Autism Spectrum Disorder May Be More Prevalent Among Children Born Very Prematurely

Science Daily (Jan. 30, 2009) Researchers from Boston University School of Medicine (BUSM) and Boston Medical Center (BMC), in collaboration with other medical centers, have found that children born more than three months premature, are at three times the risk for screening positive on the modified checklist for autism in toddlers (M-CHAT). Children who screen positive on M-CHAT may be at greater risk for developing autism.

The Council on Children with Disabilities of the American Academy of Pediatrics recommends that pediatricians screen for an autism spectrum disorder (ASD) if there are concerns about the child's development. One of the ASD-specific screening tools is the M-CHAT. The M-CHAT is a checklist that asks the parent/caregiver to report on 23 behaviors. Checking any three items or two of six critical items as "unable to perform" leads to a positive screen on M-CHAT.

The researchers enrolled more than 1,500 infants born more than three months early at one of 14 hospitals in five states. An M-CHAT was completed by the nearly 1,000 caregivers of children who returned for follow-up evaluation at age 2.


According to the researchers, when an M-CHAT is used as a screen in unselected children during well-child care visits between 16 and 30 months of age, 5.7 percent screen positive. Overall, more than 21 percent of the children in this study screened positive. The study investigators found that the presence of multiple physical handicaps appears to contribute to screening positive, independent of true autism risk.


"However, in our study, even after excluding those children with motor, vision and hearing impairments, we still found 16 percent screened positive," said lead author Karl Kuban, MD, SMEpi, a professor of pediatrics and neurology at BUSM and Chief, Division of Pediatric Neurology at BMC. "Because we have not yet determined if those who screened positive satisfy criteria for an ASD, we cannot yet assess the predictive values of the M-CHAT among children born at extremely low gestational ages," he added.

Making a diagnosis of ASD often occurs after many years of symptoms, at times delaying appropriate services for children with the disorder. "Determining the predictive value for screening positive on the M-CHAT among extremely low gestational age children and among handicapped children may offer critical information for pediatricians, since the AAP has recommended early screening for autism," added Kuban.


Funding for this study was provided by the National Institute of Neurological Disorders and Stroke.


Journal references:

Karl C. K. Kuban, MD, SM, Epi, T. Michael O'Shea, MD, MPH, Elizabeth N. Alfred, MS, Helen Tager-Flusberg, PhD, Donald J. Goldstein, PhD, Alan Leviton, M. Positive Screening on the Modified Checklist for Autism in Toddlers (M-CHAT) in Extremely Low Gestational Age Newborns. Journal of Pediatrics, January 2009 DOI:
10.1016/j.jpeds.2008.10.011 , Neil Marlow, MD, and Samantha Johnson, PhD. Positive Screening Results on the Modified Checklist for Autism in Toddlers: Implications for Very Preterm Populations. Journal of Pediatrics, January 2009 DOI: 10.1016/j.jpeds.2008.11.028

Legislature Proposes Autism Registry

Studies show Autism affects millions of families across the country.
New Mexico lawmakers are taking steps to try and determine just how widespread the disorder is.
Tuesday, a Senate committee unanimously approved legislation that would create a statewide voluntary autism registry.

Another bill in the works would mandate insurance coverage for autistic children through high school.
"We're way behind the curve and families are struggling mightily so something needs to get done no matter what is happening budget wise," said Liz Thompson, a mother of an autistic child.

Supporters feel it would save the state money in special education and corrections cost.
Copyright 2009 by KOAT.com.

New Study Further Disputes Vaccine-Autism Link

By Carla K. Johnson, Associated Press

A new study from Italy adds to a mountain of evidence that a mercury-based preservative once used in many vaccines doesn't hurt children, offering more reassurance to parents.
In the early 1990s, thousands of healthy Italian babies in a study of whooping cough vaccines got two different amounts of the preservative thimerosal (pronounced thih-MEHR'-uh-sawl) from all their routine shots.


Ten years later, 1,403 of those children took a battery of brain function tests. Researchers found small differences in only two of 24 measurements and those "might be attributable to chance," they wrote in the February issue of the journal Pediatrics, which was released Monday.

