Mandate Tabled in North Carolina

WFMY reports on a setback for an insurance mandate in North Carolina:

Reaction to New York Mandate

WBNG Binghamton reports on mixed reaction to a new bill that expands coverage for autism treatment in New York. Some say that it does not go far enough.

More on the bill from The Plattsburgh Press-Republican.

Food Safety News Interview with Temple Grandin

Those of us in the broad autism community think of Temple Grandin as an example of how far people on the spectrum can go. Helena Bottemiller of Food Safety News recently interviewed her -- not about autism, but about her field of expertise, livestock handling. Part I is here. And Part II is here.

Whooping Cough and Vaccines, Continued

The Los Angeles Times reports:

Public health officials say California's lackluster immunization rates could be a factor in the epidemic spread of whooping cough, a bacterial disease expected to take its largest toll in the state in five decades.

California is one of only 11 states that does not require middle school students to receive a booster shot against whooping cough, also known as pertussis, which infects the respiratory system.

The state is the only one in the nation to report such a dramatic surge in pertussis, according to the U.S. Centers for Disease Control and Prevention. Five newborn babies in California have died so far this year, and at least 910 people are confirmed to have the illness.

...

Public health officials also worry that some parents may decline vaccination because they believe that vaccines cause autism, an idea that has been studied and rejected by scientists.

Dr. Robert Benjamin, deputy health officer for the Alameda County Public Health Department, said the whooping cough epidemic should cause parents to reexamine their decision to skip or delay recommended vaccinations.

"Anyone who has experienced pertussis, either themselves or in their kids, they know this is not a disease to mess with," Benjamin said. "This is a disease that can kill the most vulnerable newborns — not only in their households, but in the households of other people."

See also

• Laura Shumaker's blog;
• A news story in the San Francisco Examiner;
• And a Reuters story about a new study of vaccines and autism.

Science and Public Opinion

Chris Mooney writes in The Washington Post:

With public health at stake, it's no wonder medical experts get frustrated when they hear autism activists such as actress Jenny McCarthy attack vaccines. But once again, the skeptics aren't simply ignorant people. If anything, they seem to be more voracious consumers of the relevant medical information than the nation as a whole. According to a 2009 study in the New England Journal of Medicine, children who go unvaccinated by parental choice (rather than because of inadequate access to vaccines) tend to be white, from well-to-do families and with married, college-educated mothers. Parents in such families are more likely to go onto the Internet (what McCarthy calls the "university of Google") to research the health risks of inoculation than are other groups of parents.

...

Experts aren't wrong in thinking that Americans don't know much about science, but given how little they themselves often know about the public, they should be careful not to throw stones. Rather than simply crusading against ignorance, the defenders of science should also work closely with social scientists and specialists in public opinion to determine how to defuse controversies by addressing their fundamental causes.

Whooping Cough in an Affluent County

Christina Jewett reports at CaliforniaWatch:

Preliminary data from state public health officials show that the state’s richest and one of its poorest counties are leaders in the number of whooping cough cases, as cases of the illness are mounting to epidemic proportions. (See the data in a spreadsheet below.)

The reasons for the apparent trend are surprising.

As I’ve documented here, Fresno often stands out in measures of a vulnerable population gripped with child poverty and other ills.

The opposite is true of Marin, a county often voted among the nation’s fittest.

So what’s going on? Parents in Marin County are citing “personal belief” and signing waivers to opt out of immunizing kindergarten-bound children, said Dr. Fred Schwartz, the county public health officer. The practice is highly controversial and driven by fears (many debunked) that vaccinations can cause more harm than good.

Schwartz said 7.1 percent of kindergartners enter school without shots, among the highest rates in the state.

People in Marin County appear to be concerned with mercury as a neurotoxin. In a recent Earth Week project, several pharmacies swapped out mercury thermometers with digital ones.

Early last year, the Marin Independent Journal reported:

The number of autistic students in Marin has doubled in the past seven years, from 76 in 2001 to 152 in 2008. That statistic has increased by an average of 12 percent each year since the 2001-02 school year for a total increase of 123 percent, according to the Marin County Special Education Local Plan Area, the division of the county Office of Education that provides support to students with developmental disorders.

