In this milestone year of 2024, the Autism Research Institute commemorates the 60th anniversary of Dr. Bernard Rimland’s groundbreaking work, Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior, published in 1964. While I have often referenced this seminal book in my editorials throughout the years, I believe it is important to take a moment to acknowledge not only the significance of the book itself but also its enduring impact on the broader landscape of autism research, understanding, and support.

Dr. Rimland’s introduction to autism

When their son Mark was young, Bernard Rimland and his wife, Gloria, felt unsettled by the pediatrician’s reassurance that he would outgrow the concerning behaviors he exhibited during infancy and early childhood. Mark displayed minimal eye contact, frequent tantrums, and repetitive behaviors such as rocking and finger flicking, and he seemed uninterested in interacting with his parents. While the pediatrician initially dismissed their concerns as typical parental worries, he advised them to monitor and document Mark’s behaviors. Upon reviewing their observations, the pediatrician conceded that Mark’s behavior was indeed unusual.

At this point, Gloria recalled encountering a description of an atypical child in a college textbook. After sifting through boxes, they located and read through the book, leading them to the realization that Mark exhibited characteristics consistent with autism.

Having just received a Ph.D. in experimental psychology, Rimland delved into research to find ways to assist his son. To his dismay, he discovered that the prevailing narrative within the professional community blamed autism on parents—particularly mothers, using the derogatory term “refrigerator mothers”—and alleged parental neglect without substantiating evidence.

Gloria once recounted a story to me about having dinner with a doctor and his wife, at which the atmosphere was more social than work-related. Toward the end of the evening, the doctor’s wife made a surprising remark to Gloria: “I had expected you to be very distant and somewhat rude, but you’re not.”

Similarly, many families with autistic children faced misunderstandings and criticisms from their social circles as well as from professionals. In 2003, PBS aired a one-hour documentary titled Refrigerator Mothers, featuring mothers sharing their experiences of mistreatment and discrimination within their communities.

The genesis of Infantile Autism

Recognizing the lack of evidence for the parent-blaming perspective, Rimland countered by writing an article positing that the behaviors observed in children with autism indicated an underlying biological impairment, likely influenced by genetics, environmental factors, and neurology. Rimland had so much to say about the matter that the article expanded into a book over a five-year period.

The book garnered immediate international acclaim for Rimland’s argument. Consequently, he was offered a one-year tenure at a think tank affiliated with Stanford University, during which he generated many ideas to address the challenges of autism. Among these was the establishment of a national parent network, facilitating the sharing of experiences among families, particularly regarding effective strategies for supporting their children. Rimland, alongside Ruth Sullivan, subsequently founded the National Society for Autistic Children, later renamed the Autism Society of America.

Parents’ reactions to the book

Parents around the world rejoiced as the book gained recognition among professionals. They started reaching out to Rimland, who, despite his full-time job with the U.S. Navy, dedicated most of his evenings and weekends to responding to their inquiries and offering guidance. Over nearly five decades, he tirelessly communicated with parents through calls and letters while also advocating for researchers to explore ways to effectively support and care for individuals with autism.

Before Rimland’s book, parents were often advised to seek marriage counseling while their children were enrolled in play therapy. However, once Rimland’s argument gained traction, the healthcare community underwent a significant shift in approach. This led to the adoption of more aggressive measures, including the use of powerful medications such as Haldol and Mellaril, behavioral interventions (now recognized as Applied Behavior Analysis or ABA), and sensory integration therapy.

The relevance of Rimland’s findings

Rimland’s initial insights into autism remain relevant today. While some cases stem primarily from genetics, most clearly involve epigenetic factors. Additionally, many studies have reported various forms of co-occurring neurological impairment in individuals on the spectrum. In the 1990s, roughly 30 years after the publication of his book, Rimland underscored the link between autism, immune dysregulation, and gastrointestinal disease, a correlation that has since been validated. While numerous research studies over the last 60 years have examined various aspects of autism, Rimland pinpointed those closely associated with the fundamental foundations of autism.

