Help should be helpful – autism and mental health professionals

I will preface this piece by saying some mental health workers are amazing and caring and make a big difference….and also that, for a variety of reasons, some are not.

I have a mental illness in addition to autism. I have had this illness since 1995 and it is nasty. It goes by the name of atypical schizophrenia and often seems to want to destroy everything good in my life. I have taken major medication or this for almost 25 years. Medication takes the edge off but life can still be very difficult. My illness means I often find myself in need of help – from friends and family and also from mental health professionals.

Now I know this because i have a mental illness and am autistic plus I know many others with similar experiences – mental health professionals are not always very clued up about autism. Sometimes accessing help from professionals can be a nightmare. Autistic people have a range of things which impact on the presentation of mental illnesses if they have one. Things like mental illness conditions looking different to the same condition in an allistic person, alexithymia (meaning  it is hard or impossible to access and articulate one’s emotions) and a difficulty in realising it is appropriate and a good idea to ask for help can make things difficult. These issues are often compounded the by attitudes of some mental health workers who do not understand autism. They may:

  • Misinterpret behaviour as being manipulative – which it almost always isn’t
  • Preconceived and incorrect notions of what autism means
  • Ableist attitudes and a deficits view 
  • Misinterpreting autistic people’s words
  • Viewing everything through the lens of mental illness and not neurodiversity

One of the main issues which can happen is that a person gets a misdiagnosis. I even know of autistic people who  have sought assistance for mental illness and had their autism diagnosis invalidated and even cancelled. Thinking about how much a diagnosis can be a strong part of identity for autistic people, this horrifies me. Surely assistance is meant to be helpful and seeking help should make things better, not worse?

A mental heath worker can have such a massive impact on your sense of well-being and your mental health. A worker that isn’t proficient at their job can be damaging or even dangerous and a good one can make your recovery that much easier. What clinicians say and how they act can be very important to us when we are unwell. A positive comment can be amazing but a negative one can be highly upsetting. I remember a psychiatrist in hospital telling me that I was ‘too cool to be autistic.’ I’m sure it was meant as a throw-away line but it really upset me for many reasons, mostly that I am an advocate so my autism diagnosis is a pretty important part of who I am and what I do!

I get a bit wary of accessing help given some of my experiences in clinical settings and the invalidation which can and does occur. This is not good when I have a serious mental illness which is in need of medication and regular psychiatrist visits.

So what is the solution to this? I don’t want to tell people not to access help if they need it. 

I have a few strategies that I use to improve matters. These include:

  • Of course the obvious one – advocacy and activism to change attitudes around autism and build understanding and respect.
  • It would be great if training for mental health workers included a significant and detailed autism component and ongoing accreditation required that workers do further autism training.
  • Writing down what I want to say when accessing support. This can help avoid me getting overwhelmed if the worker I’m speaking to is being unhelpful. It also gives a good structure to the conversation. 
  • Asking a friend or family member to come with me to appointments to do a  bit of advocacy on my behalf.
  • Be really informed about my illness. Know what meds I take, what dosage, know my triggers and what makes me feel better. I consciously build my sense of self-awareness, which is hard but generally very effective. Workers also tend to respect a person more who is self-aware.
  • Use an advance agreement or similar. An advance agreement is something you can prepare, preferably with your doctor or mental health worker. It lists what you want done if you are unwell – who you want told, how workers should treat you, what your triggers are etc. This does require that health workers read it and take notice but I have found it to be a really useful strategy.
  • Assertiveness is a wonderful quality and can help improve how mental health workers interact with you. Once again it can be tricky to acquire but there are courses you can take and I find it is a skill which improves with practice.
  • Seeing your time in clinical settings like hospital or talking with support workers as an opportunity to build their autism knowledge as well as their understanding of you and your needs. 
  • Being proud of who you are. This is extremely important. Self-esteem and self-love are great protective factors against invalidation. If you think and project the view that you deserve respect it can be more common for people to give it to you.

When you access help for anything it should be helpful. Sadly for autistic people – and others – accessing mental health assistance is not always vey helpful at all. This is not good enough. We need support when we are vulnerable, not blame and misunderstandings. Some extra autism knowledge among mental health clinicians could make such a difference.

I want a world where health professionals - and especially mental health professionals - listen to and respect autistic people

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