I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at firstname.lastname@example.org
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Tuesday, August 31, 2010
Scholarships in Oklahoma
Monday, August 30, 2010
Autism Alphabet Soup
Special education teacher Pam Downing writes in The Brownsville Herald:
"Abby" walked into the classroom with her 6-year-old son "Ian". The teacher had asked her to come in to discuss an annual plan for her son’s education. The boy’s annual ARD (Admission, Review and Dismissal) was due in a week. The teacher had sent home a draft individual education plan (IEP) for her to review. As Abby sat down, she turned to the teacher and said, "This is almost fifty pages long. I don’t understand it. Why is it so long?"
The teacher nodded and said, "I agree Abby. I think there are far too many pages, too. Our paper and ink seems to get longer every year rather than less. Some of the material appears to be more for legal requirements rather than for what parents are really worried about." Abby looked at her son Ian. She looked over at the papers and asked, "So, what should I look at first?" "Well," said the teacher, "there are several parts of an IEP for any child, but there are additional ones for a child with autism. Let’s go over each section slowly."
The first thing we are going to discuss is what is called your child’s competencies. Essentially, it is a written discussion of what your child can do right now academically. It is now called the PLAAFPs (present level of academic achievement or functional performance). Some other areas I want to discuss today include last year’s and next year’s goals and objectives, his FBA (functional behavioral assessment, his BIP (behavioral intervention plan), his AU supplement (autism), his ESY (extended service year), and his AT evaluation (assistive technology).
And don't forget
Sunday, August 29, 2010
Autism at Marijuana Convention
At the Unconventional Foundation for Autism booth, parent Mieko Hester-Perez of Brea recounted her controversial decision to treat her terminally ill, autistic son with small doses of marijuana.
Joey, who was had been given just six months to live last year, weighed 48 pounds at age 10, Hester-Perez said. He was extremely aggressive, on 13 medications for autism, and had recently been diagnosed with anorexia and malnutrition, she said.
After she began giving him carefully controlled doses of marijuana in a brownie, his behavior improved, he gained more than 40 pounds and he went down to two autism medications, said Hester-Perez, founder of the Unconventional Foundation for Autism, which works with more than 100 parents.
"I saved my son's life," said Hester-Perez, whose story has been featured on TV shows like Good Morning America and 20/20. "This is an alternative to parents who have exhausted all other means."
Hester-Perez said her decision came with great hesitation, and even at Saturday's expo, she explained how out of place she felt.
"I feel like a fish out of water," she said. "I'm a non-cannabis user, and the next booth over is selling marijuana pipes. But I'm here. I couldn't sleep at night knowing I could help another family."
Saturday, August 28, 2010
Autism Education Suits
Sisters Natalie and Michelle, 18 and 19, have autism and need help with the simplest tasks. They can't communicate. They probably will never live independently.
Their parents say it didn't have to be this way.
They argue their daughters would have been markedly more functional — perhaps even high-functioning — if the teens had gotten more educational services earlier on.
The couple is seeking unspecified damages against the Department of Education, alleging administrators failed to provide appropriate autism-specific services to the children in the 1990s and that the two were victims of "deliberate indifference" by the department.
And this week they got a big victory: A federal appeals court reinstated their lawsuit after it had been thrown out.
Their lawyers say the ruling could open the doors for other parents of disabled children seeking damages with claims against the DOE over special-education services.
An Illinois appeals court has agreed to allow a central Illinois student to keep his autism helper dog in school.
The Fourth District Appellate Court sided with the family of Kaleb Drew. They had argued that the boy's yellow Labrador retriever is a service animal allowed in schools under state law.
The boy's mother had testified that the dog prevents the boy from running away, helps him focus on his homework and calms him when he has a tantrum.
A federal appeals court on Friday upheld a ruling that vaccines are not to blame for autism.
The U.S. Court of Appeals for the Federal Circuit upheld a decision last year by a special vaccine court, which concluded there's little if any evidence to support claims of a vaccine-autism link.
Scientist years ago reached that conclusion, but more than 5,500 families sought compensation through the government's Vaccine Injury Compensation Program.
Friday's ruling came in the case of Michelle Cedillo of Yuma, Ariz., who is disabled with autism, inflammatory bowel disease and other disorders that her parents blame on a measles vaccine given at 15 months.
In the 2009 ruling Special Master Denise Vowell wrote that the evidence "is weak, contradictory and unpersuasive. Sadly, the petitioners in this litigation have been the victims of bad science conducted to support litigation rather than to advance medical and scientific understanding" of autism.
In its ruling Friday the appeals panel said "we have carefully reviewed the decision of the special master and we find that it is rationally supported by the evidence, well-articulated, and reasonable. We, therefore, affirm the denial of the Cedillos' petition for compensation."
As we wrote in 2007, the case of Michelle Cedillo was like many that have resulted in vaccine claims, with healthy babies changing drastically after vaccines were administered. "Words alone cannot explain the trauma of watching your only child's health deteriorate to such a degree before your eyes," her mother Theresa told Legal Times before the court proceeding began.
Judge Timothy Dyk, writing for a three-judge federal circuit panel, said that "Michelle's development was indeed very abnormal," but not right after the vaccine was administered. Much of the ruling deals with the scientific evidence offered by both sides in the lengthy proceeding before the special master. Dyk said the government's failure to seek documentation of one expert's findings was "troubling," but "does not justify reversal."
