A multidisciplinary team from the University of the Basque Country (UPV/EHU) suggests that delving deeper into the barely studied phenomenon of camouflaging can improve autism research

Agustín Vicente, Valentina Petrolini and Ekaine Rodríguez, researchers of the University of the Basque Country’s Lindy Lab-Language in Neurodiversity group. CREDIT Nuria González. UPV/EHU.

Recently, there has been much talk about camouflaging in autism. However, research into camouflaging is still relatively very recent, its nature has been barely studied, and there are a lot of open questions. This work, therefore, aims to present an integrative view of camouflaging. It can be characterised as the set of strategies adopted by the autistic population to fit into the social world. “We aim to understand this phenomenon better and to analyse in depth how camouflaging develops so that some suggestions can be put forward on how to step up research into it,” said Valentina Petrolini, a researcher in the UPV/EHU’s Lindy Lab group and one of the authors of the study.

People normally camouflage themselves with two aims: hide their diagnosis and fit in socially. “We would say that people camouflage themselves when they rehearse conversations they are going to have, when they imitate other people’s gestures and expressions and, in general, when they make an effort to hide their autistic traits,” explained Valentina Petrolini. “Many studies link the attempt by these individuals to pass themselves off as who they are not with high levels of anxiety and long-term mental problems,” added the UPV/EHU researcher.

How is camouflaging detected in the autistic population? Tools, such as tests and questionnaires, currently exist. Still, they overlook many people in the spectrum, such as people who unconsciously camouflage themselves, people with intellectual and/or linguistic disabilities, etc. In this work, “we are proposing that information be triangulated by using existing evidence, gathering information from the environment, observing a person’s behaviour in different contexts and talking to people in different contexts… in other words, by observing the phenomenon of camouflaging without directly asking the person involved,” said Valentina Petrolini.

Extending the study of camouflaging to currently overlooked groups also has significant implications in terms of impact. This study extends the discussion on camouflaging to currently little-studied groups on the autism spectrum, i.e. children and adults with linguistic and/or intellectual disabilities. “We argue that camouflaging in these groups may differ from what the current literature describes as typical cases of camouflaging,” said Valentina Petrolini. “One of the points that emerge from our study,” Petrolini went on, “is that camouflaging may emerge differently, and exert a different impact, depending on the people who do it”.

This purely theoretical work concludes that “the basis of much of the research conducted so far is limited to the characterisation and representativeness of the participants, suggesting that the findings cannot be applied to the autistic community as a whole” Valentina Petrolini. The work also highlights the need to explore the phenomenon of autism in greater depth and to develop measuring tools that are more accurate and inclusive than the current ones. “We could even go as far as to say that it is a call to action so that generalized conclusions are not drawn without having an accurate picture of the situation,” said the UPV/EHU’s Lindy Lab research group.

This video highlights five common autistic sleep challenges followed by practical remedies to help support you on your journey for deeper, less-disturbed sleep. 💤

Spoon Theory is a useful concept for sharing the invisible struggles experienced by people with certain illnesses, disabilities, and/or differing abilities.🥄 This video explores the origin of Spoon Theory as well as how it works and how you can apply it to your life as someone on the spectrum. Scroll down for timestamps you can click to jump to specific sections of the video.

This week’s video is a chatty sort of Q&A, largely because I’m trying hard to prevent burnout right now. I have some really exciting videos lined up so please keep an eye out for them over the next month! What benefits have you been encountering from being open about your autism diagnosis, and how do you deal innerly with the negative ones? Doesn’t it scare you the idea of having a kid who has a high probability of being autistic? How do you tell your friends and family that you are autistic? Did you ever think you also have ADHD? There seems to be much overlap with executive function. If you had a diagnosis before kids what would you have done to get ready for the overwhelm?

T. A. Meridian McDonald, PhD, faculty research instructor in the Department of Neurology at Vanderbilt University Medical Center CREDIT Vanderbilt University Medical Center

Physical health disparity conditions in autistic adultshave not been the focus of any research funded by the U.S. National Institutes of Health (NIH) in the last four decades, an analysis of a federal database found.