Whooping Cough

An outbreak of whooping cough in California is adding a new element to the vaccine controversy.

See a Mother Jones article and a story from ABC:

FDA Steps In

The Los Angeles Times reports:

A product promoted to parents of children with autism is not a harmless dietary supplement, as claimed, but a toxic unapproved drug that lacks adequate warnings about potential side effects, including hair loss and abnormalities of the pancreas, the U.S. Food and Drug Administration has warned in a letter to its maker.

The FDA's June 17 letter to Boyd Haley, a retired Kentucky chemist and hero to the autism recovery movement, details five violations of the Federal Food, Drug and Cosmetic Act related to his product, OSR#1. Failing to correct such violations can result in fines, seizure of products and even criminal prosecution.

The Tribune in January reported that the compound, sold as OSR#1, had been developed to treat mining wastewater, and that it had not undergone rigorous testing to ensure it is safe and effective. The report was part of an investigation into unproven autism therapies offered by health providers who say they can reverse the disorder.

Items on Autism Outside the USA

The Herald Sun reports on Australia:

VICTORIA'S education system is being stretched by a huge increase in the number of students diagnosed with autism spectrum disorder.

More than 4000 autistic students receive about $84 million in taxpayer financing today - double the 2006 figures, according to Education Department data.

The money is used in mainstream and specialist schools to support autistic students who are eligible for disability support.

But some parents in the city's west are upset that a specialist autism school in Niddrie offers only four years of education while autistic students in other suburbs can go up to year 12

Northern Life reports on Canada:

Susan Alcorn-MacKay, who founded the college’s [Cambrian College] disability services program 23 years ago, recently wrote a report about the topic.

The report, entitled Identifying Trends and Supports for Students with Autism Spectrum Disorder Transitioning into Postsecondary, was commissioned by the Higher Education Quality Council of Ontario (HEQCO).

One of the report’s recommendations is that post-secondary institutions hire autism coaches to help students with the disorder navigate their studies and the social aspect of life at college or university.

“They would work with the student to try to minimize the trauma or the problems moving into the school,” she said.

The report also recommends there be “safe rooms” where students with autism would be able to go and calm themselves down if they become overstimulated.

Balkan Insight reports on Kosovo:

According to Kosovo’s official figures, autism is virtually non-existent, with just six cases registered by the Ministry of Health. Hatixhe Zogaj, one of the few educational experts trained to deal with autism, estimates the true number could be around 400. But comparisons with figures from Western countries suggest the number could be many times larger. ... Children must go out of the country if they want to get a proper diagnosis for their mental health problems. For those fortunate enough to find out what is wrong with their children, Kosovo only has one school that is able to support them.

The Times reports on South Africa:

Nono Njongwe, who has worked as a speech therapist in a rural South African school and clinic, says autism is sometimes left undiagnosed because strange behaviour is often kept hidden.

"What you're fighting," she says, "is a belief system that says, 'White people go to the doctor. We do something else. We speak to our ancestors.' Many mothers feel guilty that their children are sick. They think it's because they skipped a ritual. And sometimes husbands blame their wives for producing children that aren't normal. So moms generally think that it's best just to avoid a diagnosis."

Ne'eman Confirmed

An earlier post discussed Ari Ne'eman's nomination to the National Council on Disability.

Disability Scoop reports:

After months of delay, the Senate unanimously confirmed Ari Ne’eman on Tuesday to become the first person with autism to serve on the National Council on Disability.

In December President Barack Obama nominated eight new members to the National Council on Disability, which makes recommendations to the president and Congress on disability issues. Early this year, all of the nominations were confirmed except that of Ne’eman, who has autism and is the founder of the Autistic Self-Advocacy Network.

The reason: one or more members of the Senate placed an anonymous hold on the nomination, preventing the full Senate from considering it.

New York Mandate

The New York Times reports:

State lawmakers passed legislation this week that would require insurers to cover autism-related screenings, diagnoses and treatments. The move was a relief for parents of children with autism spectrum disorders, but was sure to increase insurance premiums across the board.

The State Assembly passed the measure Monday night, a few weeks after it passed in the Senate. The measure passed unanimously in both houses.

It now goes to Gov. David A. Paterson. New York would become the 22nd state in which insurers are required to cover autism-related treatments.

