Useful Article to Explain Autism Diagnosis to Kids

The Interactive Autism Network has posted a clearly written article designed to help parents discuss an autism spectrum disorder diagnosis with their child. The article, ASD Diagnosis: What Do We Tell the Kids? uses sensitive language and explanations that outline how kids with autism have many different profiles. It has information for siblings, too.

These elements all make the article useful for families who are looking to understand how to communicate with their children—and also makes it potentially valuable as a tool to help explain what is going on in your family to others, from grandparents and extended family members to friends who may have trouble relating to what's going on in your house.

The article explains:

"Each individual with ASD is different. Some are diagnosed at 2 and others at 12. Some are spending their day in a protected special education environment, and others are out in typical elementary, middle, or high school classrooms with some level of assistance, or none at all. Some are intellectually disabled, and some have IQs in the normal or even gifted range. Regardless of intellect, emotional maturity generally lags behind that of typical peers. All of these factors, and more, will influence a parent’s decision about when to inform a child about the ASD diagnosis."

The article encourages parents to "assess what your child already knows and is ready to hear" and to explain the news at the right level, to be positive about a child's capabilities and, overall, to tailor the information to a child's own situation while explaining that autism is "a different kind of disability."

"People have a disability when something isn't working quite right, and they need extra help because of it. For example, a person who is blind may need a seeing-eye dog. People with ASD have a different kind of disability. They can see just fine, but they have trouble with other things. Sometimes they get 'stuck' on a behavior or topic, and they have a hard time understanding how other people think and feel—that's why sometimes it's hard to figure out what people want, or how to make friends. People with ASD need extra help with these things."

This article includes a list of references to research articles and additional resources including other articles from the National Autistic Society in the U.K., from the Autism Society of America, as well as links to resources for families, adults looking at what kinds of information to disclose to employers and others, the well known Sibshops support group for siblings of people with disabilities, and publishers who specialize in books about autism.

This is the kind of article, even if you are not ready to discuss anything, will help you lay the groundwork to study the issue so you can make informed decisions later. Take a look.

Special Series of Articles for Parents, Families New to Autism Diagnosis

BabyZone.com, a website for parents of young children, has just published a four-article series I wrote to help parents and families who are new to autism spectrum disorders—what autism is, what it means for their families, how to find ways to help their children. You can find the links to all four articles below:

What to Do When Your Child Gets an Autism Diagnosis
When your child receives an autism diagnosis, there are many more questions than answers about what it means and what you need to do. Here's how to start the effort to help your child grow and develop—and how to make sure you take care of everyone in your family (yourself included). More

Understanding Autism Spectrum Disorders
Experts like to point out that no two children with autism are quite alike. While that lack of clarity can be frustrating for parents, it demonstrates that researchers and doctors continue to refine their understanding of autism. Here is brief description of the places on the autism spectrum. More

A Basic Guide to Well-Known Autism Therapies

Because autism is a serious disability, and early intervention so important, families tend to do as much for their diagnosed children as they can fit into their lives and budgets. Here is a guide to the most well-known treatments and techniques for helping young children with autism make developmental gains, along with advice for evaluating these approaches and resources to find more information. More

Autism Spectrum Disorders: Finding Support & Resources
If your child was recently diagnosed with an autism spectrum disorder or you're just looking for support and advice from families in similar situations to yours, read on. More

Understanding Autism Spectrum Disorders

BabyZone.com, a website for expectant and new parents, has published an article I wrote entitled, "Understanding Autism Spectrum Disorders." You can find it by clicking on the link here.

This article is a primer for people such as parents and grandparents who are just learning about autism and who may not know much about the diagnostic criteria doctors and other child development specialists use to tell if a toddler has an autism spectrum disorder. It lays out the criteria for the different places on the autism spectrum while pointing out how difficult this whole process can be for parents:

It's common to hear autism experts say that no two children who receive the diagnosis are exactly alike. One person with autism may not be able to talk, while another will talk a great deal, nonstop, about subjects that interest him intensely. Some people with autism display very high levels of intelligence, while others may have mental retardation.

This lack of black-and-white clarity can be frustrating for parents and family members new to autism who seek to understand what's going on with their very young child and try to assess how this diagnosis will influence not just their child, but everyone in the family.

The article includes one important piece of new information: the American Psychiatric Association, the body that publishes the Diagnostic and Statistical Manual of Mental Disorders which defines autism, plans to update its published definitions in 2011, according to Autism Speaks and this tentative timeline from the association itself. That will be version 5, or DSM-V.

Other links that Autism Bulletin readers may find interesting:

• A preview version of the DSM-IV-TR (version 4, text revision), is available online via Google Books Search website, with some pages missing. Click here.

• The American Academy of Pediatrics paper, "Identification and Evaluation of Children With Autism Spectrum Disorders" in the journal Pediatrics, November 2007

• The Centers for Disease Control autism site

• The National Institute of Mental Health autism spectrum topic page

• The M.I.N.D. Institute at the University of California at Davis, a leading research site for early diagnosis of autism

• Unstrange Minds: Remapping the World of Autism (Basic Books, 2007) by Roy Richard Grinker, an anthropologist and father of a daughter with autism who writes an interesting discussion of Leo Kanner's work. Kanner was among the first doctors to document autistic traits in his patients.

• An interactive timeline charting the history of autism, by Jane Lytel

Also see:

What to Do When Your Child Gets an Autism Diagnosis

California Study: Autism Cases Rise in Spite of Vaccine Changes

California public health researchers have found that the prevalence of autism spectrum disorders in young children has risen, even after doctors stopped using a mercury-containing preservative thimerosal in the vaccines babies receive.

The study, "Continuing Increases in Autism Reported to California Developmental Services System," is published in the January 2008 issue of Archives of General Psychiatry. The journal has made the full text of the article available online here.

The study asked: Since people are concerned that the mercury preservative used in vaccines causes autism, what happened after 1999, when the government and doctors recommended the nation stop using vaccines containing thimerosal for infant inoculations such as DTP (diphtheria, tetanus and pertussis) and hepatitis B?

Instead of seeing a decrease in autism diagnoses, the state Department of Developmental Services (DDS) saw an increase in the estimated prevalence of autism cases. For each quarter from 1995 through the end of 2003, the prevalence of autism increased from 0.6 to 2.9 per 1,000 live births. (The prevalence for all developmental disabilities including autism also increased, from 5.4 to 8.9 per 1,000.)

The study authors continue: "From 2004 through March 2007, when we estimate exposure to thimerosal-containing vaccines during infancy and early childhood declined, the prevalence of children aged 3 to 5 years receiving services for autism continued to increase from 3.0 to 4.1 per 1,000 lives births."

The authors report in their conclusion:

Infants and toddlers in the United States were exposed to more of the ethylmercury-containing preservative, thimerosal, after recommendations in 1991 for universal administration of the hepatitis B virus and Hib [Haemophilus influenzae type b] vaccines.

They have been exposed to less thimerosal since at least the national recommendation in 1999 for its removal from childhood vaccines. If thimerosal exposure is a primary cause of autism, then the prevalence of autism would be predicted to decrease as young children's exposure to thimerosal has sharply decreased to its lowest levels in decades. We have instead found that the prevalence of autism in children reported to the DDS has increased consistently for children born from 1989 through 2003, inclusive of the period when exposure to TCVs [thimerosal-containing vaccines] has declined.