During Rimland’s last days, I spent much of my time visiting with him. He took great pleasure in reminiscing about writing his book and engaging in discussions about the book with parents and professionals. Since the ARI office had only a couple of copies of his books, I searched eBay for additional copies. In my searches, I came across a U.K. edition with a book cover, which was not included in the U.S. publication. I ordered it and presented it to Rimland as a gift. His reaction was one of speechless astonishment, as he had been unaware of the existence of the book cover. For those interested, you can see an image of the book cover along with a photo of Rimland taken around the time of the book’s publication at www.Rimland1964Bookcover.com.

This editorial originally appeared in Autism Research Review International, Vol. 38, No. 1, 2024

Rates of “school distress”—or significant emotional distress related to attending school—are significantly elevated in children with autism spectrum disorders (ASD), according to a new study from the United Kingdom.

Sophie Connolly and colleagues compared questionnaire responses from 947 parents of children and young people who experienced school distress to responses from 149 parents of an age-matched control group. They report, “Notably, 92.1 percent of children and young people currently experiencing school distress were described as neurodivergent and 83.4 percent as autistic.” In comparison, only 16.8 percent of individuals in the “no school distress” group were autistic. Moreover, autistic individuals who displayed school distress exhibited distress at a significantly earlier age than nonautistic children, and this distress was more enduring.

The researchers add that sensory processing difficulties and attention-deficit/ hyperactivity disorder (ADHD) were also linked to higher rates of school distress. In addition, they say that “clinically significant anxiety symptomology and elevated demand avoidance were also pervasive.”

They also note, “The majority of children and young people experiencing school distress either currently or previously attended a mainstream provision… posing the question of whether mainstream settings are suitable for all children and young people, and if not, which provisions may be more appropriate.”

The researchers note that their study included individuals currently undergoing or awaiting assessments for ASD as well as those with official diagnoses. They say that because research typically shows no significant difference in ASD characteristics between adults with a confirmed ASD diagnosis and those awaiting diagnosis, and because waiting times for diagnosis are lengthy in the United Kingdom, “broader inclusion criteria are likely to provide a more accurate estimation of the prevalence of autism among children and young people with school distress.” However, they note that their study population was of limited diversity, which may influence their findings.

The researchers conclude, “Further research, ideally co-produced with autistic and otherwise neurodivergent individuals, is needed to determine best practices in education, and to ensure appropriate understanding of how neurodivergent pupils best learn.”

This article originally appeared in Autism Research Review International, Vol. 37, No. 4, 2023

Employees with autism spectrum disorders (ASD) may contribute to businesses in a unique way because they are less likely than neurotypical individuals to exhibit the “bystander” effect, according to a new study.

The bystander effect refers to the fact that people are more hesitant to identify problems and intervene to solve them if there are other people present. The greater the number of other people, the less likely it is that one individual will step forward.

Lorne Hartman and colleagues asked 33 employed adults with ASD and 34 controls to complete an online survey. Participants answered questions designed to determine how likely they would be to speak out if they saw inefficient or dysfunctional processes in their company, and whether their decision would be affected by the number of other people present.

Hartman says the study showed that “to the extent that they would act if they saw something wrong, employees with autism were much more likely to intervene, regardless of the number of people present.” He adds that “in situations where they would not intervene, they were more likely to identify the influence of others as the reason, whereas neurotypical employees were more reluctant to acknowledge this.”

Hartman and colleagues conclude that “autistic employees may contribute to improvements in organizational performance because they are more likely to identify and report inefficient processes and dysfunctional practices when they witness them.”

Hartman, whose primary area of research involves unethical behavior in corporations, says that in all of the cases he explored, “there were hundreds, maybe thousands of people who may not have actually been involved in the wrongdoing, but they should have been aware that it was going on. So having people around who are willing to blow the whistle, so to speak, is very important for organizations.”

This article originally appeared in Autism Research Review International, Vol. 37, No. 4, 2023

A new study suggests that there are significant differences in how male and female children with high autistic traits process visual information.

Andrew Silva and colleagues asked 381 nine-year-old children who exhibited a range of autistic traits on the Autism Spectrum Quotient (AQ) to perform tests involving dorsal or ventral processing of visual input to the brain. The dorsal stream is involved in motion and visuo-motor processing, while the ventral stream is involved in object recognition.

