I am using a tool called Quimble.com to create a quick online survey for Autism Bulletin readers. Vote below. If poll does not appear, go to this site to vote:
Monday, February 26, 2007
Over the weekend, NPR posted an audio recording of the broadcast on the web which you can find here. Find a web page introducing the show here. Read why scientists are intrigued by this research and find links to more information about it and the Autism Genome Project by reading this article from Autism Bulletin.
So under the Individuals with Disabilities Education Act, Jacob's parents sought legal relief to get Jacob the educational supports he need. The wrinkle here is that when they ran out of money for lawyers, Sandee and Jeff Winkelman represented their son themselves -- even though they are not lawyers.
The question before the Supreme Court on February 27 is whether, and under what circumstances, non-lawyer parents of children with disabilities can represent their child in court. (See the Supreme Court website page for the case here. Links to the briefs filed by the Winkelmans and the Parma, Ohio School District are available here, via the American Bar Association website.)
Among those filing briefs siding with the Winkelmans is the Bush administration, which argues that Congress intended to give parents the right to represent their child in federal court if needed, according to The Cleveland Plain Dealer. The newspaper's website has a good writeup of the case which you can see here.
The school district argues that it's expensive for cash-strapped school districts to have to defend lawsuits against amateur litigators. It's also possible for amateur litigators to cause harm to their child's legal rights, the district says.
Of course it's also expensive to hire a lawyer, or pay for the Monarch School's $60,000 tuition bill, as the Winkelmans argue. This passage from a good article about the case on Law.com gives good context for watching the case:
The issue of nonlawyer representation has been hard-fought around the country by desperate parents who say there are not enough lawyers able or willing to take on their costly and complex disputes with local school districts. Circuit courts have split over the issue, setting the stage for high court review.
Meanwhile, a skilled corps of parent-advocates has sprung up to fill the void left by lawyers. As a reward for the parents' zeal, however, some local bar associations have gone after them, claiming they are engaging in the unauthorized practice of law. After negative publicity last year, the Cleveland Bar Association withdrew a complaint against a parent who aided the Winkelmans -- at least until the Supreme Court rules in their case.
Substantively, Parma and other public school organizations are telling the Court that under common law and the IDEA, nonlawyers simply may not represent others in court. Parents untrained in the law, they say, can sometimes harm their children's cases by faulty advocacy. It costs more money to defend against nonlawyer litigators, they add, which stretches the resources of money-starved school districts. "The states never signed up for such a bargain," says Parma's lawyer, Christina Peer of Squire, Sanders & Dempsey, in a brief to the Court. She adds, "Attorneys inject a measure of objectivity often lacking in an area punctuated by emotion."
You can read more background about the case here. The Supreme Court is expected to issue a ruling by July, The Plain Dealer reported.
Thursday, February 22, 2007
The National Public Radio show "Science Friday" plans to discuss this study during its weekly Friday episode on Feb. 23. (More info below.)
According to this summary on the Nature Genetics blog "Free Association," the researchers from the Autism Genome Project Consortium carried out a two-fold analysis:
First they assessed the frequency of alterations in copy number of different segments of the genome, finding an unexpectedly high percentage of the families -- 7 to 12 percent, depending on how the analysis was done -- in which all affected individuals share possibly detrimental chromosomal abnormalities. ... Finally, the authors carried out a 'linkage' analysis of these families, searching for regions of the genome that might be shared by the individuals with ASD. One particular region on chromosome 11 was identified, which has not previously been reported to harbour genes that affect risk of developing autism.
So, to a layperson, what does this mean? First, it provides some important clues for further research. And to judge by the quotes in the British press, autism genetics researchers have been waiting for this kind of clue to guide further inquiries into the genetic basis for autism. This quote, from an article in The Independent, reflects this sense of excitement:
Professor John Burn, Medical Director and head of Institute of Human Genetics, University of Newcastle, said: "This is fantastic news. We have been waiting for the log jam to break on this for several years. There will almost certainly be an interaction between several genes so this one discovery doesn't provide a complete answer but it could be a key step in development for effective treatments as it provides a target for drug development."
Second, there's more information tailored for non-scientists to come. National Public Radio's "Science Friday" show on February 23 plans to discuss this study. You can read a preview of the show here. If you can't listen in live to your NPR station (or you can't get NPR where you live), a recording of the show will be made available on the web.
- You can see a one-paragraph abstract of the article, "Mapping autism risk loci using genetic linkage and chromosomal rearrangements" (available to subscribers only, or available for purchase) by going to the Nature Genetics website here. It's worth noting that the list of contributors to the study cites 67 institutes and research sites.
- Other news coverage includes this piece from the BBC, "Autism gene breakthrough hailed."
