̽��ֱ�� of Cambridge - Corbin Charitable Trust

Autistic individuals have increased risk of chronic physical health conditions across the whole body

Anonymous — Fri, 29 Sep 2023 12:38:16 +0000

Previous studies have shown that autistic people are dying far younger than others and that they are more likely to experience a range of physical health conditions. Until now, it was believed that autistic people were more likely to have specific conditions, such as gastrointestinal pain, sleep problems, and epilepsy/seizure disorders.

̽��ֱ��new study is different in that it investigated a much wider range of health risks than has been done before and shows that autistic people experience a much broader range of health vulnerabilities than was previously thought.

Specifically, autistic people are more likely to have physical health conditions across all organ systems, including the brain (such as migraine), the gastrointestinal system (for example coeliac disease), and the endocrine system (for example endometriosis), compared to non-autistic people.

Dr Elizabeth Weir, a Research Associate at the Autism Research Centre in Cambridge, who led the team, said: “This study emphasizes the increased health vulnerability of autistic people both in the types and number of conditions they may have. We now need to understand the causes of these increased risks, which are likely multifactorial in nature.”

This is the first study to show that autistic people are more likely than non-autistic people to experience ‘physical health multimorbidity’, meaning that they have at least two or more physical health conditions. These include co-occurring fibromyalgia (which causes chronic pain throughout the body) and polycystic ovarian syndrome (which causes irregular menstrual cycles, infertility, excess hair growth, and acne in women) across different organ systems.

̽��ֱ��study was conducted by a team at the ARC and used an anonymized, self-report survey to compare the experiences of 1,129 autistic people with 1,176 non-autistic people aged 16-90 years. ̽��ֱ��participants were international, although 67% of participants were from the UK.

̽��ֱ��survey assessed risk of 60 physical health conditions across nine different organ systems (gastrointestinal, endocrine, rheumatological, neurological, ocular, renal/hepatic, otolaryngological, haematological, and dermatological). ̽��ֱ��analysis took into account other factors such as age, sex assigned at birth, country of residence, ethnicity, education-level, alcohol use, smoking, body mass index, and family medical history.

̽��ֱ��team found that autistic people were more likely to have diagnosed medical conditions across all nine organ systems tested, compared to non-autistic people. Regarding specific conditions, autistic people had higher rates of 33 specific conditions compared to non-autistic peers. These included coeliac disease, gallbladder disease, endometriosis, syncope (fainting or passing out), vertigo, urinary incontinence, eczema, and iron deficiency anaemia.

Dr John Ward, a visiting research scientist at the ARC in Cambridge, who conducted the analysis, said: “This research adds to the body of evidence that the healthcare needs of autistic people are greater than those of non-autistic people. More research is required, particularly surrounding the early identification, and monitoring of chronic conditions.”

This is also the first epidemiological study to show that Ehlers-Danlos Syndrome (EDS) – a group of disorders that affects connective tissues and which cause symptoms such as joint hypermobility, loose joints that dislocate easily, joint pain and clicking joints, skin that bruises easily, extreme tiredness, digestive problems, dizziness, stretchy skin, wounds that are slow to heal, organ prolapse, and hernias – may be more common among autistic women than non-autistic women.

̽��ֱ��new research also replicates previous findings to show that autistic people have higher rates of all central sensitivity syndromes, which are a varied group of conditions that are related to dysregulation of the central nervous system, compared to non-autistic people. Central sensitivity syndromes include irritable bowel syndrome (IBS), temporomandibular joint syndrome (TMJ), migraine, tinnitus, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and fibromyalgia.

̽��ֱ��new study also investigated risks of physical health multimorbidity with a novel application of ‘network analysis’, a technique used to understand relationships between different parts of a system. This analysis method is regularly used in neuroscience to understand how different regions of the brain interact with each other. In this study, the analysis assessed how often conditions from different organ systems occurred together in the same person. In addition to highlighting complex health needs, this analysis established for the first time that the combinations of medical conditions that frequently co-occur may be different between autistic and non-autistic adults.

These results are preliminary evidence that healthcare providers such as GPs or family physicians need to be monitoring the health care needs of autistic people much more closely.

Dr Carrie Allison, Director of Strategy at the ARC and a member of the team, added: “These findings highlight the acute need to adapt the healthcare system to better meet the needs of autistic people. These results must be confirmed in larger, population-based samples.”

Professor Sir Simon Baron-Cohen, Director of the ARC and another member of the team, said: “We are aware of the risks of mental health conditions in autistic people, but this new research identifies their risks of physical health conditions too. We need to urgently re-evaluate current health care systems to improve support for autistic people.”

