People who learn they are autistic when they are younger may have a heightened quality of life and sense of well-being in adulthood.  

That’s the finding of a new study, which also found that those who learned of their autism as adults reported more positive emotions (especially relief) about autism when first learning they were autistic. 

Findings suggest that telling a child that they are autistic at a younger age empowers them by providing access to support and a foundation for self-understanding that helps them thrive later in life. 

For the first time, researchers directly investigated whether learning if one is autistic at a younger age is associated with better adult outcomes.  Many autistic people – particularly females, ethnic/racial minorities and people with limited resources – are diagnosed years after the characteristics are first noticed.  In many cases, autistic people do not receive their diagnosis until adulthood.   

The study was carried out by a team of autistic and non-autistic students and academic researchers.  Seventy-eight autistic university students were surveyed, sharing how they found out they were autistic and how they felt about their diagnosis. Respondents also revealed how they felt about their lives and being autistic now. 

One of the co-authors, Dr Steven Kapp, Lecturer in Psychology at the University of Portsmouth, was diagnosed with and informed of his autism aged 13. He said: “Students who learned they were autistic when they were younger felt happier about their lives than people who were diagnosed at an older age. Our study shows that it is probably best to tell people they are autistic as soon as possible in a balanced, personal, and developmentally appropriate way. Learning one is autistic can be empowering because it helps people understand themselves and also helps them connect with other people like them.”

However, being given a diagnosis as an adult can often also be empowering.

Dr Kapp said: “Learning about autism at an older age is associated with more positive emotions about a diagnosis – especially relief.  This finding makes sense, although emotional reactions are often very complex and unique to each person – there has been a lot of emerging research showing that relief is a common response to an autism diagnosis in adulthood.”

The study suggests that parents should not wait for children to become adults to tell them they are autistic. No participants recommended doing so, although most highlighted factors to consider when informing a child of their autism, including developmental level, support needs, curiosity, and personality. Findings also suggest that parents should tell their children they are autistic in ways that help them understand and feel good about who they are.  One participant said: “I would tell my child that autism is a different way of thinking, that it can be challenging and beautiful and powerful and exhausting and impactful, that autistic people deserve to be themselves, to be proud of their identity, and have supports that help them meet their needs.” 

Bella Kofner, co-lead author (24), who was diagnosed with autism at the age of 3 and informed of her autism at the age of 10, said: “This is the first study, to our knowledge, to demonstrate that learning at a young age that one is autistic may have positive impacts on emotional health among autistic university students. Hopefully, this finding may begin to address concerns parents have about when to talk to their child about autism.  ‘When’ the conversation begins is particularly important. Our findings suggest that learning at a younger age that one is autistic can help autistic people develop self-understanding and access support, providing the foundations for well-being in adulthood.” 

The findings, published in the peer-reviewed journal Autism, suggest that many aspects of identity, besides age, may contribute to how people respond to learning they are autistic. For example, more exploratory findings suggested that women and non-binary people responded more positively to first learning they were autistic than men did. The authors hope that future research will examine autistic identity development in autistic people who have often been overlooked, such as non-speaking autistic people and autistic people who are multiply marginalized. 

Findings could help shape future treatments aimed at easing pain for kids with autism experiencing constipation, and stomach pain.

Child with stomach pain credit University of Missouri

Children with autism spectrum disorder tend to experience gastrointestinal issues, such as constipation and stomach pain, at a higher rate than their neurotypical peers. Some also experience other internalizing symptoms at the same time, including stress, anxiety, depression and social withdrawal. Until now, no studies have examined the causal relationship between gastrointestinal symptoms and internalizing symptoms.

A new study at the University of Missouri found a “bi-directional” relationship between gastrointestinal issues and internalized symptoms in children and adolescents with autism — meaning the symptoms seem to be impacting each other simultaneously. The findings could influence future precision medicine research aimed at developing personalized treatments to ease pain for individuals with autism experiencing gastrointestinal issues.

“Research has shown gastrointestinal issues are associated with an increased stress response as well as aggression and irritability in some children with autism,” said Brad Ferguson, an assistant research professor in the MU School of Health Professions, Thompson Center for Autism and Neurodevelopmental Disorders and Department of Radiology in the MU School of Medicine. “This likely happens because some kids with autism are unable to verbally communicate their gastrointestinal discomfort as well as how they feel in general, which can be extremely frustrating. The goal of our research is to find out what factors are associated with gastrointestinal problems in individuals with autism so we can design treatments to help these individuals feel better.”