Tuesday, February 20, 2007
This is a story worth reading for parents thinking about the effects of their autistic child's disability on their other kids. The writer, Karen Olsson, was able to spend a lot of time with Tarah Perry and hear what her life has been like, how her brothers' development has affected her. She both worries about them being bullied (she has witnessed incidents at school), pesters them to apply deodorant, and can help them adapt to an unsettling situation in public (such as the overstimulating lights in a hotel lobby). Here's a telling passage about Tarah:
All her life, she has been not just their younger sister but their de facto older sister, sometime translator and mom's right hand. ... When they were young, Jason and Justin spoke only about 50 words, and those in odd, high-pitched voices. But according to Tarah's mother, Jennifer: "It was like she knew what they wanted when I didn't, and she would help me figure it out. Tarah was mother hen to these boys. I probably shouldn't have put her in that position, but oh, my God, she helped me so much."The story goes on to say that research into the effects of disabled children on their typically developing siblings is inconclusive. Some kids are affected negatively, others are influenced positively -- to be more sensitive to people who are different or disabled, for example. And others, there is no discernible difference. Those general trends apply to families with an autistic child, however, The Times notes that autism is a particularly challenging reality for siblings since it is a difficult condition to understand for anyone, not just children, and the behaviors of the child with autism can emerge without warning. Autism also can preclude or limit the social interactions that make sibling relationships so important while growing up. (There's also the fact that a child's autism, depending on the severity and stage of development, can influence an entire family's routine, such as trips outside the house.)
So while research about sibling support groups is inconclusive, the story takes readers on a visit to one at a Jewish Community Center in Scarsdale, N.Y., which suggests that giving children the chance to talk about a sibling's sometimes frustrating, confusing disability is a good thing. At the "sibshop," a 6-year-old girl named Ruthie explains that her brother is bothered by beeping noises. It troubles her, she says, "because I don't want my brother to be like this, and it makes me feel sad that he has to be afraid of that." The group chimes in that she can't blame herself for her brother's behavior. "I only help when I need to help," says a boy in the group.
You don't have to look very far for that poignant sense of responsibility that siblings can feel toward autistic brothers and sisters. All you had to do was watch the Feb. 18 episode of "Extreme Makeover: Home Edition" during which the TV crews rebuilt the home of the O'Donnells, a family with six children, including five on the autism spectrum. Who was crying the most when the crew showed up at the family's house in Austin to begin the makeover process? It was Meaghan, the 9-year-old who is not on the spectrum, and works hard, the episode explains, to help her mom.
The Austin American-Statesman visited the O'Donnells to watch the show with the family. You can read that story online here. (Registration required.)
Siblings of young children with autism also can play a pivotal, positive role in home-based programs using the principles of Applied Behavior Analysis. Read a recent Autism Bulletin story, "What Makes An Effective Home-Based ABA Provider," by clicking here.
Friday, February 16, 2007
The report focuses on research at the M.I.N.D. Institute at the University of California, Davis. Here's a quote from the "60 Minutes" report:
Psychologist Sally Rogers, is a pioneering autism researcher who sees hope in early diagnosis. It's not a cure, but she believes early treatment with younger and younger children — while the brain is still developing — can make a big difference in the life of an autistic child. "[By using early treatment] we are certainly creating new connections in the brain," she tells Stahl. "We don’t know how to touch the biology of autism. But I do think that the behaviors associated with autism can be reduced to the point where they are not obvious anymore."
Stahl says that the children she saw who had this early diagnosis followed by intensive one-on-one services showed marked improvement in their behavior and communication. The problem frustrating researchers, however, is the difficulty in identifying what it is that anticipates the later onset of autistic traits in these babies and toddlers. "They don’t know what causes [autism spectrum disorders] yet, and they are having trouble getting this early diagnosis pinned down," Stahl says.
Stahl notes in a second video snippet that most kids receive an autism spectrum disorder diagnosis by around age 5. (That coincides with the latest 14-state study released by the Centers for Disease Control, based on data reported in 2002. For more background, see here.)
The M.I.N.D. Institute posted a press release on its website (see it here) about the "60 Minutes" story, which gives more background on the research going on there into early diagnosis. It also says that parents are key to delivering services to these very young children in cases where waiting-lists for services are long:
After "60 Minutes," check out "Extreme Makeover: Home Edition"
The early intervention study — part of a M.I.N.D. Institute partnership with the University of Washington Autism Center — enrolls very young children who have been diagnosed with autism. There can be a waiting period between a diagnosis and community or school-based treatments. In this treatment program, parents are taught to intervene in the home right away, while they wait for other services to begin. While the study is in its initial phase, Sally Rogers, a professor of psychiatry and behavioral sciences and principal investigator on the study, is thrilled with the early outcomes.
“Parents are very capable therapists,” she said. “Raising a child with autism takes so many different skills. I try to facilitate the parents' own abilities, showing them how to use specific types of play and interaction techniques to increase their children's enjoyment and engagement with them, their gestural communication and language.”