Funding for this project was provided by the Autism Centre of Excellence at Cambridge, the Rosetrees Trust, the Cambridge and Peterborough NHS Foundation Trust, the Corbin Charitable Trust, the Queen Anne’s Gate Foundation, the MRC, the Wellcome Trust and the Innovative Medicines Initiative.

Reference

Ward, J & Weir, E, Allison, C, Baron-Cohen, S. Increased rates of chronic physical health conditions across all organ systems in autistic adolescents and adults. Molecular Autism (2023).

Autistic people have higher rates of chronic physical health conditions across the whole body and are more likely to have complex health needs, according to a study led by researchers at the ̽��ֱ�� of Cambridge. Their findings, published in the journal Molecular Autism, have important implications for the clinical care of autistic people.

This study emphasizes the increased health vulnerability of autistic people both in the types and number of conditions they may have

Elizabeth Weir

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Two autistic friends sitting outside using stim toys and laughing at their phones

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Autistic individuals have poorer health and healthcare

Anonymous — Fri, 27 May 2022 07:52:21 +0000

These findings, published in Molecular Autism, have important implications for the healthcare and support of autistic individuals.

Many studies indicate that autistic people are dying far younger than others, but there is a paucity of research on the health and healthcare of autistic people across the adult lifespan. While some studies have previously suggested that autistic people may have significant barriers to accessing healthcare, only a few, small studies have compared the healthcare experiences of autistic people to others.

In the largest study to date on this topic, the team at the Autism Research Centre (ARC) in Cambridge used an anonymous, self-report survey to compare the experiences of 1,285 autistic individuals to 1,364 non-autistic individuals, aged 16-96 years, from 79 different countries. 54% of participants were from the UK. ̽��ֱ��survey assessed rates of mental and physical health conditions, and the quality of healthcare experiences.

̽��ֱ��team found that autistic people self-reported lower quality healthcare than others across 50 out of 51 items on the survey. Autistic people were far less likely to say that they could describe how their symptoms feel in their body, describe how bad their pain feels, explain what their symptoms are, and understand what their healthcare professional means when they discuss their health. Autistic people were also less likely to know what is expected of them when they go to see their healthcare professional, and to feel they are provided with appropriate support after receiving a diagnosis, of any kind.

Autistic people were over seven times more likely to report that their senses frequently overwhelm them so that they have trouble focusing on conversations with healthcare professionals. In addition, they were over three times more likely to say they frequently leave their healthcare professional’s office feeling as though they did not receive any help at all. Autistic people were also four times more likely to report experiencing shutdowns or meltdowns due to a common healthcare scenario (e.g., setting up an appointment to see a healthcare professional).

̽��ֱ��team then created an overall ‘health inequality score’ and employed novel data analytic methods, including machine learning. Differences in healthcare experiences were stark: the models could predict whether or not a participant was autistic with 72% accuracy based only on their ‘health inequality score’. ̽��ֱ��study also found worryingly high rates of chronic physical and mental health conditions, including arthritis, breathing concerns, neurological conditions, anorexia, anxiety, ADHD, bipolar disorder, depression, insomnia, OCD, panic disorders, personality disorders, PTSD, SAD, and self-harm.

Dr Elizabeth Weir, a postdoctoral scientist at the ARC in Cambridge, and the lead researcher of the study, said: “This study should sound the alarm to healthcare professionals that their autistic patients are experiencing high rates of chronic conditions alongside difficulties with accessing healthcare. Current healthcare systems are failing to meet very fundamental needs of autistic people.”

Dr Carrie Allison, Director of Strategy at the ARC and another member of the team, added: “Healthcare systems must adapt to provide appropriate reasonable adjustments to autistic and all neurodiverse patients to ensure that they have equal access to high quality healthcare.”

Professor Sir Simon Baron-Cohen, Director of the ARC and a member of the team, said: “This study is an important step forward in understanding the issues that autistic adults are facing in relation to their health and health care, but much more research is needed. We need more research on long term outcomes of autistic people and how their health and healthcare can be improved. Clinical service providers need to ask autistic people what they need and then meet these needs.”

̽��ֱ��research was funded by the Autism Centre of Excellence, the Rosetrees Trust, the Cambridge and Peterborough NHS Foundation Trust, the Corbin Charitable Trust, the Queen Anne’s Gate Foundation, the MRC, the Wellcome Trust and the Innovative Medicines Initiative.

Reference
Weir, E, Allison, C, & Baron-Cohen, S. Autistic adults have poorer quality healthcare and worse health based on self-report data. Molecular Autism (2022).

Autistic individuals are more likely to have chronic mental and physical health conditions, suggests new research from the ̽��ֱ�� of Cambridge. Autistic individuals also report lower quality healthcare than others.

