Why autism therapies have an evidence problem

 Less than a third of the studies that test ABA-related interventions are randomized controlled trials, according to Project AIM. And single-case designs make up the bulk of studies included in national reports issued to U.S. clinicians. For example, the 2021 National Clearinghouse on Autism Evidence and Practice (NCAEP) report deemed 28 practices evidence-based, including many behavioral interventions, yet 85 percent of the studies reviewed are a single-case design. So too, the 2015 National Standards Report (NSP) identified 14 effective interventions for autistic children, adolescents and young adults but draws on a set of studies of which 73 percent are single-case.

Read/listen to more at Spectrum.

Methodological issues plague studies of early autism interventions

 The new work aimed to evaluate the reliability of studies that examine the effectiveness of early interventions. Conventional wisdom on therapy says “the earlier the better, and the more the better,” Sandbank says.

But the evidence supporting that idea is weak, she and her colleagues found. Several sources of bias threaten to undermine the reliability of many early-intervention studies: selection bias, when experimental groups and control groups are not randomly assigned; detection bias, when the same person administers an intervention and judges its effectiveness; and attrition bias, when participants from a control or experimental group disproportionately drop out over time.

The number of studies at high risk for selection or attrition bias decreased from 1989 to 2017, Sandbank and her colleagues found, drawing on data collected for their 2020 study on early interventions. But both types of bias were still common among the studies they reviewed, and 50 to 75 percent were at high risk for detection bias.

Many studies also leaned heavily on reports from parents or caregivers to assess the effectiveness of an intervention, instead of relying on clinical observations, which studies show are more reliable. Between 25 and 50 percent of the studies from 2011 to 2017 relied on parent reports, down from around 90 percent in 2000.

The team’s 2020 meta-analysis concluded that many early interventions had positive effects. But once they excluded studies that relied on caregiver reports or had a high risk of one or more types of bias, there were often too few studies left to assess an intervention’s effects.

Read more here at Spectrum. 

A Guide to Identifying and Understanding Scientific Research About Autism

This article is a tool to help you assess information about autism based on scientific principles. As you put these recommendations into practice, remember to use critical thinking and common sense when assessing any claim about autism. Combining an understanding of scientific research studies with your own powers of reasoning can help you: 

• Make evidence-based decisions
• Understand recommendations from your care team and discuss them knowledgeably
• Minimize overwhelm
• Advocate for yourself or your family member with autism. 

Read more here at the Autism Research Institute. 

XKCD

Gaps in Current Autism Research: The Thoughts of the Autism Research Editorial Board and Associate Editors

Anthony Bailey, University of British Columbia

Despite a welcome recent shift, a very small proportion of autism spectrum disorder (ASD) research focuses on the needs of affected adults, despite these individuals constituting the bulk of the ASD population and incurring over 90% of ASD related costs. The significance of this research gap is amplified by the relative lack of services for adults with ASD, which is particularly marked for those with intellectual abilities within the typical range.

Ralph‐Axel Mueller, Dept. of Psychology, San Diego State University

After decades of research activity, the neuroimaging community has yet to generate a clear picture of critical brain features in autism spectrum disorder (ASD). An underlying challenge is that the field needs to take heed of its own insights.

Andrew Whitehouse, Telethon Kids Institute, University of Western Australia

Despite an improvement over the past 5 years, there remains a substantial dearth of rigorous clinical trials of existing and new interventions. 

Read the full article here.

Summary of Advances in Autism Spectrum Disorder Research: Calendar Year 2017

The 2017 Summary of Advances provides short, plain language summaries of the top 20 research articles selected by the IACC. The studies selected for 2017 have provided new insight into potential biomarkers to predict risk of autism spectrum disorder (ASD), developmental trajectories of children with ASD, and the impact of the various prenatal exposures on ASD risk. The advances also include studies that investigated treatments and interventions for both ASD and co-occurring conditions, the impact of policy changes on ASD health care spending, patterns of injury mortality, and prevalence differences across demographic groups. 

PDF (5 MB)

Newsletter - Science in Autism Treatment

See the issue here.

Subscribe to the quarterly newsletter here.

Why studying autism in mice may be doomed to fail

Many of the original reports of social deficits in mice have not held up when tested by independent labs — including Silverman’s — or in different strains of mice. Inconsistent findings have plagued studies not just of SHANK3 mice, but also those with mutations in the risk genes CHD8, NLGN3, NLGN4 and CNTNAP2, among others. That has left many scientists wondering whether mice can ever recapitulate something as complex and human as autism.

“I think that defining an autism mouse is folly,” says Valerie Bolivar, director of the Mouse Behavioral Phenotype Analysis Core at the Wadsworth Center in Albany, New York. “To get all those things in a nice, neat package with a bow — we’re just not going to get that.”