Moreover, since 2004, the absolute increase and the rate of increase in DDS clients aged 3 to 5 years with autism were higher than those in DDS clients of the same ages with any eligible condition, including autism. These time trends are inconsistent with the hypothesis that thimerosal exposure is a primary cause of autism in California.

Context for the California Study

This is the latest in a series of published research articles that fail to find a causal link between thimerosal and autism. There have been numerous media reports, analysis pieces, opinion articles, and books urging parents to trust the research and get their kids vaccinated.

Meanwhile, a special court in Washington is hearing a series of cases arguing that evidence shows that vaccines harmed their children and demanding compensatory damages.

But while ABC News reports today that the latest California study "may be the latest nail in the coffin of a theory that draws a link between the mercury-containing vaccine additive thimerosal and autism," the controversy is likely to continue.

The same day as the research report came out, the advocacy group SafeMinds.org, which supports research on the "potential harmful effects of mercury and thimerosal," had posted this note about the California study:

SafeMinds arrives at a different interpretation of the findings, showing that the data can equally support a primary causative role of thimerosal if autism causation is multifactorial. Vaccine components and environmental mercury, as well as other toxicants, are additional likely candidates. Deficiencies of the DDS data and imprecise thimerosal exposure assumptions make determination of the contribution of thimerosal to autism rates difficult. The increase in autism cases reported by Schechter and Grether since the 1980s highlights the urgency of the autism epidemic and the need to institute a rigorous and comprehensive environmental factors research program.

Also see:

* Autism: Why the Debate Rages, an article by CBS News correspondent Sharyl Attkisson.

* Scientists Raise Voices Against Parents Vaccinophobia

* Medical Journal Traces Vaccine Controversy to Moment When Doctors Failed to Communicate Clearly About Risks

* Special Court to Hear Autism Case

What to Do When Your Child Gets an Autism Diagnosis

BabyZone.com, a website site for parents of very young children, has published an article I wrote to help parents new to autism spectrum disorders understand what the diagnosis is about and what first steps to take. You can find the article here:

What to Do When Your Child Gets an Autism Diagnosis.

Take a look. While regular readers of Autism Bulletin and veteran parents of people with autism probably won't find any surprises, I would hope this article will help not just parents new to the subject but also grandparents, other relatives and friends.

Related Subject: Where Do Parents Find Support?

On a related subject, for a future Autism Bulletin article: I am very interested in sharing information about ways for parents and other family members find support for each other as they work to help their children with autism spectrum disorders. If you have suggestions for finding that support, please post a comment, or drop me a line at michaelsgoldberg AT yahoo DOT com.

Autism Bulletin's 2007 Advocates of the Year

The past year saw important news for the autism community, including a big push by the American Academy of Pediatrics to make its members more aware of the need to diagnose autism spectrum disorders early, and big wins in South Carolina and Texas by advocates seeking to get health insurance companies to cover autism services.

Autism Bulletin's 2007 Advocates of the Year list includes the people and organizations behind those big events. It also includes other people and groups who made a difference—including a number of individuals nominated by readers. Thanks to everyone who shared their thoughts on these individuals' important efforts. Here are the picks for Autism Bulletin's advocates of the year:

The American Academy of Pediatrics.
It was big news in the fall when the American Academy of Pediatrics issued a call for doctors across the United States to offer routine diagnostic screenings for autism spectrum disorders. The group that has 60,000 members also published papers to educate its members about autism and what treatments offer important help for people on the spectrum, and a special package for doctors to educate themselves about ASD. The move is important as an awareness campaign, but its impact could have larger repercussions as it firmly legitimizes therapies such as Applied Behavior Analysis (ABA) which some insurers, school officials and medical professionals considered "experimental" and provides concrete baselines for service levels (25 hours per week, 12 months per year) for such therapies.

The South Carolina Parents Who Won "Ryan's Law."
There were tears, hugs and celebrations in the lobby of the South Carolina capitol building last June, and they were justified: the state Legislature had just overridden the governor's veto to pass legislation that requires health insurers to cover services for children with autism up to age 16. Not only did these parents and other advocates led by Lorri Unumb (Ryan's mom) and Lisa Rollins work tirelessly to educate state lawmakers about the need—and relatively modest costs—for such coverage. They have organized advocates from around the nation to share strategies and tactics to work for similar legislation in others states. We saw legislation pass in Texas and have been watching as advocates working in Michigan, Arizona, California and Florida, among other states, seek to follow South Carolina's lead.

Sandee and Jeff Winkelman, Who Argued for Parents' Rights (and Won).
The parents of Jacob Winkelman of Parma, Ohio, fought and won the right for parents across the nation to argue on behalf of their disabled children in federal court. In a 7-2 decision in May, the U.S. Supreme Court ruled that federal special education law grants parents "independent, enforceable rights" separate from their children and therefore they can pursue those rights in court—without a lawyer if necessary—so they can advocate for their child to receive a free and appropriate education. Other parents of autistic children understood the Winkelman's plight: when you have to pay tens of thousands of dollars for autism-related services and schooling, who has the money for a lawyer to fight for services in court? The Supreme Court said they didn't have to be lawyers to fight the good fight.

Senator Hillary Rodham Clinton.
Clinton, the New York Senator who is in a dogfight for the Democratic presidential nomination, this year demonstrated a willingness to be a front-and-center advocate among policy makers in Washington D.C. for people with autism and their families. In March, Clinton and Sen. Wayne Allard, a Colorado Republican, filed legislation that would expand autism services and research. Then this fall, on the campaign trail, Clinton made the loudest call for increased spending on research, education and support services for people with autism, pledging to spend $700 million per year if elected. Yes, it's that time of the political season when we hear lots of promises. And other candidates (only Democrats so far) have noted the need to do something more for people with autism. But no one else has made such pointed, specific proposals for autism. At least not yet.

The Asperger's Association of New England.
It was almost a year ago that a murderous stabbing in a Lincoln-Sudbury High School bathroom in the Boston suburbs shocked the region where I live. It turned out that the 16-year-old who allegedly killed a fellow student has an Asperger's diagnosis, a fact which his lawyer has made central to his defense. The Asperger's Association of New England took it upon itself to invite the public to discuss the diagnosis and assert that physical violence is not at all typical of people with the condition. The group's leaders fielded many media calls and sought to enlighten the public and spread awareness about Asperger's. A footnote to the tragedy: local media have reported the special education program which the Asperger's student attended is no longer hosted at the high school.

Angela Mouzakitis, BCBA.
ABA needs more voices like that of Angela Mouzakitis. Mouzakitis publishes the blog Applied Behavior Analysis: Current Topics, and is a board certified behavior analyst (BCBA) who teaches in the graduate special education program at City University of New York's Queens College. Her essays are always professional, sometimes technical and academic—but throughout she conveys a passion for helping kids on the autism spectrum, for creating new educators who share her passion. Along the way she demonstrates an open-minded approach to practitioners of other kinds of therapies.

Parents and Siblings Who Teach Others About Autism

Karra Barber is the mother of a teenager with Asperger's Syndrome who has brought energy to her advocacy work in California. Her website has a useful list of Asperger's support programs in California, among other resources. A reader writes that she was a leader in the founding of a summer camp for film-making for kids who have trouble communicating at Saint Mary's College in Moraga, Calif.