Over the course of several weeks, parents learn to build their children's repertoire of adaptive play and interaction skills, thereby reducing the use of challenging behaviors — such as tantrums — to attain goals. Rogers added that the family-delivered interventions help bridge gaps in services and increase the number of hours each day the child is engaged in learning opportunities.
“So many families of children with autism do not have access right away to enough intervention — or to intervention at all,” she said. “Teaching parents to use effective techniques throughout their daily lives with their children helps parents begin intervention immediately after diagnosis and allows them to continue to do so even after their child enters other kinds of programs.”While having parents deliver play- and language-based interventions in the home has a long history, Rogers' study is unique in that it examines the effects of parent intervention very early in the disorder — by or before the second birthday and as soon as autism symptoms are identified. Children at this age may be even more responsive to interventions than older preschoolers, and parent training helps create a home environment that is optimal for fostering the social and communicative development of young children with autism.
Would you believe that after "60 Minutes" airs on CBS, the ABC show "Extreme Makeover: Home Edition" has picked a family with five -- yes five -- children on the autism spectrum for a home makeover? Here's information posted on the show's website:
Sunday, February 18, 8/6c
The only documented family in the U.S. with five autistic children will receive a much needed home. Country music star Trace Adkins performs at a benefit for the family.
Thursday, February 15, 2007
It wasn't until he was 25 years old that Tammet learned he has Asperger's syndrome, a high-functioning form of autism spectrum disorder. As The New York Times points out today in a profile of Tammet, he "has made a difficult and self-conscious journey out from his own mind." He has learned to carry on a conversation, and to try to look people in the eye without staring at them. You can read the feature on Tammet, "Brainman, At Rest In His Oasis," at The Times website here.
The "Brainman" of the story headline echoes the title of a one-hour documentary that features Tammet and his skills. You can see a video clip here, via the Google Video website. This clip shows Daniel meeting Kim Peek, the man on whom Dustin Hoffman's character in "Rainman" is based. This clip features more about Kim and his amazing reading comprehension and memory; but notice how Daniel calmly interacts with both Kim and his father in this 4-minute clip. Then read this nugget from The Times article, describing his one-on-one interview with a reporter:
Not so long ago, even a conversation like this one would have been prohibitively difficult for Mr. Tammet, now 28. As he describes in his newly published memoir, "Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant" (Free Press), he has willed himself to learn what to do. Offer a visitor a drink; look her in the eye; don't stand in someone else's space. These are all conscious decisions.The book, which has received good reviews in Britain, is a brisk-seller on Amazon.com after Tammet was featured in a "60 Minutes" interview last month. (See a clip at CBS News here.)
Tammet has his own blog, Optimnem, which lately reads like any budding celebrity's catalog of media mentions and public appearances. This passage from an entry titled "Public Speaking" represents something all parents of kids with a disability can appreciate:
Since the launch of Born On A Blue Day this past summer I've been invited to speak in a wide range of places. I've ... spoken in front of both a few dozen people and several hundred, in schools and libraries and theatres.
I have quite a quiet voice so the first thing I always have to remind myself to do is speak up. I introduce myself and my book and talk about my life. Afterwards I'm asked all sorts of questions by members of the audience.
The most enjoyable part of this for me is speaking in schools for children with special learning needs, including autism. The parents and teachers who attend my talks are always very complimentary about what I have to say.
My main message in them is that difference needn't be disabling, that it's ok to be different and that everyone is unique in some way and should feel it possible to live out that uniqueness. When we do that, autistic or not, we give ourselves the chance of happiness.
Wednesday, February 14, 2007
As The Las Cruces Sun-News notes in this article, an amendment to the bill made on the Senate floor prohibits experimental treatments from being covered; the newspaper reports this was made as a compromise with the insurance industry.
While the vote was overwhelming -- one state senator said there is a three-year wait for diagnostic services at the University of New Mexico Medical Center, then another long wait for treatment -- opponents noted its uncertain cost.
Of course, with debates about health care policy and insurance coverage, it's not a matter of costs going away -- it's a matter of who is bearing the costs, or in this case whether people with autism spectrum disorders (ASD) get access to services at all. A fiscal impact report on this bill stated:
[Department of Health] reports direct medical costs for a child with ASD average more than $29,000 per year and direct non-medical costs from $38,000 to $43,000 creating financial hardship for individuals and families whose insurance coverage excludes ASD.In New Mexico, this scenario applies to approximately 2,000 children under 18 years old, according to the fiscal impact report.
It's quite early to mention the 2008 presidential campaign, but it's worth noting that New Mexico Governor Bill Richardson has declared his intention to seek the Democratic nomination (see his exploratory committee website with the definitive-sounding "richardsonforpresident.com"). So for autism advocates, the fate of this bill could be one way to gauge Richardson's views on autism issues. (Of course, that's if this bill wins approval by the New Mexico House of Representatives.)