Joined by Judges Pauline Newman and Richard Linn, Dyk concluded that the special master's report in the Cedillo case was "rationally supported by the evidence, well-articulated, and reasonable." In May, the federal circuit issued a similar ruling in another of the autism test cases, Hazlehurst v. HHS.
Friday, August 27, 2010
Autism Fraud Case in CA
Fraud (see an earlier post) hurts autistic people twice. First, it takes money away from legitimate therapy. Second, it raises suspicions that may make it harder to get services.
A former partner at a well-known law firm and his marketing consultant wife were arrested Wednesday on felony charges of bilking the San Francisco school district and private insurers out of about $400,000 via fraudulent bills for treatment of their autistic son, officials say.
The San Francisco couple, Jonathan S. Dickstein and Barclay J. Lynn, both 43, surrendered Wednesday and are expected to appear in court this morning for arraignment on 30 counts of fraud, theft and conspiracy, authorities say.
They were briefly jailed Wednesday on $100,000 bail each but were released on bond.
"This was an elaborate scheme to defraud the school district and insurance companies out of a lot of money," said Chief Assistant District Attorney David Pfeifer. "They used this scheme to make money off their child's special needs - that's terrible."
Thursday, August 26, 2010
California Regional Centers
A nonprofit executive awarded state funds to her sister even though the service was available at a lower cost. A chief executive breached a confidential police tipline. And workers spent $900,000 on transportation - purposely spiking the budget to ensure more money the next year.
Those were some of the findings in a Bureau of State Audits report about state oversight of regional centers, nonprofit organizations that spend about $3.4 billion annually to serve 240,000 Californians with developmental disabilities.
Developmental Services oversees the 21 regional centers throughout the state, which contract with other nonprofits that render direct services to clients such as in-home care and transportation.
The audit [PDF] found widespread fear of retaliation among workers for reporting suspected wrongdoing at some regional centers. It reported that millions of contracts are issued without advertising for bids or going through a competitive process.
Wednesday, August 25, 2010
Plea for Michigan Mandate
The Detroit Free Press carries a plea from David Meador, cofounder of the Autism Alliance of Michigan, who argues on the basis of economics and equal rights:
Most Michigan families simply can’t afford to treat their child’s autism without insurance coverage. Treatment can cost as much as $50,000 per year. That means families are forced to watch their children suffer, with little or no ability to help them. No matter how you look at it, that’s torture for parents – and for their children.
Compounding the problem in Michigan is that relatively few autism therapists practice here because there is no insurance coverage to pay them. Michigan could grow the profession here, expanding access for thousands of patients, if autism were covered. It would also allow us to keep more of our college graduates in Michigan.
There is no cure for autism, but studies show that behavioral therapy can dramatically improve symptoms. With proper treatment, children can vastly increase language and communication skills and improve their quality of life. They can succeed at school, make friends and become participating members of their communities.
Michigan insurers provide coverage for a host of other less prevalent diseases, including cancer, epilepsy and diabetes. Yet they continue to deny coverage to the tens of thousands of individuals affected by autism. This disparity must end.
Michigan citizens with autism deserve the same access to proven medical treatments as those individuals affected by other conditions.
Tuesday, August 24, 2010
Missouri State Rep on Autism
Monday, August 23, 2010
More on the New York Mandate
Opponents say the bill gives give insurance companies standards to use in rejecting treatments for a disorder that differs widely and whose cause has not been identified.
"Without a firm cause, there's no known standard of care," said Michael Smith, chairman of the Foundation for Autism Information & Research, who also has an autistic son. He said it would "handcuff doctors," who might, for example, prescribe off-label drugs.
Both sides agree that current insurance coverage isn't adequate. With Medicaid as the main source of reimbursement, parents of young children often spend thousands of dollars annually for therapy and treatment. The expense declines when children begin getting services through school.
Autism disorders can be a lifelong issue. Statistics show 79 percent of young adults with autism still live with their families, said Marcia Roth of the Autism Action Network. That includes her adult son, she said.
Smith complained that the lobbyist influential in the writing of this bill, former gubernatorial candidate John Faso, works for Manatt, Phelps & Phillips, a company whose clients include many large insurance companies. Smith fears insurers wanted to tailor a narrow bill that would cost them less money. Faso said while the firm has many clients in many states, he was working in this instance for Autism Speaks.
John Gilmore writes at The Age of Autism:
In an extraordinary article letter published earlier this week in the Scarsdale Patch, Alison Singer, president of the Autism Science Foundation, confirmed that a controversial autism insurance bill in New York, S7000B/A1037A, currently awaiting signature or veto by Governor David Paterson was indeed drafted by insurance and pharmaceutical lobbyists Mannatt, Phelps and Phillips who are representing Autism Speaks' lobbying efforts in New York.
See Scarsdale Patch HERE
Despite the fact that Singer resigned from Autism Speaks and has gone into competition with them, she seems to suggest in her letter that the autism community should follow Autism Speaks’ leadership on insurance reforms. In her letter, Singer suggests that it is a positive thing that “The law firm that wrote the bill was hired by Autism Speaks.”
Autism Speaks is urging the governor to sign the bill.
Sunday, August 22, 2010
Vaccines and Autism
Vaccinations are common requirements for children all over the country in order to attend public school and college. However, half of American adults (52%) say they are concerned about the safety of vaccinations for children, including 27% who are Very Concerned.
A new Rasmussen Reports telephone survey finds that 44% are not concerned about the safety of vaccines for children. But this includes just 13% whoa re Not At All Concerned.