Autism Speaks applauded. But The Age of Autism warned that "treatment for autism will have to meet an unprecedented new standard that is much higher than used for treatments of any other disorder under New York law, or the law of any other state or the federal government."

Michigan Mandate Hearing

The Detroit News reports:

The failure to mandate health insurance coverage for workers with autistic children will continue to take its toll on businesses and lead to a loss of productivity, said DTE Energy CEO Anthony Earley today.

Several large companies with self-funded workplace plans already cover therapies for the disorder -- concluding "it makes good business" sense -- but few insurers offer it as part of their plans, said Earley, speaking at the Detroit Medical Center this afternoon.

DTE Energy has voluntarily extended autism benefits to its 10,000 workers.

State Sens. Randy Richardville, R-Monroe, and Tupac Hunter, D-Detroit, led the event as a part of bipartisan hearings on proposed bills requiring all insurers to cover the illness.

From The Detroit News: http://www.detnews.com/article/20100621/BIZ/6210398/1361/DTE-CEO--state-senators-push-insurers-to-cover-autism-therapies#ixzz0rYTCOEY4

Multiple Disabilities

The New York Times offers a heartbreaking portrait of a student with severe multiple disabilities. One passage should be familiar to anyone who has dealt with the special-ed system:

Besides physical therapy at P.S. 79, Donovan receives an hour each of occupational and speech therapy each week, and a half-hour of vision therapy. His classroom teachers must divide their time with 11 other students with multiple disabilities. So more than anyone else at P.S. 79, the teacher’s aides may have the best shot at providing the intensive one-on-one time that many experts say it takes to make progress with a student like Donovan.

They are also among the lowest paid people in the system, earning between $21,000 and $36,000 a year, and requiring no specific training in special education beyond what they learn on the job.

Methyl Iodide

The New York Times reports on a potential environmental toxin:

In a report and in public testimony Thursday before the [California] State Senate Food and Agriculture Committee, members of the review committee said the state’s decision to approve the new pesticide, methyl iodide, was made using inadequate, flawed and improperly conducted scientific research.

“I’m not in blanket opposition to the use of pesticides, but methyl iodide alarms me,” said Theodore A. Slotkin, a professor of pharmacology and cancer biology at Duke University Medical Center and a member of the scientific review committee. “When we come across a compound that is known to be neurotoxic, as well as developmentally toxic and an endocrine disruptor, it would seem prudent to err on the side of caution, demanding that the appropriate scientific testing be done on animals instead of going ahead and putting it into use, in which case the test animals will be the children of the state of California.”

...

Once out in the environment, neurotoxic chemicals like methyl iodide contribute to neurodevelopment disorders including learning disabilities, conduct disorders, autism spectrum disorders and attention-deficit hyperactivity disorder, said Dr. Slotkin, who called such health disorders a “silent pandemic.”

A press release on the hearing is here.

A post from the Pesticide Action Network is here.

A Victory for Floortime

A January 18 post involved the effort of some families in Los Angeles County to get funding for Floortime. The Los Angeles Times reports:

Families of children with autism in eastern Los Angeles County appear to have prevailed in a fight to maintain state funding for a popular therapy for the disorder.

More than 2,200 families received notice this week of a preliminary settlement in a class-action lawsuit that, if approved by a judge, would force the Eastern Los Angeles County Regional Center to continue to provide the treatment, known as the DIR model (for "developmental, individual difference, relationship-based").

DIR is the basis for Floortime, a popular method in which a therapist follows a child's lead during play activities to develop communication and social skills.

IDEA Waivers

More detail from Monday's post. Education Week reports:

At least three states have asked for permission to cut back on the money they provide districts for special education, under a built-in escape clause in the federal special education law that is aimed at financially struggling states.

Iowa and Kansas have both been granted a waiver, which under the Individuals with Disabilities Education Act can be given out in “exceptional or uncontrollable circumstances such as a natural disaster or a precipitous and unforeseen decline in the financial resources of a state.”

South Carolina has requested a waiver, but the U.S. Department of Education has asked the state for more information before making a decision. Both the waiver requests and the department’s responses were reported earlier this year by the blog IDEA Money Watch, a project of the Washington area Advocacy Institute, which supports parents of children with disabilities.