A more productive approach may be to focus only on behaviors that are reproducible in mice, such as quantitative measures of how the animals learn. If researchers do want to get at social deficits, they may need to go back to basics and methodically catalog mouse behavior.

Read more here at Spectrum. 

Yet Another Reason We Don't Post Mouse Studies

 

Statistical errors may taint as many as half of mouse studies

Seven years ago, Peter Kind, a neuroscientist at the University of Edinburgh in Scotland, found himself in an uncomfortable situation. He was reading a study about fragile X syndrome, a developmental condition characterized by severe intellectual disability and, often, autism. The paper had appeared in a high-profile journal, and the lead scientist was a reputable researcher — and a friend. So Kind was surprised when he noticed a potentially serious statistical flaw.
The research team had looked at 10 neurons from each of the 16 mice in the experiment, a practice that in itself was unproblematic. But in the statistical analysis, the researchers had analyzed each neuron as if it were an independent sample. That gave them 160 data points to work with, 10 times the number of mice in the experiment.
“The question is, are two neurons in the brain of the same animal truly independent data points? The answer is no,” Kind says. “The problem is that you are increasing your chance of getting a false positive.”
The more times an experiment is replicated, the more likely it is that an observed effect is not just a lucky roll of the dice. That’s why more animals (or people) means more reliable results. But in the fragile X study, the scientists had artificially inflated the number of replications — a practice known as ‘pseudoreplication.’
This practice makes it easier to reach the sweet spot of statistical significance, especially in studies involving small numbers of animals. But treating measurements taken from a single mouse as independent samples goes against a fundamental principle of statistics and can lead scientists to find effects that don’t actually exist.

Read more here at Spectrum.

Autism Studies You May Have Seen Recently and What to Know About Them

With little known about it, an abundance of research about autism exists. It can be overwhelming to keep track of, and often these studies don’t take autistic individuals’ experiences into account or are rooted in finding a cure, versus bettering resources and therapies for people on the spectrum. In February alone, three stories based on research claims made headlines. The Mighty looked into each of these stories.

1. One study suggests a correlation between autism and ultrasounds.

Read more here at The Mighty.

VCU-ACE Research Article Database

Welcome to the research section of the VCU-ACE website. As part of our mission to promote quality programming for students with ASD, VCU-ACE conducts, reviews, and disseminates research into innovative and practical solutions to create successful outcomes for individuals with ASD in school, work, and life. Whether you are looking for a peer-reviewed article on a specific intervention, or just want to know more about what works in the field through listening to an episode of the Inclusion Roundtable podcast, you'll find what you need to increase your research knowledge here.

Use the database here. 

Understanding Research: An Autism Researcher Answers Your Questions

Consumers and patients are bombarded with information about medical research and autism treatments almost daily. Often these articles and social media posts include terms that can mean many different things. J. Kiely Law, research director and co-founder of the Interactive Autism Network (IAN), answers some common questions about what research really is – and isn't. Dr. Law is a physician, a researcher, and the mother of a young adult with autism spectrum disorder (ASD).

Interactive Autism Network: The terms "evidence-based medicine and treatment" or "science-based medicine" are used a lot. What do they mean?
Dr. Law: It means that an idea or treatment has been scientifically tested and, based on those test results, the idea is valid or, in the case of a treatment, the treatment works. The more times the test is repeated with the same result, the more evidence there is that the idea or treatment is valid. For example, cars go through a series of tests to make sure they are safe, and medical science does the same thing. Science uses a specific way of testing an idea, called a hypothesis. This way of testing is called the scientific method, and its purpose is to remove anything from the test that could bias or invalidate the results.

IAN: Sometimes providers or businesses publish patient testimonials about how a therapy or product works to treat autism. Is that similar to research?

Read more here.

Autism Research Lacks Cultural And Ethnic Diversity

Autism can affect individuals from all sorts of different backgrounds, but a new study suggests those from ethnically and culturally diverse families are not well represented in autism research. Instead, behavioral interventions and treatment programs for autism are largely tailored to white, middle-class children.

The researchers point out that an evidence-based practice that is effective for some children may not be for others and that healthcare practitioners should examine the degree to which positive results reported for a narrow group of participants effectively translates to autistic children from traditionally underrepresented groups. By determining who benefits from different interventions and why, practitioners might be able to serve racially and ethnically diverse patients.

Read more here.

Mouse Behavior From Autism Studies Not Reproducible

Today, we have an excellent example of why we should keep calm and carry on when it comes to mouse studies. At SFARI, a website for an autism research organization, Emily Singer writes that research groups cannot reproduce the reported “social deficit” behaviors in a mouse strain that’s intended to model autism in humans: A 2008 study from Nils Brose’s lab at the Max Planck Institute in Göttingen, Germany, first suggested that mice lacking NLGN4 have a number of autism-like social deficits. The lab published similar findings from the mice in a paper in November. But in September, two independent groups reported that the same strain of mice, bred from animals furnished by the Brose lab, do not show any social deficits.