The researchers found that both male and female children with high autistic traits exhibited difficulties on tests of dorsal stream processing. “These associations were observed in a large group of children with a range of AQ scores,” they say, “demonstrating a range of visual function across the full spectrum of autistic traits.” However, only males tended to do worse on tests of ventral stream processing. Silva comments, “The part of the visual system that handles object recognition is also connected to face recognition, recognizing nonverbal communication and facial expressions. The fact that this system was not impacted in our sample of females with high autistic traits is consistent with the idea that this system allows females to better navigate social situations and mask neurodivergence.” However, he says, it is not clear whether this visual processing difference is innate or stems from differences in how male and female children are raised.

He adds, “In the end, these results highlight that human neurodiversity is not a singular concept—different sexes, and indeed different people, express autistic traits in their own unique way.”

This article originally appeared in Autism Research Review International, Vol. 37, No. 4, 2023

The prevalence of autism spectrum disorders (ASD) among adults in the United States is rising rapidly, according to a new study.

Eric Rubenstein and colleagues analyzed a random sample of Medicaid records from 2011 through 2019, identifying individuals 18 years of age or older with a diagnosis of autism. They report, “In this cohort study of 403,028 Medicaid enrollees with autism claims over nine years of claims data, autism prevalence increased from 4.2 per 1,000 enrollees in 2011 to 9.5 per 1,000 enrollees in 2019. The largest increase was observed in the 25- to 34-year age group and the smallest increase in the 55- to 64-year age group.” The percentage of Medicaid enrollees with ASD who also had intellectual disability (ID) dropped from 62 percent in 2011 to 46 percent in 2019, potentially indicating a greater awareness of autism in individuals without ID.

The researchers conclude, “These findings suggest that despite difficulties in identifying autism in adults, there is a considerable and growing population of autistic adults among Medicaid enrollees, which may have future implications for the Medicaid system and understanding the needs of the autistic population.”

This article originally appeared in Autism Research Review International, Vol. 37, No. 4, 2023

Adults with autism spectrum disorders (ASD) tend to be more generous to strangers than their neurotypical peers are, according to new research.

In the study, Paul Forbes and colleagues explored differences in “social discounting” between individuals with and without ASD. Social discounting refers to the tendency for people to be less generous to people who are distant from themselves compared to those closer to them. In addition, the researchers explored the effects of framing a decision about generosity as a gain or a loss.

The researchers recruited 53 adults between 20 and 47 years of age to participate in their study. Of the group, 28 had ASD and 25 were neurotypical. The researchers asked the participants to imagine distributing money to other people at various social distances from them.
In the “gain” scenario, participants were told that the other person initially had no money. They were asked to choose between splitting a sum of money evenly between themselves and the other person, with each person getting 75 euros (the “generous” option), or giving nothing to the other person and keeping a larger amount for themselves (the “selfish” option). In the “loss” scenario, they were told that the other person already had 75 euros. Participants could choose to keep 75 euros for themselves (the generous option), or to have the other person lose 75 euros and thereby gain more money themselves (the selfish option). The researchers added incentives by telling participants that two of them would be randomly selected at the end of the experiment, and for each of these two, one choice would result in a real-life payout.
The researchers report, “We show that compared to a neurotypical group, autistic adults were more generous to other people, especially to those who were more socially distant.” They also were less influenced by the framing of the task as a gain or a loss for themselves.
In addition, the researchers say that in the group with ASD, “Greater self-reported difficulties in social interaction and communication as well as attention switching were associated with this increased generosity, suggesting that both social and non-social aspects of autism contributed to these effects.”
They conclude, “Our results support the view of ‘enhanced rationality’ in autism as participants’ prosocial decisions were less influenced by potential biasing information, such as the closeness of the recipient or how choices were framed. Therefore, the differences seen in autism, as well as posing certain challenges, can also have prosocial consequences.”

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“Autistic adults show enhanced generosity to socially distant others,” Paul A. G. Forbes, Irini Chaliani, Leonhard Schilbach, and Tobias Kalenscher, Autism, August 22, 2023 (online). Address: Paul Forbes, Institute of Experimental Psychology, Heinrich Heine University Düsseldorf, Germany, paul.forbes@hhu.de.

