Airing Research on Evidence-Based Practices

In The Politics of Autism, I describe the difficulties of finding reliable information:

One problem is that a good deal of the solid research about autism lies in academic journals behind an Internet paywall, open only to people who have a university library card or can afford the journals’ exorbitant prices ($35 or more per article). Says neuroscientist Sophia Colamarino: “In today’s information age, where essentially anything said by anyone can be made accessible within a matter of moments, it is unfortunate that families have easy access to all BUT the most scientifically valid information, that which can be found in scientifically reviewed research literature.” NIH and Autism Speaks have tried to remedy this situation by requiring its research grant recipients to put any resulting peer-reviewed research papers on the PubMed Central online archive, but this policy affects only a fraction of the literature on autism.

Another challenge consists of translating research into practice.

At The Journal of Autism an Developmental Disorders, Ann M. Sam, Ann W. Cox, Melissa N. Savage, Victoria Waters, and Samuel L. Odom have an article titled "Disseminating Information on Evidence-Based Practices for Children and Youth with Autism Spectrum Disorder: AFIRM"

There is now great demand for knowledge about intervention practices that work. This demand is pushed by the increased prevalence of autism spectrum disorder (ASD; Baio et al. 2018), recognition that ASD is a condition that has substantial life-long implications (Howlin and Magiati 2017), and evidence that children, youth, and adults with ASD benefit from intervention and instruction programs (Wong et al. 2015). Yet, just knowing which practices are effective and are supported by research is not enough to lead to increased use of such practices. Implementation and diffusion sciences both emphasize the need to translate such scientifically-based information into practical information that service providers can use in their work with children and youth with ASD and their families (Dingfelder and Mandell 2011; Fixsen et al. 2013). The purpose of this paper is to describe one approach that translated information about evidence-based practices into practical information for use in programs for children and youth with ASD, report the utilization of such a dissemination effort by consumers, and examine the evaluation of such information by consumers

The abstract: 

Comprehensive reviews of the research literature have identified that focused  ntervention practices for children and youth with autism spectrum disorder have evidence of producing positive developmental and learning outcomes. The Autism
Focused Intervention Resources and Modules (AFIRM) project has translated evidence-based practices identified by Wong et al. (Journal of Autism and Developmental Disorders 45(7):1951–1966, 2015) into online learning modules. The purpose of this paper is to describe (1) the process for translating the research literature into practical information that practitioners can use, (2) its dissemination through a freely accessible website, (3) the use of the modules by over 64,500 users located in the United States and abroad, (4) knowledge gained as a result of completin the modules, and (5) consumers’ evaluations of modules usefulness and relevance.

• Baio, J., Wiggins, L., Christensen, D. L., et al. (2018). Prevalence of Autism Spectrum Disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MMWR Surveill Summ 2018, 67(SS-6), 1–23. https://doi.org/10.15585/mmwr.ss6706a1.Google Scholar
• Dingfelder, H. E., & Mandell, D. S. (2011). Bridging the research-to-practice gap in autism intervention: An application of diffusion of innovation theory. Journal of Autism and Developmental Disorders, 41(5), 597–609. https://doi.org/10.1007/s10803-010-1081-0.CrossRefGoogle Scholar
• Fixsen, D., Blase, K., Metz, A., & Van Dyke, M. (2013). Statewide implementation of evidence-based programs. Exceptional Children, 79(2), 213–230. https://doi.org/10.1177/001440291307900206.CrossRefGoogle Scholar
• Howlin, P., & Magiati, I. (2017). Autism spectrum disorder: Outcomes in adulthood. Current Opinion in Psychiatry, 30(2), 69–76. https://doi.org/10.1097/YCO.0000000000000308.CrossRefGoogle Scholar
• Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S., … Schultz, T. R. (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism and Developmental Disorders, 45(7), 1951–1966. https://doi.org/10.1007/s10803-014-2351-z.CrossRefGoogle Scholar

Evidence of Limited Evidence

Previous posts have discussed the dearth of hard evidence regarding many aspects of the autism issue, particularly those involving younger and older adults. A release from Vanderbilt University confirms this problem:

Vanderbilt University researchers studying interventions for adolescents and young adults with autism are reporting today that there is insufficient evidence to support findings, good or bad, for the therapies currently used.