Nearly one-out-of-three adults with children under 18 (32%) is Very Concerned about vaccine safety.
Still, 92% of those with children under 18 say their child has received all the vaccinations he or she is supposed to have.
Susan K. Livio reports at The Newark Star-Ledger that affluent, well-educated New Jersey has a low vaccination rate:
The state ranked 42nd last year — and 45th in 2008 — in a telephone survey of parents and pediatricians by the U.S. Centers for Disease Control and Prevention.
New Jersey’s 64 percent rate for giving infants and toddlers recommended shots for polio, hepatitis B, mumps, measles and rubella and other diseases last year was well below the national average of nearly 71 percent, and the lowest in the Northeast. In Pennsylvania, 72 percent of infants and toddlers got their shots. Nearly 71 percent got them in New York City.
Nobody knows for sure why New Jersey’s vaccination rate has slipped so low, but public health professionals and pediatricians say they’ve seen it building for several years.
Vaccine opponents are meeting regularly with lawmakers to build momentum for a bill that would allow parents of school-aged children to claim a "philosophical exemption" to shots, said Collins, a Long Hill resident.
A small but growing number of parents already use the state’s religious exemption to allow their children to skip the shots required for school. It does not require parents to reveal their religion or present a letter from a member of the clergy.
In the 2005-06 school year, schools gave 452 students a pass because their parents cited religious reasons, state health spokeswoman Donna Leusner said. In the school year that just ended, 3,865 were allowed to skip shots on religious grounds.
Many say the early catalyst to the questioning of vaccines was a study by a British doctor 12 years ago linking the measles, mumps and rubella shots to autism. That study was debunked this year by the medical journal that published it.
New Jersey’s immunization rate plummeted from 76 to 62 percent in 2007, the same year the CDC announced the state has the nation’s highest autism rate. That was also the year New Jersey became the first to mandate a flu shot for children from 6 months to 59 months who attend a child care center or preschool.
"When that mandate passed, a whole lot of parents who had no interest in vaccines felt like this was too many and too much," said Barbara Flynn of Summit, an Alliance for Informed Choice member.
Among those Horn considers good doctors is Andy Wakefield, who recently gave a reading at Horn's Hillsborough home to a roomful of local parents as part of a book tour. Highly charged at the reading was the discussion of the Measles-Mumps-Rubella (MMR) vaccine, which is the particular shot parents worry is related to their children's troubles. Wakefield was a doctor specializing in digestive and gut medicine in the United Kingdom until, in 1995, several parents of autistic children approached him to treat their children's severe digestive problems.
In the years that followed, Wakefield assembled a team of autism researchers who became hugely controversial and widely criticized in a vaccine-autism research scare that authorities called irresponsible and which they said showed "callous disregard" for the well-being of the children at the center of the storm. Wakefield was struck from the U.K. medical register in May, and he's since moved to Texas.
"I don't see a point of making one guy the bad guy," Horn said of Wakefield. "Autism is the bad guy. Autism is the villain in this story."
Despite the controversy, Wakefield said at the reading that he's never argued specifically that vaccines cause autism.
"Causation is extremely complex," he said. "The issue is that we don't know. They will tell you they do know. But what has not been done is a comparison of health outcomes for children who are fully vaccinated and those who are not vaccinated at all." [But see study of kids in Denmark.]
Saturday, August 21, 2010
Art Education for Special Kids
See here for more on art education for kids on the spectrum.
The disclosure was eye-opening to Philadelphia School District art teacher Alisha Hagelin. An 11th grader with emotional behavior problems matter-of-factly told her: "In art class, I take my anger out on the art. And in the other class, I don't have anything, so I take it out on the teacher."
Hagelin, a graduate student at Moore College of Art and Design and the art teacher at Germantown High School last year, was interviewing the student for her thesis project.
"I already believed that art helps kids with emotional behavioral disturbance," she said. "My research study proved that."
Hagelin is enrolled in a new program at the city art college for a master's degree in art education with an emphasis on students with special needs, both physical and emotional.
When Moore began designing the program in 2006, it could not find any other like it in the country on which to model its curriculum, said Lynne Horoschak, program manager and a former Philadelphia public school art teacher.
"We are not a master's of arts in special education. We are not art therapy. We are art educators focusing on students with disabilities," Horoschak said of the program, which began in summer 2009.
Friday, August 20, 2010
Special Ed in CA
The paper editorializes:
Special-needs students in California are heading back to their neighborhood schools' classrooms as districts look to cut costs and revisit how to improve their learning environment.
As students are redirected from costly independent schools to their local public school districts, officials say, they will be able to save millions of dollars.
For the program to work, however, special education teachers say the districts have to do a better job of identifying the needs of these students at an earlier age.
Ed Amundson, a special education teacher at McClatchy High School in Sacramento, said having special-needs students in general classes is a good thing, but it isn't for everyone.
Amundson supports bringing special-needs students back to the Sacramento City Unified School District."But that means we need to develop the programs to serve those kids," he said. "If you do it correctly, you have to commit a lot of time and money."
This semester, Sacramento City Unified is bringing back 69 special-needs students. Elk Grove Unified is returning 70 to 80 students – mostly emotionally disturbed and autistic children – when school resumes today.
"This is about having all of our students served in our communities," said Becky Bryant, director of special education services at Sacramento City Unified. "It will be a cost savings, but we are doing it because we are doing an effective job."
On average, Bryant estimated, the district pays $35,000 annually for one special-needs student to attend an independent school, which educators refer to as a nonpublic school. The district has 357 special-needs students at nonpublic schools.
