The Autism Numbers That Add Up to 1 in 166

Today's Wall Street Journal Online carries this important column analyzing recent research and claims about the prevalence of autism spectrum disorders in the United States. (The Journal website is subscription only, but you can read selected stories for free, including this one for a limited time. Click here.) The piece is important because it was prompted by "several skeptical readers" who said they doubted the claim that one in 166 children in America have autism. The writer, Carl Bialik, concludes that research evidence supports the estimate, but that claims that there's an "autism epidemic" are not supported.

Autism is a hot media story right now. You can search Google News for autism and come up with more than 1,000 hits any day of the week. Around the world, there are conferences, coverage of research papers, press releases. In the U.S., small newspapers profile a local school or program or educator or parent working with children on the autism spectrum. Major newspapers and magazines pick up on trends, cover court cases and political battles over funding for special education, research and insurance benefits. National magazines and broadcast outlets pick up on the big-picture of what is happening. (To read a summary of Newsweek's recent cover story, click here. To hear a National Public Radio show on autism this week, click here.) Radio show host Don Imus talks about the Combat Autism Bill in Congress. Comedy Central, Jay Leno and other entertainers host high-profile benefits that receive coverage.

With all this attention, there's bound to be a backlash of skepticism. It's easy to imagine that people who don't live with autism every day, who don't understand what's involved could start to think it's a hyped-up, overrated, problem. (Some cynics suggest that parents actually seek an autism diagnosis for their child so they can win sought-after services. If you want to get a whiff of this dynamic, check out the comments section of this Freakonomics blog entry on autism from September, but do so with the knowledge that it's anything but uplifting.)

These kinds of responses are a natural byproduct of media reports about autism. And they need an answer if a national discussion about autism is to move beyond arguments over how big a problem the nation faces and on to responses. Today's Journal piece cites experts at the Centers for Disease Control (click here and here) to back up the claim that between 1 in 166 and 1 in 500 kids in the U.S. are diagnosed with ASD.

What makes claims about the rise in autism cases difficult to substantiate is the fact that the diagnostic criteria is relatively new. It's based on the DSM-IV, the 1994 American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders. This suggests that more children are receiving the autism diagnosis because the definition includes a spectrum of problems so that, for example, it encompasses some very verbal children who may have Apserger's to children who communicate without words. It also suggests that, as awareness of autism grows, pediatricians and doctors are more apt to recognize developmental delays that lead to an autism diagnosis. (The Journal notes this flier distributed to pediatricians from 2004.)

As parents and other advocates continue to push for more research into the causes and potential treatments for autism, and more resources for needed services and supports, look for more reports like today's Journal article, to continue building awareness. It's awareness of the problem that can lead to support for solutions.

The Long-Term Scope of the Autism Challenge

Money: $100 million a year, for about a decade. That's what's needed to crack the code of what causes autism spectrum disorders, and to begin the task of identifying new methods of treatment beyond what's available today. That's what Alison Singer, senior vice president at Autism Speaks, told the audience of On Point, a news and public affairs call-in show on WBUR, Boston's National Public Radio affiliate. (You can access an audio recording of the show by clicking here.) Singer's point is that government support for autism research is vital-- and that's an important component of the Combat Autism Act now before Congress. (Read background on the legislation here.)

The other message that came through on Monday's show devoted to "confronting the tide of autism" is that we've only just begun to confront the scale of the problem facing the country. That idea echoes the November 27 Newsweek cover story about the lack of services and supports for adults with autism spectrum disorders. (One of the authors of that article is on the show. Read the Newsweek piece by clicking here, or a summary of it here.)

Other highlights of the program included comments by Pat Levitt, a medical researcher in autism who is director of the Kennedy Center for Research on Human Development at Vanderbilt University. Levitt says autism research is difficult. It's challenging to understand human communication and how such skills develop in a typically developing person is tough; to understand how it works in a person with autism is tougher; and when you consider that there are more than one type of autism disorders on the spectrum, that makes it more complex. Still, he believes there's a combination of genetic and environmental triggers at work.