The health insurance issue in other states
Other states have also looked at health insurance practices related to autism services. Recent Autism Bulletin coverage of health insurance and autism services:
A New York Assemblyman filed a bill to prohibit health insurers from discriminating against autism-related service requests. The bill filed in January also would exclude experimental treatments. See "New York State Bill Would Make Health Insurers Pay for Autism Services."
Also in January, a New Jersey court ruled that the administrator for state employees' health insurance acted illegally when it denied coverage for autism-related treatment to two children with ASD. See "N.J. Court Rulings: State Workers Health Insurance Covers Autism Services."
Tennessee passed legislation with a similar spirit to that cited in New Mexico. See "A Step Forward for Autism Treatment in Tennessee," from July 2006.
Tuesday, February 13, 2007
The autism prevalence study released last week by the Centers for Disease Control added urgency to the autism services issue, Assembly Speaker Joseph J. Roberts, a Camden Democrat, told the newspaper. The CDC research put New Jersey's autism prevalence at one out of every 94 children -- the highest of the 14 states included in the study. Taken across all 14 states, the study put autism prevalence at 1 in 150 children -- higher than the previously used rate of 1 in 166. (You can read more background on the study here and why Alabama specialists believe their autism rate in the CDC report was artificially low by clicking here. You can see a copy of the study in a PDF format by clicking here.)
Roberts said he expects to file some of the bills next week. The research bill would add $4 million a year to research and clinical funding grants, The Record reported. He told the newspaper:
"I'm like everyone else in New Jersey in that I know so many people who have had family members, particularly children, diagnosed with autism. We may be unclear in terms of why we have ranked with the highest documented cases of any state -- it could be we're doing a better job detecting and reporting -- but at the very least it's a wake-up call for action."
Advocacy groups such as the New Jersey Center for Outreach and Services for the Autism Community (COSAC) praised the movement toward legislation. Last fall, COSAC published a report, "Meeting the Needs of Adults With Autism: A Blueprint for the Future," which you can find online here (a PDF document). One of its recommendations, the task force to identify the services needs for adults with autism, is part of the package of bills cited above.
The 26-page COSAC report is a good document for parents and families who have an adult or teenager with autism, as well as those who are thinking ahead to the future. Think of the New Jersey report as a model and ask what is happening in your state.
The COSAC report cites the need for individualized services for people with autism -- services that evolve as the person changes over time -- to help them live in community-based settings and find suitable employment; the need to better organize the existing quilt of services and supports, and make these easier to understand for families of people with autism; the need for more trained service providers; a way to get respite care for families; and to better harvest available federal dollars to pay for these services.
Among the statistics cited in the COSAC report: the population of school-aged students with autism in New Jersey was 2,355 in 1999. The number in 2005: 6,665.
I expect to find more information when lawmakers file the bills in the New Jersey Assembly and will post updates.
Monday, February 12, 2007
The state Senate is due to consider an autism task force bill that has already passed the House,
The Northeast Mississippi Daily Journal reports Feb. 11. (You can see the story here.) The newspaper quotes a leading sponsor of the bill, Rep. Noal Akins, an Oxford Republican, who cited the importance of the issue to him personally: he has an autistic grandchild. "You don't realize how many people have family members affected by this. This is a growing problem," Akins tells the newspaper.
Autism Bulletin readers will recall that recently issued reports by autism task forces in Washington and Kentucky have identified what their states should do to improve the diagnosis and treatment of people with autism spectrum disorders. Read about Kentucky's recommendations here, and see an article about Washington State's task force here.
The language in Mississippi House Bill No. 1267 sets up a panel that includes three parents of children with autism, along with one school board member, a special education director, representatives from state education and mental health agencies, three autism services providers, two pediatricians and one University of Mississippi Medical Center doctor who works with autism patients.
If the bill passes as now written, here's a rundown of its assignment to assess needs and existing services for people with autism and autism spectrum disorders (ASD):
- Review the best practices of other states with regard to educational, medical and early intervention services provided to individuals diagnosed with autism or ASD and identify the best practices of other states;
- Review the standard of services provided by local Mississippi school districts and early intervention programs to individuals diagnosed with autism or ASD, identify any additional potential funding sources for school districts, and identify guidelines for measurable educational and instructional goals that can be used by members of the education community for serving children with autism or ASD;
- Assess the medical availability of services currently provided for early screening, diagnosis and treatment of autism and ASD and provide recommendations for enhancing medical services;
- Identify the role of higher education in developing a workforce in Mississippi possessing the skills necessary to assist individuals with autism or ASD in medical, educational, and vocational efforts or in providing additional services associated with autism or ASD;
- Evaluate and identify any and all additional relevant information and make legislative recommendations regarding the development and implementation of a continuum of educational and medical services for individuals with autism or ASD; and
- File a report with those standing committees of the Mississippi State Legislature and with those state agencies having jurisdiction over specific recommendations of the task force, not later than December 1, 2007.
If approved, the task force is supposed to start work by April 1.