The average cost of educating a special-needs student in house is about $17,000, Bryant said.
The Sacramento City Unified district, for example, currently has 5,632 students diagnosed with special needs (about 12 percent of total enrollment). Of those, 357 are in specialized private schools – most have been diagnosed with emotional disturbance (149) or autism (131). The cost is nearly $12.5 million a year.
Could some of those students be better served in the regular public school environment and at lower cost?
It is worth finding out. The district this year has worked with parents to redirect 69 students in private placement back to the public schools. The majority are students with autism (43) or emotional disturbance (16).
According to the UC Davis MIND Institute, 30 percent to 45 percent of individuals with autism are high functioning, and most attend schools where they spend part of their time in the classroom with typically developing children. This is worth pursuing.
Thursday, August 19, 2010
Autism After 21, Continued
Wednesday, August 18, 2010
Fifteen New York-based autism advocacy groups and parents of children with autism today called on Governor David Paterson to veto the autism insurance bill sponsored by incumbent State Senator Neil Breslin. A bill that the groups say will deny insurance coverage and treatment for people suffering from autism spectrum disorders.
The bill would shift early intervention reimbursements costs from the insurers back to the counties and taxpayers. "S7000-B is a step backwards, not a step forward, in insurance coverage for Autism,” said Kathy Eiss, president of the Western New York Chapter of the Autism Society of America.”
“Insurance Chairman Neil Breslin’s bill does not provide insurance coverage for people who suffer from autism,” said Michael Smith, chairman and northeast regional director of the Foundation for Autism Information and Research. “Breslin’s bill actually does more harm than good because it discriminates against people who suffer from autism and makes it nearly impossible for them to get treatment prescribed by their doctors.”
Also on the same blog, Katie Wright comments on the July IACC meeting:
The day began with a lengthy lecture by Michael Ganz, PhD about the high cost of autism.Guess what autism is hugely expensive! Don’t we already know this? There was a heated Q & A between Ganz and Ari Ne’man regarding whether this information would be used to identify ASD fetuses prenatally for abortion purposes. In fairness to Ganz, I don’t think this subject was on his radar screen, but the issue is important for various reasons. Autism is not like Down syndrome. Autism is a wildly heterogeneous disorder. 95% of ASD kids have no chromosomal abnormalities. This crazy idea that we will be able to prescreen fetuses for ASD is asinine. Would doctors be screening for babies for dairy allergies, or for sub optimal immune systems or babies especially sensitive to environmental pollutants? Pursuing such research would be a colossal waste of money and time.Video of the IACC meeting is here.
Tuesday, August 17, 2010
Tyler Bell Video
Monday, August 16, 2010
Explaining the Increase
- Better Diagnosis (26 percent of the increase)
- Greater Awareness (16 percent)
- Older Parents (11 percent).
Autism After 21
Since Tyler was diagnosed at an early age, his parents have fought for him to receive help from educators and therapists through programs mostly paid for by the state. But there is a serious catch coming -- in four years, Tyler will turn 21 and the government support will end.
Very few resources exist for adults with autism, leading many of them to live life in isolation. The Bells want to avoid that fate for their son, but they worry what his future will be like when they're no longer there to offer support.
"I don't know a parent who doesn't go through that kind of emotional feeling of what happens if I go before my child does," said Peter Bell, Tyler's father and a senior official at Autism Speaks, the nation's largest autism advocacy group.The Bells decided they needed to plan for the day when they are gone and Tyler will have to fend for himself. For two weekends, they gathered those in their community who were connected with Tyler -- neighbors, teachers and friends -- to map out his future, literally.
Sunday, August 15, 2010
Saturday, August 14, 2010
Parent Activism in Santa Barbara
By meeting regularly for coffee and in Abarca’s church, the parents began to rely on each other as they gradually became more focused, educated and directed in their efforts to get the district to listen to them. They each played a part. For example, those who did not like to appear in public did extensive research work, while others similarly fit their personal strengths to the needs of the group.
“We went from a lot of angry single voices to a more educated and professional approach that the school board had to listen to,” said Abarca. “Don’t get me wrong, the board and the administration ignored us many times and we were often very angry, but I think we used that anger more as motivation.”
The only board member that Abarca and Eichelberger say listened to them from the beginning is Bob Noel, a retired political science professor from UCSB.
“I think what these parents have done is incredible,” Noel said. “Without them, I don’t think anything would ever have been done.”
The logjam finally broke in the spring of 2009, when the parent group, now officially called the Special Education Advisory Council, headed by Abarca, convinced the board to order an independent audit of the district’s special education program. The audit was performed by the Sacramento-based Fiscal Crisis & Management Team (FCMAT). The company’s scathing findings validated the Advisory Council’s long-standing complaints.
Since then, the Santa Barbara parents have continued to push hard for reforms.
The article contains a cautionary note:
One of the most difficult issues for the parents is dealing with the personal attacks by those who feel that giving funds and resources to special needs students takes them away from other deserving students.
Although most of the money for special education comes from the federal government and can only be spent on those with special needs, there are additional state funds at stake. Some argue that special needs students should not absorb these flex funds that could help other students.
See also The Autism Society of Santa Barbara
Friday, August 13, 2010
Special Ed and the Stimulus, Continued
U.S. Department of Education officials have urged states and districts to show "courage" in using stimulus funds to hire personnel and alleviate the impact of hundreds of thousands of predicted staff layoffs in the 2010-11 school year.