Special education advocates say this is the first time they’re aware of economic-hardship waivers being granted

A Daily Kos blogger is urging action against waivers.

Adults with Autism

Advancing Futures for Adults with Autism will be holding a briefing for lawmakers. From the organization's release:

AFAA will hold a Congressional briefing on July 15th in Washington, DC. The briefing will bring together federal legislators, national policymakers and advocates for adults with autism – including individuals who have autism – to discuss priorities for action in the public and private sectors that address the increasing and unmet demand for effective services for adolescents and adults with the disorder.

“Working together, we have made incredible strides toward creating a focused agenda for improving access to services for adults with autism,” said Peter Bell, AFAA co-chair and executive vice president of Autism Speaks. “The Congressional briefing is an important next step as we seek to engage our elected leaders and key figures in the private sector and compel them to act in support of creating better futures for our loved ones with autism.”

A few weeks ago, WPIX-TV in New York did a report on adults with autism:

Autistic Salutatorian

A story from Rhode Island about the long-term benefits of early intervention and behavioral therapy:

Autism and Employment

From the Richmond Times-Dispatch:

When the six Henrico County [Virginia] students with autism started job-training internships last fall at St. Mary's Hospital, most wouldn't make eye contact with each other or the hospital staff.

Yesterday marked a milestone for the students -- they not only completed the internships with more job skills and greater confidence, but they also got job offers to work at St. Mary's.

"The whole goal is competitive employment," said Paul Wehman, a Virginia Commonwealth University professor who is lead investigator for a federally funded research project looking at job training models for people with disabilities, including autism.

...

Bon Secours, VCU, Henrico County Public Schools and the state departments of Rehabilitative Services and Education are all partners in the job-training effort.

The high school students who were enrolled in the research were assigned randomly to classroom-based skills training or on-the-job internship at St. Mary's based on the Project Search work training model for people with disabilities.

From Fox and Hounds (CA):

The Media Access Office (MAO) was founded in Hollywood in 1979 by Fern Field Brooks, and Performers with Disabilities, a group of experienced and aspiring entertainment professionals. The group included performers with a range of physical conditions (wheelchair users, amputees, hearing impaired, sight impaired) as well as neurological conditions (performers with Down syndrome, autism, Tourette syndrome).

...

[J] ob opportunities are increasing for persons with disabilities in movies and television, and to a greater extent the portrayal of persons with disabilities is changing.

Take the disability/ability of autism. In the past few years autism has exploded in popular culture, with portrayals of persons with autism in popular fiction, television and movies. This current year alone has seen two movies, Temple Grandin and Dad's In Heaven with Nixon, centered on a person with autism. Further, unlike the movie Rainman, which largely portrayed an autistic as an object of curiosity, these movies show persons with autism as bringing strengths to the job world and society.

The interaction of popular culture and the labor markets is a complex one. There is no question, though, that a greater presence of persons with disabilities in front of the camera will have impacts on hiring both within and beyond the entertainment industry.

The Age of Autism notes recent legislation in Connecticut providing a tax credit to employers of people with disabilities:

House Bill 5435, an Act Concerning the Recommendations of the Majority Leaders’ Job Growth Roundtable was a plan to address the need to create jobs in Connecticut. Section 9 in the attached link is the language of the legislation (HERE) And wow! People with autism were part of that plan.

Updates

• Elizabeth Emken, the autism advocate running for Congress, lost the GOP primary in California's 11th district.
• A week ago, this blog included a post on insurance coverage in Michigan. Attorneys are ready to file suit against Michigan's Medicaid program and other insurers to require coverage.
• Ari Ne'eman has graduated from college.
• A March post concerned stimulus funds for special education. IDEA Money Watch reports: "We’ve learned that States have begun to submit requests to the U.S. Dept. of Education (USED) for waivers to reduce state financial support toward the excess costs of special education to local school districts. According to information obtained from the USED, the states of Kansas and Iowa have requested waivers and gained approval. The state of South Carolina has made a request with no decision so far."

Good and Bad News from the United Kingdom

From NewsWales:

Significant strides have been made in helping victims of autism in Wales, says Gwenda Thomas, Deputy Minister for Social Services.

...