Morton Ann Gernsbacher, a psychology professor at the University of Wisconsin at Madison and past president of the Association for Psychological Science, has made understanding autism one of her research priorities since her son received an autism spectrum disorder diagnosis. An Autism Bulletin reader notes that Gernsbacher's work to make therapists aware about autism and to battle prejudicial perceptions of people with ASD is essential.

Renee Henderson, a Philadelphia-area mother and advocate, has established a group called Autism Sharing and Parenting, which organizes support groups and parent workshops in Philadelphia and Montgomery Counties in Pennsylvania. A reader writes that Renee, who started the group three years ago, spends many hours helping families make daily picture schedules using Boardmaker, and providing a helpful and supportive ear, and adds: "She is making a difference by teaching parents how to become better advocates for their children, by providing parents with the information, tools and resources needed to improve their quality of life."

Nicholas Lombardi, who is now 12, was in the mall with his younger brother Joey and his mom when Joey took off his shoes and started running. "As the people stared I found my self very angry," Nicholas writes in an essay published on the Autism Speaks website. "Not at him, not really at them, but maybe at autism. I wished there could be a way… to have people understand. A voice." Nicholas decided to create a button for his brother and other autistic kids to wear that says "I'm not misbehaving, I have autism. Please be understanding." Sales of the button in English and Spanish, has raised more than $8,000 so far at Autism Speaks online store.

Recognizing Continued Advocacy Efforts

As noted in the 2006 list of advocates, there are a number of organizations who deserve credit for their ongoing efforts on behalf of people with autism and their families. These include advocacy organizations like the Autism Society of America (which this year announced a partnership with Easter Seals to improve access to services), and Autism Speaks (which merged with Cure Autism Now). Though both groups are large and as such, have their critics and controversies, they are amassing the resources needed to make a national impact.

Others who have continued and expanded their worthy efforts include:

* The center builders, such as The Friends of Children with Special Needs in Fremont, Calif. and the Autism Center of Pittsburgh, an outgrowth of the advocacy and support work at AutismLink.

* Medical researchers. The projects funded by public and private sources, both in the United States and abroad, are aimed at new understanding of autism's potential causes and treatments. See "Large Children's Health Study Cites Autism as One of Key Target Areas" and "British Researchers Unveil Brain Imaging Center" as two examples.

* Educators. This year, Autism Bulletin started an autism schools map project to build a directory for parents seeking options. The map is filling up with examples of organizations committed to helping kids, from the Claremont Autism Center in California to the Connecticut Center for Child Development to the Florida Autism Center for Excellence (FACE) School in Tampa.

Others Worth Noting

* Ivan Corea and others at the National Autistic Society in the United Kingdom, whose advocacy and awareness efforts included a meeting with former Prime Minister Tony Blair.

* Writers who shared their experiences as parents, including Roy Richard Grinker and Portia Iverson. And Tim Page, who wrote movingly of growing up with Asperger's.

* The British author Nick Hornby, who uses his success to sustain the TreeHouse school in London he helped to found, and even from time to time, uses his book reviews in The Believer to spread awareness, though his own experiences, when he writes about autism.

* IEP Advocates like Barbara Ball of Newton, Mass., upon whom parents rely for advice and support.

Thanks to all of these individuals and organizations for their efforts.

Advocates, Parents Among Those Appointed to Autism Committee at National Institutes of Health

One theme of the Combating Autism Act of 2006 was to do more to coordinate federal government efforts on autism research and diagnostic screening along with autism services and education programs. Following this directive, Mike Leavitt, the Bush Administration's secretary of Health and Human Services, on Nov. 27 announced 19 appointments to the government's Interagency Autism Coordinating Committee.

The committee's goal is to make sure government agencies are sharing information so they can coordinate their respective efforts on various autism-related programs. You can read Leavitt's full announcement by clicking here.

While the law calls for the director of the Centers for Disease Control to be appointed to this panel, Leavitt instead appointed another CDC official to represent the agency head, Julie Gerberding. (You can read the text of the Combating Autism Act here in a PDF file. For those of you interested in the specific section of the law pertaining to this committee, read to the end of this post.)

The committee chair is Thomas R. Insel, M.D., director of National Institutes for Mental Health. "The committee's first priority will be to develop a strategic plan for autism research that can guide public and private investments to make the greatest difference for families struggling with autism," Dr. Insel said in a statement.

Four Parents, One Autistic Adult Appointed to the Committee

The law calls for the committee to have one-third of its members come from the public at large, and at least one person with autism, one parent and one member of the autism advocacy organization. Levitt's six choices to fill these roles are below, with notes from the government's press release and some associated website links:

Stephen Shore, Ed.D., the executive director of Autism Spectrum Disorder Consulting. See his website at www.autismasperger.net. Shore has an autism spectrum disorder diagnosis. He is an education consultant who is an expert "on adult issues pertinent to education, relationships, employment, advocacy, and disclosure." Shore serves on the board of the Autism Society of America, as board president of the Asperger's Association of New England, and is on the board of directors for Unlocking Autism, the Autism Services Association of Massachusetts, MAAP Services, The College Internship Program, and the KEEN Foundation.

Parent Lee Grossman, the president and CEO of Autism Society of America (ASA), a leading advocacy organization based near Washington D.C. He is the parent of a young adult son with autism. Mr. Grossman is also the chair of the ASA Foundation and a member of the ASA Environmental Health Advisory Board.

Parent Christine McKee is a lawyer who has developed and manages an in-home therapy for her autistic child. She participates in monthly consultations with a Board Certified Behavior Analyst/Speech Pathologist. She applies the therapeutic measures in her daily parenting and childcare routines.

Parent Lyn Redwood is co-founder and president of the advocacy group Coalition for Safe Minds. The coalition is a private nonprofit organization "founded to investigate and raise awareness of the risks to infants and children of exposure to mercury from medical products, including thimerosal in vaccines." She is a nurse practitioner who has 25 years of experience, and began her advocacy efforts for autism research after her son was diagnosed with pervasive development disorder in 1999."

Parent and sibling Alison Tepper Singer is executive vice president of Autism Speaks and is a member of the board of directors. Prior to joining Autism Speaks, Ms. Singer spent 14 years at CNBC and NBC where she served in several positions. She has both a daughter and an older brother with autism, giving her long-term, personal experience with the disorder.

Yvette Janvier, M.D., is the medical director for Children's Specialized Hospital in New Jersey. Dr. Janvier is also a clinical assistant professor in the Department of Pediatrics, Robert Wood Johnson Medical School. Her specialties are autism and developmental and behavioral
pediatrics. Dr. Janvier is a fellow of the American Academy of Pediatrics.

Government Officials on Committee

Secretary Leavitt appointed 13 government officials and researchers to this committee. They are:

Duane Alexander, M.D., director of the National Institute of Child Health and Human Development at NIH. The Institute supports research on all stages of human development, from preconception to adulthood, to better understand the health of children, adults, families, and communities.

James Battey, M.D., is director of the National Institute on Deafness and Other Communications Disorders at NIH. The Institute supports biomedical and behavioral research and research training in the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language.

Ellen Blackwell is a social worker and health insurance specialist of the Division of Community and Institutional Services, Disabled and Elderly Health Programs Group, Center for Medicaid and State Operations, Centers for Medicare and Medicaid Services where she serves as an expert on policies that affect individuals with autism spectrum disorders.