Only one case of autism was found, and that was in the group that got the lower level of thimerosal.
Autism is a complex disorder featuring repetitive behaviors and poor social interaction and communication skills. Scientists generally believe genetics plays a role in causing the disorder; a theory that thimerosal is to blame has been repeatedly discounted in scientific studies.

"Put together with the evidence of all the other studies, this tells us there is no reason to worry about the effect of thimerosal in vaccines," said the new study's lead author, Dr. Alberto Tozzi of Bambino Gesu Hospital in Rome.

The debate over thimerosal and autism has been much stronger in the United States than in Italy, Tozzi said. But the researchers recognized a chance to examine the issue by going back to the children who had taken part in the 1990s whooping cough research.

Randomization sets the new study apart. The random assignment of children rules out the chance that factors other than thimerosal, such as education or poverty, caused the results.

Thimerosal, used in some vaccines to prevent the growth of bacteria and fungus, hasn't been in U.S. childhood vaccines since 2001, except for certain flu shots. Italy and other European nations began removing it in 1999. U.S. health officials recommended the removal of thimerosal as a precaution and to reduce the overall exposure of children to mercury.

Safety regulations still require multi-dose vials of vaccines to contain some type of preservative to prevent the spread of infection from contaminated vials.

The study, funded by the U.S. Centers for Disease Control and Prevention, drew praise from outside experts.

" It's yet another well done, peer-reviewed research study that has demonstrated there is no risk of any neurodevelopmental outcomes associated with thimerosal in vaccines," said epidemiologist Jennifer Pinto-Martin of the University of Pennsylvania.

"This becomes the fourth study to look for subtle signs of mercury toxicity and show the answer was 'no,'" said Dr. Paul Offit, chief of infectious diseases at the Children's Hospital of Philadelphia, the author of a book on autism research and the co-inventor of a rotavirus vaccine.
Tozzi said comparing children with no exposure to thimerosal could have improved the study.

"However, if thimerosal were a cause of harm, it is likely that this effect would increase with the
administered dose," he said.

The children received either 62.5 micrograms or 137.5 micrograms of ethyl mercury from all their shots during their first year of life. Thimerosal breaks down as ethyl mercury in the body. Before the reduction of thimerosal in the United States, the maximum exposure for infants was 187.5 micrograms of ethyl mercury.

The researchers found the children in both groups scored, on average, in the normal range on 11 tests of memory, attention, motor skills and other brain functions.

Those 11 tests included 24 measured outcomes. Small, but statistical differences were found for only two of those areas, and only for girls. The girls with higher exposure scored worse on a finger-tapping test with their dominant hands, and on a vocabulary test in which they were asked to name common objects.

There was no difference in boys on those outcomes or others. Researchers also found no difference in tic disorders. And the one autism case found in the lower-intake group was likely a chance finding, Tozzi said.

CARD's Partnership with Otis College of Art and Design Gets Stronger

By Michele Jaquis, CARD Videographer/Editor

For the third semester in a row, CARD is partnering with the Integrated Learning Program at Otis College of Art and Design in Los Angeles to offer the course "Creative Solutions to the Autism Epidemic." The partnership began a few years ago when Otis faculty were asked to propose courses for the new IL Program. Michele Jaquis, who's been teaching at Otis since fall 2000 and working at CARD since 2001, first as an ABA therapist and more recently as a videographer/editor, knew right away what organization she wanted to work with. She spent the spring and summer of 2007 developing the course in collaboration with CARD's Torrance Office, located about 11 miles from the Otis main campus. The first course was offered in Fall 2007.

Each semester since, Jaquis, along with Virginia Hein, Otis Toy Design faculty member, have been guiding students to create projects that transform, enhance and/or give voice to the experiences of children diagnosed with Autism Spectrum Disorder, their families, CARD staff and the public awareness of Autism. Work from the fall semester course can be seen here. Notable past projects include prototypes for a support package for families, a GFCF cookbook, a social-stories book about the importance of brushing one's teeth, a roller-cart called the "Carganizer" for organizing therapy supplies, and an art workshop for children with Autism.