"For the first time ever a local, regional, and national infrastructure for Autism is now in place. Locally there are 22 identified ASD leads, who are now a point of contact for families and professionals at a local level.

"We have engaged fully with stakeholders and have 22 stakeholder groups feeding into this process, plus a national stakeholder group, and as a consequence every local authority area now has a published ASD Action Plan.

"A four strong regional support team based within the Social Services Improvement agency (SSIA) has provided support and regional planning to the 22 ASD leads, resulting in a total of no less than 22 brand new autism projects starting this year.

"These projects involved local authorities working together, often in partnership with the NHS and voluntary sector, to deliver projects which directly benefit children and adults with autism."

Video of Thomas's statement is here.

Don't get too cheerful. From YourCanterbury:

Shocking accounts from parents of autistic children have revealed how lack of Government support has led to their youngsters developing mental health problems.

And figures published by the National Autistic Society (NAS) have shown how 70 per cent of children with autism – a lifelong developmental disability – have mental health problems which could have been prevented.

A report by the organisation found that in many cases this was dismissed by the NHS as an unavoidable side effect of having autism, despite it not being a mental health condition.

Mark Lever, chief executive of NAS, said the NHS offers “inappropriate, ineffectual and sometimes harmful treatments” and called on the new Government to prioritise the problem.

Insurance Mandate: The List, to Date

Autism Speaks lists the states that have enacted an insurance mandate so far:

Arizona - Enacted March 21, 2008

Colorado - Enacted June 2, 2009

Connecticut - Enacted June 9, 2009

Florida - Enacted May 2, 2008

Iowa - Enacted April 29, 2010

Illinois - Enacted December 13, 2008

Indiana - Enacted May 3, 2001

Kansas - Enacted April 19, 2010

Kentucky - Enacted April 14, 2010

Louisiana - Enacted July 2, 2008

Maine - Enacted April 12, 2010

Missouri- Enacted June 10, 2010

Montana - Enacted May 5, 2009

Nevada - Enacted May 29, 2009

New Jersey - Enacted August 13, 2009

New Mexico - Enacted April 2, 2009

Pennsylvania - Enacted July 9, 2008

South Carolina - Enacted June 7, 2007

Texas - Enacted June 15, 2007

Vermont - Enacted May 27, 2010

Wisconsin - Enacted October 19, 2009

Governor Signs Missouri Mandate

Jake Wagman of the St. Louis Post-Dispatch reports:

With kids chirping in the background and Republican state senators at his side, Gov. Jay Nixon signed into law a bill mandating insurance coverage for autism treatment.

Both the kids, and the lawmakers, had reason to be happy.

The bill sponsored by State Sen. Scott Rupp, R-Wentzille, and State Rep. Dwight Scharnhorst, R-Manchester, requires insurance companies to cover up to $40,000 a year for a type of treatment, applied behavior analysis, that is seen as key to helping children with autism spectrum disorder.

The Missouri Insurance Director explains the law:

Law Enforcement and Autism

Once again, the collision of autism and law enforcement has resulted in an unhappy story, this time in Stafford, Virginia. See A Voice for Neli.

New York Action on Insurance Mandate

WNYT in Albany reports:

The Albany Times-Union reports:

The Senate voted unanimously Wednesday to require insurance companies to cover screening, diagnosis and treatment of autism.
The bill had broad bipartisan support, including Sen. Neil Breslin, a Bethlehem Democrat who worked the draft the legislation as chairman of the insurance committee and Roy McDonald, R-Saratoga, who has long drawn attention to the disorder.

"It's a piece of legislation that I believe is landmark," Breslin said. Twenty other states already require some form of autism coverage by insurers.

Currently, advocates of the measure said, families receiving treatment plans from doctors -- including speech therapy -- are surprised to hear they are not covered by health insurance. Judith Ursitti, a regional advocate with Autism Speaks, an organization which backed the bill, said she had heard stories of families taking second mortgages on their homes to finance treatment.

A Scientific Advance

ABC News reports:

Researchers believe they have found some of the edge pieces in the jigsaw puzzle that is autism spectrum disorder.

A new study has found that duplicated and deleted pieces of DNA in a number of different genes play a role in the development of autism, said study co-author Rita M. Cantor, a professor of genetics and psychiatry at the David Geffen School of Medicine at UCLA.