Margaret Giannini, M.D., is director of the HHS Office on Disability. Dr. Giannini serves as advisor to the Secretary on HHS activities relating to disabilities. She is also a member of the Institute of Medicine of the National Academy of Sciences and fellow of the American Academy of Pediatrics.

Gail Houle, is associate division director of the Research-to-Practice Division, Early Childhood Programs, Office of Special Education Programs, Department of Education where she oversees programs for children with disabilities and their families funded through the Individual with Disabilities Education Act. Her expertise focuses on services for children with autism spectrum disorders.

Larke Huang is senior advisor on children and a licensed clinical-community psychologist who provides leadership on federal national policy pertaining to mental health and substance use issues for children, adolescents and families for the Substance Abuse and Mental Health Services Administration.

Thomas Insel, M.D., is director of the National Institute of Mental Health at NIH. The Institute's mission is to reduce the burden of mental illness and behavioral disorders through research on mind, brain, and behavior.

Story Landis is director of the National Institute of Neurological Disorders and Stroke at NIH. The Institute's focus is directed toward reducing the burden of neurological disease through research on the normal and diseased nervous system.

Cindy Lawler is scientific program director of the Cellular, Organs, and Systems Pathobiology Branch, Division of Extramural Research and Training, National Institute of Environmental Health Sciences at NIH. The Branch plans, directs, and evaluates the Institute's grant program that supports research and research training in environmental health.

Patricia Morrissey is commissioner of the Administration on Developmental Disabilities at the Administration for Children and Families, which seeks to improve services to and assure that individuals with developmental disabilities have opportunities to make their own choices, contribute to society, have supports to live independently, and are free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights.

Edwin Trevathan, M.D., is director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC. NCBDDD is focused on identifying the causes of and preventing birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities. Dr. Trevathan is representing Julie Gerberding, M.D., M.P.H., director of the CDC, on the committee.

Peter van Dyck, M.D., M.P.H., is associate administrator of Maternal and Child Health at the Health Resources and Services Administration (HRSA). Dr. van Dyck oversees HRSA's Maternal and Child Health Bureau, which seeks to improve the health of mothers, children, and families, particularly those who are poor or lack access to care.

Elias Zerhouni, M.D., is director of the National Institutes of Health. A world renowned leader in the field of radiology and medicine, Dr. Zerhouni has spent his career providing clinical, scientific, and administrative leadership. He leads the nation's medical research agency and oversees the NIH's 27 Institutes and Centers with more than 18,000 employees.

Notes on This Panel from the Combating Autism Act

The law calls for the committee to meet at least twice a year, in public. Here's what the law says about its goals:

In carrying out its duties under this section, the Committee shall—

(1) develop and annually update a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or rule out, intervention, and access to services and supports for individuals with autism spectrum disorder;

(2) monitor Federal activities with respect to autism spectrum disorder;

(3) make recommendations to the Secretary regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan developed under paragraph (5);

(4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder;

(5) develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research, including proposed budgetary requirements; and

(6) submit to the Congress such strategic plan and any updates to such plan.

Related Stories on Autism Bulletin:

CDC Director Cites Autism as Urgent Concern

Bush Signs Combating Autism Act

National Institutes of Health Reorganizes Autism Research Program

Federal Research Grants Shows Intensified Effort to Find Autism Clues, Treatments, NIH Says

American Pediatricians Make Big Push for Autism Diagnosis, Awareness; Kits for Doctors, Checklists for Parents

The American Academy of Pediatrics, the national group for 60,000 primary care children's doctors, this week issued a major announcement to educate its members about the early diagnostic signs for autism spectrum disorders, and urge them to look for those signs during baby checkup visits.

This announcement, made at the Academy's annual national conference on Oct. 29, is important because it sets some baseline expectations for what pediatricians around the country should understand about autism, including the essential importance of early intervention services. The documents make clear to doctors (and parents, grandparents and caregivers) the importance of milestones for early childhood development and communications skills. The Academy advises doctors to look for these signs at every well-child visit, or baby checkups. For parents and advocates of young children with autism, the documents also could help set the stage for minimum expectations for early intervention services.

Read the announcement by clicking here. It is impressive in its scope. It includes links to two research studies published in the November 2007 issue of the journal Pediatrics: "Identification and Evaluation of Children with Autism Spectrum Disorders," explains the history of autism, summarizes research so far into possible causes for it, lays out specific criteria for doctors to diagnose autism and explains how to help parents look for developmental delays. The second report, "Management of Children with Autism Spectrum Disorders," establishes the importance of behavioral and educational interventions, including structured teaching methods such as Applied Behavior Analysis (ABA) and Treatment and Education of Autistic and Related Communication Handicapped Children (TEACHH) delivered in low student-teacher ratios "to allow sufficient amounts of 1-on-1 time" for "at least 25 hours per week, 12 months per year."

The Academy said it published both documents as an update and replacement for materials published in 2001.

Diagnostic Signs for Autism Before 18 Months of Age

"Language delays usually prompt parents to raise concerns to their child's pediatrician—usually around 18 months of age," the Academy notes. "However, there are earlier subtle signs that if detected could lead to earlier diagnosis." The signs include:

* not turning when the parent says the baby's name
* not turning to look when the parent points says, "Look at..." and not pointing themselves to show parents an interesting object or event;
* lack of back and forth babbling;
* smiling late; and
* failure to make eye contact with people.

The doctors' group notes:

"Red Flags" that are absolute indications for immediate evaluation include: no babbling or pointing or other gesture by 12 months; no single words by 16 months; no two-word spontaneous phrases by 24 months; and loss of language or social skills at any age. Early intervention can make a huge difference in the child's prognosis. "Autism doesn't go away, but therapy can help the child cope in regular environments," said Dr. Chris Plauche Johnson, a co-author of the reports. "It helps the children want to learn and communicate."

A Heads Up to Doctors About Parents' Use of Alternative Medical Therapies

In addition to developmental checklists, specific guidelines for doctors and explanations of the medical literature about autism and therapies for it, there's an interesting secondary theme the Academy of Pediatrics is working to convey to its members about parents' interest in alternative medical therapies. The message to doctors goes something like this: There's a great deal of media coverage and growing awareness out there about autism spectrum disorders and lots of information on the Internet. Engage parents in discussions, listen to their concerns. Don't dismiss their interest in alternative therapies, even as you share knowledge about evaluating whether a treatment option has evidence to show it is valuable.

Here's a passage from the Academy's announcement:

Pediatricians who treat children with ASDs should recognize that many of their patients will use nonstandard therapies. The report says it’s important for pediatricians to become knowledgeable about complementary and alternative medicine (CAM) therapies, ask families about current and past CAM use, and provide balanced information and advice about treatment options, including identifying risks or potential harmful effects. They should avoid becoming defensive or dismissing CAM in ways that convey a lack of sensitivity or concern, but they should also help families to understand how to evaluate scientific evidence and recognize unsubstantiated treatments.

“Many parents are interested in CAM treatments such as various vitamin and mineral supplements, chelation therapy, and diet restrictions. It’s important for pediatricians to maintain open communication and continue to work with these families even if there is disagreement about treatment choices, ” said co-author of the reports Scott M. Myers, MD, FAAP. “At the same time, it’s also important to critically evaluate the scientific evidence of effectiveness and risk of harm and convey this information to the families, just as one should for treatment with medication and for non-medical interventions.”