In the study, Ferguson and his team analyzed health data from more than 620 patients with autism at the MU Thompson Center for Autism and Neurodevelopmental Disorders under the age of 18 who experience gastrointestinal issues. Then, the team examined the relationship between gastrointestinal issues and internalized symptoms, such as stress, anxiety, depression, and social withdrawal. Ferguson explained the findings provide more evidence on the importance of the “gut-brain axis,” or connection between the brain and the digestive tract, in gastrointestinal disorders in individuals with autism.

“Stress signals from the brain can alter the release of neurotransmitters like serotonin and norepinephrine in the gut which control gastrointestinal motility, or the movement of stool through the intestines. Stress also impacts the balance of bacteria living in the gut, called the microbiota, which can alter gastrointestinal functioning,” Ferguson said. “The gut then sends signals back to the brain, and that can, in turn, lead to feelings of anxiety, depression and social withdrawal. The cycle then repeats, so novel treatments addressing signals from both the brain and the gut may provide the most benefit for some kids with gastrointestinal disorders and autism.”

Ferguson said an interdisciplinary team of specialists is needed to help solve this complex problem and develop treatments going forward.

Ferguson collaborates with David Beversdorf, a neurologist at the MU Thompson Center for Autism and Neurodevelopmental Disorders, who also studies gastrointestinal problems in individuals with autism. In a recent study, Beversdorf, who also has appointments in the MU College of Arts and Science and MU School of Medicine, helped identify specific RNA biomarkers linked with gastrointestinal issues in children with autism.

“Interestingly, the study from Beversdorf and colleagues found relationships between microRNA that are related to anxiety behavior following prolonged stress as well as depression and gastrointestinal disturbance, providing some converging evidence with our behavioral findings,” Ferguson said.

Now, Ferguson and Beversdorf are working together to determine the effects of a stress-reducing medication on gastrointestinal issues in a clinical trial.

“I have a great relationship with Beversdorf and the MU Thompson Center Autism Research Core (ARC) that allows our team to quickly go from findings in the laboratory to clinical trials,” Ferguson said.

Ferguson explained that some treatments may work for some individuals with autism but not necessarily for others.

“Our team uses a biomarker-based approach to find what markers in the body are common in those who respond favorably to certain treatments,” Ferguson said. “Our goal is to eventually develop a quick test that tells us which treatment is likely to work for which subgroups of patients based on their unique biomarker signature, including markers of stress, composition of gut bacteria, genetics, co-occurring psychological disorders, or a combination thereof. This way, we can provide the right treatments to the right patients at the right time.”

A significant number of people who died by suicide were likely autistic, but undiagnosed, according to new research that highlights the urgent need for earlier diagnosis and tailored support for suicide prevention.

Suicide rates are unacceptably high in autistic people and suicide prevention has to be the number one goal to reduce the worrying increased mortality in autistic peopleSimon Baron-Cohen

A team of researchers, led by Dr Sarah Cassidy from the University of Nottingham and Professor Simon Baron-Cohen from the Autism Research Centre at the University of Cambridge, are the first to examine evidence of autism and autistic traits in those who died by suicide in England. They analysed Coroners’ inquest records of 372 people who died by suicide and also interviewed family members of those who died. The research is published today in the British Journal of Psychiatry.

The researchers found that 10% of those who died by suicide had evidence of elevated autistic traits, indicating likely undiagnosed autism. This is 11 times higher than the rate of autism in the UK. The research team worked with Coroners’ offices in two regions of England to identify the records.

The team first examined the coroners’ inquests for each death by suicide for signs of elevated autistic traits indicating possible undiagnosed autism, or a definite diagnosis of autism. Evidence of autism was then checked by an independent researcher to make sure that these decisions were reliable. The researchers then spoke to 29 of the families, to gather further evidence to corroborate the elevated autistic traits in those who died. After speaking with the families, the researchers found evidence of elevated autistic traits in more people who died by suicide (41%), which is 19 times higher than the rate of autism in the UK.

Previous research by the same group has shown that up to 66% of autistic adults have thought about taking their own life, and 35% have attempted suicide. Around 1% of people in the UK are autistic, yet up to 15% of people hospitalised after attempting suicide have a diagnosis of autism. Previous research has also found that both diagnosed autistic people and those with elevated autistic traits are more vulnerable to mental health problems, suicidal thoughts and behaviours. The new research goes beyond this by examining Coroner’s records related to people who have ended their own life.

Autism is a lifelong developmental condition diagnosed on the basis of difficulties in social and communication skills and in adapting to unexpected change, alongside heightened sensory sensitivity, unusually deep interests in specific topics, and a preference for predictability. There are many barriers to obtaining an autism diagnosis, including limited availability of diagnostic services, leading to long waiting lists. Even post-diagnosis, there are insufficient support services for autistic people.