Using the NIH Research Portfolio Online Reporting Tools Expenditures and Results (RePORTER) database to determine whether the NIH has funded any research related to physical health disparity conditions in autistic adults, T. A. Meridian McDonald, PhD, faculty research instructor in the Department of Neurology at Vanderbilt University Medical Center, used 30 separate searches to discover that “autism” is often used as a key term – not the target population. Results of the study are published todayin the Journal of Autism and Developmental Disorders(JADD), a top autism research journal. 

Autistic adults are at greater risk of nearly every major chronic health condition, including obesity, diabetes, gastrointestinal and sleep disorders, and cardiovascular and immune conditions. These conditions contribute to increased pain and mortality experienced by autistic people as well as to decreased quality of life such as lower rates of employment and social inclusion.  

“We don’t know if treatments designed for the general population will work for autistic people,” McDonald said. “Take cognitive behavioral therapy, the front-line treatment of insomnia, for example. This treatment is typically carried out in six to eight face-to-face provider-patient clinic sessions. During these sessions, the clinician provides a ton of information about how sleep works and how to do the treatment. The delivery of this information in these types of sessions may overtax many autistic people’s information and social processing abilities.” 

It’s key to understand how treatments work in different populations, accounting for social and physiological determinants of health, McDonald said. In the example of insomnia, the treatment often requires patients to change routines and habits, and that may be a serious challenge for autistic patients, she said. 

McDonald used “autism,” and “adult” coupled with one of 30 health disparity condition terms in the RePORTER, a repository of NIH-funded projects that is searchable with key terms. Searches surfaced numerous studies, which, upon analysis, often used “autism” in a project as a key term rather than a study designed to evaluate the prevalence or manifestation of disease or treatment in autistic people. Research found only four studies that look at health conditions related to autistic adults, but none of the studies examined the treatment of physical health disparity conditions in autistic adults.  

“Many of these studies are focused on the prevention of multiple health conditions. A study’s goals might focus on the prevention of neurological conditions, such as stroke, epilepsy and autism. This type of study is not looking at the prevention of stroke in autistic people, who may have different risk factors or need specialized treatment options,” said McDonald, lead author on “Mind the NIH-Funding Gap: Structural Discrimination in Physical Health-Related Research for Cognitively Able Autistic Adults.”

“We need funding to test whether interventions are effective with autistic people. If treatments are not effective, then funded research is needed to adapt or develop interventions that are effective in treating physical health disparity conditions experienced by autistic adults,” she said.

Both the U.S. Congress and the Interagency Autism Coordinating Committee identified co-occurring physical health conditions as a research priority and allocated funds for autism research to the NIH. Each of the 27 institutes that comprise the NIH have latitude in how it determines its research priorities. 

The research in JADD describes several potential “nodes,” or processes that contribute to the lack of studies focused on health disparities in autistic people, including designation of a “primary disease,” which are often thought to be the cause of other conditions. McDonald and colleagues note this assumption has not been tested in autism and “this designation [of primary disease] prevents researchers from testing whether co-occurring physical health conditions can be treated in autism.”  

Audrey Scudder, co-author and an autistic undergraduate student at Vanderbilt University and active member of both the McDonald’s Spectrum for Life Lab and the Vanderbilt Autism & Neurodiversity Alliance, wants to prioritize advocacy for the autistic community as she pursues a research career. 

“Many of my family members, friends and other fellow community members have expressed a need for health care that is accessible and effective for autistic people” Scudder said. “Addressing health disparities would greatly improve the quality of life of many autistic adults who struggle with finding care that treats their whole personhood. This study indicates that at this point in time there isn’t enough research supporting what’s effective in this population of adults.” 

Autistic adults have been left out of the recent shift to root out disparities in research, diagnosis and treatment, McDonald said. 

“Moving forward I want the NIH to change funding policies to prioritize research on physical health disparity conditions in autistic adults. At the very least, they should not be excluded from review across agencies that fund physical health research,” she said.