Although use of the gluten-free/casein-free diet for children with ASDs is popular, there is little evidence to support or refute this intervention. More studies are in progress, and it is anticipated that these studies will provide substantially more useful information regarding the efficacy of the gluten-free/casein-free diet.

All of this information is available for sale ($70 for members, $80 otherwise) in a package for pediatricians called "Autism: Caring for Children with Autism Spectrum Disorders: A Resource Toolkit for Clinicians," including "screening and surveillance tools, guideline summary charts, management checklists, developmental checklists, developmental growth charts, early intervention referral forms and tools, sample letters to insurance companies and family handouts."

California Autism Commission Prepares Legislation for 2008; Recommendations Cover Health Insurance, Education, Services, Awareness, Diagnosis

The California Legislative Blue Ribbon Commission on Autism has published a report with recommendations for legislative action in 2008. The commission's 93-page report (a PDF file), presented in September to Gov. Arnold Schwarzenegger and the state Assembly, issues findings about Californians with autism spectrum disorders, describes the presence of autism services in the state and makes recommendations in seven areas, from early intervention to post-secondary education, from health insurance to teacher training, for addressing what it calls "the ASD public health crisis."

This is a big deal for parents and families beyond the state capital in Sacramento; I would expect advocates for autism services across the country to follow closely what happens in this effort, and to glean both insights and lessons from the recommendations and resulting changes to autism services in California. Autism Bulletin readers are a busy group, but if it's possible for you, reading the commission's report is a good use of time to familiarize yourself with issues and challenges families need to address as they support people with autism and advocate for them. It's a quick education in how a big state looks at the autism issue, how it organizes to address autism needs, and how it frames approaches to important issues like health insurance and education.

Convened for two years after a 2005 state resolution, the panel's report notes that it has sought and won legislative approval to remain active for another year, until November 2008, so it can monitor the progress of work on its recommendations.

The Commission's Seven Recommendations: What They Cover

As in other states (such as Washington and Kentucky) that have formed important autism study groups, the California panel takes a comprehensive approach to providing support services to a growing number of citizens diagnosed with autism. (The California report also asserts the relative strength of services and research institutions compared to other states in the U.S.) The panel's recommendations call on California to:

1. Expand early diagnosis and intervention. The panel calls for establishing a demonstration project to serve as a model for expanding the state's ability to identify autism cases early. "the demonstration project should focus on distressed communities; ensure the timely diagnosis of and intervention for children with ASD; improve collaboration among providers; provide support to families and caregivers; establish a seamless system for service delivery between regional centers and local education agencies; and promote smooth transitions" from birth to kindergarten.

2. Enact health insurance legislation. The panel calls on the state to pass laws, regulations "and other policies to ensure appropriate and equitable coverage for ASD by private health plans and insurers."

3. Establish a muscular public awareness campaign. The panel calls on California to "implement a statewide public awareness campaign on ASD" tied to efforts by the state's Department of Public Health to improve access to autism services.

4. Increase the supply of trained educators for students with autism. This recommendation refers to teachers, paraprofessionals and other school-based staff who need specialized training to be effective.

5. Address the need to resolve disputes about autism services between families and school districts. The report's executive summary calls on California to "empower families and local education agencies to collaborate in establishing appropriate and effective individualized education programs for children with ASD," adding that the state needs to review the process for resolving such disputes.

6. Expand the educational and employment options for youth and young adults with autism. This recommendation includes broadening existing post secondary education programs and setting up new technical education models that can lead to employment with supports. The panel also urges the state to "expand innovative community-based approaches to supported employment, transportation, social-recreation programs, and housing for the ASD population."

7. Train emergency workers and first responders about helping people with autism in a crisis.

Endorsement by Autism Speaks Chapters, Focus on Health Insurance

The commission published its report in September, as required by law. On Oct. 22, representatives for the Autism Speaks chapters in San Francisco and San Diego issued statements endorsing the commission's report. You can read a copy of the San Francisco Autism Speaks chapter's press release by clicking on the web link. The statement zeroes in on the health insurance issue as a key ingredient of the commission's recommendations:

"Autism Speaks commends the Commission and its staff for reaching out in countless ways to parents and advocates across California and for listening to our concerns about appropriate and equitable health care insurance for children with autism," said Kristin Jacobson, Chapter Advocacy Chair, Autism Speaks California. "We believe that all health plans and insurers should provide a full range of services for children with autism, including intensive behavioral treatment, such as Applied Behavioral Analysis, a highly effective, evidenced-based intensive behavior modification therapy."

Also see:

* Autism Bulletin articles relating to health insurance

* House Bill Calls on Congress to Establish Autism Education Task Force

Study of Social, Environmental Factors in Autism Subject of High-Profile NIH Grant

Among the series of National Institutes of Health (NIH) grants made to 41 "exceptionally innovative" scientists this week was one to Peter Bearman, a Columbia University sociologist known for his research into social network dynamics who plans to study the role of social and environmental factors in autism.

Bearman is a recipient of a five-year, $2.5 million Pioneer Award from the NIH announced Sept. 18. You can read a press release on all the award recipients here.

Bearman's past research is a fascinating, diverse collection of subjects that, on the surface, appear to have little to do with autism and more to do with adolescent sexual health, Italian politics and how people win elite jobs. Take this passage from his bio provided by the NIH (see the website here):

Peter Bearman, Ph.D., is the Jonathan Cole Professor of Social Science at Columbia University. He also directs the Institute for Social and Economic Research and Policy and co-directs the Robert Wood Johnson Foundation Health & Society Scholars Program at the university. Bearman received a Ph.D. in sociology from Harvard University in 1985. His work centers on understanding how social network dynamics shape diverse adolescent health outcomes. Bearman co-designed the National Longitudinal Study of Adolescent Health and has studied the structure of sexual networks and the risk of sexually transmitted diseases, peer influence and sexual behavior, friendship structure and suicidality, and the determinants of school achievement. His work on sexual networks has been featured in popular magazines, including Time, Harper’s, and Discover.

Bearman's faculty profile at Columbia also notes:

His current research in historical sociology focuses on developing models to case historical event sequences; temporality in historical accounts; recruitment to elite positions, and the structure of global trade networks, 1600-1831. In the area of social networks, his current work focuses on the structure of Italian politics (1986-2002).

So why is this social scientist with wide-ranging interests going to focus on autism? A recent article in The New York Times explains that Bearman and his research colleagues want to delve into the rising tide of autism spectrum disorder diagnoses, and how social networks factor into that rise. Here's an excerpt from the August 5 "Week in Review" article "You, Your Friends, Your Friends of Friends" (the article delved into why researchers were finding that obesity appeared to be contagious):

Now Dr. Bearman and his colleagues are studying autism. The number of autistic children has increased rapidly in recent years, but it is not clear how much resulted from increased diagnosis and how much from an increase in the actual disease.

Dr. Bearman is studying how diagnoses of autism spread. When a child is diagnosed, friends of that child's parents may wonder whether their child has autism as well, and have their child evaluated. Demand for autism evaluations would increase, and doctors and schools would become more sensitive to the disorder and more likely to suspect it. Schools would then provide services for the autistic children in the community, attracting families from other areas where autism was less common and where schools were not as prepared to help.

"There is an enormously important dynamic that draws people into a diagnostic maelstrom," Dr. Bearman says. "Autism is real, but the epidemic very likely has a very important social network component."

