History of Autism: An Interesting Timeline

Jayne Lytel, a writer and parent of a child who has been mainstreamed in school, has created an interesting timeline with highlights of the history of autism, from the first recorded use of the term in 1911 to the present day. It's an interesting and easy to read presentation of information you may have picked up in other places that was meant for academic researchers. You can view it here.

Jayne is scheduled to publish a book,
"Act Early Against Autism," in March 2008, which recounts what she has learned as the parent of a child who was diagnosed with an autism spectrum disorder; according to her website, the book will include chapters on therapies her son found beneficial and insights into the financial demands that an autism diagnosis can place on a family.

Autism Stories Scheduled for National Public Radio Aug. 15 and 16

National Public Radio is scheduled to broadcast two pieces on autism on its Morning Edition program on August 15 and 16. Leaders of an autism advocacy group in South Carolina, who were among those interviewed, said we should listen for a segment focusing on Massachusetts schools on August 15, and a second piece the following day that takes a look at the issue of insurance for autism services.

South Carolina was the location for a major victory for advocates of autism services and insurance coverage earlier this year.

Assuming the pieces air as scheduled, they will be available for listening on the web. If you don't want to navigate NPR's website to find the clips, you can look back here for links to the segments.

UPDATE: Find the story focusing on Massachusetts schools' struggling to deal with a rising population of autistic children, aired Aug. 15, at NPR by clicking here. Reporter Larry Abramson spends time with public school teachers going through an ABA training session at the private May Institute, a school for children with autism. He also talks to educators, parents and kids.

While the story doesn't use the term applied behavior analysis explicitly, it describes ABA in concept. Glen Dunlap, the lecturer leading a teacher training session explains "teachers need to take a scientific approach to the problem" of getting autistic kids to learn. Teachers "must team up with their colleagues and take copious notes on the child's behavior. When does he act out? What seems to cause the most disturbing behavior? After months of work, the child's teachers succeeded in reining in his behavior."

"It takes a lot of work, but many public schools are managing to work with autistic children in mainstream classrooms, because they have to," Abramson reports.

UPDATE NO. 2: Find the link to South Carolina advocate Lisa Rollins' interview with NPR's John Ydstie by clicking here. In a key excerpt, Rollins describes the arguments she and other advocates made in favor of covering autism services like ABA for young children:

Rollins says the parents who backed the bill argued that autism is similar to a stroke or to Alzheimer's disease, neurological conditions that are covered by insurance.

"We also pointed out to legislators that it was the economically smart thing to do, because these early interventions can make the difference between a child going to a residential care-type of institution, nursing home facility, for the rest of their lives or being able to be a typical kid and be therefore a contributing member of society."

Bonus link: On its web page, NPR linked to Autism Bulletin's map of state insurance laws.


Also see:

South Carolina Legislature Overrides Veto to Pass Autism Insurance Law

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

The research grants recently announced by the National Institutes of Health (NIH) add up to $66 million over the next five years, and the round of funding -- plus a second round next year -- demonstrates the federal government's commitment to finding causes and new treatments for autism spectrum disorders, according to the agency's program manager for autism research.

"It shows the NIH's commitment to intensify our efforts to find causes and new treatments for autism," said Alice Kau, program manager for autism at the National Institute of Child Health and Human Development, a section of the NIH.

The grants announced Aug. 2 went to six universities around the country; in total, the researchers will receive about $13.3 million per year for the next five years, Kau said in an interview with Autism Bulletin. The NIH soon will begin evaluating another group of grant funding applications and plans to announce another round of research awards in 2008, which will increase the agency's spending on autism research to approximately $24 million annually, she said.

The research awards this year, and in 2008, represent an effort to establish "autism centers of excellence" or "ACEs" and to consolidate two existing research programs, called STAART, or Studies to Advance Autism Research and Treatment, and CPEA, or Collaborative Programs of Excellence in Autism. (See the press release from Aug. 2 here.)

