People with autism are an extraordinarily diverse group, with a broad range of interests, abilities and experiences. Approximately 1 in 59 children in the United States is diagnosed with autism, and each year, more than 60,000 teenagers with autism age out of the school system and launch into adulthood.
These groups—both children and adults—need support, but that support isn’t always available. Though the behavioral symptoms of autism start to emerge at about 18 months of age, children’s median age at diagnosis remains stubbornly stuck at around ages 4 to 5. Even after diagnosis, many children don’t receive the services they need because of long waitlists for treatment or inadequate insurance. And the service system for adults with autism is particularly sparse, with research showing that people with autism often struggle to live independently, do not receive much-needed services and are disproportionately unemployed.
Psychologists are among those working to address all these gaps, through efforts ranging from conducting basic research on development to designing interventions to engaging in the delicate work of implementing those interventions effectively in the community. And as children diagnosed with autism grow up, this field of study in psychology is poised to expand far beyond its roots in child development.
“Psychologists play a key role in autism research, from defining the earliest symptoms to developing and testing new interventions,” says Geraldine Dawson, PhD, a child clinical psychologist and the director of the Duke Center for Autism and Brain Development. “A psychologist’s understanding of clinical assessment, development and behavioral principles has greatly informed our understanding of autism and its treatment.”
Autism in infancy
Autism occurs on a spectrum characterized by varying degrees of repetitive behavior, difficulties with verbal and nonverbal communication, and deficits in social-emotional reciprocity. In recent years, self-advocates with autism have pushed back against language centered around finding a “cure” for autism, preferring to focus on describing autism as a difference, not a disorder. Some researchers, too, have stepped away from the notion of “curing” autism.
“Autism is not a disease,” says Ami Klin, PhD, a clinical psychologist, director of the Marcus Autism Center in Atlanta and chief of the Division of Autism and Developmental Disabilities at Emory University School of Medicine. “It’s more like a trait that may or may not translate into a disability. Whether or not it translates to a disability is within our power to influence.”
As this shift in framing has become more common, autism research has been boosted by major funding pushes by the National Institutes of Health (NIH) and other federal agencies. One focus is on providing extra scaffolding and support for children with autism when they are very young. Infants who develop autism show similar patterns of unusual brain growth, particularly the hyperexpansion of cortical surface area between 6 and 12 months of age, and an overgrowth of brain volume and disruption in functional connectivity between 12 and 24 months of age, according to a review co-authored by Joseph Piven, MD, a psychiatrist and the director of the University of North Carolina’s (UNC) Carolina Institute for Developmental Disabilities (Molecular Psychiatry, Vol. 22, No. 10, 2017opens in new window). These observations were made in younger siblings of children with autism—who are at high risk of developing autism themselves—as part of an NIH-funded multisite research project. Researchers like Piven think that the brain differences found in these high-risk children will also be found in children who are the first in their families with a diagnosis. If the results do generalize across the two groups, they could lead to brain imaging–based autism diagnoses before symptoms emerge. Earlier diagnosis, in turn, could lead to more effective interventions.
“Infancy is a period where the brain is maximally malleable,” Piven says.
To intervene that early, though, researchers need to find biomarkers for autism that can be reliably detected in the first year of life. This work is in its early stages, but psychologists have found some potential candidates. UNC School of Medicine psychologist Heather Hazlett, PhD, and colleagues found that MRI measurements of cortical surface and brain volume overgrowth at 6 and 12 months of age could predict later autism diagnoses with 94% accuracy (Nature, Vol. 542, No. 7641, 2017opens in new window). Another possible candidate for individual-level predictions of autism is functional connectivity, the correlation in brain activity across brain regions, Piven says. In a study of 56 infants, he and his colleagues found that functional connectivity measured with MRI at 6 months correctly predicted autism diagnoses at 24 months with an overall accuracy of 96% (Emerson, R.W., et al., Science Translational Medicine, Vol. 9, No. 393, 2017opens in new window).
Gaze-tracking technology might be another avenue for early diagnosis, according to Klin. In 2013, Klin and neuroscientist Warren Jones, PhD, found that infants who would later be diagnosed with autism showed a decline in time spent looking at other people’s eyes beginning after 2 months of age (Nature, Vol. 504, No. 7480, 2013opens in new window). The researchers are now testing a device designed to use eye-gaze information to capture autism risk in babies and young toddlers.