No doubt that social network component involves us, parents and families of people diagnosed with autism. It will be interesting to follow what Bearman comes to understand.

Also see:

Anthropologist Casts Light on Autism Views Around the World

A Cogent Case for Precise Autism Population Studies

Newsday, the Long Island, New York-based newspaper, today published an editorial that outlines in clear and pragmatic terms the urgency for Long Island to develop an accurate count of how many people have autism spectrum disorders. The argument focuses on the Long Island region, but the reasoning applies to the United States as a whole. The key reason: we need to know the extent of the challenge facing us, so we can figure out what to do and how to pay for it. The editorial which you can read by clicking here states, in part:

Causes are hotly debated. Some scientists are focusing on a genetic mutation as a possible cause. Others say that childhood vaccines or environmental toxins may be involved.

Regardless of cause, evidence that a growing number of children are being diagnosed as autistic is everywhere. Agencies on Long Island that provide social, educational and training services for children and adults with autism can't keep up with the growing demand. Residential facilities in Nassau and Suffolk report waiting lists ranging from two to five years.

But the lack of standard reporting requirements for schools or pediatricians means that agencies and schools don't know what they face, even in the immediate future. There is a glaring lack of hard data—actual figures—on the incidence of autism among children and adults in specific regions and communities on Long Island.

Without such information, it's hard to plan for services or to provide funds for them—even though it's apparent that the problem is growing to such an extent that some advocates call autism a major health care crisis with no end in sight.

The Newsday editors are diplomatic; "hard to plan" is an understatement, as parents of children on waiting lists for services now can attest. A lack of options for education, social support services, employment training, housing—just about every aspect of life—makes long-term planning like a steep climb in dry sand for most families.

The editorial, a welcome sign that awareness of the autism challenge is spreading, calls on Congress to appropriate funding for the Combating Autism Act signed into law in December 2006, and also urges the Centers for Disease Control to make more precise autism diagnosis figures available to Long Island. The newspaper suggests the creation of a council that can coordinate services among state, county and local service agencies that aren't doing enough of that now. The piece concludes:

But above all, along with the awareness of autism's manifestations, there needs to be valid information about its prevalence in every region, Long Island among them. Without such basic data, the extent of the problem will remain as puzzling as its causes. That's no way to deal with a disorder that can wreck the lives of so many.

Newsday's editorial follows up on articles by reporter Delthia Ricks. In one of her pieces, Ricks talked to genetics researchers at Cold Springs Harbor Laboratory about what they believe is promising research into the causes of autism spectrum disorders. Read "Researchers: New Understanding of Autism Near," by clicking here.

A First-Person Account of Growing Up with Asperger's

In the years since the phrase became a cliché, I have received any number of compliments for my supposed ability to "think outside the box." Actually, it has been a struggle for me to perceive just what these "boxes" were—why they were there, why other people regarded them as important, where their borderlines might be, how to live safety within and without them. My efforts have been only partly successful: after fifty-two years, I am left with the melancholy sensation that my life has been spent in a perpetual state of parallel play, alongside, but distinctly apart from, the rest of humanity.

That is how Tim Page, a journalist, Pulitzer Prize-winning music critic and author describes his life growing up with Asperger's before the term was commonly known, in a passage from his moving essay titled "Parallel Play" in the August 20 issue of The New Yorker. The magazine recently beefed up its website, but it doesn't include every article online; if you have someone in your life with Asperger's, it would be good to get a copy of this issue.

Page, who is 52, was diagnosed in 2000. He spoke with "All Things Considered" host Robert Siegel on August 13 (find the six-minute-long interview here). In their conversation, Page says he was very young, three or four years old, when his family understood something was different about his development. "It was a question of what that difference was," he says, adding that he had some strengths along with many weaknesses.

Growing up, Page says he did poorly in school, and educated himself on details that interested him. Later, he found a copy of Emily Post's book "Etiquette" and found that by poring over it, he learned to understand some of the nuances of people's behavior which he otherwise could not comprehend. "It explained to me why people behaved the way they did. I got the gist of it. I got the idea of why people didn't talk on and on about things," he says.

Page says that his diagnosis helped him make better sense of his life, and he wished to help some others like him by writing about his experience.

"I'm much more drawn into the human race. I'm happier, more in control," Page says. Asperger's "is not something that goes away. There is no cure for it, but there is living with it. It's a different way of processing information. It can be quite difficult when you are young."

Autism Can Be Diagnosed at 14 Months

By closely monitoring the social and communication development in very young children, researchers at the Kennedy Krieger Institute in Baltimore reported that they could diagnose autism at 14 months of age in half of the cases they studied, and by three years of age in the other half.

The research study is in the July 2007 issue of the Archives of General Psychiatry. A very brief description of the study is here (the full study is available to the medical journal's subscribers). A press release describing the results is here, via the Autism Speaks website.

Early diagnosis is a key issue for families of kids with autism spectrum disorders (ASD). Early diagnosis can lead more quickly to the start of early intervention services. If such services go well, it can mean not only better outcomes for the kids, but it means less costly service burdens later on.

The most recent statistics released by the Centers for Disease Control found that in the 14 states studied, the median age for a diagnosis in most of the states was four years old or later. (See background information here.)

The researchers released a list of four "signs of developmental disruptions" which parents and pediatricians should be watching. Here's the list:

1. Abnormalities in initiating communication with others.
Rather than requesting help to open a jar of bubbles through gestures and vocalizations paired with eye contact, a child with ASD may struggle to open it themselves or fuss, often without looking at the nearby person.

2. Compromised ability to initiate and respond to opportunities to share experiences with others.
Children with ASD infrequently monitor other people's focus of attention. Therefore, a child with ASD will miss cues that are important for shared engagement with others, and miss opportunities for learning as well as for initiating communication about a shared topic of interest. For example, if a parent looks at a stuffed animal across the room, the child with ASD often does not follow the gaze and also look at the stuffed animal. Nor does this child often initiate communication with others. In contrast, children with typical development would observe the parent's shift in gaze, look at the same object, and share in an exchange with the parent about the object of mutual focus. During engagement, children have many prolonged opportunities to learn new words and new ways to play with toys while having an emotionally satisfying experience with their parent.

3. Irregularities when playing with toys.
Instead of using a toy as it is meant to be used, such as picking up a toy fork and pretending to eat with it, children with ASD may repeatedly pick the fork up and drop it down, tap it on the table, or perform another unusual act with the toy.

4. Significantly reduced variety of sounds, words and gestures used to communicate.
Compared to typically developing children, children with ASD have a much smaller inventory of sounds, words and gestures that they use to communicate with others.

"For a toddler with autism, only a limited set of circumstances – like when they see a favorite toy, or when they are tossed in the air – will lead to fleeting social engagement," said Dr. Rebecca Landa, the director of the Kennedy Krieger's Center for Autism and Related Disorders, and lead study author. "The fact that we can identify this at such a young age is extremely exciting, because it gives us an opportunity to diagnose children with ASD very early on when intervention may have a great impact on development."

Landa's research group hopes to establish a standardized criteria for diagnosing autism spectrum disorders among very young children.