Advocacy groups are optimistic that the findings could lead to new treatments for the disorder. A number of autism researchers said the discovery could one day lead to earlier diagnosis and treatment. Although some cautioned that it's too early to say how big a step forward the gene findings are, they clearly show the important role of genetics in autism.

...

"Discovery of the molecular pathophysiology will lead to biologically based treatments, which are especially needed for more severely affected individuals with autism spectrum disorder," said Dr. Nancy Minshew, another of the study's co-authors and professor of psychiatry and neurology at the University of Pittsburgh.

The Color of Autism

The Color of Autism blog (http://www.thecolorofautism.org) is about African American children on the spectrum.

OK Governor Signs Scholarship Bill

A followup to a May 7 post about legislation in Oklahoma. AP reports:

Gov. Brad Henry has signed legislation to create publicly funded scholarships for children with autism or other disabilities.

The measure is among more than 50 bills the governor signed into law Tuesday.

The bill's author, Rep. Jason Nelson of Oklahoma City, has said it will give the parents of students with disabilities such as autism or Down syndrome more education options.

The bill would qualify disabled students with an individualized education program for a scholarship to attend any public or private school that meets state accreditation requirements.

The scholarships would consist of state funds already dedicated to meeting the child's educational needs. Opponents described the bill as a voucher program that will divert scarce resources away from public schools.

Followup on Michigan Mandate

Ann Breznai offers a followup to a post on autism costs in Michigan:

There are a couple of points I would like to deal with, one needs some additional information or it is very misleading and the other simply draws an incorrect conclusion after leaving out the bulk of the story.

First, you included the statement from Blue Cross stating "it's not that Blue Cross didn't want to cover the costs for autism treatment; in fact it offers an option to employers to buy coverage." That is not exactly true. They have just recently, very recently, added a rider option. However, it was not available at the time that those involved in the lawsuits sought treatment for their children. The truth is that BCBS announced that they were "going to start offering" (though, it was not available, yet, and there was no date for when it would be offered or how much it would cost) the rider option the same day they settled that first lawsuit, the John's case. Coincidence? Or an attempt to garner some positive press? Please, keep in mind that, at the same time the lawsuit was coming to settlement (because BCBS had internal documents stating that ABA therapy was "highly effective" and "scientifically proven" when they had denied the claims saying the treatment was "experimental"), autism insurance legislation was passing the House with overwhelming, bi-partisan support. As to the ryder itself, it covers children age 2 - 5 yrs. only, when the average age of diagnosis in MI is 5.7 yrs. It is also good at only one hospital, Beaumont, and for only one program, the HOPE program. Beaumont offers several other autism treatment programs, but the ryder covers only the one. It is a very short, 12 week program that trains the parents to be the 'therapist'. For families that need two incomes, live 5 - 7 hours from the hospital, are single parents, don't have someone to care for their other children, etc., this program isn't an option even if they have the rider and their child is the right age. The Beaumont program essentially requires a family to live at the hospital for the 12 weeks, it's a very intensive program. The rider is also only offered to large group companies who also include mental health coverage. So, it is a very restricted group of people that can even purchase the rider. Those who work for small - medium size companies, must purchase individual coverage or even work for large companies who don't happen to offer mental health coverage can't buy it regardless of how much they might be willing to pay. I, honestly, don't know of a single person who has this coverage. I'm sure it must be prohibitively expensive because it is such a small market that even has the option to purchase it. To state that employers have the option to buy autism coverage is extremely misleading, most companies are not actually eligible to buy the rider.

