An international research team, including Irish and UK doctors, is seeking review of current medical service provision and basic training in autism for all healthcare professionals, following a new study highlighting the barriers to healthcare for autistic people.
Led by Dr Mary Doherty, founder of Autistic Doctors International (ADI) and a consultant anaesthetist at Our Lady’s Hospital, Navan, Republic of Ireland – in collaboration with Brighton and Sussex Medical School (BSMS) and institutions in Ireland, the UK and the US – the research found serious failings in healthcare provision for autistic people.
Autistic people have increased rates of physical and mental illness, leading to reduced life expectancy, yet they are a hidden minority group in healthcare. Autistic people are currently estimated to comprise 1-2% of the population, but the real figure could be higher, as many remain undiagnosed.
Dr Doherty said: “Before conducting this research we knew that autistic people faced barriers accessing healthcare, but we didn’t expect to find that using the phone was such a huge factor, or that one in three autistic respondents had been unable to access healthcare for a potentially life threatening condition.”
One of the most worrying findings was that 80% of autistic adults reported difficulty visiting a GP, generally considered the first port of call for medical issues. This is in contrast to 37% of non-autistic adults. Reasons given for this difficulty included: inability to use the telephone to book appointments; not feeling understood; difficulty communicating with doctors; sensory overload; and organisational issues.
Many healthcare professionals have never received training in autism and few have an understanding of the specific issues autistic people face. GPs tend to underestimate the number of autistic patients in their practice and the severity of disability caused by autism. Only a minority feel confident communicating with autistic patients or identifying or making the necessary adjustments.
Dr Doherty continued: “Potentially large numbers of autistic adults, many undiagnosed, are facing significant challenges accessing basic healthcare and likely to experience increased morbidity and mortality, yet outside of intellectual disability services, they are largely invisible in healthcare.
“We urgently need autism training for all healthcare providers and to develop diagnostic and support services for autistic adults as part of our public health system. It is deeply concerning that a condition with such profound health impacts currently receives no funding or provision in primary care, secondary care or social services. Members of our study team are carrying out research into the training needs of GPs and developing training that will be designed and delivered by autistic GPs.”
Dr Mary Doherty, Founder, Autistic Doctors International and Dr Sebatian Shaw, Honorary Clinical Lecturer, BSMS, discuss the new study in the video above.
Autism is often associated with childhood, but in recent years, growing recognition of autism in adulthood is leading to increased rates of adult diagnosis. However, there is currently no path to diagnosis within the Irish public health system, and long waiting lists for assessment in the UK, which lead to high rates of self-identification. It is interesting to note that the self-identified group experienced the same barriers and adverse consequences as those with a formal diagnosis.
Dr Sebastian Shaw of BSMS, co-author of the study, said: “For me, there were two really important findings here. Firstly, the overall study validates the struggles that autistic people can face every day when trying to access healthcare. The comparison to non-autistic respondents helped to highlight this stark difference in many places.
“Secondly, our finding of no significant differences between those self-identifying as autistic and those reporting a formal diagnosis is highly important. Seeking a formal diagnosis can be difficult, and it can take many years to be seen for an autism diagnostic assessment as an adult. Our study therefore validates the experiences of those who have not yet received a formal diagnosis.”
Key findings include:
- Untreated mental illness was reported by 69%
- Untreated physical illness was reported by 63%
- 36% required more extensive treatment or surgery than if they had attended sooner
- 34% had an untreated potentially serious or life-threatening condition
- The most notable barrier was difficulty using the telephone to make an appointment, for 62% in contrast to 16% of the non-autistic control group
- 59% reported difficulty communicating during a consultation
- 60% were told they should have attended sooner
- 47% did not attend specialist referral
- All above results were significantly different to the non-autistic group
The study has been published in the BMJ open and can be accessed through the button link below.
Read the study in full here >