The show also includes questions and comments by several parents and grandparents. As a group, they keep their emotions in check. But you can hear the strain in some of their voices as these families affected by autism deal with a big disconnect: the need for help, now and in the future, and the lack of answers about what to do.

Gift Ideas for Kids with Autism

Parents who need ideas for grandparents (or others) to help choose gifts this holiday season should check out a helpful New York Times article published yesterday that explains the particular challenges kids with autism spectrum disorders have with learning through play, alone and with peers. "For a child with autism, the right kind of play at the right time is crucial," the article notes. "Play can help deliver some basic communication and life skills that may not come naturally."

You can read the article here. It includes links to a special Toys R Us catalog (at www.toysrus.com/differentlyabled) and Discovery Toys, as well as citing several toys and book suggestions.

One example: If your child has any experience with video modeling -- learning by watching what other kids do, and imitating their actions -- the article suggests looking at the DVD version of Cranium's "Hullabaloo" game, which has kids following directions to participate in the game.

Top Autism Advocates of 2006 -- Who Made the Most Impact?

Who do you think are the people and groups who made the biggest impact for people with autism and their families in 2006? I'm compiling a list for an upcoming article on Autism Bulletin. You can send me your nominations via e-mail at michaelsgoldberg AT yahoo DOT com. Or you can simply post a comment below this article by hitting the "comment" button.

You could name individuals (maybe radio talk show host Don Imus, who kept discussing the Combat Autism Bill on the air? some parent who posted important or moving videos on YouTube? An awesome teacher? A researcher? Author? Advocate? Parent?) You could name a group, a school, a medical or research facility. Anyone you feel made a difference for the autism community. All nominations considered, but please include information about the person or organization so I can look them up or contact them to find out more.

Let me know your nominations by December 10. Thank you.

Marking the Death of Bernard Rimland, Autism Researcher and Organizer

There's a telling line in today's Los Angeles Times article about the death last week of Bernard Rimland, 78, the autism researcher who smashed the "refrigerator mothers" myth as autism's cause with his 1964 book about the subject, and later founded the Autism Society of America, the oldest and largest advocacy group.

"This was not the career path he had planned," the article notes, matter-of-factly.

Who knows what work Rimland would have pursued with his doctorate in psychology. The fact was that once he set about trying to understand why his son Mark was so difficult to reach, he embarked on a decades-long project to share what he had learned about autism, to help other parents figure out what kinds of approaches were effective. By day, he worked as a Navy researcher in San Diego, and on nights and weekends he studied, wrote, talked with researchers and offered support to other parents seeking help, as the Los Angeles paper recounts. (Read the article by clicking here.) In 1964, Rimland published "Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior," a book that debunked the previously reigning theory offered by psychoanalyst Bruno Bettelheim that autism was a child's response to cold, unfeeling parenting styles of some mothers.

In an article on the website of the non-profit Autism Research Institute (which Rimland founded), he describes how he began his efforts to help his son Mark, born in 1956.

“Mark was a screaming, implacable infant who resisted being cuddled and struggled against being picked up. He also struggled against being put down. Our pediatrician, Dr. Black, who had been in practice for 35 years, had never seen nor heard of a child like Mark. Neither Dr. Black nor I, who at that time was three years beyond my Ph.D. in psychology, had ever seen or heard the word ‘autism.’”

When their son turned two, Rimland's wife recalled reading in college about children with symptoms like Mark presented. He found the word "autism" in his wife's textbooks stored in the garage. (Read the Autism Research Institute's article here.) This article explains how Rimland became a big backer of Applied Behavior Analysis as a teaching methodology for kids with autism. In recent decades, Rimland established the Defeat Autism Now project, to research biomedical treatments for autism spectrum disorders. He also was a leading voice for ridding children's vaccinations of preservatives that contained mercury.

Simple, Revealing Letters to New York Times on Autism Article

The New York Times in Sunday's paper is publishing six letters to the editor responding to a November 21 Op-Ed column "Studying Autism Isn't Enough," by the parents of a 4-year-old girl with autism. (The newspaper posted the letters on Saturday night, and you can read them online here.)

