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