"It is a chance for me to connect the two worlds I am involved in, as well as to give my students an opportunity to create socially responsible art and design projects in real world situations," says Jaquis. In addition to CARD, The IL Program at Otis partners with several organizations and companies, including Homeboy Industries, the City of El Segundo, Platinum Studios, the Center for the Study of Political Graphics, Baldwin Hills Conservancy, and the Custom Hotel, to name a few. Students learn about each site partner's mission and work in interdisciplinary teams to define solutions that respond to the issues of each individual partner. In some cases site partners have commissioned Otis students to implement the projects they proposed, giving students a chance to see their work in a public setting and further engage with audiences outside of Otis.

CARD staff and clients are encouraged to join the Otis / CARD Virtual Classroom in order to add content and provide feedback that can directly influence the projects as the semester progresses. Final projects will be presented at CARD Headquarters in the beginning of May.

RECOVERED Journeys Through the Autism Spectrum and Back -
DVD's on sale

Comedy Night to Benefit Children with Autism


Get ready to laugh until your stomache hurts!

Some of New York's most up and
coming comedians are joining forces for a spectacular ...

Comedy Night to Benefit
Kids with Autism

When:
Sunday, Feb. 15 @ 8pm

Where:
The Comedy Club
2235 Empire Blvd - Webster, NY

Doors Open: 7 pm

Must be 18 +


Tickets:
$10
To purchase your tickets, contact:
Center for Autism and Related Disorders, Inc. (CARD)
6th North Main Street, Ste 110
Fairport, NY 14450
Or Call:
585-377-6590 x 22


Proceeds from this event benefit

Autism Screening Tops the President's Medical To-Do List

By Nancy Shute, US News and World Report

Whitehouse.gov launched at 12:01 pm Wednesday, even before the new president had taken his oath of office on the Capitol's West Front.

Autism is the only disorder or disease mentioned explicitly in Obama's 24-point agenda.
Heart disease and cancer don't get the call. Neither does diabetes, or other chronic diseases. But there are four hefty bullet points addressing autism.

Obama called for:
1. Increased funding for research, treatment, screenings, public awareness and support services for
autism spectrum disorders.

2. "Life-long services" for people with autism spectrum disorders, as children and as adults. Many parents struggle to find and pay for screening and treatments for their children, but there is even less coverage and capacity for adults with autism-based impairments.

3. More funding for the 2006 Combating Autism Act, as well as improving state and federal autism programs.

4. Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds. This is the biggie; children are currently screened only if parents or pediatricians voice a concern, so too many children aren't diagnosed until they enter elementary school. The earlier treatment starts, the more effective it is, and a national screening program would help reduce the number of kids falling through the cracks. It would also be a huge undertaking, at a time when both government and privately insured health care is foundering.

That second bullet point would be a huge help for families who are struggling to provide care. In a recent survey, 52 percent of parents of children with autism said their
family finances were drained by treatment and care, compared to 13 percent of typical families.

The 2006 Combating Autism act promised almost $1 billion over five years for autism research and development, but Congress hadn't appropriated $200 million per year, even before the economy hit the skids. The Obama manifesto gives a big fat hint that for autism, at least, the hard times cited in the new president's inaugural address won't mean big cuts in funding.

Still, universal screening for autism will be a huge challenge. There's no blood test that can be used to diagnose autism, as there is for hereditary diseases like galactosemia and sickle cell, which are screened for using a heel stick while a newborn is still in the hospital.

With autism, parents and doctors instead need to observe a child and look for delays in language, social interactions, and gross motor skills. The Centers for Disease Control and Prevention recommends that pediatricians screen children during well-baby visits at 9 months, 18 months, and 24 or 30 months. (Here's the CDC's page on screening for autism.) But many doctors don't get around to doing those screens, and until very recently the recommended tests weren't sensitive enough to pick up mild autism spectrum disorders.

Early screening for autism is a terrific idea. Making it happen will be a tall order, even for the can-do Obama team.

Alison Singer Announces Her Resignation as Executive Vice President of Autism Speaks

Disagreement on Vaccine Research Prompts Departure

NEW YORK, NY (January 15, 2009) – Alison Tepper Singer, executive vice president of communications and awareness for Autism Speaks, today announced that she has resigned from her position with the advocacy organization, effective next month.