The STAART program established eight research centers around the country: Boston University, Kennedy Krieger Institute, Mt. Sinai Medical School, University of California at Los Angeles, University of North Carolina at Chapel Hill, University of Rochester, University of Washington and Yale University. This website about the STAART program has more background about the research going on at some of these facilities, including outpatient studies that examine relationship building interventions, drug trials and the relationship between behavior and diet in young children.

This website has more information about the CPEA research efforts, including the status of specific research projects (whether peer-reviewed papers have been published yet, for example). These research efforts are exploring a range of issues, including genetic traits of autism and whether there's a causal link between the Measles-Mumps-Rubella vaccine and autism spectrum disorders. The website indicates it was last updated in September 2006.

Of course, the research takes time before it yields results that affect the lives of people with autism and families of those people. Kau said we'll have to wait a while before we see the results of these and other research studies about autism. "It's still very exciting," she said of the latest funding round.

Also see:

* National Institutes of Health Reorganizes Autism Research Program, from Autism Bulletin

* Autism Activities at NIH, federal government website last updated October 2006.

* National Institutes of Health, press release from October 25, 2001, "New Children's Environmental Health Centers to Study Causes of Autism and Other Disorders," link here.

National Institutes of Health Reorganizes Autism Research Program

The National Institutes of Health (NIH) unveiled a plan August 2 to "intensify its efforts to find the causes of autism and identify new treatments" for autism spectrum disorders (ASD).

The announcement means that the government research agency will consolidate two existing programs into a single research effort called the Autism Centers of Excellence (ACE). The NIH announced a set of grants under this program (see more information below), and said there would be another round of grants awarded in 2008. The announcement does not say how much money the government is awarding through these research grants; I have sent a question to the NIH and will let you know what I learn.

You can read the NIH press release here.

The NIH said the Autism Centers of Excellence will include both research centers designed to "foster collaborations between teams of specialists, who share the same facility so that they can address a particular research problem in depth." And example given: "specialists in brain imaging might collaborate with behavior researchers to determine if a particular behavior is associated with a difference in brain structure. They might also consult with a team of genetics experts to find a hereditary basis for their observations."

The research networks involve researchers at many locations around the nation, all working on a single question. This is valuable, the NIH said, because these many researchers can recruit volunteers around the country to participate in a study.

Data gathered by these research funding recipients will go to the National Database for Autism Research, a web-based application housed at the NIH for autism researchers around the world to share information.

National Institutes of Health Director Dr. Elias Zerhouini said the consolidation of two existing programs -- the Studies to Advance Autism Research and Treatment, and Collaborative Programs of Excellence in Autism -- is "needed to capitalize on the gains made by the NIH research effort in autism."

That makes sense, but Autism Bulletin readers may also recall that during last year's long debate before Congress passed the $945 million Combating Autism Act to boost autism research funding and services, there was a lot of discussion about reforming the way the NIH goes about researching autism and other medical conditions. (Joe Barton of Texas, a key Republican committee chairman at the time, sought to block the bill used his desire to reform NIH as an argument. See past coverage here and here.)

The Grant Recipients

The NIH published a list of six Autism Centers of Exellence grant award recipients. They reflect an interesting variety of research efforts going on around the country. The recipients are below, with information provided by the National Institutes of Health:

— Edwin H. Cook (University of Illinois at Chicago): Researchers at the University of Illinois at Chicago ACE Center will focus on understanding the repetitive behavior seen in ASD. Known as "insistence on sameness," this behavior is a hallmark of ASD. Examples of insistence on sameness consist of wanting to wear the same clothes every day, taking the same route to work or school, or becoming fixated on certain subject matter, such as buildings or cars. Center researchers will focus on genetic factors as well as brain chemicals and brain functions that could account for repetitive behaviors in people with ASD, and test whether genetic differences influence how individuals respond to certain medications intended to reduce the occurrence of these behaviors.