Here is a link to the Mississippi Legislature's website. I found the text of the bill, sponsored by Akins and six other House members, by clicking on "bill status text search" and doing a text search on "autism."
Sunday, February 11, 2007
The Centers for Disease Control's latest study on the prevalence of autism spectrum disorders collected data in 14 states. Researchers studied 8-year-olds born in 1994, and age of diagnosis is one of the pieces of data they collected. The CDC study (a PDF version is available by clicking here) showed that the median age range of earliest reported autism spectrum diagnosis was 4 years, 1 month in Utah, and 5 years, 6 months in Alabama. Here is the 14-state list:
State: Median age of ASD diagnosis
Utah: 4 years, 1 month
North Carolina : 4 years, 5 months
West Virginia: 4 years, 6 months
Wisconsin: 4 years, 6 months
New Jersey: 4 years, 7 months
Missouri: 4 years, 8 months
Georgia: 4 years, 10 months
Pennsylvania: 4 years, 10 months
Arkansas: 4 years, 11 months
Maryland: 5 years
Arizona: 5 years, 3 months
Colorado: 5 years, 4 months
South Carolina: 5 years, 4 months
Alabama: 5 years, 6 months
Reading these numbers is heartbreaking because they seem so high. It's important to note that this data is from 2002 and that they represent median numbers (half of the diagnoses are earlier than the age cited, half are later). Still, I wonder if the ages for median diagnosis are different after 2002, are earlier now that there's been more awareness of autism, among medical professionals, educators, the media, society in general. If anyone has seen more recent data or research on this topic, let me know and I will share it.
The chart above shows the prevalence of autism spectrum disorders in 8-year-old children studied in 2002. According to the CDC's most recent autism prevalence study, Alabama has many fewer children with autism than 13 other states included in this new study. Experts there caution that not all Alabama kids are being counted. (chart source: Centers for Disease Control)
The day after the Centers for Disease Control released new data on the prevalence of autism spectrum disorders showing that Alabama had the lowest rate of autism among children in 14 states studied, specialists in Alabama meeting at an autism conference said they were skeptical of the results because the data doesn't include information from school districts.
"We knew right away that those rates seemed low," said University of Alabama child psychologist Laura Klinger, who participated in a statewide autism conference Friday at the University of Alabama. "I asked everyone to raise their hand if they thought Alabama's autism numbers were half of everybody else. Nobody raised their hand," Klinger told the Associated Press. You can read the AP article here, via the website for a Birmingham, Ala., Fox TV affiliate.
The Centers for Disease Control (CDC) on Feb. 8 released new data on the prevalence of autism spectrum disorders in 8-year-olds born in 1994 based on a study in 14 states and found that about 1 in 150 of the children had some form of autism. That ratio is higher than the widely quoted estimate of 1 child in 166 having some form of autism, based on an earlier study. (Read more background on the latest study here. A PDF file that includes state-by-state summaries and the chart above is available from the CDC's website here.)
The CDC's results indicate that the prevalence of autism diagnoses in Alabama is 3.3 cases per 1,000 children, while the average across the 14 states studied showed a prevalence of 6.6 cases per 1,000 children.
The Associated Press story reported that Alabama medical professionals "said state's numbers were low because researchers had access only to health department records, while most of the other states allowed use of education department records as well. They said Alabama also has fewer autism programs than the other states, limiting the information available. Alabama's autism rates are probably close to the national average, the medical specialists said Friday."
Alabama education officials cited privacy laws in not allowing access to their records, the Associated Press reported. Russell Kirby, a University of Alabama at Birmingham professor who organized Alabama's data collection, told the news organization: "We're fairly well convinced that we missed a lot of cases because of our inability to review records in schools. If we had been able to, the feeling is our numbers would be right in the range that other states had found."
One last note from the AP story: A behavioral scientist who helped author the CDC study said three other states (Missouri, Wisconsin and Pennsylvania) also didn't allow access to school records. But the scientist said the numbers in those states "were still higher than Alabama's because those states had more autism programs and researchers were able to use that information to supplement health records."
Thursday, February 08, 2007
That is higher than the previously, widely-quoted figure of 1 in 166 children, which was based on a study in six states of 8-year-olds born in 1992. The CDC said it focuses on 8-year-olds because most children with an autism spectrum disorder are identified by this age.
The results of this study suggest, when extrapolated nationwide, that there are 560,000 children and young adults with an autism spectrum disorder in the United States, according to a story published tonight by the Associated Press. See the story posted on The New York Times website here.
Government scientists cautioned against creating a national figure yet, because their data is new and the studies so far do not include big states such as California, Texas and Florida.
You can see a web page the CDC has set up, with links to documents, by clicking here.
There were some differences in the results in the 2002 study (children born in 1994) among the 14 states examined (Alabama, Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah, West Virginia and Wisconsin). A media advisory fact sheet published by the CDC shows these points about this group:
- The study looked at approximately 10 percent of U.S. eight-year-old children (i.e., children born in 1994), from 14 states - Alabama, Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah, West Virginia and Wisconsin. A total of 2,685 eight-year-olds were identified as having an ASD.
