This is a post about services. Could you imagine how you might react if you called a plumber and they came over and were so inept that they made the issue you needed fixing worse? Or if they turned up and smashed up your the toilet? And could you imagine if they denied that anything wrong had happened even if it was obvious to everyone that it had? You would rightfully be pretty pissed off I imagine. You accessed a service hoping it would help address something serious and instead it made matters much worse. That is very poor service delivery. Yet when many people – and many autistic people particularly – access mental health clinical services the metaphorical smashed toilet is all too often what they experience.
I will preface this piece by saying that I know there are some great mental health workers and my concerns are more directed at the mental health system and attitudes than individual staff members.
In many of the times I have sought help for my mental health issues, a number of factors have combined to effectively smash my (metaphorical) toilet. Autistic people trying to access mental health services share similar stories with me quite often, as do their parents and others who love and care for them. Crisis phone lines are a frequent source of misery and angst. For someone in crisis it is hard enough to bring yourself to make the call. It is anxiety provoking, especially for people who dislike or have high anxiety around using the telephone. In my experience the common horror stories people report after using crisis support services centre around them being treated like they are a child or that they are just wasting the clinicians’ time. I’m sure this isn’t intentional on their part but being on the receiving end makes many people reluctant to use these services even when they are actually in danger. Psychiatric wards are another place where invalidation happens on a regular basis. Autistic people are frequently misdiagnosed and as diagnosis trends to determine treatment for mental health issues, this can result in inappropriate and ineffective treatments and can even be dangerous. Stereotypes around autism are frequent. I remember a psychiatrist in hospital once telling me I was ‘too cool to be autistic’. While this was probably a throwaway line it horrified me. I had written a book on autism and gave talks at conferences and at schools. Surely my T-shirt and Converse sneakers wouldn’t preclude me from autism advocacy?
Most of the issues I have experienced in psychiatric services are focussed on a poor knowledge of autism by mental health clinicians. Autistic communication can be ignored or be incorrectly seen as a symptom of a mental illness. Autistic people frequently get seen as manipulative when accessing mental health services. This is preposterous given that autistics tend to operate on one level and many are incapable of deliberate manipulation! Being labelled as manipulative in clinical psychiatric settings is not a good thing.
Autistic people can be utterly baffled by what is going on in clinical settings. The experience can be invalidating and traumatic for a number of reasons including being verbally or physically attacked and bullied in clinical settings – and not always by fellow ‘consumers’ (and when someone comes up with a less offensive term which encompasses ‘consumer’ without the ickiness please tell me. I’ve been trying to find one for years!!). People who have hyper empathy can find hospital settings overwhelming and horrific as not only do they feel terrible anyway but they are also surrounded by other people feeling awful and feeding into their mood. If autistic people have meltdowns in clinical settings and staff do not understand what is going on this can result in a lot of misery and even legal sanctions. There can be a lot of inconsistency in mental health care, particular in hospital settings. This can add hugely to anxiety. Autistic people may respond differently to expected with medications. Being in a hospital setting for anyone usually seems to result in invalidation and condescension. But for autistic people this can be a huge issue. The frustration at trying to tell a nurse or doctor that something is upsetting or stressful or that they have misunderstood a vital part of your description of what is a problem for you can be off the scale.
Going into a mental health clinical setting is often highly disempowering. I have always felt like I was thought of as difficult in hospital. But I think a lot of the issues outlined here could be more effectively addressed if clinicians in crisis teams and psychiatric wards knew a lot more about autism. If there was better understanding of autistic ways of communicating, more listening to people’s experiences and what is difficult and what we need to be done differently. Psychiatry is unfortunately a profession which has a lot of hierarchy inherent within it. I think everyone would benefit if some of that hierarchy was revisited and a more collegiate, listening approach taken where people accessing services were respected and listened to.
I think that a lot of the metaphorical toilet-smashing comes from ignorance and a lack of understanding the needs of autistic people accessing mental health services. Last year I gave a talk to a room full of psychiatrists. They absolutely loved it – which was good. The issue I saw was when all of them that spoke to me said ‘I love this emerging work you are doing Jeanette’, to which I replied ‘I have been doing this since 2005.’ We need more understanding of autistic experience in mental health services – a LOT more of it. Simple as that. If we don’t then the experiences that myself and so many others have when trying to access help will be as useful as that smashed toilet.