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A new study led by UCL researchers confirms that autistic people experience a reduced life expectancy, however the number of years of life lost may not be as high as previously claimed.

The research, published in The Lancet Regional Health – Europe, is the first to estimate the life expectancy and years of life lost by autistic people living in the UK.

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The team used anonymised data from GP practices throughout the UK to study people who received an autism diagnosis between 1989 to 2019. They studied 17,130 people diagnosed as autistic without a learning disability and 6,450 participants diagnosed as autistic with a learning disability. They then compared these groups with people of the same age and sex, who had not been diagnosed as autistic.

The researchers found that autistic men without a learning disability had an average estimated life expectancy of 74.6 years, and autistic women without a learning disability, around 76.8 years. 

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Meanwhile, the estimated life expectancy for people diagnosed with autism and learning disability was around 71.7 years for men and 69.6 years for women.

These figures compare to the usual life expectancy of around 80 years for men and around 83 years for women living in the UK.

The findings provide the first evidence that diagnosed autistic people were more likely to die prematurely in the UK across the time period studied, indicating an urgent need to address inequalities that disproportionately affect autistic people.

However, the new estimates also suggest that the widely reported statistic that autistic people live 16 years less on average* is likely to be incorrect.

Lead investigator of the study, Professor Josh Stott (UCL Psychology & Language Sciences), said: “Autism itself does not, to our knowledge, directly reduce life expectancy, but we know that autistic people experience health inequalities, meaning that they often don’t get the support and help that they need when they need it. We wanted to explore whether this impacted the average life expectancy for diagnosed autistic people living in the UK.

“Our findings show that some autistic people were dying prematurely, which impacted the overall life expectancy. However, we know that when they have the right support, many autistic people live long, healthy and happy lives. Although our findings show important inequalities, we were concerned about frightening statistics that are often quoted, and it is important to provide more realistic information.

“We do need to find out why some autistic people are dying prematurely so that we can identify ways to prevent this from happening.”

Autistic people have differences in their social communication and social interaction, alongside restricted and repetitive patterns of behaviours, interests and activities.

Many autistic people require adjustments to be made to ensure equal access to healthcare, employment, and local authority support.

Some autistic people also have learning disabilities, and can find it hard to explain to others when they are experiencing pain or discomfort. This can mean that health problems go undetected.

There are numerous reports of social exclusion, difficulties accessing support, and inappropriate care being given, as described in Baroness Hollins’ report that was published earlier in November**.

Joint-lead author, Dr Elizabeth O’Nions (UCL Psychology & Language Sciences), said: “Autistic people are rightly and increasingly pushing for recognition that autism reflects natural and expected variation in how brains function, and that society must make space for all.

“This means that services must be inclusive and accommodating of those who have particular support needs by adapting how they operate.

“We believe that the findings of this study reflect inequalities that disproportionately affect autistic people.”

The researchers have previously published a study, which found that the true number of autistic people in England may be more than double the number often cited in national health policy documents***.

Consequently, they acknowledge that the new research may over-estimate the reduction in life expectancy experienced by autistic people on average.

Professor Stott said: “Very few autistic adults have been diagnosed, meaning that this study only focuses on a fraction of the total autistic population.

“Those who are diagnosed may be those with greater support needs and more co-occurring health conditions than autistic people on average.

“We think this is particularly the case for women diagnosed with autism and learning disability – the larger reduction in life expectancy may reflect a disproportionate underdiagnosis of autism and/or learning disability in women.

“It’s likely that not all autistic people experience a reduced life expectancy – indeed, some autistic people may be better at sticking to healthy routines than average, potentially increasing their life expectancy.”

Dr Judith Brown, Head of Evidence and Research at the National Autistic Society, said: “This is very important research led by University College London and we are grateful to have been able to contribute.

“While the results of this study suggest a smaller difference than previously understood between the life expectancy of autistic and non-autistic people, they are still significant. These findings demonstrate that autistic people continue to face unacceptable inequalities through a lack of understanding, barriers to vital services and inadequate care, which lead to poorer mental and physical health outcomes.

“Without investment, improved understanding, inclusion and the correct level of support and care, autistic people will continue to see reduced life expectancy, with the most at-risk group in this study being autistic women with learning disabilities. This research should be a wake-up call for Government, the NHS, healthcare professionals and society as a whole that we must tackle the health inequality autistic people face.”

The research was funded by the Dunhill Medical Trust, Medical Research Council, National Institute for Health and Care Research, and the Royal College of Psychiatrists.