- ASD prevalence among eight-year-old children was 3.3 per 1,000 (Alabama) to 10.6 per 1,000 (New Jersey). But, 12 of the 14 sites had a closer range of 5.2 to 7.6 per 1,000 children (average across all 14 sites was 6.6 per 1,000 eight-year-old children).
- In 2002, four sites (Alabama, Missouri, Pennsylvania and Wisconsin) relied on information from health sources. On average, the prevalence was lower in those sites than in the other 10 sites that combined information from health and education sources. In both study years, many ASD cases were found through education sources alone.
- ASD prevalence was higher among boys than among girls, ranging from more than three to more than six boys for every girl with ASD.
- Boys: 5.0 per 1,000 (Alabama) to 16.8 per 1,000 (New Jersey)
- Girls: 1.4 per 1,000 (Alabama) to 4.0 per 1,000 (New Jersey)
- ASD prevalence among white non-Hispanic children ranged from 3.3 per 1,000 (Alabama) to 12.5 per 1,000 (New Jersey). For black non-Hispanic children, ASD prevalence ranged from 3.4 per 1,000 (Alabama) to 7.7 per 1,000 (New Jersey). Among Hispanic children, it ranged from 0.3 per 1,000 (Wisconsin) to 9.7 per 1,000 (New Jersey).
- The median age of earliest ASD diagnosis ranged from four years, one month (Utah) to five years, six months (Alabama). But for 51–91 percent of children with an ASD, developmental concerns had been recorded before three years of age.
Wednesday, February 07, 2007
"Fact: no link of vaccine, autism" is the headline to an op-ed in The Philadelphia Inquirer this week by Arthur Caplan, professor of bioethics at the University of Pennsylvania, and co-director of the Ethics and Vaccines Project there. Caplan calls the autism-vaccine theory a myth and writes:
This urban legend has had very real - and terrible - consequences. It has led, and continues to lead, many parents to avoid getting their kids and themselves vaccinated against life-threatening diseases. The failure to vaccinate has caused many preventable deaths and avoidable hospitalizations from measles, whooping cough, diphtheria, flu, hepatitis and meningitis. And fear of vaccines puts each one of us at risk that we, our children or grandchildren will become part of a deadly outbreak triggered by someone whose parents avoided getting their child vaccinated for fear of autism.You can read Caplan's article here. It appeared Feb. 6, just two days after The New York Times Book Review assessed the new book "Vaccine: The Controversial Story of Medicine's Greatest Lifesaver," by Arthur Allen. In this review, David Oshinsky, the author of the Pulitzer Prize-winning history work "Polio: An American Story," says that Allen has written a "splendid book" that aptly captures the risk-reward calculus that has always been part of the administration of vaccines since Edward Jenner successfully immunized a child against smallpox in 1796 England.
Recent research on many fronts in medicine and science has nailed the coffin shut on the mercury-in-vaccines-causes-autism hypothesis. The connection is just not there. Perhaps the key fact, which has garnered little attention, is that thimerosal has been removed from vaccines in this and other countries for many years, with no obvious impact on the incidence of autism.
Allen's book recounts the religious, economic and other arguments against the smallpox vaccine (Napoleon loved it for his troops), the book reviewer says; current anti-vaccination sentiments have their roots in "the general fallout from catastrophes like Watergate and Vietnam, which undermined institutional authority across the board. ... The public's portrait of a medical researcher had turned from the selfless and independent [Jonas] Salk working on behalf of children to that of a lab-coated lackey from a drug giant conspiring to hide the dangers of products that are slickly marketed and wildly overpriced." The reviewer concludes:
To a large extent, says Allen, this antivaccination impulse is fueled by an ignorance of the past. Vaccines have done their job so well that most parents today are blissfully unaware of the diseases their children are being inoculated against. The end result is a culture that has become increasingly risk-averse regarding vaccination because people have greater trouble grasping the reward.
The problem appears to be growing. As more children go unvaccinated in the United States, there has been a rise in vaccine-preventable diseases. Meanwhile, fewer pharmaceutical companies are now producing vaccines, citing the high cost of testing, diminishing markets and a fear of litigation. For Allen, a reversal of these trends will require something long overdue: a frank national discussion about the risks and benefits of vaccination. His splendid book is a smart place to begin.
Autism is not mentioned in the review of this book, but we know it's on the author's mind. Last month, Arthur Allen penned one of several stories that picked up a thread in the book "Unstrange Minds," by anthropologist Roy Richard Grinker, to argue against the idea of an autism epidemic. You can read more about that issue here.