This is a tricky task, for the researchers also found that "autism often involves a progression, with the disorder claiming or presenting itself between 14 and 24 months of age. Some children with only mild delays at 14 months of age could go on to be diagnosed with ASD. ... While some children developed very slowly and displayed social and communication abnormalities associated with ASD at 14 months of age, others showed only mild delays with a gradual onset of autism symptoms, culminating in the diagnosis of ASD by 36 months."

The bottom line for families comes at the end of the press release:

If parents suspect something is wrong with their child's development, or that their child is losing skills during their first few years of life, they should talk to their pediatrician or another developmental expert. This and other autism studies suggest that the "wait and see" method, which is often recommended to concerned parents, could lead to missed opportunities for early intervention during this time period.

Experts Unveil New Framework for Identifying Developmental Delays, Possible Signs of Autism, In Very Young Children

A working group of experts in autism spectrum disorders and child development has published a simple framework designed to help parents and pediatricians identify very young children who may present with developmental delays that indicate autism or other developmental disabilities and benefit from early intervention services.

The experts produced the four-point framework in a report for the Centers for Disease Control and the Interdisciplinary Council on Developmental and Learning Disorders (ICDL), a non-profit organization founded by the creators of the DIR/Floortime model for behavioral intervention. A statement from the report says the framework "is based on current understanding of health developmental patterns and is designed to detect all possible deviations from those patterns. It uses risk indicators designed to detect a lack of mastery of age-expected emotional, social and cognitive milestones during a child's first two years of life."

The four points ask whether a child can do the following:

* Be calm and focus on sights and sounds by 2 months of age

* Initiate and sustain warm, joyful interactions with caregivers by 4 months of age

* Exchange emotional and social gestures (using different sounds), reaching, exchanging, back-and-forth smiling, looking, and searching by 8 to 9 months of age

* Engage in shared social problem-solving and playing, including taking a caregiver's hand to find a toy or favorite food; playing with a toy and a caregiver together with lots of back-and-forth exchanges of sounds; and social gestures such as smiles, looks, and pointing by 12 to 16 months of age.

This new framework "casts a wider net than current common practice in an effort to identify all children at risk of developmental disabilities," according to a statement put out by CDC and ICDL. You can find the text of the statement, in a PDF file issued April 23, by going to this website. A 10-page report on the frameworks, dated December 2006, is available here. The proponents said in the press release that they were announcing the new framework in April to coincide with autism awareness month. Both are hosted by ICDL, the non-profit organization that presents the DIR/Floortime model of behavior intervention and relationship building established by Stanley Greenspan and Serena Wieder.

The group that developed this framework included Greenspan and others, among them: Jose Cordero, former director of the CDC's National Center on Birth Defects and Developmental Disabilities; T. Berry Brazelton, founder of the Child Development Unit at Children's Hospital Boston; and Margaret L. Bauman of Massachusetts General Hospital.

The effort to develop this evaluation framework overlap with some other efforts by researchers at places like the M.I.N.D. Institute at the University of California at Davis, to look for ways to diagnose children with autism by their first birthday -- on the theory that the earlier intervention services can start, the better the potential outcomes for these kids later in their development. This research project was the subject of a "60 Minutes" segment earlier this year. Read more about that here.

Unconfirmed Diagnosis in Virginia Tech Tragedy; Related Notes on Autism in Korea

In the landslide of media coverage of the Virginia Tech tragedy in which a gunman murdered 32 people and himself on April 16, there was one line that stood out to parents of kids with autism spectrum disorders: the killer in the case, Seung-hui Cho, had been diagnosed with autism, according to a great aunt.

The Associated Press reported that Cho's great aunt said the family had received the diagnosis sometime after emigrating to the United States in 1992. The news service added in a follow-up report that the great aunt "said the family was told in the U.S. that Cho suffered from autism -- but no records show such a diagnosis." (You can read the dispatches here, via The Age newspaper in Australia, and the later story here via Washingtonpost.com.) A long article in the April 22 edition of The New York Times entitled "Before Deadly Rage, a Life Consumed By a Troubling Silence," made much of Cho's lack of speech, his non-existent or extremely awkward social interactions, and a court's declaration of his mental illness, but the report did not mention autism. (If you have seen more definitive information about this case, please post a comment at the end of this article.)

So what are we to make of this?

The facts of the case are important. One could deduce a diagnosis from assembled pieces of media coverage and compare them to the Diagnostic and Statistical Manual of Mental Disorders (the American Psychiatric Association reference which describes autism spectrum diagnosis criteria). But without medical records or a doctor's testimony one would have an incomplete picture of Cho's case.

That uncertainty does nothing for people like parents who already are worried about the negative associations that an autism connection would have on their children. In this community, there are persistent concerns about a negative stigma. There's already an ongoing fight to gain support from society at large, already a struggle for understanding and acceptance. That's why AutismLink.com, an advocacy group and service center in Pittsburgh, issued a statement urging the public not to blame Cho's actions on autism. It is why, in the wake of a murder at a Boston area high school in January, the Asperger's Association of New England urged the public to avoid generating a sweeping negative stereotype about people with Asperger's (for background on that case, see here.)

In an effort to understand this dynamic swirling around the Virginia Tech tragedy, I wrote to Roy Richard Grinker, professor of anthropology and the human sciences at the George Washington University. He has a daughter with autism and he has studied how different societies -- including South Korea -- are dealing with autism. He published Unstrange Minds: Remapping the World of Autism (New York: Basic Books, 2007) and created an associated website at Unstrange.com.

I am going to post Professor Grinker's note in full below, which emphasizes that he is not a doctor and so is not qualified to talk about medical diagnoses. But as a matter of the societies in which Cho grew up, Grinker notes that: "It is unlikely that he would have been diagnosed in Korea. In the U.S. it is also unlikely, if only because Korean-Americans are on the whole very reluctant to seek mental health care (since it is just so stigmatizing). Doctors I've interviewed (including Korean-American doctors) tell me that by the time a Korean person gets to a mental health professional that person may be acutely mentally ill."

Why is that unlikely? Professor Grinker's note below explains more. It's long, but if you read it you get to understand how the ever-changing societies in which we live influence how that society views a disability like autism. Here's the note:

In my experiences in Korea, South Africa, and India, autism, when defined adequately, has been less stigmatizing than the other categories that are more commonly used, like mental retardation, possession by a demon, or, in India, paagol (Hindi), "mad." But illness categories are meaningful only if there is something one can do with them; thus, for many adults today in the U.S. who require public assistance it makes little sense to carry an autism diagnosis in states where services to adults with autism are provided only under the category of mental retardation. Pediatricians and psychiatrists in India, for example, put it quite simply: “What is the benefit to my patients of an autism diagnosis?” Since autism is not well understood in India, and there are few government services for the category of “autism,” they see little point in making the diagnosis. Instead, they use a category everyone knows – mental retardation – even if it is inaccurate. As one physician in New Delhi told me, “The treatments in India for someone with mental retardation and autism are identical.”

In Korea the situation is a bit more complicated. Autism is less stigmatizing than mental retardation but for autistic kids without mental retardation, autism is more stigmatizing for the family than the preferred diagnosis, Reactive Attachment Disorder (which, in cases where there is no demonstrable pathological care-taking environment, can be construed as a version of the refrigerator mother). Here is why autism is more difficult a category for the family as a whole.