The stance is decidedly less cautious than the tone Education Department (ED) officials struck when the American Recovery and Reinvestment Act (ARRA) was unveiled last year. At that time, officials warned states and districts to make strategic investments to avoid a "funding cliff" when ARRA funds dry up in 2011. There were also admonitions to use Title I ARRA funds in a way that did not supplant state and local efforts.
Those concerns haven't gone away. But with anywhere between 100,000 and 300,000 educator jobs projected to be lost due to budget shortfalls, ED has begun to tweak its message.
"When this ARRA money came out last year to address the economic crisis, I think most of us were at least hopeful that the economy would have turned around a little more than it has," said Maura Policelli, ED's senior advisor for external affairs, during a June webinar entitled "Strategic Use of Title I and IDEA: How to Maximize ARRA, FY09 & FY10 Funds." "But it hasn't, and we're hearing more and more about layoffs."
While many districts have invested in one-time expenditures like equipment and technology to avoid the funding cliff, Policelli urged listeners "to use ARRA funds to support primarily the staffing needs for your Title I and IDEA [Individuals with Disabilities Education Act] programs."
"We really hope that you will do your best to see how these funds can help alleviate layoffs and the budget crises that your districts or states are facing," she said. "And that does require some courage because it does involve the possible risk of investing in staff that you may not be able to retain in the 2011-12 school year." Policelli offered some examples of appropriate strategies for districts interested in hiring staff without running afoul of supplanting rules, which require federal funds to supplement, not supplant, activities previously funded with state or local resources.
Thursday, August 12, 2010
Autism and the Internet
At the Autism Society's 41st National Conference on Autism Spectrum Disorders in Dallas on July 10, 2010, Michelle Garcia-Winner moderates a panel of Sandy Yim (AspieTeacher.com), Jason Ross (DriveMomCrazy.com) and Alex Plank (WrongPlanet.net), three individuals on the autism spectrum who have used blogs and/or online communities to communicate and connect with others online in different ways. In this segment, each panelist gives a few closing remarks.
Wednesday, August 11, 2010
Autism in the Media: The Case of the Brain Scan
Another in a series of "revolutionary" developments in autism science:
The British National Health Service, however, emphasizes caution:
The study was carried out by researchers from the Institute of Psychiatry at Kings College in London. Funded was provided by the Medical Research Council. The study was published in the (peer-reviewed) Journal of Neuroscience.
The study was widely reported in the media, with most stories relying on a press release and interviews to interpret the scientific data from the study. Few reports focused on the small size of the study or the need for further research on this method. The claim in the Daily Express, that autism can now be detected by a 15-minute brain scan, was incorrect.
In particular, it is necessary to clarify that this method can specifically differentiate between ASD and other neuro-developmental conditions. In addition, the implications of such a test for ASD would need careful consideration, including which people would be eligible for the test and whether it should be considered for use in children.
The researchers also note that:
- Differences in scanners may have affected the ADHD classification.
- The variation in accuracy between the right and left hemisphere needs further exploration.
- The classification algorithm was only used on high-functioning adults with ASD, so it is not known whether it would produce the same results in other groups with more severe ASD.
- The small sample size made it impossible to investigate possible brain differences between autism and Asperger’s syndrome.
Tuesday, August 10, 2010
Press Coverage and Autism
Our Review Summary
A new and unproven approach to autism pops up in a local community. A reporter and his newspaper have several choices:
- Accept the claims of the promoters at face value
- Ignore the issue entirely.
- Dig in, scrutinize the claims, and attempt a public service by evaluating the evidence for local readers.
Thankfully, this reporter and this paper chose #3.
Why This Matters:
The story quotes the mother of two developmentally disabled children saying: "These people are preying on the fears of parents. We cannot be using these children who are so vulnerable as guinea pigs in a medical experiment." practitioners promoting untested alternative treatments often appeal to parents by portraying themselves as persecuted rebels."It's always just 'The medical establishment is against us.' "
And it quotes a developmental pediatrician saying "
In such cases, people need to evaluate evidence. This story helps readers do that.
practitioners promoting untested alternative treatments often appeal to parents by portraying themselves as persecuted rebels."It's always just 'The medical establishment is against us.' "
Also see a 2009 Columbia Journalism Review article about press coverage of autism.
Monday, August 9, 2010
Autism in Texas
Unfortunately, the number of ASD cases is soaring. Statistics from the U.S. Centers for Disease Control and Prevention say almost 1 percent of children have autism or another ASD. Diagnoses in Texas increased 400 percent in the past 10 years, a trend that has officials searching for ways to teach affected students – and pay for it with the state facing a budget shortfall of up to $18 billion.
Meanwhile, tens of thousands of people with developmental disabilities in Texas spend years waiting for assistance.
"We're at 300-and-something now," said [autism mom Shanel] Tarrant-Simone, "and we've been on the list for five years."
Boatright said it takes about eight years on average to get to the top of an assistance list, depending where you live in Texas.
Dr. Catherine Karni, an associate professor of psychiatry at the University of Texas Southwestern Medical School in Dallas and medical director of the outpatient clinic at Children's Medical Center Dallas, said some of the increase can be explained by a broader definition of the autism spectrum, which includes Asperger's syndrome, Rett syndrome and childhood disintegrative disorder.
"So you have severely autistic children and others with something that doesn't show the full symptoms of autism," Karni said. "You have more people."
More awareness of autism and better diagnostic tools also increase the numbers.