Finally, you make a statement - a conclusion, really - regarding the Free Press article that came out on Sunday. It is my son you are referring to in your conclusion that "at the end, the report tells of one child who made striking progress and it ends with an apt summary." The point of the article was about how expensive it is for families dealing with autism, the title of the article is "The Cost of Autism". The point of including my son was that we have had to rely on free and low-cost programs to deal with sensory issues, where he has made striking progress in some areas, though he still has several sensory issues left to deal with. Without insurance coverage, that is all we can afford. However, when it comes to his speech issues, we have been forced to rely on the school system. In this area, our son has made almost no progress. In a few areas, he has even lost ground. To state so simply that he has made striking progress is somewhat misleading, also. In one area, yes, he has. However, that isn't the complete picture. When our diagnosis was denied by BCBS, our savings was completely depleted. The combination of my loss of income and our son needing such a variety of piece-meal services in an attempt to deal with sensory and social issues, we have also burned through my retirement. The point of my son's story was the cobbling together of unorthodox services to do the best we can do, instead of being able to get the actual services prescribed by the doctors. The way you combined the statement about a "child who made striking progress" with Ms. Lemerand's statement actually makes it sound like she is saying that it doesn't surprise her to hear that kids are making striking progress, rather than her intended statement that it doesn't surprise her to hear of parents cobbling together and making do without the services they actually need for their children and/or giving up all their savings, college money for siblings and knowing they will never be able to retire in order to get services. It just seems slightly misleading to report on an article that is about the cost of autism, but not to have anything in your report about those costs.

One IEP Struggle

The Arizona Republic reports on one family in Gilbert. Experts said that the boy had high-functioning autism but the school's position was different.

"It is confusing for families to have a diagnosis in their hands and come to the school and have the school do a little bit of a different process," said Dr. Julene Robbins, the district's lead child psychologist. "We want to try to verify that diagnosis is true, but also, we have to measure by state law and federal law how that (disability) impacts their education."

That requires a series of tests and observations, she said.

Arizona special-education law says that to be diagnosed with autism, the child's disorder must "adversely affect educational performance."

Children with mild disorders may have great test scores but struggle socially.

"Academics are just part of education," [child psychologist Joseph] Gentry said. "Social skills, self esteem - all of those things are part of what education is all about."

[Dr. Daniel] Kessler said children with autism need special therapy to learn social behaviors.

"Many schools seem to think that if we integrate a child with autism into a mainstream . . . classroom and present them with models of mainstream behavior, that the child with autism will learn those through osmosis," Kessler said.

"That doesn't happen. You have to have role play, you have repetition, you have practice."

Michigan Mandate and the Costs of Treatment

The Detroit Free Press reports:

State Sen. Randy Richardville, R-Monroe, vice-chairman of the Economic Development and Regulatory Reform Committee, has scheduled informational hearings, partly in response to two bills that have passed the state House but must be considered by the Senate.

Meanwhile, the fight over costs has wound through the courts, too. Blue Cross Blue Shield of Michigan has settled two cases -- one as recently as last week -- with families who asked the courts to force the insurer to pay for at least part of the costs for past behavioral therapy for their autistic children.

It's not that Blue Cross didn't want to cover the costs for autism treatments; in fact, it offers an option to employers to buy that coverage, said Helen Stojic, spokeswoman for Michigan's largest insurer. To keep plans affordable, insurers need to offer flexibility rather than meet state mandates, she argued.

The debate brings into focus the exorbitant costs for treatment and the lengths to which families will go to pay them -- draining retirement plans and college funds, selling homes and moving out-of-state to find insurers who routinely cover such costs.

At the end, the report tells of one child who made striking progress and it ends with an apt summary:

Such stories don't surprise Pamela Lemerand, project director at the Autism Collaborative Center at Eastern Michigan University, where she knows that even the center's low-cost services -- just $65 an hour compared with some that top $100 -- are still out of reach for some families.

"Even poor people can go into an emergency room and get service, but in this instance, your child is out of luck."

Parents, Schools, and Meetings

At the Indiana Resource Center for Autism, Kim Davis explains the tensions between school officials and parents. One source of friction is the threat of lawsuits:

Sometimes tensions become so high that parents want to involve an attorney. The threat of a lawsuit creates incredible stress between and among school staff and family. Honest relationships will suffer and ultimately the child loses. Although legal alternatives are part of the due process guarantees of special education law, it should be used as a last resort.

Sometimes, however, it is necessary to threaten or start legal action. In his excellent book, Distinguishing Disability, Colin Ong-Dean tells an all-too-typical story:

What it takes to make these claims work is not just the threat of a hearing, although even that first step is something many parents find daunting. When Sharon made her hearing requests, the school refused, both times, to enter mediation and pursued its case all the way to the scheduled day of the hearing. Both times, the hearing officer ordered them to meet briefly one more time to try to reach an agreement, which resulted in agreements favorable to Sharon. "I came with guns loaded," Sharon explains. She had an attorney and expert witnesses lined up to support her claims. Only then, after Sharon had spent many hours and thousands of dollars preparing her case, did the school meet her demands, understanding that she would be a formidable opponent at the hearing.