Because there aren’t any clinical diagnostic tests for autism before 18 months of age, there is little research on interventions in infants and toddlers. But there is good reason to think that malleable infant brains would take well to treatment. Klin and his team are part of the Baby Siblings Research Consortium, a project that prospectively follows the younger siblings of children with autism. So far, Klin says, the research suggests that the baby siblings eventually diagnosed with autism have better outcomes than their older siblings. Their work further suggests that these advantages have something to do with the younger siblings being followed prospectively (Micheletti, M., et al., Journal of Child Psychology and Psychiatry, Vol. 61, No. 1, 2020opens in new window). “This kind of very intensive surveillance of these at-risk children could in fact have a positive effect on these children,” Klin says.
Part of the younger siblings’ advantage could be due to their parents having already been coached on ways to engage a child with autism. The best way to the brain of a baby with autism is through his or her parents, says Dawson. Typically, developing children absorb information from social interactions with their caregivers, Dawson says, adding that “what we want to do is have strategies for the babies who might be developing autism or at risk for autism, so they’re also getting those same learning opportunities.”
Expanding access, improving implementation
There are numerous existing therapies and supports that have been successful in helping kids with autism reach their potential, but there are also barriers to support at every step from screening to diagnosis to access to services. Pediatricians sometimes fail to use common screening measures according to the standardized instructions, says Diana Robins, PhD, a clinical psychologist and interim director of the A.J. Drexel Autism Institute at Drexel University. Robins helped develop one of the most commonly used tools, the Modified Checklist for Autism in Toddlers (M-CHAT), which includes a round of standardized questions to ask when initial screening raises red flags (Pediatrics, Vol. 133, No. 1, 2014opens in new window). But pediatricians sometimes cherry-pick a few questions from the checklist instead of using the whole scale, Robins says, and often fail to ask the standardized follow-up questions for children who may be on the spectrum.
Research by David Mandell, ScD, a professor of psychiatry at the University of Pennsylvania, has found racial and ethnic disparities in autism diagnosis, suggesting that underserved populations, in particular, aren’t getting the screenings and referrals they need (American Journal of Public Health, Vol. 99, No. 3, 2009opens in new window). Mandell’s work has also shown that when preschoolers get early intervention in research settings, the resulting improvements in communication, daily functioning, social skills and other developmental domains are often quite large (Nahmias, A.S., et al., The Journal of Child Psychology and Psychiatry, Vol. 60, No. 11, 2019opens in new window). When those same interventions are studied in the community, outside tightly controlled research settings, the effects are still there, but smaller. Part of the problem, Robins says, is access. Most young children “are not getting enough dosage, and certainly not enough high-quality intervention, by people who are trained,” she says.
Applied behavior analysis, or ABA, for example, is considered the gold standard for autism intervention. This therapy focuses on reinforcing specific behaviors, such as communication or self-care. Though ABA has its critics, who argue that reinforcement for behaviors focuses too much on forcing children with autism to act typical without addressing their psychological and mental health needs, behavioral interventions have a substantial amount of research supporting their efficacy. A review co-authored by Dawson found that such behavioral interventions can improve language, cognitive abilities and social communication while reducing aggression and anxiety symptoms (Current Opinion in Pediatrics, Vol. 23, No. 6, 2011opens in new window). But many children end up on years-long waitlists for behavioral interventions, owing to provider shortages and low Medicaid reimbursement rates. For some kids, a shortage of services may delay their diagnoses: Pediatricians sometimes hesitate to screen for autism when they know they have nowhere to refer a child for treatment, Robins says.
While behavioral interventions are effective for those who can access them, there are currently no pharmaceutical treatments specifically for autism. Children are sometimes prescribed atypical antipsychotics, antiepileptic drugs and other pharmaceuticals off-label, but evidence of their efficacy is often mixed or lacking, and side effects can be intolerable, according to an article co-authored by Na Young Ji, MD, a child and adolescent psychiatrist at the Kennedy Krieger Institute in Baltimore (Current Opinion in Psychiatry, Vol. 28, No. 2, 2015).