Scientists are doing more than writing histories like Allen and citing studies to argue in favor of the public health benefits of vaccines like Caplan. A team of researchers from the Stanford University Medical School just published a study in the February issue of Nature Reviews Neuroscience on the way the media covered news of scientific research and discoveries about autism. The researchers said they found a disconnect, as Stanford reports on its website:
While 41 percent of research funding and published scientific papers on autism dealt with brain and behavior research, only 11 percent of newspaper stories in the United States, United Kingdom and Canada dealt with those issues. Instead, 48 percent of the media coverage dealt with environmental causes of autism, particularly the childhood MMR vaccine for measles, mumps and rubella that was once linked with autism in a widely refuted study. Only 13 percent of published research was about environmental triggers of autism.You can read an abstract of the study, "Interacting and paradoxical forces in neuroscience and society," by Judy Illes, Joachim Hallmayer and Jennifer Singh here, and the Stanford press release here.
The researchers suggest is that it's difficult to get the message out when the media doesn't prioritize coverage of issues the same way that scientists do. So it's incumbent on people like Caplan and Allen to bang their drums of scientific and public health advocacy. Illes, Hallmayer and Singh might say that they can't count on the media to do it for them.
(One interesting aside about the Stanford paper: it notes that media coverage about the 1998 paper by Wakefield eventually led to studies that refuted his findings and cited the safety of vaccines. And as Caplan notes in his newspaper column, it also led to the removal of thimerosal from vaccines. If it were not for the media coverage of the autism-vaccine controversy, one could ask, would these things have occurred? Would the drop in vaccinations be even more precipitous?)
Still, even with all the scientific research surrounding this issue, it can be difficult to take one's child to the doctor's office for a shot. Kristina Chew, who is a PhD and blogs about her life as the mother of an autistic son, wrote about this difficulty in her blog Autism Vox on Feb. 6:
Vaccine” and “autism” had become for me—have become in the public psyche—not merely linked. These two words, which have nothing intrinsically to do with each other, have become equated, and because of coincidence, of a correlation that seems to contain a clue to causation: An 18-month-old child receives her or his immunizations. An 18-month-old child is noticed to not be playing in varied ways, or interacting, or speaking. The parents know they have “done everything” to ensure their child’s health and development, have followed the advice of the pediatrician exactingly, and then some, so it must be some external agent, some mysterious force, that has caused this terrible change in a child.So earlier in her son's life, she demurred from having him vaccinated. Later, when it came time recently to enroll her son in a new school, she took him for his vaccine shots.
I think, that is, it is possible to understand why so many parents believe in a vaccine-autism link. What I am trying still to understand, is how to dispute such a link; as Professor Caplan’s op-ed suggests, appeals to the evidence of science have yet to be effective.
Tuesday, February 06, 2007
Now this is a modest line item in a big state budget. And you have to wade through many other issues -- a proposed sales tax hike, a higher tax on oil companies doing business in Pennsylvania, a health care plan, property tax relief and education spending among them -- before you find the autism services bullet point. But it does represent a 65 percent increase over the current fiscal year, according to the Democratic governor's statement.
For parents and families of people with autism, the budget plan is a big deal, according to the Pittsburgh-based group AutismLink.com. (Read more about AutismLink, the group which opened the Autism Center of Pittsburgh, here.) The group issued a bulletin to its e-mail subscriber list with the statement that said in part:
This is indeed a momentous occasion -- we finally have a home. Today, Governor Rendell and Secretary [of Public Welfare] Estelle Richman announced the Office of Developmental Programs which will house the Bureau of Autism Affairs. What's more? WE HAVE A BUDGET! ... Thanks to all of you who responded to our rallying cries to write to your legislators. Our efforts have paid off. Things will change for the better in Pennsylvania under the leadership of Nina Wall Cote.It's not surprising that the autism advocacy community in Pennsylvania would be pleased with Nina Wall Cote's involvement. In 2005, Gov. Rendell announced the state would dedicate $3 million to improve diagnostic and treatment services for people with autism. (Read a statement here.) At that time, Cote was named the state's first director of autism services. Now she will get a budget if Rendell's proposal wins approval.
Another reason for optimism: The Pennsylvania House recently elected a Speaker whose nephew has autism and who has identified autism services as a priority. (See story here.)
The Associated Press reports today that the Republican Senate leadership in the state legislature is looking askance at Rendell's proposed sales tax hike, among other things. (Read the news story here, via The Times Leader of Wilkes-Barre.)
Sunday, February 04, 2007
Parents are central to an effective home-based program. Parents are not just advocates for their kids, Celiberti said. "They are historians of their kids' lives, and they can become even more informed, and play an active role in the acquisition of skills," Celiberti said. They report to ABA providers on what happens at home when the providers aren't there. And they can learn how to model appropriate interactions for other family members (think grandparents, friends, other family members); they can show others what to do, how to respond (or not respond) so that they reinforce positive behaviors and refrain from responses to a child that reinforce undesired behaviors.
