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Dramatic Inequalities in Health and Healthcare for Autistic People

A new study from the University of Cambridge has revealed "stark" differences in both self-reported general health and in quality of healthcare for people with autism compared with others.

The research, published in Molecular Autism, is the largest study to date documenting the health inequalities faced by autistic people. Lead researcher Dr Elizabeth Weir, a postdoctoral scientist at the Autism Research Centre (ARC) in Cambridge, 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."

Previous studies have suggested that autistic people have poorer physical and mental health as well as a higher risk of premature mortality, along with higher healthcare utilisation yet poorer healthcare quality. Greater annual health expenditures have been reported both overall and across nearly all specific areas, including hospitalisation, outpatient, primary care, emergency care, mental health services, neurology, home healthcare, speech therapy, prescription drug claims, lab services, and skilled nursing assistance.

However, there has been what the authors describe as "a paucity of research on the health and health care of autistic people across the adult lifespan", and only a few small studies have compared the healthcare experiences of autistic people with those of others.

The ARC researchers, therefore, used an anonymous, cross-sectional, self-report questionnaire to assess rates of mental and physical health conditions, and the quality of healthcare experiences, among 1285 autistic individuals and 1364 non-autistic people. Participants were aged 16-96 years and hailed from 79 different countries, though 54% were from the UK.

The study found "worryingly high" rates of chronic physical and mental health conditions among the autistic people, including arthritis, breathing concerns, neurological conditions, anorexia, anxiety, ADHD, bipolar disorder, depression, insomnia, OCD, panic disorders, personality disorders, PTSD, SAD, and self-harm.

Lower Quality Healthcare for Autistic People

For 50 of the 51 healthcare items on the survey, autistic people self-reported lower quality care than others. They were far less likely to say that they:

  • Could explain what their symptoms are
  • Could describe how symptoms feel in their body
  • Could describe how bad their pain feels
  • Know what is expected of them when seeing their healthcare professional
  • Understand what their healthcare professional means when discussing their health
  • Feel they are provided with appropriate support after receiving a diagnosis of any kind

In addition, compared with non-autistic people, those with autism were:

  • More than seven times more likely to report that their senses frequently overwhelm them, so that they have trouble focusing on conversations with healthcare professionals
  • More than 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
  • About four times as likely to report experiencing shutdowns or meltdowns due to common healthcare scenarios such as setting up a healthcare appointment

The team then used data analytic methods, including machine learning, to create an aggregated 'health inequality score', and found that based on this alone, the models could predict whether or not a participant was autistic with 72% accuracy, even after stratifying by sex.

Health Inequalities 'Widespread and Dramatic'

These findings "have important implications for the healthcare and support of autistic individuals", the team concluded. "Autistic adults are more likely to have chronic health conditions alongside self-reported lower quality healthcare than others. Health inequalities between these groups are widespread and dramatic."

Autism prevalence is still increasing and it is now common, affecting 1 in 44 8-year-olds, with males being three to four times more likely to be diagnosed than females. "Thus, providers from all specialties are likely to engage with autistic patients in clinical work and should be aware of the unique strengths and challenges that their autistic patients may face in regard to mental health, physical health, healthcare access, and healthcare quality."

Dr Weir said: "Current healthcare systems are failing to meet very fundamental needs of autistic people." Co-author Dr Carrie Allison, director of strategy at the ARC added: "Healthcare systems must adapt to provide appropriate reasonable adjustments to autistic and all neuro-diverse patients to ensure that they have equal access to high quality healthcare."

Professor Sir Simon Baron-Cohen, director of the ARC and also one of the authors, 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 [on] how their health and healthcare can be improved. Clinical service providers need to ask autistic people what they need and then meet these needs."

Understanding of Autism is 'Worryingly Low'

Responding to the study, Tim Nicholls, head of influencing and research at the National Autistic Society (NAS), told Medscape UK: "This research is a stark reminder of the unacceptable health inequalities so many autistic people face, and echoes what autistic adults and their families tell us."

The NAS’s own research had found that professional understanding of autism is "worryingly low". Only 11% of autistic adults thought that hospital doctors had a good understanding of their condition. 

"No-one should face a lower quality of healthcare, or be unable to get across their needs, just because they are autistic," Mr Nicholls said.

"This is why it is so important that all health and care professionals have a good understanding of autism and the often-small adjustments that can help autistic people access quality healthcare – like giving someone more time to understand and answer questions in a consultation."

The Society is taking part in a trial along with the NHS and Mencap to help develop staff training on learning disability and autism.

"Autistic people need urgent and meaningful changes to our healthcare system," Mr Nicholls said. "This can only be achieved if the Government properly funds its national autism strategy, including rolling out Oliver McGowan Mandatory Training in Learning Disability and Autism to all health and care staff."

The 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.

Lead Image Credit: iStockphoto/Getty Images