This article originally appeared in Autism Research Review International, Vol. 37, No. 4, 2023

Rates of “school distress”—or significant emotional distress related to attending school—are significantly elevated in children with autism spectrum disorders (ASD), according to a new study from the United Kingdom.

Sophie Connolly and colleagues compared questionnaire responses from 947 parents of children and young people who experienced school distress to responses from 149 parents of an age-matched control group. They report, “Notably, 92.1 percent of children and young people currently experiencing school distress were described as neurodivergent and 83.4 percent as autistic.” In comparison, only 16.8 percent of individuals in the “no school distress” group were autistic. Moreover, autistic individuals who displayed school distress exhibited distress at a significantly earlier age than nonautistic children, and this distress was more enduring.

The researchers add that sensory processing difficulties and attention-deficit/ hyperactivity disorder (ADHD) were also linked to higher rates of school distress. In addition, they say that “clinically significant anxiety symptomology and elevated demand avoidance were also pervasive.” 

They also note, “The majority of children and young people experiencing school distress either currently or previously attended a mainstream provision… posing the question of whether mainstream settings are suitable for all children and young people, and if not, which provisions may be more appropriate.” 

The researchers note that their study included individuals currently undergoing or awaiting assessments for ASD as well as those with official diagnoses. They say that because research typically shows no significant difference in ASD characteristics between adults with a confirmed ASD diagnosis and those awaiting diagnosis, and because waiting times for diagnosis are lengthy in the United Kingdom, “broader inclusion criteria are likely to provide a more accurate estimation of the prevalence of autism among children and young people with school distress.” However, they note that their study population was of limited diversity, which may influence their findings. 

The researchers conclude, “Further research, ideally co-produced with autistic and otherwise neurodivergent individuals, is needed to determine best practices in education, and to ensure appropriate understanding of how neurodivergent pupils best learn.”

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“School distress and the school attendance crisis: a story dominated by neurodivergence and unmet need,” Sophie E. Connolly, Hannah L. Constable, and Sinéad L. Mullally, Frontiers in Psychiatry, September 22, 2023 (free online). Address: Sinéad L. Mullally, sinead.mullally@ newcastle.ac.uk.

This article originally appeared in Autism Research Review International, Vol. 37, No. 4, 2023

The wait for an autism diagnosis and subsequent intervention can be highly stressful for many families, especially when access to needed health and educational services also hinges on the approval of insurance and government agencies.

In a media release this year, the U.K.’s National Autistic Society announced that more than 150,000 children were awaiting assessment (1). Waiting lists are also relatively high in the United States (2). This can be attributed to factors such as a lack of healthcare professionals specializing in autism, challenges brought on by the COVID pandemic, and escalating rates of autism diagnosis (3). It may also be due to primary care physicians’ lack of knowledge or resources pertaining to autism.

Critical need for early action

The benefits of early intervention are profound and can greatly influence a child’s prognosis (4). A recent study, reported in the ARRI, indicated that children who received early intervention beginning at 18 months displayed enhanced communication abilities compared to those who started at 27 months (5). The impact of these critical early months cannot be overstated.

Parents taking charge

Aware of the pressing need, many parents choose to take charge of the initial assessment and begin therapy while waiting for professional guidance and support. For those navigating the wait, several valuable resources are available.

Screening for autism: Several reliable autism screening tools are available online, such as the Modified Checklist for Autism in Toddlers (MCHAT) on the Autism Speaks website (7), and ASDetect (8). These screening assessments can be useful in guiding and supporting parents and caregivers who seek professional guidance but should not be seen as a diagnosis of autism.

Intervention: There are numerous interventions available for autistic individuals, including various forms of Applied Behavioral Analysis (ABA), occupational therapy techniques, communication strategies, and more. Based on my 45 years of experience in the autism field, the common success factor across interventions is brain engagement as opposed to passive activities such as TV or repetitive computer games (9).

