I am staying at a friend’s house after being in hospital for five days. Long story but my mental health decided to misbehave and I was in a very unpleasant space. I want to talk about the experience of hospital but most importantly the attitude of the consultant psychiatrist and why change is still required in these settings, especially for autistic people.
I had not been in psychiatric hospital since 2013 – something of an achievement given my illness and my history. I discovered that things had changed in almost seven years and mostly for the better. The trip to emergency was very unpleasant but my request to stay in a quiet room rather than the waiting room were accommodated and the nurse assigned to me was very understanding and respectful. I was asked by the mental health admissions staff what I wanted to do and felt very much heard and empowered, even though I was unwell and felt very vulnerable. The nursing staff in the psych ward were almost all kind and explained to me what was going on. When I expressed that the uncertainty was really upsetting me they filled me in with all the information they had to make things less uncertain for me.
It was all incredibly unexpected and nice. In the past, mental health hospital admissions have been horrific in every way. I have felt – and been – entirely powerless and discrimination has been rife. When I posted on social media that I was in hospital this time, an autistic and Trans friend expressed concern saying how awful it is to be Trans and autistic in hospital. The whole situation had always been disempowering, invalidating and terrifying. However, this time was different. I thanked my friend who sits on the committee tasked with improving mental health services in Canberra for helping to make the experience of hospital so much better.
Yesterday I was discharged which was awesome, but the person doing the discharging – the consultant psychiatrist assigned to the ward – was the epitome of all the negative experiences I have had in the past in similar settings. Before I met him I thought this was my one and only positive hospital experience but the psychiatrist brought me back to all those other horrific admissions I had in the past. He started by saying ‘Is Yenn what your friends call you?’ to which I responded with yes and pointed out it is my legal name. He was rude about my gender identity and questioned my mental illness diagnosis of schizoaffective disorder. He asked who had given me this diagnosis. I responded by listing the six consultant psychiatrists in the past who had diagnosed me with this. He thought I was on too much medication and clearly thought there was nothing warranting my diagnosis. He said rude things about my weight and treated me like I wasn’t human. He fired questions at me about my illness. I was terrified he was going to cancel the medications I take which enable me to live my life the way I do and avoid me being totally psychotic and, well probably dead actually. That old feeling of powerlessness returned with a vengeance. I tried to be assertive but I suspect it just came across as angry – although actually I was angry. Very angry. How dare this privileged person who had known e for less than three minutes question the diagnostic wisdom of several competent psychiatrists who had known me for several years in some cases? What level of arrogance does it take to come to the conclusions that this man was? Far from listening to me, he was attacking everything about me. And this was a person who was supposed to help people with mental illness, not destroy them!
In the past I would have been a victim to these poor behaviours from the doctor but not anymore. But how many people are genuinely powerless in the face of treatment like this from psychiatrists and other clinicians? I have had a mental illness diagnosis for 25 years and I am only just getting to the point where I can challenge this sort of behaviour. Many people are taught to listen to doctors regardless of whether they are spouting hostility and nonsense. I don’t think this is OK at all. A doctor is a professional like any other. They can be great at their job but some of them are not great at all. And in my experience psychiatry is a profession which tends to attract arrogant people. Not to say all of them are arrogant of course but it is certainly an occupational hazard for this group. A lack of empathy is also a major issue for this group.
Being autistic and gender diverse really does seem to compound issues everyone else faces when dealing with doctors who fit the arrogant, ego-driven mould. Autism is barely known or understood by many mental health professionals and gender diversity is often viewed as a fad or just simply not understood, particularly – but not exclusively – by older clinicians. I often feel like my gender identity is seen as a sort of affectation rather than a deeply-held and essential part of what makes me who I am. Having people who are supposed to be helping me treat my gender identity as a passing phase is not only really offensive but also very hard to take when I an unwell.
I think the keys to changing this situation are firstly lot more training on autism and gender diversity for mental health workers and especially psychiatrists. Another thing which would help is developing a culture of listening to patients in psychiatric settings (*and I don’t use the term ‘consumers’ as it makes me really uncomfortable. If a person is in any part of a hospital accessing services from it they are a patient in my opinion). Autistic peer mentors and supporters in psych wards would also help I think and involving autistic and gender diverse people in designing facilities and services is a great idea – after all, we are the experts on being us and knowing what we need!
I hope the experiences I have had can be used as a teacher and I hope some psychiatrists read this. Everyone has the right to be treated with respect and understanding and to be listened to.