Psychologists are tackling many of these problems. One push is to train pediatricians to implement screening correctly, Robins says. Another top priority is to do research examining whether early diagnosis yields quicker intervention, which in turn is expected to yield better outcomes in children with autism. Such evidence would help make the case that universal early screening should be the national policy in the United States (see A push for universal screening).
Psychologists are also working to overcome the challenges of implementing screenings and diagnoses in diverse racial and socioeconomic environments. The role of socioeconomic status in autism outcomes has been underappreciated, Klin notes. The Mind the Gap project, a multisite study led by Connie Kasari, PhD, at the University of California, Los Angeles (UCLA), focuses on under-resourced and underserved populations, probing the barriers to autism diagnosis and services in these groups. Parents often feel isolated and uncertain of how to navigate the medical and service systems, says Melanie Pellecchia, PhD, a psychologist at the University of Pennsylvania who is involved in the research. Many are dealing with concurrent problems, like poverty and inadequate housing. These insights have informed a second project, called Building Better Bridges, which aims to match families with peer mentors, fellow parents who have been through the complicated process of getting their children help. The program is now part of a randomized trial.
Aging out
Perhaps the most glaring gap for people with autism is the evaporation of support when they reach adulthood. Though national numbers are hard to come by, regional studies suggest unemployment is high among adults with autism. Cognitive abilities are not protective: One small study by developmental psychologist Julie Taylor, PhD, of Vanderbilt University, found that young adults with autism and no intellectual disabilities were three times more likely than those with autism and an intellectual disability to have no regular daytime activities, likely because there simply aren’t many employment or day programs designed for people of average or above-average intelligence with autism (Journal of Autism and Developmental Disorders, Vol. 41, No. 5, 2011opens in new window). Many adults with autism live at home, and research by psychologist Laura Klinger, PhD, of the UNC School of Medicine, and colleagues has found that 54% of the caregivers of these adults report not being able to access enough services for help (Dudley, K.M., et al., Journal of Autism and Developmental Disorders, Vol. 49, No. 2, 2019opens in new window). Meanwhile, people with autism and comorbid mental health conditions can fall through the cracks. “If we have a person who is nonverbal, they could be depressed, but how would they tell us in words?” says Catherine Lord, PhD, a clinical psychologist at the David Geffen School of Medicine at UCLA. “We have to be able to address the different kinds of issues that are going to come up.”
To address these gaps, Klinger has spearheaded the creation of a program at North Carolina community colleges called the TEACCH School Transition to Employment and Postsecondary Education program, or T-STEP. This program, administered through a set of long-running outpatient clinics affiliated with UNC called TEACCH, aims to teach young adults with autism who have earned or are earning a high-school equivalency (GED) certificate the emotion regulation, executive function and professional/social skills they’ll need to succeed in further education and jobs. Students also practice these skills at a volunteer internship site and receive individual education career counseling. Results from a pilot study of 75 students in the program show improvements in executive function and employment readiness skills, Klinger says, and declines in depression symptoms. Klinger and her team have now secured funding from the National Institute on Disability, Independent Living, and Rehabilitation Research and from the Department of Defense to conduct research on T-STEP using comparison groups. This program isn’t the only college-based option for students with autism, but these resources are still fairly rare. At schools where they do exist, they often have limited space and sometimes cost additional tuition dollars.
Aging with autism is another area about which little is known. People with autism may have elevated susceptibility to age-related cognitive decline, according to research by Klinger and psychology doctoral student Patrick Powell at the Georgia Institute of Technology (Journal of Autism and Developmental Disorders, Vol. 47, No. 10, 2017opens in new window). It’s not yet clear whether that susceptibility is due to physiological processes related to autism, or whether comorbid mental health conditions and lack of meaningful activities contribute, Klinger says. Another of Klinger’s projects is to study older adults with autism. She and her colleagues are now recruiting study participants from the 1960s, 1970s and 1980s who were seen at TEACCH clinics. They plan to survey the participants about their needs as well as measure how symptoms and skills changed from when they were first seen as children into adulthood.
This type of work has barely begun; there is still an “absolute lack” of efficacy data on interventions for adults with autism, Klinger says, and a massive void where research on implementation of interventions should be. “Most of the literature that is there, including my own research, is documenting need,” she says. “It isn’t documenting the efficacy of interventions. For anybody interested in creating evidence-based interventions or studying the efficacy of current interventions for adults with autism, this is a wide-open field.”
