Seeing me as high functioning masks my difficulties

Coping with the unpredictability of appointments

As an autistic personI struggle to speak on the phone. I will go out of my way to avoid making phone calls, but the only way I can contact my GP surgery or my crisis team is by phone. When we first went into lockdown, my GP appointments swiftly moved to telephone or video appointments. I became increasingly rattled by the unpredictability of telephone appointments and particularly with not knowing when exactly my team would call. I worried constantly as a result.

At some point, the stress of all the unknowns became too much. Unable to cope with the unpredictability of it all, in one appointment I burst into tears of frustration. My primary care team and I swiftly devised a more structured arrangement whereby we now have a set day and time for appointments. This arrangement has been helpful for both of us, and my pre-appointment anxiety has reduced significantly. This means I now know what to expect and can prepare accordingly.

Communicating emotions and information

My autism means I am excellent at spotting patterns, display high attention to detail, and have an insatiable desire for knowledge. But sometimes I struggle to apply facts or to put them into context. During a recent period of recurring episodes of hypoglycaemia, I immediately started to learn everything I could about glucose. I recounted this with pride to my team at my next appointment. Although impressed, they carefully explained that knowing this wasn’t actually going to help me produce glucose. For clinicians who don’t know me, they might regard my approach as arrogance, but the more I know the more reassured I feel.

I also find it difficult to identify and express my emotions. This can make it nearly impossible to answer seemingly straightforward questions at the start of a consultation, such as “how are you?” My healthcare team members now start the appointment by asking me what I’ve been up to, or what’s been going on over the past week, because I find it easier to focus at first on facts and events. We are then able to infer my emotional state from that.

Autistic people may find their needs being described as “complex,” but I prefer autism to be viewed as just being different. There are many straightforward ways in which health professionals could adapt their approach to ensure we are able to access and engage with health systems as well as everyone else.