Links

*https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/lifeexpectancies/qmis/nationallifetablesqmi

**https://www.gov.uk/government/publications/independent-care-education-and-treatment-reviews-final-report-2023/baroness-hollins-final-report-my-heart-breaks-solitary-confinement-in-hospital-has-no-therapeutic-benefit-for-people-with-a-learning-disability-an

*** https://www.ucl.ac.uk/news/2023/jun/number-autistic-people-england-may-be-twice-high-previously-thought

• Research in The Lancet Regional Health – Europe
• Professor Joshua Stott’s academic profile
• Elizabeth O’Nion’s academic profile
• UCL Psychology & Language Sciences
• UCL Brain Sciences

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• Credit: NADOFOTOS on iStock

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University of Virginia professor of psychology Vikram Jaswal CREDIT Sanjay Suchak

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About one-third of autistic people are unable to communicate using speech, and most are never provided an effective alternative a new study from scientists at the University of Virginia suggests that many of these individuals are literate, raising the possibility that they could learn to express themselves through writing.  

The study reports that five times more nonspeaking autistic teenagers and adults demonstrated knowledge of written language conventions than would be expected from previous estimates of their abilities. The finding has important implications for the millions of autistic people around the world who have little or no speech and who are often assumed to be incapable of acquiring literacy.  

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“If we assume that someone who can’t speak doesn’t understand, it limits the doors we open for them – we may not even try to figure out what they understand,” said Vikram Jaswal, Professor of Psychology at the University of Virginia and the lead author of the study. “Our study shows that nonspeaking autistic people’s capacity for language, learning, and literacy has been seriously underestimated.”  

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The investigators addressed a fundamental question about literacy: whether or not nonspeaking autistic people react to letters, words and sentences in the same way as literate, non-autistic individuals. Jaswal’s team developed a method similar to the arcade game Whac-a-Mole which required participants to tap letters displayed on a tablet as soon as those letters lit up. In some instances, the letters lit up in sequences that spelt out sentences that participants had earlier heard spoken aloud, and in other instances, the letters lit up in meaningless sequences. The research team, which included Ph.D. candidate Kayden Stockwell and recent graduate Andrew Lampi, assumed that a literate individual – who knows how to spell and can convert speech into its written form – can predict the next letter in a sentence they have heard spoken aloud, even before seeing that letter light up. Consequently, they could be expected to respond faster to sentences than to meaningless sequences. Jaswal’s team found that over half of the sample group of 31 nonspeaking autistic participants responded in the same way a literate individual would.  

According to Jaswal, the results are striking because they show that even though most participants in the study had not received formal instruction in literacy, many had developed an understanding of how written language works.  

“Society has traditionally assumed that people who can’t speak are unable to understand language or to learn to read or write,” Jaswal said. “But our findings suggest that many nonspeaking autistic people have foundational literacy skills. With appropriate instruction and support, it might be possible to harness these skills to provide access to written forms of communication as an alternative to speech. Learning to express themselves through writing would open up educational, employment and social opportunities that nonspeaking autistic people have historically not been given access to.”  

“This is cutting-edge research with enormous potential for impact,” said Christa Acampora, dean of the College and Graduate School of Arts & Sciences. “We are truly fortunate to have professor Jaswal and outstanding graduate students like Kayden Stockwell and Andrew Lampi in the College’s research community. Together, they’re asking important questions, and their discovery will have life-changing consequences for many.”  

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Supported by a $2 million R01 grant from the National Institutes of Health, the Auerbach Lab at the Beckman Institute for Advanced Science and Technology will examine how different genes associated with autism spectrum disorders may similarly impact our brain’s neurons, resulting in heightened sensitivity to sounds.

Autism spectrum disorders are genetically complex, and hundreds of genes are implicated in their development. As a result, some may conclude that autism is a collection of disconnected disorders with comparable symptoms. However, much like how roads converge as they approach a destination, at some level of brain function there may be bottlenecks: points at which different genes lead to the same effects within the brain and ultimately result in similar symptoms.

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“You have this really big constellation of clinical symptoms — of phenotypes — on one side, and tons of genes interacting on the other side,” said lead investigator Benjamin Auerbach, an assistant professor of molecular and integrative physiology at the University of Illinois Urbana-Champaign.

“The question is: How do we get from point A to point B? In particular, how many different routes are there to possibly take?”

In previous research, Auerbach found that the two most common genetic mutations associated with ASD have opposite effects at the cellular level despite resulting in similar symptoms. The grant-funded project will explore whether these similarities may instead be due to a shared mechanism at the level of neural circuits.

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Auerbach and his team will focus on the auditory system, as sensory hypersensitivities are common in ASD and can strongly affect individuals’ quality of life.

Someone who experiences auditory hypersensitivity has difficulty processing sound information. This is especially true in settings like shopping malls, schools, or public transportation, which are often busy, loud, and require individuals to filter out an overabundance of noise and other sensory input. Auditory hypersensitivity has been described as physically painful, impairs individuals’ abilities to focus, and can make it difficult to interact with the environment and with other people.

Groups of neurons connect and communicate with each other by passing signals through synapses, which can be excitatory or inhibitory. Excitatory synapses amplify signals, while inhibitory synapses dampen them. Typically, a precise balance exists between the numbers of excitatory and inhibitory synapses within a neural circuit, and having an imbalance may lead to hyperexcitability — which in the case of auditory circuits could overamplify sound information.