This study should sound the alarm to healthcare professionals that their autistic patients are experiencing high rates of chronic conditions alongside difficulties with accessing healthcare

Elizabeth Weir

NicolasMcComber

Autistic trans man at home looking out of a window

̽��ֱ��text in this work is licensed under a Creative Commons Attribution 4.0 International License. Images, including our videos, are Copyright © ̽��ֱ�� of Cambridge and licensors/contributors as identified. All rights reserved. We make our image and video content available in a number of ways – as here, on our main website under its Terms and conditions, and on a range of channels including social media that permit your use and sharing of our content under their respective Terms.

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Autistic individuals may be more likely to use recreational drugs to self-medicate their mental health

cjb250 — Thu, 01 Jul 2021 22:30:48 +0000

There is significant debate about substance use of autistic adolescents and adults. Some studies indicate that autistic individuals are less likely to use substances, whereas others suggest that autistic individuals are at greater risk of substance misuse or abuse. ̽��ֱ��team at the Autism Research Centre in Cambridge used a ‘mixed methods’ design to consider both the frequency of substance use among autistic individuals, as well as their self-reported experiences of substance use.

Overall, 1,183 autistic and 1,203 non-autistic adolescents and adults (aged 16-90 years) provided information about the frequency of their substance use via an anonymous, online survey; of this group, 919 individuals also gave more in-depth responses about their experiences of substance use.

Autistic adults were less likely than non-autistic peers to use substances. Only 16% of autistic adults, compared to 22% of non-autistic adults, reported drinking on three or more days per week on average. Similarly, only 4% of autistic adults reported binge-drinking compared to 8% of non-autistic adults.

There were also some sex differences in patterns of substance use: autistic males were less likely than non-autistic males to report ever having smoked or used drugs. In contrast, the team did not find differences in the patterns of frequency of smoking or drug use between autistic and non-autistic females.

However, despite lower rates of substance use overall, the qualitative findings of the study provide a much less hopeful picture: autistic adults were nearly nine times more likely than non-autistic peers to report using recreational drugs (such as marijuana, cocaine and amphetamines) to manage unwanted symptoms, including autism-related symptoms.

Drugs were used to reduce sensory overload, help with mental focus, and provide routine, among other reasons. Several autistic participants also indirectly referenced using substances to mask their autism. Past research has shown that this behavioural management (also known as ‘camouflaging’ or ‘compensating’) has been linked to emotional exhaustion, worse mental health, and even increased risk of suicide among autistic adults.

Autistic adolescents and adults were also over three times more likely than others to report using substances to manage mental health symptoms, including anxiety, depression, and suicidal thoughts. Several participants specifically noted that they used drugs for self-medication. However, this self-medication was not always viewed as negative by participants, and several noted that using recreational drugs allowed them to reduce the doses of prescribed medications for mental health conditions, which was a welcome change due to the sometimes significant side effects from their prescribed medications.

Another area of concern was the strong association between vulnerability and substance use among autistic teenagers and adults. Previous work from the Cambridge team suggests that autistic adults may be much more likely to have adverse life experiences and be at greater risk of suicide than others. ̽��ֱ��findings of the new study indicate that autistic individuals are over four times more likely to report vulnerability associated with substance use compared to their non-autistic peers, including dependence/addiction, using drugs to deal with past trauma, and substance use associated with suicide.

In addition, the study identified two new areas of vulnerability not been previously reported: being forced, tricked, or accidentally taking drugs; and childhood use of substances (at the age of 12 years or younger).

Elizabeth Weir, a PhD student at the Autism Research Centre in Cambridge, and the lead researcher of the study, said: “Whether or not the substances currently classed as ‘recreational’ could be used medically remains an open question. It is evident that the current systems of health and social care support are not meeting the needs of many autistic teenagers and adults.

“No one should feel that they need to self-medicate for these issues without guidance from a healthcare professional. Identifying new forms of effective support is urgent considering the complex associations between substance use, mental health, and behaviour management—particularly as camouflaging and compensating behaviours are associated with suicide risk among autistic individuals.”

Dr Carrie Allison, Director of Research Strategy at the Autism Research Centre and a member of the research team, said: “While some of our results suggest lower likelihood of substance use overall, physicians should not assume that their autistic patients aren’t using drugs. Drug use can be harmful so healthcare providers should aim to establish trusting relationships with autistic and non-autistic patients alike to foster frank and honest conversations about substance use.”

Professor Simon Baron-Cohen, Director of the Autism Research Centre and a member of the team, said: “We continue to see new areas in which autistic adults experience vulnerability: mental health, physical health, suicide risk, lifestyle patterns, the criminal justice system, and so on. Substance use is now another area that we need to consider when developing new forms of support for autistic individuals. It is essential that we ensure that autistic people have equal access to high quality social and healthcare that can appropriately support their specific needs; and, unfortunately, it seems clear that our current systems are still not meeting this mark.”

