I am at Melbourne airport, waiting for my delayed flight to leave for home. I just had to get a replacement boarding pass and handed mine in to get a new one for the cancelled flight. The flight attendant said ‘Doctor Purkis?’ and I replied ‘Yes’ quite confidently – this fib was easier than explaining why I was incorrectly titled as a doctor.
The reason for my undeserved Doctor-ing was that last night I spoke at a conference for paediatricians and psychiatrists who work with people with ADHD and Autism. The events company organising the conference must have just thought all the speakers were doctors, hence the mix-up.
The presentation was one of the best talks I think I have done – not so much due to my delivery or even the content of my slides. The beauty of my talk yesterday was the audience of around 150 psychiatrists and paediatricians. I did a rough calculation that if each of the 150 or so medicos at the event were treating 10 neurodivergent children, then my presentation would have an indirect but probably significant impact on 1500 people. In fact the true figure is probably larger. The reach of my presentation yesterday could be some kind of fractal expansion of advocacy….(OK, I’m getting a bit silly, but it is a big reach.)
Anyway, enough self congratulation. I was actually very anxious before giving this talk. I wondered if one of the more difficult psychiatrists from my past would be up the back of the theatre, heckling me and saying I didn’t have Autism. Of course no such rudeness occurred. Deeper anxiety was about how well my message would impact on the crowd, I had been given a huge opportunity to influence change and I wasn’t sure whether I was up to the challenge. My self criticism threw around such thoughts as ‘Oh, are you going to do a little talk about being crazy and hope the actually important people care?’ Thankfully my self critical side was voted down and the event went well.
My brief twas to give an after dinner presentation on ‘patient advocacy’. I don’t do a lot of mental health-specific talks so thought this would be a great opportunity to think about mental health advocacy linked with Autism advocacy. I had twelve slides – mostly my memes or images illustrating the content. I spoke on the topic of my own mental health and issues I have had accessing assistance, and then on what I felt needed to change in psychiatry to support people well. Then I talked about attitudes and attributes clinicians should encourage in people accessing their services and finally I spoke on things clinicians can do to improve their competence an confidence around assisting people who are neurodivergent and have a mental illness. I even included my quite new dot point on the reason Autistic women are so frequently misdiagnosed with borderline personalty disorder (I actually ran this past my psychiatrist at a recent appointment to make sure I wasn’t just making things up!)
Yesterday’s presentation was very much within the framework of advocacy I call gentle power – working with not fighting against. I recognise sometimes getting bolshy is truly useful but I’m actually not very good at it! Bolshy or not, I had the audience the whole way through. There was no talking up the back and no looking at phones. At the end there were heaps of questions despite the fact that dinner was being served. I had a number of the clinicians come up and say how much they enjoyed my talk and they took my business cards. The oddest and perhaps most disappointing response as when a few of them commended me for doing this ‘new’ work. I have been doing advocacy for over 12 years and others were doing it before me. It is far from ‘new’ so it worries me how the message isn’t getting through to the doctors. This is evidently a new area of work for my advocate colleagues and me to work on.
Some of the points I made in the presentation were:
- It is important that clinicians and those they are treating / parents of those they are treating view themselves as being on the same team, aiming for the same goal.
- Don’t be scared of advocacy. Whenever I am sent the evaluation sheets for a talk I am delighted if they say ‘five out of five. Jeanette was awesome’. That is lovely but it doesn’t teach me anything! Much more useful when someone gives me constructive, critical feedback. Feedback like that enables people to improve what they are doing.
- People with mental illness – particularly those in public health care – need more respect. It is not OK to put up a huge great screen to separate clients from reception staff at a clinic or to keep doors to consulting rooms locked from the inside when there is nothing dangerous in there. Certainly some people with mental illness are violent, but look at it this way: people who drink alcohol excessively are often violent. Imagine if you went to your local pub on a Friday night and found a huge big screen separating you from the bar staff in case you were violent. Pretty offensive and would almost certainly get one of those tabloid shows like 60 Minutes doing a strongly worded piece about the ‘nanny state.’
- I also mentioned how service failures tend to be based in a lack of understanding, knowledge or clear communication. For clinicians knowing more about Autism and neurodivergence generally is a really good idea because knowledge = power with these things and understanding could reduce misdiagnoses and damaging ‘treatments’ and counterproductive interventions.
- I also talked about social value – the idea that our attributes and activities can result in us being socially valued or socially devalued and how this impacts on our view of ourselves and mental health. An example of social roles would be ’Jeanette is an author’ versus ’Jeanette is a criminal’. These self-perceptions and the perceptions and judgements of others based on our social roles are crucial to address when trying to get out of disadvantage which so many people with mental illness experience. I told the doctors that they had some responsibility to help their clients on the path to building their social value. Clinical practice is not just about addressing symptoms of illness or a health condition.
The presentation was a pivotal moment in my career I think. And gee I love what I do! ‘Doctor’ Jeanette had a lovely trip to Melbourne and looks forward to cuddling her little black kitty therapist when she gets home.