Dr Sarah Cassidy commented: “Many adults in the UK find it very difficult to obtain an autism diagnosis and appropriate support post-diagnosis. Our study shows that undiagnosed autistic people could be at increased risk of dying by suicide.

“It is urgent that access to an autism diagnosis and appropriate support post diagnosis is improved. This is the top autism community priority for suicide prevention, and needs to be addressed immediately by commissioners of services and policy makers.”

Professor Simon Baron-Cohen added: “Even a single suicide is a terrible tragedy for the person and a traumatic loss for their families and friends. Suicide rates are unacceptably high in autistic people and suicide prevention has to be the number one goal to reduce the worrying increased mortality in autistic people.

“Autistic people on average die 20 years earlier than non-autistic people, and two big causes of this are suicide and epilepsy. We published the preliminary data on elevated suicide rates back in 2014 as a wake-up call to governments, and yet nothing has been done.”

Currently evidence of an autism diagnosis or elevated autistic traits are not usually included in Coroners’ inquests in England. This study highlights the need for Coroners to begin to systematically gather evidence of autism and autistic traits in inquests, to help prevent future deaths. There is also an urgent need to work with the autism community to co-design suicide prevention services.

Reference
Cassidy, S et al. Autism and autistic traits in those who died by suicide in England. BJPsych; 15 Feb 2022; DOI: 10.1192/bjp.2022.21

The criminal justice system (CJS) is failing autistic people, argue researchers at the Autism Research Centre, University of Cambridge, after a survey of lawyers found that an overwhelming majority of their clients were not provided with adequate support or adjustments.

Our research shows quite clearly that autistic adults are not receiving fair treatment within the criminal justice system. Without reasonable adjustments or support, this could place them at a significant disadvantageRachel Slavny-Cross

This comes on the back of an Equality and Human Rights Commission report in June 2020 that warned that the CJS is failing those with learning disabilities and autistic people. However, there is almost no research investigating how autistic defendants are being treated within the CJS.

The team set out to fill this gap by conducting a survey of 93 defence lawyers about autistic people they have represented in the last five years to find out about their defendants’ experiences of navigating the CJS. In their study, published today in Autism Research, the researchers found the CJS is failing autistic people.

The study found that only half of autistic people (52%) were considered by the police to be vulnerable adults, even though the law recognises all autistic people as vulnerable.

Over a third (35%) of autistic defendants were not given an ‘appropriate adult’ during police investigations, even though their diagnosis was known to police, and despite all autistic people being entitled under the law to have an appropriate adult present when being interviewed by the police. A further 18% did not have an ‘appropriate adult’ present because their diagnosis was not known to the police.

Appropriate adults act to safeguard the interests and rights of vulnerable defendants by ensuring that they are treated in a just manner and are able to participate effectively during an investigation.

Only a quarter (25%) of autistic people were given ‘reasonable adjustments’, with 38% not given any even though lawyers stated that this would have been beneficial. This is despite all autistic people being entitled to reasonable adjustments under the law. A further 33% did not receive any adjustments because their autism diagnosis was unknown at the time. Of the autistic people whose case went to trial, more than one in five (22%) were not given any reasonable adjustments even though their lawyers stated that this would have been helpful.

Reasonable adjustments, such as using visual aids to assist with communication and allowing extra time to process information, can be made by the police to assist the detainee.

Dr Rachel Slavny-Cross, who led the study, said: “Our research shows quite clearly that autistic adults are not receiving fair treatment within the criminal justice system. Without reasonable adjustments or support, this could place them at a significant disadvantage.”

In just under half of the cases that included a trial by jury (47%), the jury was not informed that the defendant was autistic. 59% of prosecution barristers and 46% of judges or magistrates said or did something during the trial that made them concerned that they did not have an adequate understanding of autism.

Dr Carrie Allison, a member of the research team, said: “It’s vital that jurors are provided with information about a defendant’s autism and its implications, otherwise they are likely to misinterpret atypical behaviour exhibited by the defendant in court. Similarly, judges may fail to take into consideration mitigating factors that might otherwise influence sentencing.”

The study found that lawyers were more likely to be concerned that their autistic clients would engage in self-harm behaviours, compared with their non-autistic clients, and were more likely to report that their autistic clients experienced ‘meltdowns’ as a result of their involvement in the CJS.

Dr Sarah Griffiths. another member of the research team, said: “Autistic adults are particularly vulnerable to mental health problems, such as stress and heightened anxiety, with many autistic people experiencing meltdown and shutdown as a result. This is likely to have shaped their interactions with the criminal justice system and their ability to cope with the stress of being subject to criminal proceedings.”

