Something happened to me recently that I have never experienced before: My psychiatrist apologised to me for not following up on something in relation to my medication which could potentially have consequences for my health. It was not just the first time my current doctor had apologised, it was the first time any psychiatrist had, ever! I reflected on how telling and troubling it is that this was such a cause for amazement. I have had a diagnosed mental illness since 1995 when I was diagnosed with schizophrenia by a hospital doctor. I think I saw him two or three times. He pronounced this piece of rather significant diagnostic news matter of factly and told me I needed to take medication and left it a that. I went home and never saw him again.
I have spent twenty thee years accessing support form various mental health workers – in many hospital wards, with private system psychiatrists, public mental health clinics and telephone crisis teams. I have experienced arrogance, been condescended to and ignored, gained misdiagnoses resulting in even poorer treatments, victim-blaming when I was attacked physically and told ‘don’t be so annoying’, invalidated in many ways, underestimated over and over again and experienced some things which I can only really describe as torture. This has been when I was seeking support and assistance from people in ‘caring’ roles. There is evidently something very wrong going on here.
The mental health system has always seemed to me to be the enemy of my mental health. I always thought that some mental health workers were just sadistic and mean but I think there is something going behind all of that invalidation and victimisation. I should note here that many mental health workers are genuinely caring, kind and helpful and the issues are not universal. Unfortunately I hear many horror stories around accessing mental health services from others and sadly I have experienced a wide range of poor treatment over the years.
In addition to my mental illness, I am autistic. Apparently this adds layer of complexity around mental health services. Autistic people commonly experience mental illness conditions and the problems they report around accessing help are often quite similar to those I have. I think there is a real lack of information and understanding about autism in mental health settings but there are some other things going on which make it particularly hard for autistic people accessing services.
In the mental health world, the ‘consumer’ (I hate that word!!) is usually at the bottom of the pile in terms of the dynamics of health care. Mental illness comes with hundreds of years worth of baggage. People with mental illness have only very recently been ‘officially’ viewed as having rights and being worthy of respect. Until quite recently people with mental illness were taken outside of society and put in an ‘asylum’. Similar things were being done with some autistic people. Not only did we have pretty much no rights, we weren’t even visible to other people. Effectively we didn’t exist.
The specific issues around autism and mental health support seem to revolve around a lack of understanding what autism is and the needs of autistic people as well as a degree of respect and care.
Autistic people accessing mental health services have a number of things to contend with. Staff members in a mental health clinical setting see mental illness every day. They may view everyone they see through the lens of mental illness but autistic people are likely to have additional needs and concerns and autism is not a mental illness. Our mental illness symptoms may be expressed differently due to interactions with our neurology and experiences as autistic people. However, this often gets missed by the psychiatrist viewing every person only through that lens of mental illness. This can lead to unhelpful treatment and misdiagnoses. Our autism diagnosis can even be questioned, which is not only a negative in practical terms but can also be seen as an attack on our very identity – not something you want to happen when seeking support for a serious illness!
In a hospital setting, sensory issues might be overwhelming but it seems to be quite rare for mental health professionals to understand sensory processing disorder or know how to help address it. This unaddressed sensory onslaught can impact on mental illness symptoms, leading to a sort of catch 22 hospital admission were sensory issues are sen as mental illness symptoms and teated as such.
Meltdowns and shutdowns are likely to be misinterpreted by mental heath professionals. This can lead to some dangerous situations. In fact as many autistic people are empaths and pick up on the emotions of those around us, being in hospital or a health clinic with loads of other people who are depressed, angry, sad and confused is possibly the worst place to be when we are unwell with mental health issues. I always tell the crisis team that however bad things are, I would like to stay at home and feel miserable with Mr Kitty than subject myself to hospital and all it entails.
Many autistic people are so traumatised and mistreated in mental health settings that they simply won’t access help, no matter how difficult or dangerous their situation is. That is a sad indictment on mental health services and a terrible situation for people who feel they cannot access help.
This is a deep-seated problem with a huge impact on autistic people. The solution to address this range from high level, systemic changes to one-on-one strategies to change clinicians’ approach and understanding. Some things which may assist include:
- Building the autism knowledge of all mental health workers. This is not something one individual can do and needs a concerted effort to build knowledge and understanding. It can involve both macro and micro actions. I try to do this each time I have an appointment with my psychiatrist and also by doing things like writing this post.
- Creating a designated position for an autistic liaison officer in healthcare settings, including mental health settings
- Making available peer support with autistic peer support workers.
- For autistic people with mental illness, it can help to make an ‘advance agreement’ about your mental health needs, explaining your triggers and clinicians mustn’t do (e.g. physical touch) what helps and information about meltdowns and shutdowns. Ideally this should be done when you are not in crisis. You can draft this yourself or with your case manager other mental health worker if you have one.
- A culture shift with psychiatrists with a view of them being a facilitator for good mental health and not a boss-type figure
- And finally mental health clinicians and anyone with an interest in autism and mental health reading Emma Goodall, Jane Nugent and my book The Guide to Good Mental Health on the Autism Spectrum https://www.jkp.com/aus/the-guide-to-good-mental-health-on-the-autism-spectrum-34027.html
I am really glad my psychiatrist apologised. I want a world where psychiatrists and other health workers think nothing or apologising when they get it wrong. Health care should involve care for all of us not invalidate ad misery.