"But most likely, there is an increase in prevalence. We don't know how much, or why. We believe there is a genetic component – all the research points to that, and this tends to aggregate in families," she said.
Sunday, August 8, 2010
Schools and Older HFA Students
"Teachers in high school have been fostered to teach independence, but our kids just don't have those organizations skills," said Beth Burt, president of the Autism Society of America, Inland Empire. "A child can do all the work and then forget to turn it in."
The district does not have a classroom or program specifically dedicated to older, higher functioning students with autism, but offers support services based on individual need, said Cheryl Sjostrom, RUSD [Redlands Unified School District} director of special services.
"Special education is not placement," Sjostrom said. "It's supports and services so that a child can access the curriculum. When we start looking at those supports and services, it's so individualized based on individual needs."
She said the district's philosophy, which is based on research and expert advice, is to educate students in general education classrooms when possible and add support as needed. That can include therapy, an aide and other services.
Other area districts share that philosophy and educate in the same way, said East Valley Special Education Local Plan Area administrator Anita Ruesterholtz. Meeting the individual needs of the students is the way most local schools tackle special education because students with autism are very different from one another.
"The least restrictive environment is when they can access the general education curriculum in a general education program with supports and services," Sjostrom said. "From there, you start working into more restrictive (learning environments), if they're not able to do that."
Sjostrom said her department is in the process of visiting other districts to learn from their programs, but autism education for middle and high schoolers is hard to find.
"The school systems really aren't adapted to meet the needs of students with autism," Burt said. "This is kind of a new-age range and they haven't had the time to develop programs for them."
TRICARE and Retirees
A supplemental benefits program available under Tricare offers families of active-duty members as much as $36,000 a year each to cover the cost of the therapy and other autism treatments. But the Berges are not eligible for that program because Zach's father, Kenneth Berge, retired from the Air Force in 2006.See an earlier post on TRICARE.
"I thought it was a fluke that it's not covered," said Dawn Bermge, a former college speech instructor whose full-time job now is to take care of Zach. "We believe with our military members serving like they have, this is something they would be covering."
There are nearly 8,800 dependents of retired military personnel who have been diagnosed with autism, according to 2007 Department of Defense figures.
Tricare representatives told military families that it considers ABA an educational program, not a medical benefit. Because of this, ABA therapy falls under the supplemental benefits program offered by Tricare only to active-duty personnel.
Saturday, August 7, 2010
Churches and Autism
This year is the first time Southridge is holding a vacation Bible school specifically for children with autism, but it’s not the only church that’s had the idea.See also items by the Autism Society and Autism Speaks.
Willoughby said she has talked to people from a church in Florida and a church in Colorado who were planning to do the same thing this summer. An Internet search revealed that churches in Corpus Christi, Texas, and Bloomington, Ill., also have held vacation Bible schools for autistic kids.
A 2008 report by Religion News Service writer Adelle M. Banks illuminated the broader issue of how congregations throughout the country are dealing with people of all ages with special needs. Her report indicated that Christian educators were seeing an increased interest in workshops, books and other materials that help them adapt their Sunday school classrooms for those with autism, attention deficit hyperactivity disorder and other conditions.
But it also revealed that some churches are deciding that worship services are not appropriate settings for some special-needs children. A Catholic church in Bertha, Minn., obtained a restraining order against a teenager accused of urinating on a pew and pushing a parishioner. The boy’s mother found a church in a neighboring town that the entire family can attend, Banks reported.
In Kalamazoo, North Presbyterian Church is known for welcoming those with mental illness and developmental disabilities, both in its worship services and through a social and recreational Togetherness Group, which received an award in 2003 from Community Advocates for Persons with Developmental Disabilities.
Other churches — including Third Christian Reformed, Westwood CRC, Haven Reformed, Second Reformed and Pine Island Presbyterian — offer Friendship Groups that pair individuals who have cognitive disabilities with volunteers for worship, socializing and activities. Friendship Ministries, based in Grand Rapids and in Burlington, Ont., provides resources for these groups in more than 60 Protestant denominations and some Catholic churches.
Friday, August 6, 2010
During the last legislative session, State Sen. Eddie Lucio, D-Brownsville, introduced legislation to expand the availability of special education training to Texas teachers, influenced, in part, by the growing number of students with autism. The bill included a small stipend for participation to encourage additional training, but after passing unanimously in the Senate, it died in the House.
Now some lawmakers are exploring the idea of building charter schools for special ed students and integrating them into existing campuses. They’re looking, in particular, at a New York City charter school for autistic children that is located inside a public school. “I absolutely believe that a charter school system is viable for Texas,” says state Sen. Florence Shapiro, R-Plano. Another “ideal option,” Shapiro says, is putting autism charter schools on state university campuses, where they could draw on university money, staff and expertise.
The quality of Texas special education programs for autistic students runs the gamut, and the number of autistic students in classrooms decreases as children get older, TEA data shows. Some mental health advocates speculate that the reason for that trend is that parents take their children out of public schools and seek education instead in a private or homeschool setting.
“A lot of parents just get frustrated, and they just don’t see the point in continuing. It’s a lose-lose for everybody,” says Colleen Horton, program officer at the Hogg Foundation for Mental Health.
One of the biggest frustrations for parents, Horton says, is that schools don’t adequately prepare students with autism to transition into adult programs and participate in the community. Districts are required by law to provide special education services for students until they are 22 years old, but that doesn’t mean they’re ready to enter the world. “We can teach them for 12 to 15 years, but if we are not preparing them for something after that, many end up sitting on the couch with nothing to do,” Horton says.