The study also found that those working within the CJS may be unaware that an individual is autistic, or of the implications of an autism diagnosis. They found that many autistic people do not disclose their diagnosis at the point of police contact or are themselves unaware they are autistic. However, as the study shows, even autistic defendants who disclose their diagnosis are failing to receive reasonable adjustments.

However, a positive finding was that, in cases where their client was found to have committed a crime, 60% of judges saw the defendant’s autism as a mitigating factor, and in these cases the majority of autistic people were given a suspended or reduced sentence.

Professor Sir Simon Baron-Cohen, Director of the Autism Research Centre at Cambridge and a member of the research team, added: “There’s an urgent need across the criminal justice system for increased awareness about autism. The police, lawyers, judges and jurors should be given mandatory training to be aware of how autism affects an individual’s behaviour, so that autistic defendants are treated fairly within the criminal justice system.”

Funding for this project was provided by the Autism Centre of Excellence.

Reference
Slavny-Cross, R et al. Autism and the criminal justice system: An analysis of 93 cases. Autism Research; 15 March 2022; DOI: 10.1002/aur.2690

Baby wearing an ERP cap at UC San Diego’s Developmental Cognitive and Social Neuroscience Lab. CREDIT Photo courtesy of Leslie Carver, UC San Diego.

The baby brothers and sisters of autistic children do not seek emotional cues from adults, or respond to them, as often as other toddlers do, suggests new research from the University of California, San Diego.

The study is the first to investigate “social referencing” behavior in children from families at high risk for autism and also points to profound differences in related measurements of brain activity, said lead researcher Leslie Carver.

Carver, an assistant professor of psychology and director of the Developmental Cognitive and Social Neuroscience Lab at UC San Diego, is presenting the findings at the 2007 International Meeting for Autism Research in Seattle, Wash.

“Our results,” Carver said, “support two important ideas about autism: That those behaviors that are diagnostic of the disorder fall on one end of a broad behavioral spectrum and also that there is a strong genetic component to autism, evidenced by the behavioral resemblances in close family members.”

The heritability of autism has been estimated as high as 90 percent, Carver noted, and siblings are at increased risk of receiving the diagnosis themselves: About 8 percent will go on to develop the disorder, as compared to about .5 percent of the general population.

Social referencing involves checking in with the emotional displays of others (especially those we expect to be knowledgeable about a novel situation) and regulating our own emotions and behavior in response. It is something most of us do and do without thinking. On spying a new caterpillar in the park, a young child might turn to find a parent’s smile before toddling over to take a closer look. And an adult, startled by a sudden jolt on an airborne plane, might seek out the expression of a flight attendant to determine whether that was just a nasty bit of turbulence or something really worth worrying about.

Typically, social referencing begins to emerge toward the end of the first year of life. But in individuals with autism, this behavior, along with several other aspects of social cognition, is characteristically impaired.

The current research is in line with earlier work demonstrating that first-degree relatives of autistic children often display milder, or subclinical, features of the disorder.

Carver and her colleagues, UC San Diego psychology professor Karen Dobkins, doctoral student Lauren Cornew and post-doctoral researcher Joseph McCleery, tested 18 high-risk toddlers (18-month-old siblings of children diagnosed with autism) and compared their results to those of 28 age-matched counterparts who had no family history of the disorder.

In the behavioral portion of the experiments, the children were presented with three novel and ambiguous toys – toys that could be taken as either good or bad, scary or fun, or neither – and their caregivers were trained to react with facial expressions and vocal signals that were positive, negative and neutral. The interactions were videotaped and later analyzed.

After the behavioral testing, the children were shown pictures of the same toys and their brain responses were measured – specifically by tracking ERP (event-related potential) activity, or the electrical activity of groups of neurons firing in synchrony in response to a specific event.

The high-risk toddlers differed in almost every element of social referencing, the researchers found: Though they sought emotional information from adults as quickly as the low-risk toddlers, they did so about 30 percent less frequently, and they did not respond to the adult’s information in ways that were consistent with the adult’s reaction.

Brain-activity measurements told a similar story: Where low-risk children showed the expected magnitude of neural response to emotionally tagged objects, the high-risk ones did not. And where the brain activity of low-risk children correlated with their behavior regulation, this pattern was not observed in the high-risk.

“It’s as if the high-risk children do not have as clear an understanding of the meaning of an emotion and don’t connect it to the object in the same way,” Carver said.

Data from children who would later go on to a diagnosis of autism are not included in the study results.