 Click here to read more. 

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How Thinking People Read News About Science.

You've probably seen a lot of headlines lately about autism and various behaviors, ways of being, or "toxins" that, the headlines tell you, are "linked" to it. Maybe you're considering having a child and are mentally tallying up the various risk factors you have as a parent. Perhaps you have a child with autism and are now looking back, loaded with guilt that you ate high-fructose corn syrup or were overweight or too old or too near a freeway or not something enough that led to your child's autism.

Maybe you're an autistic adult who's getting a little tired of reading in these stories about how you don't exist or how using these "risk factors" might help the world reduce the number of people who are like you.Here's the bottom line: No one knows precisely what causes the extremely diverse developmental difference we call autism.

Research from around the world suggests a strong genetic component. What headlines in the United States call an "epidemic" is, in all likelihood, largely attributable to expanded diagnostic inclusion, better identification, and, ironically, greater awareness of autism. In countries that have been able to assess overall population prevalence, such as the UK, rates seem to have held steady at about 1% for decades, which is about the current levels now identified among 8-year-olds in the United States.


What anyone needs when it comes to headlines honking about a "link" to a specific condition is a mental checklist of what the article -- and whatever research underlies it -- is really saying. Previously, Double X Science brought you Real vs Fake Science: How to tell them apart. Now we bring you our Double X Double-Takechecklist. Use it when you read any story about scientific research and human health, medicine, biology, or genetics.The Double X Double-Take: What to do when reading science in the news

1. Skip the headline. Headlines are often misleading, at best, and can be wildly inaccurate. Forget about the headline. Pretend you never even saw the headline.

 Click here to read more. 

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Added - Treatment section of the ASD Video Glossary

Autism Speaks is pleased to announce the launch of the Treatment section of the ASD Video Glossary. The treatments presented here include some of the more commonly used interventions for children on the autism spectrum: behavioral interventions, developmental interventions, structured teaching and supports, clinical therapies, and toddler treatment models. We have chosen to focus on treatments that can be represented and understood in video format. There are many other treatments available and families are encouraged to speak with their professional team members to choose the treatments that best address the individual needs of their child. The treatments represented in the Glossary may not be appropriate for all children. While there are no conclusive studies showing that one approach is better than another, some approaches have been researched more than others and many approaches incorporate similar strategies. Parents and professionals are encouraged to look at all approaches and choose treatment strategies that best fit the needs of the child and family. This glossary of treatments is not all inclusive– there are plenty more treatments that are offered. Further, we do not endorse or recommend any treatment or program. We simply offer this Glossary of video clips and invite you to explore the different options. Additionally, we encourage you to download the two-page PDF treatment descriptions where you will see a list of the top research references that support each of the treatments.

 Click here to read more.

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Vaccination Status and Health in Children and Adolescents: Findings ofthe German Health Interview and Examination Survey for Children andAdolescents (KiGGS)

Background: Whether unvaccinated children and adolescents differ from those vaccinated in terms of health is subject to some discussion. Method: We evaluated data on diseases that are preventable by vaccination, infectious and atopic diseases, and vaccinations received that had been collected between 2003 and 2006 in a representative sample of 17 641 subjects aged 0 to 17 years in the framework of the German Health Interview and Examination Survey for Children and Adolescents (Kinder- und Jugendgesundheitssurvey, KiGGS). Results: Evaluable data on vaccinations were available for 13 453 subjects aged 1–17 years from non-immigrant families. 0.7% of them (95% confidence interval: 0.5%–0.9%) were not vaccinated. The lifetime prevalence of diseases preventable by vaccination was markedly higher in unvaccinated than in vaccinated subjects. Unvaccinated children aged 1–5 years had a median number of 3.3 (2.1–4.6) infectious diseases in the past year, compared to 4.2 (4.1–4.4) in vaccinated children. Among 11- to 17-year-olds, the corresponding figures were 1.9 (1.0–2.8) (unvaccinated) versus 2.2 (2.1–2.3) (vaccinated). The lifetime prevalence of at least one atopic disease among 1- to 5-year-olds was 12.6% (5.0%–28.3%) in unvaccinated children and 15.0% (13.6%–16.4%) in vaccinated children. In older children, atopy was more common, but its prevalence was not found to depend on vaccination status: among 6- to 10-year-olds, the prevalence figures were 30.1% (12.9%–55.8%) for unvaccinated children versus 24.4% (22.8%–26.0%) for vaccinated children, and the corresponding figures for 11- to 17-year-olds were 20.3% (10.1%–36.6%) versus 29.9% (28.4%–31.5%). Conclusion: The prevalence of allergic diseases and non-specific infections in children and adolescents was not found to depend on vaccination status.

 Click here for full article.

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