— Eric Courchesne (University of California, San Diego): Researchers at the UCSD ACE Center also will use brain imaging to track brain development in children believed to be at risk for autism spectrum disorders. Unlike other ACE program projects, which will attempt to identify forerunners of ASD in the siblings of children with ASD, the UCSD researchers will study infants who have been referred by their physicians. The physicians will make the referrals on the basis of a checklist of behaviors that are similar to those of older children with ASD. The primary goal of this center is to identify brain or other physical differences that might predispose a child to autism. The UCSD Center will collect some of the first information ever obtained on how the brains of very young children with autism process and respond to information.

— Geraldine Dawson (University of Washington). Researchers at the University of Washington ACE Center will seek to identify genes and other potential factors that may predispose an individual toward ASD, as well as factors that might protect against them. In addition to genes, the researchers will try to determine the risk of ASD by examining communication difficulties, early behaviors, patterns in the sounds babies make, and brain structure and activity patterns. Researchers will also try to determine whether certain types of interactions between the parent and baby can decrease the chances for ASD.

— Nancy J. Minshew (University of Pittsburgh): Researchers at the University of Pittsburgh ACE Center will study how people with ASD learn and understand information. Research shows that the ability to organize information into categories is critical to language development. The Pittsburgh researchers will use brain imaging techniques to study how infants at risk for autism and toddlers diagnosed with the disorder place information into categories. Researchers will also use brain imaging techniques to study which parts of the brain are activated in people with and without ASD when processing information and emotions.

— Joseph Piven (University of North Carolina at Chapel Hill): In hopes of identifying brain differences in children who develop ASD, researchers at this Network of sites operating under the direction of the University of North Carolina will use brain imaging techniques to compile images of the brains of very young infants. Some of these children may go on to develop ASD. Their brain images will be compared to those of other infants, to identify differences between children who develop autism and those who do not. While previous studies have documented the enlarged brains often seen in ASD patients, little is known about the abnormal processes during early brain development in children with ASD. The research could offer new insights that lead to earlier diagnosis of ASD.

— Marian D. Sigman (University of California, Los Angeles): Researchers at the UCLA ACE Center will seek to understand how ASD affects the ability to communicate. The researchers will try to find clues to language-related communications problems by looking at genes, behavior and brain structure and functioning. The researchers also are interested in disorders that affect the mirror neurons. Mirror neurons are brain cells that become active either when a person performs an action or watches the action performed by someone else. When many patients with ASD are asked to imitate behaviors, images of their brains show that their mirror neurons are less active than those of other people. The researchers will try to stimulate the mirror neurons of people with ASD by having them follow a set of instructions to complete a task.

House Bill Calls for Autism Education Task Force

Rep. John Yarmuth, a first-term Kentucky Democrat in Congress, filed a bill that would assign a task force to "identify and disseminate evidence-based educational strategies and promising best practices" for autistic children in kindergarten through grade 12. Filed June 7, the bill is H.R. 2609, entitled "Empowering Children with Autism through Education Act of 2007."

You can read a July 30 press release about the bill here. “The number of children diagnosed with autism is escalating at an alarming rate,” Yarmuth said in his statement. “Yet, our methods of working with these children have failed to adequately address the challenges confronting them. This legislation will lead to solutions that ensure all children get a quality education and realize their vast potential.”

The text of the bill does not identify any particular method of educating children with autism spectrum disorders, apparently leaving that to the task force to identify them. The Education Secretary would be responsible for appointing the task force, and the bill's initial language would assign it to do identify and spread the word about about these educational strategies and best practices. The task force would also report to Congress about:

(1) Learning models, interventions, and services that demonstrate improvements in reading, writing, and math proficiency for individuals with autism.

(2) The cost-effectiveness of these learning models, interventions, and services, and their applicability for local education agencies.

(3) Professional development needs of educators who serve individuals with autism.

(4) Methods for incorporating State-, local- and community-based programs and services into the classroom to provide comprehensive support for individuals with autism.

(5) Identification of barriers to successful implementation of programs and services related to the education of and provision of services to children with autism and recommendations to address those barriers.

(6) Dissemination of findings to Congress, all relevant agencies, and States and United States territories to improve the quality of learning for individuals with autism.

You can find full text of the bill at Thomas.gov, which is the official website of Congress. Search under bill number H.R. 2609.