Thursday, July 27, 2006

A Step Forward for Autism Treatment in Tennessee

Tennessee Gov. Phil Bredesen last month signed into law the "Autism Equity Act" which says that health insurers whose coverage plans include services for neurological disorders must provide services to children with autism up to age 12.

The spirit of the law is clear: health insurers cannot discriminate against children with autism spectrum disorders when it comes to claiming services. If a health insurer covers neurological disorders, they have to cover autism. (What's a neurological disorder? publishes this list, citing a National Institutes of Health public record.)

This is potentially a big deal for families, as parents of kids with autism know. Health insurers often don't cover, or severely limit coverage of, therapies like applied behavior analysis and occupational therapy. The costs of those services accumulate quickly and can run tens of thousands of dollars a year.

It will be interesting to see how this plays out. The Tennessee law also says that insurers must apply the same kinds of deductibles or co-payments that patients with other kinds of neurological diagnoses must pay. Could insurers rewrite their coverage rules to limit their liabilities? I can't tell from the way the law is written.

The bill generated very little in the way of media coverage, so it's difficult to tell whether there was much debate. The Tennessee legislature's website says the 30-member Senate passed the bill unanimously but it does not record a House vote. The governor's website lists signing ceremonies, but not this one. The Tennessee Disability Coalition, an advocacy group, posts some photos of the ceremony.

There was no specific mention of autism-related dollars in the state budgets for 2007 which were posted online, though the legislature published a fiscal impact note for the autism law. It is vague, projecting that local, state and federal government costs and health insurance premiums will rise by more than $300,000. That's not even chicken feed in a $26 billion state budget, of course.

So, while the details of this new law plays out, let's all figuratively join Chattanooga Mayor Ron Littlefield for a reception and celebration on Aug. 2. As the mayor puts it: "“The Autism Equity Act is a key piece of legislation for people with autism and will help ease the financial strain so many families are experiencing."

Friday, July 21, 2006

Autism Guide for Classroom Teachers

The National Education Association, the 2.8 million-member teachers union, recently published a useful guide for classroom teachers designed to help them understand what autism spectrum disorders are, how they affect children, their development and behavior in unfamiliar and stressful situations such as hectic schools and busy, noisy classrooms. The 44-page guide called "The Puzzle of Autism" reviews some definitions and characteristics of ASDs, discusses strategies for behavioral intervention, communication and social skills and even has some information about directions for future research in the area.

The NEA worked with the Autism Society of America to produce the guide and says its seeks to answer the question, "How can general education teachers and other educational professionals address their complex communication, social and learning needs?" To the NEA's credit, this report doesn't pretend to be the be-all, answer-all panacea for teachers, rather "it should be considered a brief summary of these students’ strengths and deficits, the challenges these deficits create in the classroom, and strategies that education personnel can use to facilitate positive educational and social experiences for students with ASD."

The guide is well put together, though it is fair to say this will be most useful for teachers who have a high-functioning kid in class. The examples and illustrations emphasize teachers dealing with students who have verbal and writing skills. Still, the information is valuable and intended for an essential audience -- educators -- who, the NEA says, are seeing more and more students with ASDs in their mainstream classrooms.

Parents could use this guide, too, not only to share it with other parents, their family members who may have trouble understanding what's going on with your child. You could study what the teachers' guide says -- consider it a baseline for the-least-educators-can-do in class -- and then map it against what you're seeing when you visit school, or discuss educational goals (including special classroom provisions) in meetings for a student's individualized educational plan.

The NEA was offering to send printed copies of the report for free to any one who requested one. In early June, the group posted this note on its website: "Due to an overwhelming number of requests for the guide, they are temporarily out of stock. They will be reprinted in the near future so check this page later for updates."

For future reference, I've added a link to this guide under "Reports and Books" in the right-hand column of this blog.

Wednesday, July 19, 2006

One In A Hundred

The news from the latest study to catalog a rise in children with autism spectrum disorders, in the July 15 issue of The Lancet, says that evaluations of children at the Guy's and St. Thomas' Hospital in South London show that 116 in 10,000 had a type of autism spectrum disorder. The authors of the report said they extrapolated that to mean that one percent of British children had a form of ASD.

What's interesting to note in the study, and media coverage of it in this BBC article, is that the scientists and doctors are all looking ahead to what needs to be done. There's no debate about the facts of a rising case load. Though the authors note that reasons for the increase are unclear -- they say it could be better evaluations, a broader "diagnostic criteria" or increased incidence -- they go on to say: "Services in health, education, and social care will need to recognise the needs of children with some form of ASD, who constitute 1% of the child population." In other words, we have to deal with this situation better than we are now.

The scientists who wrote the study note that "recent reports have suggested that the prevalence of autism and related spectrum disorders (ASDs) is substantially higher than previously recognised. We sought to quantify prevalence of ASDs in children in South Thames, UK," that is, the London hospital.

The Lancet is a subscription-only publication, and free registration is required to see an abstract. The key statistic from the abstract: "The prevalence of childhood autism [in this study] was 38.9 per 10,000 and that of other ASDs was 77.2 per 10,000, making the total prevalence of all ASDs 116.1 per 10,000."

Addendum: The British study is important because it provides yet another source, in addition to statistics cited by the U.S. Centers for Disease Control, that ASDs among today's children are common -- at 1 in 166 births, more common than visual or hearing impairments and cerebral palsy -- and growing. That's a lot more than, say, 1989, when Susan Senator was a new mother, wondering about her son's development, as she writes in "Making Peace With Autism":

"We knew of no one with autism. The pro-football star Doug Flutie had not yet raised national awareness of this disorder. His autistic son had not yet been born. Back then, doctors still cited an incidence of two in 10,000 births, compared with today's one in 166."

