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According to a new study, many people with autism who have a serious or life-threatening condition do not seek medical care. The most common barriers to health care include difficulty communicating with doctors or making appointments over the phone.
“For me, as a doctor, to realize that patients are sitting at home with serious medical conditions, unable to access health care or pick up the phone and call an ambulance when they need help. ‘an ambulance is absolutely shocking,” said lead investigator Mary Doherty, founder of Autistic Doctors International and consultant anesthesiologist at Our Lady’s Hospital in Navan, Ireland.
The data comes from a 52-question online survey of 507 people with autism and 157 people without autism who were recruited via social media and mostly live in the UK or Ireland. Doherty began developing the survey in consultation with autistic participants in 2018 autscape conference in Tonbridge, England. Some survey questions were multiple-choice or yes-no, and others were open-ended.
Of the autistic respondents, 77% had a formal diagnosis, 23% identified as autistic but had no diagnosis, and 62% were female. The median age for both groups was 38 years old.
In Ireland, there is no pathway to an autism diagnosis through the national health system; the only way to be diagnosed “is through private services, which means adults with autism are largely invisible in health care,” Doherty says. Receiving a formal diagnosis in Ireland can take several years after a referral from a GP.
Most autistic people surveyed – 80% – said they had difficulty seeing their doctor when needed. A determining factor was the difficulty of using the telephone to make an appointment. Survey responses were similar for autistic people with and without a formal diagnosis.
Despite these barriers, people with autism were more likely to rate their relationship with the doctor as “very important” or “important”, compared to people without autism. Yet only 33% of autistic respondents said they had a good relationship with their GP. Statistical analyzes did not take into account potential confounders, such as ethnicity or socioeconomic status, and online surveys are subject to myriad sources of bias.
Nearly 70% of people with autism said they had untreated mental health issues, almost half said they “hadn’t been referred to a specialist” and 34% said they had not had access to a treatment for a “potentially serious or life-threatening condition”. according to the study, published in BMJ open in February.
“I wasn’t prepared for the level of difficulty people were having,” Doherty says. “As an autistic person, I had also had difficulty accessing health care, but I hadn’t realized that was a common autistic experience. I thought it was just me. “
Ssurvey results are subject to “undercoverage bias”: online respondents are more likely to be white and female, and therefore results are not always representative of the group as a whole.
Yet Doherty used the findings to shape health care in Ireland. Clonakilty, a town in southern Ireland near the Celtic Sea, has been the first “autism friendly town” to be certified by the Irish Autism Association AsIAm. Certification requires that half of the city’s healthcare professionals complete an autism-focused training program; Doherty participated in these trainings. At least a dozen towns in Ireland are now certified as autism-friendly.
To ease barriers to healthcare, Doherty recommends doctors allow people with autism to book appointments online, give them more time to describe their symptoms, and conduct ‘sensory’ audits in their rooms. waiting. Many people with autism said in the survey that they felt uncomfortable in the doctor’s office because of noise, crowds or bright lights.
In the UK, anyone over the age of 14 with an intellectual disability is invited to attend a health check through the National Health Service every year, and doctors are encouraged to take part in the scheme. Sebastian Shaw, an honorary clinical lecturer at Brighton and Sussex Medical School who worked with Doherty on the new study, is working to expand this program to also include autistic adults without intellectual disabilities.
“I’m not aware of any large studies that have previously associated these adverse effects the way our study did,” says Shaw, who has autism. “But it takes a long time for research to turn into practice.”
Cite this article: https://doi.org/10.53053/RRJU5549