How can we improve care for autistic people?

The QCQ have recently published a report entitled ‘How you see me matters: perspectives of autistic people using primary care services'. The purpose of the report was to shine a light on the specific challenges experienced by autistic people when accessing primary care, through reviewing available literature and conducting focus groups.

A reminder first that autism is a lifelong neurodevelopmental disorder that affects at least 1% of the UK population, although due to challenges around recognition and diagnosis it is thought that this may be a significant underestimate. It 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 LD 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. 

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. They also looked at self-reported adverse outcomes stemming from difficulties accessing healthcare. These included untreated mental and physical health conditions, delayed presentations and being more likely to need extensive treatment due to more advanced disease when accessing care. 

The CQC reports elaborated further on the theme of not being believed/ understood. They state that many autistic people experience sensory differences in areas such as ‘awareness of the internal sense of your body’ and ‘nociception-perception or sensation of pain’. They may describe 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 in the focus groups 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. A key structural change led to an increased barrier. In common with many autistic people she reported that she struggles to speak on the phone and actively avoids it. She painted a clear picture of how the move to a telephone-based system without clearly timed appointments 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 worked together with her primary care team to agree a set day and time for appointments. She also describes 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. 

So, how can we improve care for autistic people? The CQC report makes suggestions of practical changes we can make. 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. They may find the waiting room quieter on the first or last appointment of the day. Research suggests that they 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’ (QCC).   

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’.