“It has been an honor and a pleasure to help to build this organization into the preeminent autism advocacy group -- the group that has, in fact, elevated the word “autism” to the global vocabulary,” said Singer. “I am grateful to Autism Speaks founders Bob and Suzanne Wright for their leadership, insight, commitment and for the tremendous support and love they have shown to my family and me.”

“However, for some time I have had concerns about Autism Speaks’ policy on vaccine research. Dozens of credible scientific studies have exonerated vaccines as a cause of autism. I believe we must devote limited funding to more promising areas of autism research.”

Singer resigned prior to the January 14th Interagency Autism Coordinating Committee (IACC) meeting, at which the discussion of vaccine research was to be continued from the December meeting, at the request of one of the public members. Knowing she might cast a vote with which Autism Speaks might disagree, she resigned from Autism Speaks prior to the meeting. Singer serves as a public member of the IACC and will continue to serve until 2011. She was appointed to the IACC by outgoing HHS Secretary Michael Leavitt in 2007.

The IACC, created via the Combating Autism Act of 2006, is responsible for coordinating all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder, including drafting a Strategic Plan for autism research with budgetary requirements. At the January meeting, the IACC voted to seek input on two proposed studies of vaccines and autism from the National Vaccine Advisory Committee Safety Working Group (NVAC), an HHS group specifically charged with undertaking and coordinating scientific review of the federal vaccine safety system, prior to including the proposals as specific objectives in the strategic plan. Singer voted in favor of this motion.

Singer was the first professional hired by Autism Speaks when it launched in 2005. She served as interim CEO for three months, then as senior vice president and later as executive vice president. She also served as a staff member of the board of directors until her resignation. Singer has been responsible for directing the organization’s award-winning awareness and strategic communications programs, including its work with the Ad Council which was awarded a prestigious “Effie” award in 2008 in recognition of the 43 percent increase in overall autism awareness directly attributable to the campaign. She also serves on the Executive Committee of the Yale Child Study Center and on the board of directors of Autism Spectrum News, as well as on numerous state and local autism advocacy committees. She has appeared on Oprah, The Apprentice, NBC Nightly News, Good Morning America , CBS Early Show and numerous other news programs discussing autism issues.

“My work with Autism Speaks and within the advocacy community has been exceptionally rewarding, and I will continue to advocate on behalf of my daughter, my brother and the millions of others affected by autism spectrum disorder,” said Singer.


CARD Reveals Outcome of First Arizona Early, Intensive Behavioral Therapy Study

In 2006 the Arizona state Legislature and Governor Janet Napolitano approved $3.6 million funding for a two-year comprehensive outcome study to evaluate the effectiveness of early, intensive Applied Behavior Analysis (ABA) as a treatment for autism.

The Center for Autism and Related Disorders, Inc. (CARD) was selected to administer the treatment and spearhead the study in Phoenix. Now, one year later, the 16 children have shown promising results.

Amy Kenzer, PhD, BCBA, CARD’s manager of Research and Development says, “At this point, all of the children in the Arizona grant have received services for approximately a year and a half. Following one year of treatment, several children showed significant improvements as measured by standardized assessments and parent report, including two children who gained 50 IQ points. Many of the children also started full day Kindergarten this fall and are doing very well in their new classrooms.”

Kenzer will present the complete outcome report on February 14, 2009 at the Autism/Asperger Conference held at the Anaheim Convention Center in Anaheim, California. Her presentation begins at 1:30pm. Attendees will learn about the therapy utilized with all 16 children, the results of the therapy after one year, and the current status of the children.

About Amy Kenzer, PhD, BCBA:
Dr. Amy Kenzer, Research and Development Manager at the Center for Autism and Related Disorders, has over 10 years of experience in the field of Behavior Analysis and Autism.

Dr. Kenzer earned her Ph.D. from the University of Nevada, Reno and is a Board Certified Behavior Analyst. Her research interests include outcome-level analyses of ABA-based interventions, component analysis of ABA-based teaching techniques, fluency instruction, and basic learning processes in children with autism.

About the Center for Autism and Related Disorders, Inc. (CARD):
The Center for Autism and Related Disorders, Inc. (CARD) was established in 1990 and is among the world's largest and most experienced organizations effectively treating children with autism and related disorders. CARD operates 20 satellite offices throughout the United States and abroad. CARD has treated thousands of children around the world. Its services include assessments, supervision, parent/teacher training and one-to-one therapy.