What you learn by reading these letters is that the rise in known cases of children with autism means that more families are struggling to find the right kinds of services; that the struggle is national in scope; that wealth only answers part of the challenge, because the supply of services is so short; and that the challenge grows geometrically when the children become adults.

Clearly, the authors of the op-ed, Cathryn Garland and Michael O'Hanlon, were on to something when they suggested that the emphasis on research in the Combat Autism Act now before Congress is understandable and warranted, but fails to address the whole picture.

Read the original column in the Times here. Read about the Combat Autism Act here.

6 Tips for Using Autism Bulletin

I've received some questions from readers of Autism Bulletin about using this website. Here's a quick review of what you can do.

1. Search. You can search the archives of Autism Bulletin using the search bar at the top of this page. It looks like this:
Just enter the text and click on "search blog" to see results of your search.

2. Comment. You can comment on any article by clicking on this "comments" word that appears beneath it. It looks like this:

When you click on this a box will appear that asks you to type in some random letters. This act prevents automated web "bots" from adding nonsense comments to this website. You can use your name or post anonymous comments.

3. Share an article with a friend by clicking on the "forward" button which appears beneath every article and looks like this:

A screen will appear asking you for your name and e-mail address and your friend's e-mail address. Click the "send e-mail" button and you're done.

4. Subscribe so that you receive new articles automatically. One way to do this is to enter your e-mail address in the box at right and click "subscribe." Another way to do this is by clicking on the orange icon which appears on the right side of this web page and looks like this:
This icon is for RSS feeds which you can receive if you have a blog reader like Bloglines, which can be a useful for keeping all your website subscriptions in one place. Click on the icon and follow the instructions.

5. Labels are useful for navigating past articles and recurring themes on Autism Bulletin. Clicking on the "Congress" label, for example, will take you to a list of recent articles relating to that subject label.

6. You can always e-mail me at this address: michaelsgoldberg AT yahoo DOT com. Send comments, questions and suggestions and I will respond. Thanks for reading Autism Bulletin.

Good Will Is Not Enough To Help Kids With Autism

In an Op-Ed article in today's New York Times, two parents of a 4-year-old girl with autism argue that the nation must do more -- beyond the Combat Autism Act now before Congress -- to invest in children's development so they can lead productive lives.

The article, "Studying Autism Isn't Enough," is by Cathryn Garland and Michael O'Hanlon. (Click here to read it.) She's a director at Discovery Communications, the cable TV company that runs the Discovery Channel. He's a senior fellow at the Brookings Institution, where he is an expert on homeland security, missile defense and defense policy. Here, the writers argue that the Combat Autism Act's emphasis on research into the causes of this spectrum disorder makes sense for now, but it is not enough because it can cost a small fortune (they cite their experience of paying about $50,000 per year for a preschool-aged child) to get effective treatments. They write that "You have to be lucky or rich to get proper care for your young autistic child." Luck refers to winning rare Medicaid coverage for therapies like Applied Behavior Analysis, or working for one of the few employers such as Microsoft and Home Depot which provide health plans that pay for autism-related services.

Another argument this article asserts: it makes economic sense to invest in costly therapies while autistic children are young, so that there's a greater chance they will be able to contribute to society when they grow up, rather than relying on the nation's social safety net. The authors write:

"If we do not help these children, we are essentially condemning them to a lifetime of disability, unemployment and, for many, institutionalization. On human grounds, this is tragic. But it's also bad economics. The few hundred thousand dollars needed to do intensive early intervention for four or five years — while a lot — is only one-tenth the expected cost of supporting someone for a lifetime on the dole."

Last year, O'Hanlon helped organize a special one-day conference of speakers called "Autism and Hope," at Brookings in Washington, D.C. (Click here for more information about the conference, including a transcript of panelists including Dr. Stanley Greenspan, who developed the Floortime method of teaching young children with autism.)