The provider-parent relationship can come with built-in challenges, Celiberti said. Sometimes service providers have to deal with misconceptions about ABA (the visiting grandmother who objected to the "dog training" exercises her grandson went through was one example). And while parents as a group have never been more sophisticated as consumers of autism services, they can be susceptible to others' objections. A growing array of ABA alternatives, including medical treatments that offer quick results, can distract them. And the challenges of having a kid on the spectrum -- managing the case, juggling many visiting providers at home, treatment decisions, financial stress -- combined with other facets of life such as other children in the family, aging parents, job-related issues and maintaining a marriage -- can combine to make parenting a tough role.
He laid out 10 strategies for parents to enhance their relationship with ABA providers:
- Build a working understanding of behavioral terminology, so they don't sound off-putting to parents. Resources to help include the Association for Science in Autism Treatment, behavior.org, the website of the Cambridge Center for Behavioral Studies, and a group within ABA International called the Autism Special Interest Group, which publishes an online consumer's guide to ABA services.
- Understand that your history with past providers can color a family's attitude and approach to a new provider
- Communicate concerns efficiently, clearly and early. Don't wait for problems to fester.
- Make feedback constructive and balanced.
- Share information on cultural matters when needed. (Religious observances for example.)
- Expect data-driven decision-making from all providers. What works when depends on what the evidence shows. (This was a key take-away from the conference, as other dispatches here will show.)
- Tell ABA providers if you (or your spouse) can't take data, so an ABA provider can make alternative arrangements.
- Be open and honest if you are taking part in alternatives to ABA, including biomedical therapies. An open dialogue is essential, Celiberti said.
- Network with other families and share experiences and resources with them.
- Understand your legal rights and how to best advocate for your child. Celiberti recommended Wrightslaw as a good online resource.
Even with these challenges, a sibling's involvement in a home-based ABA program can be highly motivating for an autistic child. "Siblings can be excellent role models," Celiberti said, and they can have friends who can increase a base for important peer interactions for their autistic sibling. Siblings can participate in ABA sessions, by receiving initiations of communication, by modeling a desired response or behavior. They can help show how to take turns, play cooperatively and develop conversational skills.
In his presentation, Celiberti said what he called positive characteristics and negative characteristics of ABA providers.
Positive characteristics mean ABA providers:
- are up-to-date on best practices
- demonstrate a well-developed repertoire of skills (they don't handle every situation the same way)
- can model teaching interactions
- consider the age-appropriateness of skills being targeted
- evaluate the effectiveness of their interventions
- are sensitive to parents' perspectives and the needs of the family
- have the communication skills to give and receive feedback
- prepare parents for the next treatment setting for their child
- are willing to address broader concerns, such as their child's participation in religious observances, and bed-time issues.
- reliance on one teaching tool or method
- slow response to stagnant performance or new instances of challenging behaviors
- act defensively when parents ask questions about services, service provider competencies or recommendations
- act to intimidate or patronize parents, or others on a treatment team
- disparage others in the autism field
- engage in unethical behavior, such as coercing a parent to give consent to videotape a treatment session in exchange for services.
Lastly, ABA International, a non-profit entity, is making both a webcast of the conference sessions available online for a fee, and also plans to produce a DVD version of this conference. Organizers said it would be available, again for a fee, in March.
Thursday, February 01, 2007
Barbara Fischkin, a writer and mom of a 19-year-old son with severe autism, wrote a down-to-earth essay about her life in reaction to the show. Without a note of self-pity, Fischkin touches on both the challenges her son and her family face -- and by extension many families around the country encounter with access to limited services. You can read her essay via The Huffington Post, by clicking here.
In her essay, Fischkin recounts having to stop on a family trip in New York City to help her son change his clothes. A cop drives by, stops. She tells him: "Autism. Toileting accident." The officer drives away. Quickly.
In a symbolic way that is what it felt like when I watched The View this morning. That Rosie was looking at the problem and then, speeding away from the real issues involved.
She didn't talk about the controversy over the causes of autism; a controversy that is so central to the notion of an epidemic and the hope for a cure. Is it the mercury in vaccines - not the vaccines themselves, that is not what anyone is saying - or some other environmental toxin?
She noted how expensive it is to raise a child with autism. But didn't say why. Not in any substantive way.
And by raise, did she mean "raise" or "educate?" Did she mean it costs school districts a lot of money because so many of them -- ignoring studies, anecdotal evidence and common sense -- spend a fortune busing their kids miles, even hours away, when they could be educating them for less money and with better efficiency in local schools.
Sometimes miles away means an institution. And institutions, whether they are good ones or not, cost a lot of money.
Or did Rosie mean it was expensive because autistic kids break a lot of things?
Or because they often need new mattresses?
Or because they throw things down the toilet?
Or because neither the school districts, nor the local or state or federal governments subsidize to enough of an extent what most parents really need to keep going: A meaningful rest on a regular basis and money to pay and keep the really good teachers and aides who work when the school day, or the school subsidies, run out.
Well Rosie did say she could do many more shows on autism.
I hope she does.