Following the principles of Applied Behavior Analysis (ABA), a treatment for autism that has been thoroughly researched and empirically validated by the scientific community, CARD develops individualized treatment plans.

Testosterone Levels Linked To Autistic Traits

Exposure to high levels of testosterone in the womb is related to the development of autistic traits.

This is the conclusion of groundbreaking research published in the British Journal of Psychology on 12th January 2009, which found that levels of testosterone in amniotic fluid were linked to children's autistic traits up to ten years later.

Psychologists Dr Bonnie Auyeung, Professor Simon Baron-Cohen and their team at the Autism Research Centre at the University of Cambridge measured the levels of foetal testosterone in the amniotic fluid of 235 women who underwent amniocentesis during pregnancy.

Years later these mothers completed questionnaires that measured their children's autistic traits. By this time, the 118 boys and 117 girls were aged between 6 and 10. High levels of foetal testosterone were found to be associated with high scores on two separate measures of autistic traits (the Child Autism Spectrum Quotient (AQ-Child) and the Childhood Autistic Spectrum Test (CAST)) for both boys and girls.

High scores on these measures of autistic traits reflected poorer social skills, imagination and mind reading but good attention to, and memory for detail. The team followed the children from before birth during the unique longitudinal project, which was funded by the Medical Research Council (UK) and the Boston-based Nancy Lurie Marks Family Foundation.

This research goes further than previous studies which have found that higher levels of foetal testosterone are associated with less eye contact at children's first birthday, slower language development at their second birthday, more peer difficulties at their fourth birthday, and more difficulties with empathy at their sixth birthday.

What is novel in this new study is that as it also links higher foetal testosterone to autistic traits such as excellent attention to detail, and a love of repetition, as well as social and communication difficulties.

Professor Baron-Cohen said: "The study highlights for the first time the association between foetal testosterone and autistic traits, and indicates that foetal testosterone not only masculinises the body, it masculinises the mind and therefore the brain. "We all have some autistic traits - these are a spectrum or a dimension of individual differences, like height. It is important to note that this research does not demonstrate that elevated foetal testosterone is associated with a clinical diagnosis of autism or Asperger Syndrome; to do that would need a sample size of thousands, not hundreds."

"Our ongoing collaboration with the Biobank in Denmark will enable us to test that link in the future. Dr Auyeung added: "Since the male foetus produces on average twice as much testosterone as the female foetus, the present research may be relevant to the theory that autistic spectrum conditions autism is reflect an 'extreme male brain' - that autism is an extreme manifestation in terms of the structure and function of the male brain. This theory may also explain the higher incidence of these conditions in boys than in girls." Notes The British Journal of Psychology Part 1 2009 also contains a commentary on this paper by Dr Ami Klin of Yale University School of Medicine.


The Autism Research Centre at Cambridge University comprises a group of scientists and clinicians conducting research into the psychology and biomedical aspects of autism and Asperger Syndrome, and pioneers the development and evaluation of special educational methods.

CARD Winter 08 Newsletter - Hot off the Press!

To read the latest autism news around the nation and inside of the Center for Autism and Related Disorders, Inc - please click here.

New Research Raises Possibility of Prenatal Screening for Autism

Prenatal screening for autism moves a step closer to reality today as new research has found ways of potentially identifying the condition in unborn babies.

By Murray Wardrop, Telegraph.co.uk

Scientists at Cambridge University discovered that high levels of testosterone in the amniotic fluid of pregnant mothers was linked to autistic traits in their children.
The findings raise the possibility of undertaking tests in the womb to detect the condition, which would allow parents the controversial ability to decide whether to terminate foetuses.

Scientists are now calling for a national debate on the consequences of the screening process, called amniocentesis, which is already used to detect Down's syndrome in unborn babies.

Parents of autistic children are especially critical of testing linked to

Sufferers of the disorder include people with extraordinary abilities in mathematics and music, as well as children who are unable to communicate and require lifelong care.

Critics point out that a prenatal test would not be able to identify such differences in the effects the disorder can have on individuals.

