̽��ֱ�� of Cambridge - Queen Anne’s Gate Foundation

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

HikiApp

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

̽��ֱ��text in this work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 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.

Yes

Licence type:

Public Domain

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.

Yes

Autistic adults experience high rates of negative life events

cjb250 — Fri, 05 Jul 2019 14:46:37 +0000

These negative life experiences could partially explain higher rates of anxiety and depression symptoms and lower life satisfaction in autistic adults compared to non-autistic adults.

Mental health conditions, such as anxiety and depression, are extremely common in autistic adults. Negative life experiences increase the risk of anxiety and depression in the general population, yet few studies have investigated whether vulnerability to these types of experiences might be responsible for higher rates of depression and anxiety and autistic adults.

One barrier to investigating vulnerability in autism is the lack of suitable measures. ̽��ֱ��research team, based at the ̽��ֱ�� of Cambridge, Autism Research Centre, therefore developed a new measure called the Vulnerability Experiences Quotient (VEQ).

̽��ֱ��team worked with an advisory group of autistic adults to develop the measure to ensure that it included experiences that autistic people felt were relevant to them. ̽��ֱ��VEQ asks participants whether they have experienced 60 negative life events, across a wide variety of settings, and including both adulthood and childhood experiences.

426 autistic adults and 268 non-autistic adults completed the VEQ via an online survey. ̽��ֱ��two groups had similar levels of educational attainment and the majority of autistic adults did not have intellectual disability. ̽��ֱ��autistic participants reported higher rates of 52 of the experiences in the VEQ.

This included items relating to financial hardship: 45% of autistic adults said they had had a period of life without enough money to meet basic needs, compared to 25% of the non-autistic adults; domestic abuse: 20% of autistic adults that had been in a relationship had been sexual abused by their partner, compared to 9% of the non-autistic adults, and ‘mate-crime’: 70% said they had been bullied by someone they considered to be a friend, compared to 31% of the non-autistic adults.

Participants also completed measures of anxiety and depression symptoms and a brief life-satisfaction scale. Autistic adults reported higher levels of depression and anxiety symptoms and lower levels of life satisfaction.

Those individuals with the highest number of negative life experiences on the VEQ also experienced the highest number of current anxiety and depression symptoms and the lowest current life satisfaction.

Although this study cannot prove that these negative experiences cause depression, anxiety or lower life satisfaction, as these are just associations, these findings are consistent with the idea that vulnerability to negative life experiences is partially responsible for higher rates of anxiety and depression and lower life satisfaction in autistic adults.

Lead author Dr Sarah Griffiths, said: “This research highlights the challenges that autistic adults face in our society. With the right support many of these events are preventable. We need to ensure that all autistic adults have appropriate support to reduce their vulnerability and to improve their mental health outcomes.”

Dr Carrie Allison, one of the Cambridge research team said: “ ̽��ֱ��results of this study are a wake-up call indicating the serious extent of negative experiences that autistic adults suffer in most areas of their lives. This study focused on intellectually able autistic adults due to the online survey method. Future work will focus on adults with intellectual disability who may have a different set of vulnerabilities.”

Professor Simon Baron-Cohen, director of the Autism Research Centre at Cambridge, said: “This research is vital to inform Government policy makers worldwide about the appalling violations of autistic people’s human rights. Our next step will be working hard to translate these findings into new policies, such as the need for every autistic person to have a life-long support worker to whom they can turn to help them navigate the world”.

Clara, an autistic adult from London commented on the study: “This research is so important to me. Despite being intelligent and good with people, I've had too many negative challenging situations in my life - with work, close relationships, access to health, social services, and education. It has affected, and continues to affect my mental health"

This study was funded by the charities Autism Research Trust and Autistica. ̽��ֱ��research also benefited from funding from the Queen Anne’s Gate Foundation, Mishcon de Reya LLP with support from Gesher School, the NIHR CLAHRC East of England and the IMI AIMS2TRIALS.

Reference
Griffiths, S., Allison, C., Kenny, R., Holt, R., Smith, P. & Baron-Cohen, S. (2019) ̽��ֱ��Vulnerability Experiences Quotient (VEQ): A study of vulnerability, mental health and life satisfaction in autistic adults. Autism Research.

Autistic adults are vulnerable to many types of negative life experience, including employment difficulties, financial hardship, domestic abuse and ‘mate-crime’, according to new research published today in the journal Autism Research.

This research highlights the challenges that autistic adults face in our society. With the right support many of these events are preventable

Sarah Griffiths

Alexas_Fotos

One against all

Yes

Licence type:

Public Domain