How Can We Improve Care for Autistic People?

Understanding Autism in Australia

Firstly, a reminder that autism is a lifelong neurodevelopmental disorder that affects at least 1% of the population, although due to challenges around recognition and diagnosis it is thought that this may be a significant underestimate. Autism affects how people communicate and interact with the world, which has major implications for how they access and receive healthcare. Of note, it is not a learning disability, although this may co-exist. Many physical and mental health conditions are more prevalent in autistic people including diabetes, hypertension and obesity. Life expectancy is reduced by a mean of 16 years, a shocking statistic. 

Barriers Faced by Autistic Adults

There has been some interesting primary care centred research on the self-reported barriers to healthcare for autistic people. A cross-sectional study published in the BMJ found that 80% of autistic adults vs 37% of non-autistic adults reported difficulty visiting a GP. Key barriers included difficulty making appointments by telephone, not feeling understood, difficulty communicating with their doctor and the waiting room environment.

Most autistic adults also reported concern that ‘I won’t be taken seriously when I describe my symptoms’. There were difficulties in summarising their concerns to health practitioners, with many identifying with a ‘need to give the whole story and not leave anything out’, and anxiety making communication with healthcare practitioners more difficult. 

The Impact of Communication

The UK Care Quality Commission (CQC) recently published a report entitled ‘How you see me matters: perspectives of autistic people using primary care services', which has implications for GPs in Australia. The report describes how people with autism may report their symptoms in a way that doesn’t fit with the textbook. For example, a traditional 1-10 pain score may not make sense to them if them have never experienced anything similar before, or see pain as a colour. People with autism reported clinicians not believing their description of pain. This led to a mistrust of the clinician and a barrier to accessing future care. 

In a separate BMJ article, Helen Wolfe provided a personal account of her experience of accessing primary care as an autistic adult. In common with many autistic people, she reported that she struggles to speak on the phone and actively avoids it. She painted a picture of how the move to a more telephone-based system triggered significant situation-specific anxiety for her. She found that both the uncertainty of what would happen during the call and lack of knowledge of when exactly the call would take place triggered constant worry. She also described difficulty in identifying and communicating her emotions. The typical ‘how are you?’ question was difficult for her to answer. She suggests using language that focuses on fact rather than emotions. 

Improving Care for Autistic Patients

So, how can we improve care for autistic people? The CQC report makes suggestions of practical changes we can implement. As GPs we often pride ourselves on person-centred care. The most obvious step in achieving this is to ask the autistic person what would best support that individual, recognising that people will have different communication styles and needs. Consider offering different ways to book appointments (e.g. text, online or email). Be aware that the sensory environment of the surgery can have a big effect on autistic people and their executive function. Reasonable adaptations could include reducing stimuli in the waiting room, a quiet area to wait separate to the main waiting room or the option to wait in their car until called in.

Recommendations for Better Support

Research suggests that people with autism may find it helpful to have the option to submit the information about their health concerns both in advance and after a consultation. This could be via e-consult or email. Longer appointments may be beneficial to allow time for clear communication. Consider a written plan of action following the consultation. As we know in so many situations in healthcare, continuity is key, having the same GP ‘takes the edge off some of that anxiety of the unknown’.  

Conclusion: Equal Access for All

Some of these recommendations are more easily achieved than others, especially within a stretched system. There is no one size fits all and different practices may come up with different approaches. However, the conclusion of the BMJ article puts things pretty succinctly; ‘adjustments for communication needs are as necessary for autistic people as ramps for wheelchair users’. 

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This blog was originally published on nbmedical.com by Dr Laura Darby on 3rd May 2023 and has been adapted for an Australian audience.