Director of the research team, Professor Simon Baron-Cohen, told the Guardian: "If there was a prenatal test for autism, would this be desirable? What would we lose if children with autistic spectrum disorder were eliminated from the population? "We should start debating this. There is a test for Down's syndrome and that is legal and parents exercise their right to choose termination, but autism if often linked with talent. It is a different kind of condition."

Experts from the university's autism research centre discovered the testosterone link after studying 235 children from birth to the age of eight.

They found that when high levels of the hormone were found, children showed autistic traits such as a lack of sociability and verbal skills by the time they were eight.

Researchers May Have Answers for the Rise in Autism

A study published in the journal Epidemiology this month by Irva Hertz-Picciotto and Lora Delwiche offers some definitive answers to a decades-long debate concerning the rise in autism.

Over the past 20 years there have been increasing reports of a rise in cases of autism. Many considered these reports evidence of an epidemic and pointed to various factors such as environmental toxins to explain the rise in autism. However, there were many other factors that could explain this rise. Among the most frequently cited explanations to discount an actual rise in autism were the methods used to diagnose new cases of autism, inclusion of milder cases of autism, earlier age of diagnosis, and poor methods for estimating prevalence.

Many in the autism community felt these explanations were insufficient and offered counterarguments and reanalyses of datasets. And thus the debate continued with few clear answers.

The study by Hertz-Picciotto and Delwiche evaluated all clients of the Department of Developmental Services Regional Centers in California aged 3 years and older for the period of 1990 through 2006. For children under 3, records from the Early Start Report were used for a similar time period.

The authors controlled for a number of confounds that previous studies failed to do. The interested reader is encouraged to read their study as the description of their methods was very thorough (The Rise in Autism and the Role of Age at Diagnosis. Epidemiology, 20, 84-90). All in all, the study represents the most rigorous analysis of the rise in autism that has been published to date.

Their study found that since the early 1990’s the incidence of autism rose 7 to 8 fold. They discuss that “…changes in diagnostic criteria, the inclusion of milder cases, and an earlier age at diagnosis, during this period suggests that these factors probably contribute 2.2-, 1.5-, and 1.24 – fold increases in autism, respectively, and hence cannot fully explain the magnitude of the rise in autism”. This leaves a 2- to 3-fold increase in the incidence of autism.

The authors conclude “…the current occurrence of autism, a seriously disabling disorder in young children, at rates of greater than 30 per 10,000 individuals – and still rising in California – is a major public health and educational concern”.

We here at CARD would certainly agree.







Dennis Dixon, Ph.D.
Research and Development Manager
Center for Autism and Related Disorders, Inc.

The CARD Position on Biomedical Treatment for Autism

The CARD Position on Biomedical Treatments for Autism, January 19, 2006

Autism is currently among the most controversial issues in American public health. Presumably because of the mysterious nature of the disorder, autism continues to be the focus of countless “fad treatments,” the vast majority of which either lack scientific support or have been scientifically disproved, outright (e.g., facilitated communication, see Jacobson, Mulick, & Schwartz, 1995). Several independent review sources have consistently found that early intensive applied behavior analytic intervention (ABA) continues to be the only treatment for autism which is backed by substantial scientific evidence (NYSDH, 1999; Satcher, 1999). The effectiveness of ABA has been replicated yet again in two recent outcome studies (Howard, Sparkman, Cohen, Green, & Stanislaw, 2005; Sallows & Graupner, 2005).

A substantial percentage of children with autism currently receive “biomedical” treatments, despite a current lack of evidence to support or refute most of them. In a recent survey of parents of children with autism (Green, et al., 2005), 27% of parents reported that their children with autism currently receive treatment in the form of special diets and 43% reported using vitamin supplements.

CARD’s position on the use of biomedical treatments in clinical practice is centered around three basic points: 1) many parents of children with autism believe that various biomedical treatments have been responsible for substantial improvement in their children, 2) very little research has been conducted on the effects of biomedical treatments for autism, and 3) parents must ultimately make the decision as to which treatments are appropriate for their children, regardless of diagnosis or disorder.