For recent a Autism Bulletin piece on efforts to pass the Combat Autism Act, see here.

What To Do When the Autism Diagnosis Arrives

Every family's autism odyssey is different, but most start with variations on three themes. There's the sense parents get as they observe their child that something is not quite typical about his development. There's the quest to figure out what is going on (and the hope that it's just a temporary blip). And there's some form of evaluation -- from a doctor, from a state early intervention agency, from a school district representative -- that leads to an autism spectrum disorder diagnosis.

Whether that diagnosis is classic autism, Pervasive Developmental Disorder -- Not Otherwise Specified (PDD-NOS), or another band on the autism spectrum, the instant and urgent mission of every family is to figure out what to do next.

Autismvoice.com, a website created by Sandra Sinclair of New York State, has created what she calls a mini-course to address this question. The outline of the course is clear and well defined and worth reading -- with the knowledge that Ms. Sinclair presents information informed by her experience parenting her young son with an autism spectrum disorder. This means that she clearly prefers certain teaching approaches such as Verbal Behavior Analysis over others (such as Applied Behavior Analysis, or ABA) and injects her views into her presentation. Even with this bias, the kind of information presented in this mini-course is useful, thought-provoking and worth reading. It comes with links to the Autism Society of America, the Wrightslaw "yellow pages for kids with disabilities" website and the Doug Flutie Jr. Autism Foundation, which have valuable online resources.

To get the course, you need to register by e-mail and then receive seven installments over the course of a couple of weeks. Here's a general outline of the course below (the e-mails come with much more information):

1. Understand the symptoms of autism, using the American Psychiatric Association Statistical Manual.

2. Get an evaluation, if you need confirmation of the diagnosis. (Editor's note: get a medical doctor's evaluation in writing.)

3. Educate yourself about various intervention options, school programs and home-based services options.

4. Examine whether you need an advocate or attorney. (Editor's note: make sure you get references from other families about the people you consider engaging.)

5. Get support. Parenting a child with autism is stressful and can lead to problems like depression. Find a support group, or make sure you get counseling help if you need it.

6. Prepare for a meeting with your school district to talk about your child's Individualized Education Plan (IEP).

7. Look for appropriate teachers and therapists.

The Autismvoice.com project is impressive for its clear public service mission, and Ms. Sinclair has built a library of podcasts where she explains her views on different therapies, for example. Her website also contains short pieces that try to get parents to acknowledge their difficult feelings -- like embarrassment in public when an autistic child has a tantrum. What's great is it's all done in a spirit of helping other parents also working to meet this life challenge. To see more clearly as they begin the odyssey.

When Kids With Autism Grow Up

"What Happens When They Grow Up," is the Nov. 27th cover story for Newseek magazine that paints a clear, sometimes dire, picture of life for children with autism spectrum disorders who grow up without as many services -- or opportunities for support -- as they had when they were in school. If you're a parent who's wondering how to communicate with far-flung relatives and friends about the hard-to-understand challenges your family faces, this could be a magazine article to share with them.

The article uses clear anecdotes to demonstrate the challenges parents of young people with autism face -- what's it like to have an autistic teen in the house, the efforts families spend to find services and therapies to help kids with autism develop, the stresses this disability can put on a family's activities and finances. The article uses testimony from families and experts to raise pointed questions facing families as parents (also known as No. 1 Advocates) and their children grow older. What happens when services run out after the kid turns 21? Is it fair for parents to ask their autistic child's brother or sister to help support their disabled sibling? And what happens when parents are no longer around?

Newsweek points out that there are not sufficient resources devoted to answering these questions. There aren't enough housing or employment options, and there's a problem looming as the population of people with autism grows.

The article also points out that parents' work as advocates has raised awareness and money for research, and it could lead to an act of Congress. The magazine reports that the House, which has stalled efforts to pass the Combat Autism Act, could act on a compromise bill in early December.

To read the Newsweek story, click here. To read more about the Combat Autism Act and its prospects, click here. The New York Times recently wrote about highly-functioning students with autism who are attending college. Read about that here.