Although the prevalence of autism is on the rise, much remains to be discovered when it comes to interventions for this population, the researchers concluded.

“Overall, there is very little evidence in all areas of care for adolescents and young adults with autism, and it is urgent that more rigorous studies be developed and conducted,” said Melissa McPheeters, Ph.D., M.P.H., director of Vanderbilt’s Evidence-Based Practice Center and senior author of the report, a systematic review of therapies published by the Department of Health and Human Services’ Agency for Healthcare Research and Quality (AHRQ).

Zachary Warren, Ph.D., director of the Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders, said, “There are growing numbers of adolescents and adults with autism in need of substantial support. Without a stronger evidence base, it is very hard to know which interventions will yield the most meaningful outcomes for individuals with autism and their families.”

Key findings:

The researchers systematically screened more than 4,500 studies and reviewed the 32 studies published from January 1980 to December 2011 on therapies for people ages 13 to 30 with autism spectrum disorders. They focused on the outcomes, including harms and adverse effects, of interventions, including medical, behavioral, educational and vocational.

• Some evidence revealed that treatments could improve social skills and educational outcomes such as vocabulary or reading, but the studies were generally small and had limited follow-up.
• Limited evidence supports the use of medical interventions in adolescents and young adults with autism. The most consistent findings were identified for the effects of antipsychotic medications on reducing problem behaviors that tend to occur with autism, such as irritability and aggression. Harms associated with medications included sedation and weight gain.
• Only five articles tested vocational interventions, all of which suggested that certain vocational interventions may be effective for certain individuals, but each study had significant flaws that limited the researchers’ confidence in their conclusions. The researchers’ findings on vocational interventions will be featured in the Aug. 27 issue of Pediatrics.

Autism and Animals

KXTV in Sacramento, CA, reports on service dogs:



Details about laws and regulations are here.

An editorial from the Fayetteville [NC] Observer:

A hand, please, for Lisa Pia, who may soon prove you can fight City Hall. Pia's fight was for her 10-year-old autistic son, Anthony, and his beloved pet, Loopey the potbellied pig. Loopey was more than Anthony's pet - she was a therapeutic animal who helped Anthony make progress in his struggle with autism.

Unfortunately, a less-than-compassionate majority on the City Council was unable to make a distinction between a small potbellied pig and a hulking domestic porker on its way to becoming spare ribs. Loopey was exiled beyond the city limits.

The pig still is a resident of the Jambbas Ranch, outside the city, where Anthony visits her.

But Lisa Pia didn't stop fighting when Loopey got the boot. She filed a housing-discrimination complaint with the U.S. Department of Housing and Urban Development, which, according to communications an Observer reporter has seen, is leaning toward agreeing with Pia.

In an email sent to council members in July, Mayor Pro Tem. D.J. Haire advised that "HUD recommends that we make accommodations for the family to have the pig." Beyond that, HUD, the city and Pia have been sworn to temporary silence.

We hope Loopey and Anthony are reunited. More important, the city needs to draft an enlightened policy about therapy animals. That would be a real victory.

See TV news story on the dispute.

The Frustrating Search for a Cure

At the Yakima Herald-Republic, editorial page editor Spencer Hatton writes of the frustration that he and fellow autism parents have felt as "cure" after "cure" has proved false.

So has the search for cures and causes of autism reached a dead-end?

Far from it. Another study, released online a few weeks ago by the peer-reviewed medical journal, Current Opinion in Pediatrics, offered this provocative claim: Toxins in the environment may be linked to autism.

According to the New York Times [an op-ed by Nicholas Kristof], the study noted the "likelihood is high" that numerous chemicals "have potential to cause injury to the developing brain and to produce neurodevelopmental disorders." If babies are exposed to harmful chemicals in the womb, the end result could be brain defects lasting a lifetime -- in other words, autism.

Though the debate continues in Congress over health care reform, I have heard no mention of autism. Coming to terms with its far-reaching impacts on our society won't be easy. Parents of children with autism know that.

They also know it's a disability that's not going away anytime soon.