CARD’s position on research on biomedical treatments and on the collaboration of behavior analysts with clinicians and researchers from other disciplines is based on the points elaborated above. At least two factors contribute to what we perceive as a grievous need for sound empirical research on the effects of biomedical treatments for autism. First, as the Green, et al., (2005) study demonstrates, biomedical treatments are being implemented on a widespread basis. This fact alone is more than ample justification for conducting research on their safety and effectiveness. Such widespread use must be tempered with sound research. Second, many parents honestly believe that their children have significantly benefited from biomedical treatments. As clinicians and applied scientists, we have an ethical responsibility to take the concerns and beliefs of our clients seriously. To dismiss the convictions of our clients would be tantamount to disrespect for those who are mostly closely affected by autism. At the same time, ample research has demonstrated that clients can be made to believe that an intervention is or is not effective, regardless of the actual effects produced, and therefore opinion alone (be it that of a client or a scientist) is never to be accepted or rejected outright. Sound empirical treatment research is the only path toward addressing such concerns in a sufficient manner.

Throughout the history of science, particular schools of thought and areas of research have risen and fallen amidst ubiquitous controversy. Ultimately, controversy may have very little effect on which approaches to a problem are borne out. When a useful solution to a problem is discovered, and the results are replicated many times over, little is left to controversy. The use of ABA for children with autism was once highly controversial but the unrelenting work of parents and the repeated and consistent replication of beneficial results in the scientific literature has moved the field of ABA closer to the mainstream. Most biomedical treatments for autism have not yet been subjected to repeated, rigorous outcome research. Thus conclusions regarding their effectiveness (either for or against) cannot be made.

The best safeguard against controversy in the evaluation of scientific issues may be skepticism. Skepticism does not refer to disbelief. It refers to the practice of withholding judgment on a given topic until such time as sufficient evidence warrants judgment one way or the other (Shermer, 2002). In the absence of conclusive evidence, then, one might be advised to be skeptical of the view that an intervention works, as well as to be skeptical of the view that it does not. It is CARD’s position that conclusive evidence for or against the effectiveness of most biomedical treatments for autism does not at this time exist. Hence the urgent need for empirical investigation and the futility of blind acceptance or denial of the validity of the biomedical treatment of autism.

A common feature of any controversy is polarization. A casual review of the major clinical, research, and advocacy factions within the field of autism today reveals that most parties ardently maintain that biomedical treatments are either extremely effective or a total sham. Many who advocate for biomedical treatments appear to believe that all biomedical treatments are equally effective and all are virtual cures for autism. Many who reject the utility of biomedical treatments, on the other hand, do so across the entire range of treatments, without regard to the particular case for or against the many divergent treatments which fall under the biomedical umbrella. Particularly given the still largely unknown etiology of autism, either position appears premature at the current time. Autism is a spectrum disorder which is comprised of millions of individuals who present with widely divergent characteristics. It is not yet even known whether all cases of autism share a common etiology. Given the widely divergent manifestations of the disorder, if any biomedical treatments are proven to be effective in the future, it seems unlikely that any particular one will prove equally effective for all persons with autism. Even less likely is the notion that all biomedical treatments will be equally effective or ineffective, if the large variability within autism is ignored.

Perhaps most disturbing is the notion that it is not possible to reliably evaluate the separate and combined effects of ABA and biomedical treatments for autism. This perspective is based on a fundamental misunderstanding of the nature of experimental scientific investigation. Virtually all disciplines of experimental science agree that experimentation consists of altering one variable at a time and observing the effects that the alteration produces on another variable. Sound experimentation depends on manipulating one variable at a time while simultaneously controlling for the influence of extraneous variables. To the extent that this is done (regardless of the particular scientific field or research topic), inferences can be made about the effects of one variable on another. There is nothing peculiar about autism, ABA, or biomedical treatments which preclude this sort of experimentation. It is common for clinicians (behavioral, medical, or other) to manipulate multiple variables simultaneously in order to bring about optimal treatment outcome and any time this is done it is likely to preclude precise analysis of which variables were responsible for improvement. In order to produce sound research on the separate and combined effects (if any) of each approach, experiments must hold one variable constant while manipulating another. This approach to autism research is largely untouched within the ABA and biomedical communities, but this fact does not preclude such research from being developed, and indeed it is currently under way at several research sites.