Thursday, August 5, 2010
Ole Ivar Lovaas, RIP
Ole Ivar Lovaas, a University of California-Los Angeles psychology professor who pioneered one of the standard treatments for autism, has died. He was 83.
He had been recovering from surgery for a broken hip and developed an infection, according to a family member. Lovaas died Monday at a hospital in Lancaster, north of Los Angeles. He had been diagnosed with Alzheimer's disease a few years ago.
Lovaas' 1987 paper, "Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children," showed for the first time that intensive one-to-one therapy early in life could eliminate symptoms of the disorder in some cases.
He described some of his research subjects as having "recovered," a concept that remains controversial but appealed to parents and helped launch an industry that provides the treatment to the growing numbers of children being diagnosed.
"Before that (paper), people still felt that there was no hope once your child was diagnosed with autism," said Doreen Granpesheeh, one of his former graduate students who went on to open the Center for Autism Research and Treatment, a large therapy company.
An early interview with Lovaas:
Massachusetts Governor Signs Legislation
"I am proud that Massachusetts now has one of the most comprehensive autism coverage laws in the nation," said Governor Patrick. "This bill offers needed relief for individuals and families struggling to pay for the services they need."
"Parents have long been faced with the difficulty of getting necessary medical care for their autistic children covered by insurance companies. Studies have shown that by receiving services early, those diagnosed with an Autism Spectrum Disorder will need fewer services later in life," said Senate President Therese Murray. "This law will change existing insurance policy so that we will be able to provide early intervention care to more children with autism, teaching them to communicate and learn at an early age. The passage and signing of this legislation signals an increased understanding about autism and its treatment."
On a related topic, the governor signed legislation concerning terminology. From another press release:
In keeping with the Patrick-Murray Administration's commitment to support the Commonwealth's most vulnerable populations, Governor Deval Patrick today signed into law a bill that promotes dignity for individuals with developmental disabilities by replacing the words "mental retardation" with "intellectual disabilities or disability" in the Massachusetts General Laws.
The legislation, "An Act Eliminating the Word 'Retardation' from the General Laws" (H4922), reflects the passionate work of advocates, particularly self-advocates with developmental disabilities, and follows last year's renaming of the Department of Developmental Services, which had previously been called the Department of Mental Retardation. A broad range of stakeholders believed that changing the name of the department was a key step in demonstrating respect for people with developmental disabilities and also better reflected the range of services and supports offered by the state.
Wednesday, August 4, 2010
Hearing on Autism and the Environment
Mary and Steve Moen fought for years to get their son Max, now 10, the help he needed to deal with the behavioral and social problems he exhibited as a child with autism.
They went for numerous evaluations and sought out some of the best specialists in the field, enduring sometimes year-long waits for consultations. Their persistence paid off; Max attended a special autism program to help him function better socially and control his behavior better, and now he attends a mainstream school and performs well academically, behaviorally and socially.
Still, the underlying cause of Max's autism remains a mystery -- a situation his parents hope to change.
Moen shared her son's story in front of the Senate Environment and Public Works Children's Health subcommittee today. The subcommittee met to get a status report on research into the links between environmental factors and developmental disorders like autism and attention-deficit hyperactivity disorder.
- Video of hearing here.
- Witness statements here.
- ABC story on GFCF diet:
Tuesday, August 3, 2010
The theory behind person first language ("person with autism") is that it recognizes the person before the disability and stresses that there is more to a person than just autism. I asked my blog readers and my twitter followers which they preferred and the majority, mostly parents of children with autism, reported that they prefer the person first terminology.
Person first language is an easy philosophy to accept. It makes complete sense, and I find it to be a perfectly reasonable way of thought. However, I tend not to prefer it. The reasons for rejecting person first are more complicated, but, I believe, equally valid.
I use the adjective "autistic" for several reasons. I have taken my cues from many autistic adults who self-identify as autistic. For these individuals, autism is simply a part of them that cannot be separated from who they are. Autism is, in a way, a description of how their brains work, not something that has been added to their being. Without autism, they would not be the same person, therefore it is not something they have, but rather something they are.
Autistic adult and autism activist Jim Sinclair wrote a very clear, articulate essay about why he dislikes person first language. This essay lays out why he identifies as an autistic person, and his reasons are very similar to mine.
A Maryland medical group has started treating autistic children in South Florida with shots of a drug used for chemical castration, a therapy widely panned by mainstream experts.
The group gives children the cancer drug Lupron to stop their bodies from making testosterone, saying the drug helps expel toxic mercury and quells aggressive or sexually explicit behavior by kids with excessive levels of the male hormone.
A Boca Raton mother who just put her 18-year-old son on the drug said it seems to help.
But numerous physicians, researchers and therapists insist there's no proof mercury causes autism, that Lupron removes mercury or that autistic kids have excessive testosterone. What's more, the drug carries a risk of bone damage, stunted growth and heart trouble, and can render children impotent.
These experts contend that Lupron, costing about $5,000 a month but seldom covered by insurance, is one of many treatments that cash in on the desperation of parents trying to cope with an incurable condition for which medicine has few good answers outside of painstaking behavioral therapy.
"Not only is there no scientific backing whatsoever for Lupron treatments, there are several major concerns for the children's health," said neurologist BethAnn McLaughlin, an adviser to the Dan Marino Foundation autism group in Weston and the mother of two developmentally disabled children.