This project will test whether the two most common ASD-related gene mutations lead to this kind of imbalance.

The project will focus on dysregulation of a specific type of inhibitory interneuron, parvalbumin-positive, or PV+, interneurons, as a potentially shared mechanism. PV+ interneurons are potent regulators of the sensitivity and activity of excitatory neurons. When their function isn’t properly controlled, individuals may be more sensitive to sounds perceived by others at a normal volume.

The researchers will use rat models to explore how the brain reacts to sound stimuli, and how this may change with different ASD-related gene mutations. The team will use in-vivo electrophysiology to record the electrical activity from populations of auditory neurons in these rat models. This activity can be associated with behavioral changes in response to a stimulus such as playing sounds.

Additionally, the group will collaborate with Beckman researcher Howard Gritton, an assistant professor of comparative biosciences and bioengineering, to use optogenetics: a method to control cell activity with light. Neurons in a specific brain region can be engineered to activate in the presence of blue light. For example, researchers can target and activate PV+ neurons to test whether this alleviates auditory hypersensitivity symptoms in rats.

If activating PV+ neurons is shown to reduce auditory overload, the researchers hope to use that information to develop treatments. For example, the team aims to show that minocycline, a drug which manipulates PV+ interneurons, may be a potential treatment for sensory hypersensitivity.

Methods and results from this study may also help with identification and diagnosis of sensory issues. Methods used to gauge the response of rats to sound could be a basis for tools to quantitatively measure sensory hypersensitivity in humans, for use in clinical trials.

In addition, this research seeks to identify a biomarker for sensory hypersensitivity — in this case, a brain signal which could be measured through an EEG — which could be used as a clinical screening tool. Many past studies which identified potential treatments for sensory overload using animal models have not translated well to humans, and finding such a biomarker may assist with this.

“One reason for this is a lack of these behavioral and electrophysiological biomarkers that can translate between animals and humans in a very straightforward way,” Auerbach said. “Sensory systems have the potential to be a really good tool to try and provide that bridge.”

 

Study finds that in Japanese adults with autism, balanced social adaptation enhances mental well-being, while excessive camouflage poses challenges.

Scientists explore the impact of social fitting among Japanese and British autistic adults, highlighting potential unique cultural differences in Japan. CREDIT MissLunaRose12 from Wikimedia Commons https://commons.wikimedia.org/w/index.php?curid=83118328

As people with autism grow up, they face unique challenges. They find it difficult to deal with mental health issues. There is a big gap in understanding how pretending to fit in (known as social camouflage), cultural beliefs and mental well-being are connected. This is especially true for non-Western countries like Japan. In societies that stress conformity, autistic individuals may feel more pressure to act non-autistic. This, in turn, affects their mental health. Not enough studies in Japan have investigated this concern, which leaves a crucial gap in our knowledge. It is vital to recognize these cultural differences to create better support and help for the mental health of autistic individuals all around the world.

They explored the characteristics of Japanese autistic individuals in terms of social camouflage and mental health. Their study involved the analysis of information on 210 individuals in Japan and 305 individuals in the UK. All the individuals self-reported autism. The researchers examined whether too much social camouflage could impact mental health. They specifically looked at depression and anxiety by using the Camouflaging Autistic Traits Questionnaire. This research used hierarchical multiple regression analysis with a quadratic term to understand the patterns in Japan. Interestingly, these patterns were different from the straightforward results in the UK.

In Japan, researchers found that autistic people with too much or too little social camouflage tended to show worse mental health, while only autistic people with more social camouflage did so in the UK. Discussing the findings, Prof. Oshima highlights, “Among Japanese autistic adults, we discovered that the link between social camouflage and mental health wasn’t straightforward, unlike in their UK counterparts. Moderate social camouflage showed a positive association with mental well-being. In contrast, excessive social camouflage hurt mental health.” 

Additionally, the results emphasized a greater awareness of social stigma in Asian countries. Consequently, feeling judged by others is connected to trying to blend in or hide autistic traits through social camouflage. Prof. Oshima notes, “We found autistic people in Japan tend to engage in less social camouflage than in the UK. The lower social camouflage among Japanese autistic individuals may stem from a lack of awareness about their condition. Such a situation reflects the need for improved education and understanding within Japanese society.”

This research reveals the importance of considering cultural factors when supporting individuals with autism. It also acknowledges the impact of societal expectations and stigma. Furthermore, it stresses the urgency of raising awareness about autism in Japan, which could positively influence mental health outcomes. The connection between social stigma, delayed diagnoses, and social camouflage in Japan highlights specific areas where targeted support is needed. 

Prof. Oshima concludes by emphasizing the long-term significance of their study. She states that the results can play a crucial role in shaping strategies to enhance the mental well-being of autistic individuals in Japan. Thus, they can suggest a potential step toward embracing diversity in the country!