Toward this end, CARD is currently collaborating with medical doctors to conduct sound research on biomedical treatments for autism. The focus of this effort is to identify which, if any, biomedical treatments result in which particular improvements for particular individuals with autism, given their unique biomedical and behavioral status. All research conducted is interdisciplinary in nature and all treatment studies evaluate multiple behavioral and biomedical measures. The goal is to establish a model for interdisciplinary collaboration between behavior analysts and medical doctors in researching treatment for individuals with autism. It is our hope that the research produced will forge a path toward addressing the debate regarding biomedical treatments for autism with sound scientific data, thereby displacing the current culture of hearsay and controversy.

In summary, the CARD position on the biomedical treatment of autism is not one of belief or disbelief, it is one of uncertainty. It is our hope that the coming decade will yield the evidence which is so desperately needed to transform the current debate about biomedical treatment from one based on subjective report to one which is grounded in sophisticated analysis of sound scientific data.

References


Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reilly, M., & Sigafoos, J. (in press). Internet survey of treatments used by parents of children with autism. Research in Developmental Disabilities.


Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G., & Stanislaw, H. (2005). A comparison of intensive behavior analytic and eclectic treatments for young children with autism. Research in Developmental Disabilities, 26, 359-383.

Jacobson, J., Mulick, J. A., & Schwartz, A. A. (1995). A history of facilitated communication: Science, pseudoscience, and antiscience science working group on facilitated communication. Americal Psychologist, 50, 750-765.

New York State Department of Health Early Intervention Program. Clinical Practice Guideline: Report of the Recommendations, Autism/Pervasive Developmental Disorders, Assessment and Intervention for Young Children. 1999. Publication #4215. Health Education Services, P.O. Box 7126, Albany, NY 12224.

Sallows, G. O., & Graupner, T. D. (2005). Intensive behavioral treatment for children with autism: Four-year outcome and predictors. American Journal on Mental Retardation, 110, 417-438.

Satcher, D. Mental health: A report of the surgeon general. U.S. Public Health Service. 1999. Bethesda, MD http://www.surgeongeneral.gov/library/mentalhealth/chapter3/sec6.html

Shermer, M. (2002). Why people believe weird things: Pseudoscience, superstition, and other confusions of our time. New York, NY: Henry Holt.

FOR MORE INFORMATION - VISIT: WWW.CENTERFORAUTISM.COM

ABA: Addressing Cognitive and Emotional Development in Children with Autism

By
Doreen Granpeesheh, PhD, BCBA
Jonathan Tarbox, PhD, BCBA

Click here for a complete read of the article featured in Autism Advocate, Dec 2008 issue.

For other recent articles by Dr. Granpeesheh, click here.

Blue Cross And Blue Shield Of Oklahoma Announces Autism Benefits


Blue Cross and Blue Shield of Oklahoma announced the addition of an autism benefit to insured groups effective their next policy year. This change will not in any way affect the current medical coverage that has always been available to children with autism.

Blue Cross and Blue Shield of Oklahoma is responding to market interests in the benefits and coverage of certain autism-related medically necessary services. "We want to commend the Oklahoma Legislature for allowing the market to work," said Bev Binkowski, director, public affairs.

"Rather than having a 'one-size-fits-all' mandate for all companies, we have been able to develop a benefit to meet the needs of our members."Blue Cross and Blue Shield of Oklahoma will provide "a clinically reasonable benefit that doesn't unduly create a price impact on small employer groups and affect their ability to provide health care coverage to their employees," said Dr. Joe Nicholson, Blue Cross and Blue Shield of Oklahoma's chief medical officer and vice president of health care management.

Benefit enhancements are expected to include evaluation and management procedures, speech, physical and occupational therapies. The health plan is targeting a January 2010 implementation date for this new benefit."Blue Cross and Blue Shield of Oklahoma has been able to develop a benefit that won't dramatically increase premiums," Binkowski said. "This decreases the likelihood that the increased benefit will result in employers dropping coverage and adding to the state's uninsured population."

"This action will allow us to provide a benefit for proven therapeutic services while research continues to identify effective treatments or medical solutions for children with autism," Nicholson said. Blue Cross and Blue Shield of Oklahoma is a member of the Affordable Access to Health Care coalition. For more information, visit http://www.affordableaccesstohealthcare.org/.

Blue Cross and Blue Shield of Oklahomahttp://www.bcbsok.com/