A Mating Theory of Autism's Roots

Simon Baron-Cohen, director of the Autism Research Center at Cambridge University in England, suggests that scientists should spend more time studying the traits of parents of children who have autism in an attempt to understand more about the genetic roots of the disorder.

In his piece "When Two Minds Think Alike," published in the November issue of Seed Magazine, Baron-Cohen says new research from his lab "implicates genes from both parents" and leads to a theory "that both mothers and fathers of children with autism (or its milder variant, Asperger Syndrome) share a common characteristic and have been attracted to each other because of their psychological similarity."

In this context, that similarity is what Baron-Cohen calls "systematic thinking," and describes people who grow up to be good at engineering, computer science, accounting and other professions that require sustained analytical thinking. When a grandparent, especially a grandfather, is in this line of work, the odds for a child with an autism spectrum disorder rise, Baron-Cohen theorizes.

He says that researchers should probe further whether autism more common in families where both parents are "strong systematizers" and whether mothers of children with autism "may be more likely to have testosterone-linked medical conditions."

This piece builds on another article Baron-Cohen wrote in The New York Times in 2005, called "The Male Condition" in which he discusses his brain research and theory that people with autism show an extreme of the profile of masculine traits of thinking systematically and not empathetically. (Read it here with the knowledge that it was published around the time former Harvard President Lawrence Summers' sexist comments about why there weren't more women in the science professions.)

Thanks to AutismLink.com for pointing out this article. AutismLink is a non-profit organization based in Pennsylvania that provides support and information -- including e-mail news alerts -- to families of people with autism.

Autism Bill Still Alive in Lame-Duck House Session

The Autism Society of America (ASA) today said that Joe Barton, the Texas Republican who has been blocking the Combating Autism Act from leaving his House committee for a vote, "has approached the autism community to identify a possible compromise on this important legislation."

The ASA credits advocates' pressure on Barton for this development, and the organization's statement goes on to say:

"While negotiations are still underway, ASA is hopeful that they will yield a compromise that can be passed during the lame-duck session. ASA is working with Chairman Barton's office and other leaders in the autism community to ensure that a comprehensive, strong and effective bill is enacted."

This is potentially big news. The run-up to the November 7 midterm elections included protests and other efforts to pressure Barton, who chairs the House Committee on Energy and Commerce. In recent months Barton was blocking the Combating Autism Act, a bill already passed by the Senate which would provide about $900 million for autism research and services over the next five years. (For more background on this issue, click here.) Last week, the Houston Chronicle covered protests and pressure on Barton by parents and others such as syndicated radio host Don Imus. (See "Stalled Autism Bill Shows Funding Rift" for the newspaper story and more about parents' protests here.)

It appeared right up until the midterm elections that Barton was holding fast to blocking the bill, including posting a statement on his website arguing that what's needed more than an autism bill are reforms at the National Institutes of Health, the nation's umbrella medical research organization.

Who knows what may have moved Barton to seek a meeting with autism advocates now? Maybe it was the pressure and protests. Maybe it was the midterm elections that produced a new Democratic House and Senate starting in January. Barton (who himself won re-election with 70 percent of the vote) is said to be among those Republicans preparing to run for the post of House Minority Leader in the new Congress. Maybe moving this bill now, while he's jockeying for votes among House Republicans, helps his candidacy. Whatever the reason, passing the Combating Autism Act now, before the next Congress convenes, would be a big deal.

It's big because people with autism need to get these research efforts and services under way now. Because it took almost two years of effort by advocates and lawmakers to get this far. And it's important to act now because it's unclear what would happen in the next Congress. Though the Democrats have identified health care and medical research as priorities, they will also face pressure to show that they can be responsible budget builders. Who knows what might get left behind as the nation's bills for the Iraq war, among other things, get tallied.

Election footnote for autism parents: The Senate co-sponsor of the Combating Autism Act, Republican Rick Santorum of Pennsylvania, lost his seat to Democrat Bob Casey Jr.