Friday, July 14, 2006

Another Application for Behavioral Theory

It's easy to see why the "Modern Love" column, "What Shamu Taught Me About a Happy Marriage," in The New York Times is among those articles most e-mailed to friends three weeks after it first appeared. It is well written and funny and illuminating about her attitude toward her husband Scott, and says something about how married people learn to live with each other's quirks and habits (or don't).

In the piece, writer Amy Sutherland tells of how she learned to reshape her husband Scott's annoying behaviors by studying the techniques that animal trainers use to get their subjects to do tricks. She writes:

"The central lesson I learned ... is that I should reward behavior I like and ignore behavior I don't. After all, you don't get a sea lion to balance a ball on the end of its nose by nagging. The same goes for the American husband."

Parents of children with an autism spectrum disorder, those who are familiar with applying classic behavior theories to help their kids comply with ordinary demands, adapt to situations and learn, know what's coming next. Sure enough, Amy goes home and ignores Scott's tantrums about losing his keys, and kisses him when he puts dirty clothes in the hamper. "When my training attempts failed, I didn't blame Scott," she writes. "Rather, I brainstormed new strategies, thought up more incompatible behaviors and ... considered how my actions might inadvertently fuel his."

I realize that this humorous column is nothing like living with a child on the spectrum. But I hope the knowledge that others try to coax better behaviors out of the people they love by using these classic techniques can make you smile.

Thursday, July 06, 2006

Why Elections and Court Appointments Matter to Parents of Special Needs Kids

In a 6-3 ruling issued June 23, the U.S. Supreme Court said that parents cannot expect to get reimbursed for the cost of expert testimony when they win a special education legal proceeding on behalf of a disabled child.

The point of law in this case, Arlington Central School District Board of Education v. Murphy, is narrow, but the implications -- combined with other recent outcomes in Washington, D.C. -- mean that parents should pay attention to who wins seats in Congress in November and the White House in 2008.

In this case, the Arlington, N.Y., school district won its point that the Individuals with Disabilities Education Act of 2004 (known as IDEA) does not spell out a school district's responsibility to pay for experts which a parent hires to help win a dispute. (The law does spell out reimbursement for legal fees.) Special education lawyer Peter W.D. Wright has written a clear explanation of the Arlington v. Murphy case. The key point is that Judge Samuel Alito's majority opinion in the ruling (see link above) states that parents can't be reimbursed for expert witness fees in a special education legal case which they win, because Congress didn't spell that out specifically in the law.

So, why does that matter? Well, if you are a parent of a kid with a disability like autism, the last thing you want is a legal fight with a public school district. More likely, you are hoping for a good working relationship, one that brings out an individualized education plan (IEP) to guide educators working with your child to make important progress in the short term and succeed in the long term.

But what if you don't have that relationship? What if you disagree? Many school districts have full-time special education administrators, child development specialists and lawyers to help them understand how the law applies to specific children's cases -- and how to defend their legal positions. What do parents have? An understanding of their kid's needs, a supportive family and friends if they are lucky. Legal rights which federal law provides. But if they don't have legal expertise or access to it, they might be out of luck against a well-armed school district.

This point about an imbalance of power was lost on the Supreme Court in its 2005 decision, Schaffer v. Weast, which says that the burden of proof in special education cases falls on the party seeking relief. (Often that means the families of special needs kids.) Again, the Arlington v. Murphy case is narrower, less important in the big scheme of things. But it points to a reality: the imbalance of power, one that puts parents in an uphill climb before the trip begins, will continue. It will continue unless the federal laws regarding special education change to address this imbalance. And that won't happen unless advocates for disabled children seek out candidates who understand this point of view.

So, in the coming election season, if you have the chance, become a citizen. Ask questions. While it might be difficult to ask questions in a public forum related to your particular case (and if you do ask, it could be difficult to get straight answers), there are other questions to ask a candidate: What does he or she think about IDEA? Does it need changes? What kinds of changes?

For parents of children with autism spectrum disorders, you could ask what should Washington's role be in addressing the rising number of autism cases? More specifically, you could ask whether they are a co-sponsor of the House Bill 2421, the Combating Autism Act of 2005, which provides funding for autism screening across the nation, regional centers for medical care for people with autism, and research into interventions for ASD. Don't forget to ask them why they are for or against it.

Tuesday, July 04, 2006

Child Development and The Value of Early Screening for Autism

Typical children develop in typical ways, starting very early in life. There are infant smiles to familiar voices and turns of head when they begin to recognize their name spoken aloud. There's the ability to speak and an interest in various toys. These milestones occur at typical ages (7 months, for example, for baby to respond to her own name) but unless a parent also happens to be a pediatrician attuned to developmental delays, it can be difficult to know what to look for until there's reason to wonder if something is wrong. (Why isn't my 18-month or two-year old talking much? is one such question.)

The rise in autism cases has led to the creation of several web resources to help parents and others with questions:

The Centers for Disease Control has a website devoted to developmental milestones for children as part of an effort to educate the public and medical practitioners about what to look for. has a lot of information about screening and early intervention services. Start at their home page and then check out the page called recommending screening tools.

Who does the screening? You can start with your pediatrician's office, but it helps to look at the checklists on the websites like those above; some pediatricians are a target audience for education and awareness about developmental delays. States like Massachusetts have early intervention specialists who can visit your house and test your child. Again, it helps to compare what you see with your child, his behavior and skills, and how he compares to what is typical on the developmental checklist.

The answers to these evaluations may not lead to an autism spectrum disorder. But whether they do or not, they will help guide you to next steps to take and services to seek to help a child grow and develop.