Early intervention and adapted ABA are proactive, parent-driven interventions that are especially useful for parents looking for immediate help (10, 11). The early phase of UCLA’s Young Autism Clinic stressed community engagement in providing basic ABA exercises and included relatives, friends, neighbors, siblings, and even acquaintances from church. Comprehensive teaching guides provide extensive instructions (12-14) and are available for online purchase at Amazon, eBay, and other booksellers. Having occasional expert consultants can also yield very positive results.

Approaches focusing specifically on language can be beneficial as well. For instance, one study that gained widespread attention from the autism community evaluated an intervention known as the “British Autism Study of Infant Siblings’ Video Interaction for Promoting Positive Parenting” or iBASIS-VIPPP. This technique focuses on helping parents understand their infant’s distinct communication signals and adjust their reactions in response to these signals.

The study involved 54 infants, ranging in age from nine to 14 months, who had siblings with autism and were therefore at high risk for developing autism themselves (15). Roughly half of these infants underwent 12 sessions of iBASIS-VIPPP, while the remainder did not receive any intervention. When evaluated at three years of age, the children in the intervention group displayed enhanced social communication abilities and a stronger sense of attachment security compared to those in the control group.

Another study focusing on the iBASIS-VIPPP approach was conducted in Australia (16). It included 50 infants between nine and 14 months of age, all of whom showed early signs of autism. Over a five-month period, these infants participated in 10 iBASIS-VIPPP sessions. Afterward, they were less likely to be diagnosed with autism by three years of age compared to 44 infants who received “usual care” in the control group.

Techniques providing vestibular stimulation, such as a platform swing, may also be beneficial (17, 18). Theoretically, these activities may activate parts of the brain such as the posterior cerebellum, linked to cognitive functions including language processing (19). It is important to consult with an occupational therapist for proper guidance, especially if your child has seizures.

To promote social interaction, I often encourage parents to facilitate connections with children in their neighborhood (20). Typically, peers slightly older or younger are more receptive. Incentives, even if nominal, can nurture friendships.

In an ideal world, no child should face delays in receiving essential services. However, financial constraints and staffing shortages pose a challenge, and a remedy appears elusive at this point in time. If you are one of the many parents waiting for a diagnosis and professional intervention, I hope the approaches I have discussed here will help you turn frustrating wait time into valuable teaching time.

Stephen M. Edelson, Ph.D.
Executive Director, Autism Research Institute

References are available at www.ARRIReferences.org

This editorial originally appeared in Autism Research Review International, Vol. 37, No. 4, 2023

A large-scale study from researchers in Sweden and Poland indicates that older adults with autism spectrum disorders (ASD) are at significantly higher risk than their non-autistic peers for a range of injuries and medical conditions.

Shengxin Liu and colleagues used two national registries in Sweden to study data on autistic and non-autistic individuals who were 45 years of age or older, excluding autistic individuals with chromosomal abnormalities. In all, their sample included more than 4 million adults, of whom 5,291 had a diagnosis of autism.

The researchers found that individuals with ASD had a higher risk of four of the five injuries they studied. Self-harm accounted for the greatest risk increase, followed by poisoning, falls, and other physical injuries.

Liu comments, “The risk of self-harm was worryingly high, a full seven times higher than in non-autistic people. Reasons behind this remain largely unknown. One possible contributing factor could be mental health conditions that commonly co-occur with autism, such as anxiety and depression.”

The researchers also found that individuals with ASD had an increased risk for 15 of the 39 physical conditions they studied. For example, they had three times the risk for anemia and glucose dysregulation and nearly double the risk for heart failure, type 2 diabetes, and chronic obstructive pulmonary disease (COPD).

The researchers say that with some exceptions, the increased risks for individuals with ASD occurred equally in individuals with and without intellectual disability, and across both sexes. They stress that more investigation is needed to determine the causes for these increased risks. One possible contributing factor, they say, is that many of these individuals have a history of long-term psychotropic drug use, which can affect physical health.

They conclude, “Our findings highlight the urgent need to understand the underlying reasons for these health burdens, design targeted screening and intervention programs, and promote older care to enhance quality of life for older autistic people.”

This article originally appeared in Autism Research Review International, Vol. 37, No. 3, 2023