A University of Massachusetts Amherst researcher has been awarded a National Institutes of Health (NIH) grant to study bilingualism in children with autism whose household speaks a language other than English.

“This is a group that often is excluded from existing research or intervention studies,” says Megan Gross, assistant professor of communication disorders in the School of Public Health and Health Sciences. “And I think there’s still a lot of misinformation that can get out there to bilingual families about what language to speak at home with their child.”

The five-year, $755,000 career development grant will enable Gross to be mentored by a multidisciplinary team of experienced researchers from the fields of psychology, communication disorders and public health as she recruits 60 families in western Massachusetts for her sequential mixed-methods project, combining both quantitative and qualitative measures. 

“I’ve worked clinically with autistic children, but I have not done research in the area of autism, so I think this career development award will be really beneficial for gaining training in how to conduct research with this population responsibly,” Gross says.

Until relatively recently, bilingual families who have a child with autism were often encouraged by professionals to stick to one language in the home.

“I think they’re still getting advice that if language is hard for their child, two languages will be even harder, so they should just speak English,” Gross says. “And that has a lot of negative potential ramifications for the child’s positive development in terms of identity, their ability to communicate and interact with family members who may not speak English and so on. So, for a condition like autism, where communication is one of the areas that can be a source of challenge, adding to that by creating a language barrier between the child and their family member can be really problematic.”

Recent studies have shown that bilingual exposure is not detrimental to the development of children on the autism spectrum, Gross points out. “We need to move beyond that to understanding how we promote bilingual development in autistic children,” she says.

Gross will examine the type of bilingual environment to which children with autism , ages 4-6, are exposed, as well as the different factors that relate to their ability to speak or understand both Spanish and English. She will also consider the children’s social communication and social-cognitive skills, such as cognitive flexibility, as well as their ability to understand and communicate in two languages.

To make it possible to include children who do not speak, Gross will use innovative eye-tracking technology to analyze their ability to comprehend bilingual spoken language. A camera at the bottom of a laptop computer will track the child’s eye movement as a word or phrase in English and Spanish is played out loud.

“By following their eye movements over time, we can tell whether they’ve understood the word or phrase that they heard because they should look at the corresponding picture,” Gross says. “This is a group I’m especially interested in including in my study. Even if they are not speaking, we need a way to measure what they are understanding when people are speaking to them in Spanish and English. And what skills might they have that they aren’t able to show us through their spoken language?”

Gross will spend the first year of her research in training and preparing materials, and will start recruiting families in 2024. Ultimately, she will interpret the quantitative findings within the context of in-depth qualitative interviews, focusing on family perspectives and challenges. The long-term goal is to collaborate with families and support services to develop community-based programs that promote bilingual children’s linguistic and social-cognitive development across the autism spectrum.

“It’s been a great interest of mine to contribute to the evidence base at the intersection between dual-language learning and autism,” Gross says.

This piece uses both identity-first (autistic person) and person-first language (person with autism) out of respect for differing preferences expressed among autistic adults, family members and community advisory board members for this project.

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Documented cases of autism in the New York–New Jersey metro region increased by as much as 500 per cent between 2000 and 2016, with the highest increase among children without intellectual disabilities, according to a Rutgers study.

This is the opposite of past findings, which have suggested that autism typically co-occurs with intellectual impairment.

“One of the assumptions about autism is that it occurs alongside intellectual disabilities,” said Josephine Shenouda, an adjunct professor at the Rutgers School of Public Health and lead author of the study published in Pediatrics. “This claim was supported by older studies suggesting that up to 75 per cent of children with autism also have an intellectual disability.”

“Our paper shows that this assumption is not true,” Shenouda said. “In fact, in this study, two-in-three children with autism had no intellectual disability whatsoever.”

Using biannual data from the New Jersey Autism Study, researchers identified 4,661 8-year-olds with autism in four New Jersey counties (Essex, Hudson, Ocean and Union) during the study period. Of these, 1,505 (32.3 per cent) had an intellectual disability; 2,764 (59.3 per cent) did not.

Subsequent analysis found that rates of autism co-occurring with intellectual disability increased two-fold between 2000 and 2016 – from 2.9 per 1,000 to 7.3 per 1,000. Rates of autism with no intellectual disability jumped five-fold, from 3.8 per 1,000 to 18.9 per 1,000.

Shenouda said there might be explanations for the observed increases, though more research is needed to specify the precise causes.

“Better awareness of and testing for autism does play a role,” said Walter Zahorodny, associate professor at the Rutgers New Jersey Medical School and senior author of the study. “But the fact that we saw a 500 per cent increase in autism among kids without any intellectual disabilities – children we know are falling through the cracks – suggests that something else is also driving the surge.”

Autism prevalence is associated with race and socioeconomic status.  The Rutgers study identified that Black children with autism and no intellectual disabilities were 30 per cent less likely to be identified than White children. In comparison, kids living in affluent areas were 80 per cent more likely to be identified with autism and no intellectual disabilities than children in underserved areas.

Using New Jersey Autism Study data and U.S. census data, the researchers were able to estimate rates of autism undercounting in the four counties.

Shenouda said addressing the findings could help close identification gaps and eventually bring much-needed autism services to lower-income areas.

“With up to 72 per cent of the autism population having the borderline or average intellectual ability, emphasis should be placed on early screening, early identification and early intervention,” she said. “Because gains in intellectual functioning are proportionate with intense intervention at younger ages, it’s essential that universal screening is in place, especially in underserved communities.”

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. 💤