Divorce, Families, and Older People with ASD
An earlier post dealt with the "divorce myth," the notion that parents of autistic children are more likely than others to break up. Unfortunately, one study suggests, it becomes less of a myth as the children grow up. From the University of Wisconsin:
The parents of grown children with autism are more likely to divorce than couples with typically developing children, according to new data from a large longitudinal study of families of adolescents and adults with autism.
The study, published in the August issue of the Journal of Family Psychology by researchers from the University of Wisconsin-Madison's Waisman Center, paints a new picture of the prospects of long-term marital success for parents raising a child with autism.
The study is the first to track marital history of parents of adult children with autism. It reveals that, in contrast to previous assumptions, parents do not have a greater risk of divorce when their son or daughter with autism is young. However, as the child with autism grows into adolescence and adulthood, parents are more likely to divorce than are parents of typically developing children. Although findings reveal diminished prospects for a lasting marriage for parents raising a child with autism, the majority of marriages in this study survived.
The study compared the marital fates of 391 couples — the parents of adolescent and adult children with autism — to a sample drawn from another large longitudinal study, the National Survey of Midlife in the United States (MIDUS). The goal of the study was to document the rate and timing of divorce of parents of children with autism, explains Sigan Hartley, a UW-Madison assistant professor of human development and family studies and lead author of the report.
There is a lifelong profile of challenging behaviors and symptoms associated with autism," Hartley notes. "Few developmental disabilities appear to be more taxing on parents and there is a great need for support services for families when the child is an adolescent and adult. Providing support for couples to help them work on their marriages is an obvious step. If we can get information and support to these families, we hope to be able to support lasting marriages."
The new study compares data from two large longitudinal studies, the Adolescents and Adults with Autism Study, directed by Marsha Mailick Seltzer, a UW-Madison professor of social work and director of the Waisman Center, and MIDUS, directed by UW-Madison psychology professor Carol Ryff. Both studies are funded by the U.S. National Institutes of Health.
Monday, August 2, 2010
Families with children with autism and developmental disabilities move from all over the country for the Madison schools. Kristi Jacobsen, whose son Jonathan has autism, moved from Omaha several years ago. She and her three children live here full time, while her husband, who has a financial business in Omaha, commutes back and forth.
“It’s a sacrifice,” Ms. Jacobsen said. “But Jonathan’s made such progress. They give him every opportunity to be part of the community.”
Lisa Pugh’s family moved from Wichita, Kan., for their daughter Erika, 11. A year and half ago Ms. Pugh took a job in Washington, but last month the family returned because, Ms. Pugh said, they missed Madison’s schools.
Build it and they will come. Nationally, about 12 percent of students are identified as disabled, but in Madison 17.5 percent are, according to John Harper, who oversees special education. Mr. Harper said that 88 percent of elementary students with disabilities were fully included in classes, along with 81 percent of middle school students and 63 percent of high school students. Most of the rest have a mix of general and special education classes; fewer than 5 percent are separate.
David Riley of the Urban Special Education Leadership Collaborative said Madison was one of the “big three” leaders in successfully implementing inclusion, along with the schools in Charlotte-Mecklenburg, N.C., and Clark County, Nev.
While it costs Madison $23,000 to educate a child with autism (to pay for extra support staff members) versus $12,000 for a typical child, Colleen Capper, a University of Wisconsin professor, said inclusion was cheaper than segregating students.
Sunday, August 1, 2010
This study examined child- and county-level factors associated with age of diagnosis of autism among Medicaid-enrolled children and the change in age of diagnosis over time. METHODS: National Medicaid claims from 2002 to 2004 were used to identify age of diagnosis and characteristics of children younger than ten years old with a diagnosis of autism (ICD-9 codes 299, 299.0x, or 299.8x). These data were linked to county-level education and health care variables. Linear regression with random effects for state and county was used to examine associations between these variables and age of diagnosis. RESULTS: A total of 28,722 Medicaid-enrolled children newly diagnosed with an autism spectrum disorder were identified. Their average age of diagnosis was 64.9 months. Adjusted average age of diagnosis dropped 5.0 months for autistic disorder and 1.8 months for other spectrum disorders during the study period. Asian children were diagnosed earlier than children in other racial or ethnic groups, although these differences were much more pronounced for other spectrum disorders than for autistic disorder. Children eligible for Medicaid through the poverty category were diagnosed earlier, on average, than children who were eligible through disability, foster care, or other reasons, although this difference decreased over time. Children in large urban or rural counties were diagnosed later than children in small urban or suburban counties. CONCLUSIONS: Findings showed that diagnosis of autism occurs much later than it should among Medicaid-enrolled children, although timeliness is improving over time. Analyses suggest that most of the observed variation is accounted for by child-level variables, rather than county-level resources or state policies.
This study estimated differences by ethnicity in the diagnoses assigned prior to the diagnosis of autism. In this sample of 406 Medicaid-eligible children, African-Americans were 2.6 times less likely than white children to receive an autism diagnosis on their first specialty care visit. Among children who did not receive an autism diagnosis on their first visit, ADHD was the most common diagnosis. African-American children were 5.1 times more likely than white children to receive a diagnosis of adjustment disorder than of ADHD, and 2.4 times more likely to receive a diagnosis of conduct disorder than of ADHD. Differences in diagnostic patterns by ethnicity suggest possible variations in parents’ descriptions of symptoms, clinician interpretations and expectations, or symptom presentation.