Going to College with Asperger's

Valerie is a math whiz who aced the SATs, but she has trouble picking up social cues, such as when her Carnegie Mellon classmates pushed her to the sidelines during a group project. (She received her Asperger's diagnosis while taking a year off from college.) But with the right supports, including a life skills coach her family hired as well as a supportive college administrator, Valerie earned her degree. She now has a retail sector job in Pittsburgh and still hangs out with her "nerdy" friends from college.

While acknowledging the big challenges facing students with Asperger's, this is a clearly drawn success story, the centerpiece of a New York Times "Education Life" magazine issue published November 5. The issue is headlined "A Dream Not Denied," and kids with disabilities including autism spectrum disorders take center stage. You can read about Valerie and other college students in the feature story "Students on the Spectrum" by clicking here. The story is about more than one young woman's accomplishments; it points out that colleges like Marshall University, Keene State College in New Hampshire, MIT, Boston University and a number of community colleges are hustling to figure out the best way to serve a growing number of students with developmental disabilities like Asperger's. For example, the story points out that:

"A top expert estimates that one in every 150 children has some level of [autism] spectrum disorder, a proportion believed to be rising steeply. With earlier and better intervention, more of these children are considering college, and parents, who have advanced them through each grade with intensive therapies and unrelenting advocacy, are clamoring for the support services to make that possible."

This article also notes that the Individuals with Disabilities Education Act requires colleges to provide some supports, but that college educators and administrators are working to figure out how much and what exactly to do. One disability specialist in Minnesota says interventions to provide social skills training at college is the least they can offer. "We would provide an interpreter to a hard-of-hearing person. Why don't we provide an interpreter [of social situations] for somebody with Asperger's?"

Other stories in this special education section describe the architectural designs at St. Coletta of Greater Washington, a school that serves children and adults with autism spectrum disorders and mental retardation. See the slide show at The Times website by clicking here. Buildings on the campus are color-coded to help students know where to go; there's a lack of nooks and crannies for kids with autism to hide out, unproductively; a sensory room for children to relax when they get overstimulated; and residential programs that teach non-verbal kids to use signs to prepare meals and food shopping lists.

The third article of note in this issue is all about college students with the developmental disability of Down Syndrome; read it (here) to see how parents of these kids work, constantly work, to help their children reach their full potential. And how some colleges are opening their doors to them, providing supportive environments.

The Struggle for A Teenager with Autism to Land a Job

Novelist and writer Ann Bauer this week published a poignant column in The Washington Post describing her family's experience working with her son Andrew over the past two years to find an entry-level job -- without success. (You can read the column by clicking here.)

Andrew, almost 19 years old, is described as sweet, smart, responsible enough to clean up the kitchen when his mom leaves him alone at home -- all good things. But he's also facing the challenges involved with lacking social skills. So while he can engage in conversations and passes the math test to work in a factory, and shows how dependable he is as a nursing home volunteer, it's his social awkwardness that makes others uncomfortable with him. And while Bauer says that the Target retail chain is well-known for hiring people with disabilities, their policy emphasizes the hiring of disabled workers with visible disabilities (like a wheelchair would represent) rather than the invisible challenge that someone with autism would present to members of the shopping public. (Bauer begins the piece by citing Andrew's size, 6-foot-3 and 250 pounds, and a reader is left to wonder if his physicality somehow magnifies his social awkwardness.)

Bauer has written for the online magazine Salon, and is the author of a novel, "A Wild Ride Up the Cupboards," about the efforts of a mom to help her young child who suddenly withdraws from the world. (Find more information about her and the novel by clicking here.) She concludes her piece by wondering if her continuing efforts to place Andrew in a job will help him and others among the growing population of children with autism spectrum disorders as they grow up:

"My son is one of many: Some time in the next decade, the Autism Society of America estimates, the number of people in this country who have autism will hit 4 million. I wonder if, when these children reach the age of 18, they too will be unemployable. Or if, perhaps, the work we're doing with Andrew now will mean a different experience for those who follow."