̽��ֱ��research was funded by the Autism Research Trust, Rosetrees Trust, Cambridge and Peterborough NHS Foundation Trust, Corbin Charitable Trust, Medical Research Council, Wellcome and the Innovative Medicines Initiative.

Reference
Weir, E, Allison, C, & Baron-Cohen, S. Understanding the substance use of autistic adolescents and adults: a mixed methods approach. ̽��ֱ��Lancet Psychiatry (2021).

While autistic individuals are less likely to use substances, those who do so are more likely to self-medicate for their mental health symptoms, according to new research from the ̽��ֱ�� of Cambridge and published today in ̽��ֱ��Lancet Psychiatry.

It is essential that we ensure that autistic people have equal access to high quality social and healthcare that can appropriately support their specific needs; and, unfortunately, it seems clear that our current systems are still not meeting this mark

Simon Baron-Cohen

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Unhealthy patterns of diet, exercise, and sleep linked to high risk of cardiovascular disease in autistic people

cjb250 — Mon, 10 May 2021 15:34:45 +0000

̽��ֱ��results are published today in the journal Molecular Autism.

Earlier research suggests that autistic people die 16-35 years younger than expected, and that greater health problems may contribute to this risk. ̽��ֱ��present study is the first to consider the diet, exercise, and sleep patterns of autistic adults and how these patterns may relate to health outcomes.

̽��ֱ��team at the Autism Research Centre in Cambridge developed an anonymous, online survey about lifestyle choices and daily habits, personal medical history, and family medical history. ̽��ֱ��final study included 1,183 autistic adults and 1,203 non-autistic adults aged 16-90 years.

̽��ֱ��results showed that autistic adults were far less likely than non-autistic adults to meet very minimal health recommendations for diet, exercise, and sleep. Autistic adults were also far more likely to have atypical eating patterns (including limited diet) and sleep disturbance. They were more likely to be underweight or obese than non-autistic individuals.

These poor lifestyle habits were associated with greater risk of cardiovascular conditions such as high blood pressure, heart disease, and stroke among autistic males, and this was a stronger association even than a family history of a cardiovascular condition. Though it is not possible to say conclusively that a poorer lifestyle led to cardiovascular problems, the findings provide the first indication that promoting healthy choices regarding diet, exercise, and sleep may help to reduce the excess risks of health conditions in autistic adults.

While the results indicate that there may be other biological or environmental factors that leave autistic individuals at greater risk of health conditions, they also provide a clear target for intervention. Difficulties with maintaining a healthy lifestyle may also have knock-on effects beyond physical health, including limiting opportunities for social interaction (which may centre around mealtimes or exercise), and could contribute to worsening mental health, and affect employment or education.

̽��ֱ��lead researcher of the study, Elizabeth Weir, a PhD student at the Autism Research Centre in Cambridge, said: “These findings help us to better understand the experiences of autistic adults, and have wider implications for quality of life. We need to understand the reasons for restricted diet, limited exercise, and lack of sleep, to provide better support. This may include programmes for health education, and additional mental health support or supported living and working schemes.”

Dr Carrie Allison, Director of Research Strategy at the Autism Research Centre and a member of the research team, said: “ ̽��ֱ��challenges we see among autistic children regarding lifestyle behaviours extend into adulthood. Given the implications for risk of chronic disease and length of life, it is critical that we work to identify effective strategies for supporting health choices by autistic people of all ages.”

Professor Simon Baron-Cohen, Director of the Autism Research Centre and a member of the team, said: “ ̽��ֱ��wider picture suggests that autistic adults experience vulnerability in a variety of contexts, and this is just one new area that we should consider. Seeing that autistic adults are having such a hard time comparatively with healthy lifestyle habits has clear healthcare and policy implications: we need to create new and better support systems tailored to the specific needs of autistic people.”

Reference
Weir, E., et al. An investigation of the diet, exercise, sleep, BMI, and health outcomes of autistic adults. Molecular Autism 12, 31 (2021). DOI: 10.1186/s13229-021-00441-x

Funding
Funding for this project was generously provided by the Autism Research Trust, the Rosetrees Trust, and the Cambridge and Peterborough NHS Foundation Trust, the Corbin Charitable Trust, the MRC, the Wellcome Trust and the Innovative Medicines Initiative.

Autistic people have far greater risks of long term physical health conditions than others, but the reasons for this remain unclear. New research from the ̽��ֱ�� of Cambridge suggests that unhealthy lifestyle habits may be an important contributing factor.

These findings help us to better understand the experiences of autistic adults, and have wider implications for quality of life. We need to understand the reasons for restricted diet, limited exercise, and lack of sleep, to provide better support

Elizabeth Weir

Peter Burdon

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