In Korea, children American clinicians might diagnose with autism are often diagnosed with reactive attachment disorder (RAD). RAD is sometimes described pejoratively as “lack of love” (aejong kyolpip), a term that, for Koreans, conjures images of orphans craving affection and care. In Korea, RAD is thought to be a condition mimicking autism, caused by a mother’s absence of attachment to her son (this is the Korean version of the “refrigerator mother”). In fact, some clinicians in Korea even prefer to drop the word “reactive,” because, from their perspective, that word identifies the pathology in the child rather than the parent. By calling RAD simply “attachment disorder” (aechak changae), the blame can be more clearly placed on the mother.

RAD is a diagnosis that many parents prefer, even though it directly indicts the mother as a pathological caretaker. First, unlike autism, RAD or lack of love can be ameliorated by giving love; it’s not a permanent condition. An autism diagnosis, however, is seen as a statement that your child has no future. Autism, at least in Korea, is widely considered to be untreatable and many parents who try various therapies, like speech therapy, vitamin regimens, or herbal medicines, give up after a while if their child is not cured. The Seoul-based psychiatrist Dong-Ho Song, who is one of the best trained and busiest child psychiatrists in Seoul, and who is an important member of our Autism Speaks-funded project, had a patient who had been diagnosed with RAD first at the age 18 months and then subsequently by several other doctors throughout his early childhood. He was almost eleven when he came to Dr. Song and received his first diagnosis of autism.

Second, RAD or lack of love is not a genetic condition so it doesn’t impugn the family and harm family members’ marriage prospects in the same way a genetic disease might. This fear of autism as a genetic disorder is found in India and other countries as well, where parents fear that they will be marginalized from the social networks they feel they are entitled to. Thus, while RAD may stigmatize the mother, autism stigmatizes the whole family, past, present, and future.

Third, and perhaps most importantly, the [RAD] diagnosis makes sense to Koreans. Korea has been undergoing rapid social change for the last fifty years, emerging from the total devastation of the Korean War to becoming one of the richest countries in the world. Conservatism and resistance always accompany social change, and women make easy targets. Mothers are entering the workforce in unparalleled numbers, and Korean sociologists and child health experts are responding. They argue that women no longer know how to care for children. They leave their children with grandmothers or nannies and thus cannot bond with their children. Psychologists and psychiatrists thus ask: “Is it any wonder, then, that the children of working mothers have language and social deficits?”

The result is that many Korean parents are unwilling to put their child at risk for being diagnosed “incorrectly” with autism when they are already comfortable with their child’s existing diagnosis of RAD.

Now, as for the shooter at VTECH, Cho Seung-Hui, first, I am not a clinician, as you know. But second, as far as I know from reading the press, there is not much information on him as a child. It is unlikely he would have been diagnosed in Korea. In the U.S. it is also unlikely, if only because Korean-Americans are on the whole very reluctant to seek mental health care (since it is just so stigmatizing). Doctors I've interviewed (including Korean-American doctors) tell me that by the time someone gets to a mental health professional that person may be acutely mentally ill. Again, I am not a clinician, but I suppose it's possible that some clinician somewhere could have at one time used the word autistic as an adjective to refer to -- remember again that I am not a clinician -- the flat affect and introverted personality of someone who would grow up to have schizophrenia. Remember that in the DSM I and DSM II "autism" was mentioned in the criteria for childhood onset schizophrenia. You can see the criteria on my website at unstrange.com

DSM refers to the Diagnostic and Statistical Manual of Mental Disorders from the American Psychiatric Association. Its criteria for diagnosing autism originated with a childhood schizophrenia and has evolved over the years. You can see the link to the criteria to which Professor Grinker refers by clicking here.

In Special Autism Issue, Medical Journal Cites Economics, Early Diagnosis

The American Medical Association's Archives of Pediatrics and Adolescent Medicine published a special autism edition for its April 2007 issue that includes coverage of four important issues including the costs of autism services, a simple test for early diagnosis, the influence of autistic children on the development of younger siblings and an editorial citing the benefits of early diagnosis and treatment and more.

You can find good information about the articles in this issue by going to this resources website set up for the media. With one exception, the full-text versions of the articles are available online only to subscribers or for a fee. This article provides information on two of the articles. A future post will cover more information from this journal. Here is a rundown of the two articles, starting with the piece that is available free online.

1. The Costs of Autism Cases.

Autism costs society an estimated $3.2 million per patient for medical and other services and indirect costs including lost productivity taken over life of a person with autism spectrum disorder. That's according to Boston-based researcher Michael L. Ganz of Abt Associates and Harvard School of Public Health. Ganz's projections cover the life of a hypothetical group of people, born in 2000, and diagnosed with autism in 2003, and his report projects the costs out, in real dollars to the year 2066. He notes that the costs start off very high, then taper off and then "spike again in early adulthood, due to things like adult care and lost productivity. From the press release on Ganz's report:

“Direct medical costs are quite high for the first five years of life (average of around $35,000), start to decline substantially by age 8 years (around $6,000) and continue to decline through the end of life to around $1,000,” Dr. Ganz writes. “Direct non-medical costs vary around $10,000 to approximately $16,000 during the first 20 years of life, peak in the 23- to 27-year age range (around $27,500) and then steadily decline to the end of life to around $8,000 in the last age group. Indirect costs also display a similar pattern, decreasing from around $43,000 in early life, peaking at ages 23 to 27 years (around $52,000) and declining through the end of life to $0.”

Over an individual’s life, lost productivity and other indirect costs make up 59.3 percent of total autism-related costs. Direct medical costs comprise 9.7 percent of total costs; the largest medical cost, behavioral therapy, accounts for 6.5 percent of total costs. Non-medical direct costs such as child care and home modifications comprise 31 percent of total lifetime costs.

Because these costs are incurred by different segments of society at different points in an autistic patient's life, a detailed understanding of these expenses could help planners, policymakers and families make decisions about autism care and treatment, Dr. Ganz notes. "Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood," he concludes.

Parents will note that Ganz concludes the results of his study suggests "that physicians and other care professionals should consider recommending that parents of children with autism seek financial counseling to help plan for the transition into adulthood."

Noted. You can see an online version of this study, "The Lifetime Distribution of the Incremental Society Costs of Autism," including statistical tables, by clicking here.

Also noted: autism costs society more than $35 billion per year in direct and indirect expenses, Ganz writes.

2. A simple, early autism test: If baby doesn't respond to name at age one, watch for diagnosis of developmental delay.

Researchers found that 12-month-olds who don't respond when their names are called "may be more likely to be diagnosed with an autism spectrum disorder or other developmental problem at age 2" -- and so pediatricians should do this simple test at one-year checkups to rule out such a diagnosis or identify children who need further monitoring.

Baby responding to her name is "one of the most consistently documented behaviors in infancy that distinguishes children later diagnosed with autism from those with typical development or developmental delays," the researchers write in this report. The driver for this study is the potential for early intervention making a real difference for children diagnosed with autism spectrum disorders. See an abstract of the study, "A Prospective Study of Response to Name in Infants at Risk for Autism," here.

Researchers at the M.I.N.D. Institute at the University of California at Davis, the University of California at Sacramento, and the University of California at Los Angeles performed the study. They looked at children who were younger siblings of children who had autism, and therefore have a risk for ASD, and a control group. At age 12 months, the researchers write, 100 percent of the control group responded on the first or second name call, while 86 percent of the children in the risk group did.

Also see: "60 Minutes" reported about the M.I.N.D. Institute research into early diagnosis. See more about that here.