Or to quote a line from The Untouchables: "You can get further with a kind word and a gun than you can with just a kind word."

A Simple Test?

A British researcher suggests that it may be possible to develop a simple urine test for the presence of autism. Lisa Jo Rudy sensibly urges caution:

While the possibility of a simple, definitive test for autism is extraordinarily compelling, there are plenty of questions to raise about its validity. I've written the researcher with specific concerns, and hope to hear back from him soon. Most important, of course, is the very basic question: "do people with autism really have more GI issues than other people?" Quite a few studies have suggested that this IS the case -- but many other studies suggest that it is NOT the case. Just last week, a study came out which shows that special diets are NOT effective for autism, and last year a study from the Mayo Clinic showed that children with autism are not more likely to have GI issues than anyone else.

Left Brain/Right Brain notes another reason for skepticism:

At the very least, relying on studies from Alternative Medical Review, studies co-authored by Andrew Wakefield, studies from Medical Hypothesis and studies co-authored by Jim Neubrander should give rise to questions over the credibility of this paper.

Bottom line: parents and policymakers should avoid raising their hopes too much when the media announce a "breakthrough" in autism treatment. In my book research, I came across an article in the November 2, 1969 Los Angeles Times that touted "holding therapy." Three UCLA faculty members knocked it down in a November 11 letter to the editor, saying its viewpoint rested on "unscientific and highly speculative notions as to the nature of the disease." Readers of Let Me Hear Your Voice may also recall Catherine Maurice's rueful comments on her experience with the "therapy."

Database for First Responders

The San Diego County Sheriff has an innovative way of dealing with the often-problematic interaction with first responders and people with autism and other disabilities. The San Diego Union-Tribune reports:

The regional law enforcement database identifies those with autism, dementia or other mental disabilities in the region and lets officers know how to best deal with their disabilities when encounters occur.

“For any kind of first-responder, they know that when they get there, they’re going to find something a little bit different,” said Cary, president of the local Autism Society of America chapter.

The program also makes it easier to find lost or missing at-risk people and uses facial recognition software to identify those who cannot speak or have dementia.

Reports of missing at-risk individuals have increased by 12 percent over the past year, the Sheriff’s Department reported. Also, six in every 10 Alzheimer’s patients will wander off at some point in their disease, according to the Alzheimer’s Association.

Brian Herritt, a police officer at Palomar College, came up with the idea for the program after his own autistic son, also named Brian, wandered off one day as he was unloading groceries.

The Autism Society of America has more here on the program, "Take Me Home."

Kevin Healey

Kevin Healey is the UK's leading advocate for people with autism. He has Asperger's while his twin brother has autism.

Coalition Building in Missouri

Writes Bill Bolster, Autism Speaks Missouri Chapter Advocacy Chair:

Our coalition remained strong and resilient as we gathered again in the summer of 2009 to modify bill that had been introduced in the previous legislative session. With another year of experience in our pockets, along with bills filed in both chambers that had strong support from Republicans and Democrats, as well as strong medical, legal and moral arguments that lent support to each word of the bills, we went to work as a community to prepare for the 2010 session. From all corners of the state, we worked together on weekly phone calls, attended hearings as a group and pushed for passage as one community voice.

With the amount of awareness that had been raised during the last two years in the legislature and with the strong vocal support of the governor, we thought we might see passage of our bill as early as the first half of the 2010 legislative session. When this deadline passed, our coalition continued to fight for passage. On the third to last day of the session we finally watched our bill pass the legislature. While passage of the bill brings insurance coverage to the families that need it for diagnosing and treating autism, Missouri autism community benefited from this experience in a way that is even more significant. We have formed a coalition of families and organizations that have learned how to work together to bring about an answer to a community problem. With passage of autism insurance reform behind us, we are a community of friends and colleagues who can now work together in the future to achieve other objectives that will be of importance to families and people with autism.