Conversations about autism

I am six months into a new role as Autism Champion for the Royal College of Psychiatrists, and already I’ve had many fascinating and thought-provoking conversations. One of them was with Andrew Carpenter, who is the Autism Programme Development Lead for NHS England in the London Region.

Andrew told me he was diagnosed with autism aged 40. It was a life-changing event. He said, "I saw the challenges and difficulties I had experienced throughout my life through a new lens…a lot of things suddenly made sense".

Although his autism diagnosis has been overwhelmingly positive for Andrew, it was also unsettling to look back and realise things could have been much easier if the autism had been picked up earlier. Andrew described having mental health issues from his teenage years, including suicidal ideation, which required treatment from mental health services.

Accessing services is often difficult for autistic people, as it often requires making phone calls, use of public transport, and sitting in noisy waiting rooms for unspecified periods of time, which all cause anxiety. It’s not unusual for an autistic person to enter a mental health appointment in a heightened state of anxiety and sensory overload, which can make it much harder for them to communicate and retain information.

Andrew saw a psychiatrist for eighteen months, and he remembers the appointments were a traumatic experience in themselves: "they sat in almost complete silence for the whole period, not adjusting their approach, with me not knowing how to start the conversation without help."

Experiences like these can make the whole process of finding help so painful that autistic people drop out, or are unfairly marked as ‘did not attend’. Andrew said: "the so-called ‘difficult’ patient is often just distressed by the process of getting to the appointment in the first place". He pointed out there are many cost-free and small practical changes that can be made to mitigate this and improve accessibility.  

Psychiatrists need to be aware of this and be prepared to make reasonable adjustments for autistic service users. I’ve heard lots of stories from autistic people about what a difference even seemingly small reasonable adjustments can make: providing some extra information in advance about what to expect at the appointment; dimming the lights in the consultation room; or giving information in writing as well as verbally.

You don’t need to be an expert in autism to do this. I’ve been told that the very best psychiatrists openly acknowledge they don’t have all the answers, and they ask the patient themselves what adjustments can help.

Another inspiring conversation I had recently was with Dr Mary Doherty. Mary is a consultant anaesthetist. She is also autistic. In 2019 Mary founded Autistic Doctors International (ADI) to represent and support autistic doctors around the world.

ADI is growing rapidly and psychiatrists are its second-largest group by specialty (behind GPs). Mary told me that traits such as diligence, focus, perfectionism, and honesty mean that autistic doctors tend to perform very highly in their jobs.  However, they can be more susceptible to mental health problems and burnout because of workplace issues like sudden changes in job plans or overloading sensory environments.

Workplace reasonable adjustments can in some cases be literally career-saving, yet many autistic doctors are reluctant to ‘come out’ to their managers because of fear of stigma and negative career impact. Mary’s message is that autistic doctors are a vital and indispensable part of the health workforce, and managers and occupational health need to be aware of the importance of reasonable adjustments for autistic employees.

If you are an autistic doctor yourself, please consider joining ADI. Formal diagnosis is not required to join and they can be contacted via their Facebook page.