An open letter to all healthcare professionals
This week we’ve been thinking about Mental Health support, burnout, trauma and the autistic people. A year or so ago our Artistic Director who has lived-experience of PTSD, Mental Health services, Advocacy and MH Autism Research, wrote this ‘open letter’ to MHCP for a training session.
We believe in holistically supporting autistic people and that autism is not a mental health issue. Unfortunately, many currently believe it is and seem to blame ‘autism’ for autistic peoples poor mental health or see autistic people as being ‘treatment resistant’. We feel that the treatment is probably inappropriate. We believe these attitudes are a barrier to health care and denies autistic people the appropriate support they need, lowering quality of life. We are actively seeking to change outdated traditional and quite frankly ‘neurolithic’ views regarding Autism and mental health.
It was once said to me ‘Jon, because you can so eloquently describe what's wrong with you and the help you need you obviously don't need it’.
I was sat in a crisis consultation and to hear these few words was devastating to my sense of belonging and trust not only in the HCP in front of me but the system and society they represented. Being misunderstood is fundamentally distressing and this brought me closer to ‘leaving’ than any event pain or trauma that had gone before. Research is showing that being believed is fundamental to autistic people and plays a part in our sense of belonging and if disrespected it may put us on the path to giving up hope and suicide. I feel any conversation with a health care provider should involve trust, it should invoke a mutual trust but so often it does not and I'd ask the question ‘Do HCP trust us too?’
As other autistic people will know from their own experience just asking for help is one of the most difficult rock faces in the climb and to be disbelieved or dismissed means you will soon fall as they fail you. I fell so many times I learnt to try alternate routes on other mountains because trust I feel is so important and works both ways. To come and see a HCP requires our trust in them. That not only will they recognise what's wrong and give us appropriate care or treatment but that they will see us as innately human. This may sound surprising to you, and you may even say ‘of course we treat ‘people with autism’ as people’- which actually shows you don't. If you have to say person with autism to remind you that we're people there is something deeply suspect and wrong. For many years non-autistic people have been denied access to their narrative. We are autistic people. We are often seen as failed or broken non-autistic people rather than whole in our own innate right. I desire a sense of belonging, I want to receive acts of kindness in my pain. I want to be respected for who I am and to be believed in what I do and say. I want to be enabled to feel human as that is part of my healing.
An autistic person who is not trusted or believed when they tell someone something may create a huge chasm in their view of themselves and mental health. We're constantly told to ‘step forward’ and ask for help. Supposing that help is not there or it's so inappropriate that it's not just useless, but harmful? What happens then? I can tell you from experience were often gaslighted to cover up the inadequacy of a one size fits all system. This has happened to me in a group therapy situation where those who didn't progress or fit the rather poor therapy were told ‘If it's not working you're not trying hard enough’.
I was often shocked but not surprised by some of the attitudes and comments and became habituated to not expecting a positive outcome. Personally most of my experience was neurally useless or actively harmful. No wonder autistic people don't trust MHCP or go back when they experience furthers issues. We learn we're not stupid and can see through the ‘avoidance of learning from us’. Don’t look at our experience from your non-autistic eyes, you have to just accept that if an autistic person says something hurt them, then it really hurt them and just because it wouldn’t hurt you is nothing to do with it. My experiences are not your experiences but they're just as valid.
Please don't play the ‘autism blame game’ with us. We don't have mental health issues due to being autistic. We do often have them due to the way we're treated because we're autistic as we're often seen as broken. There seems a desire to fix us or cure us, to normalise us into ‘something inherently different’ that's not us which harms us and causes further misunderstandings.
Does it matter how or what trauma I have suffered if I show signs of trauma I will need help. If I can tell you I need help why does that exclude me? If I walked into a hospital with a broken arm would you tell me I can't possibly have a broken arm due to the way it happened which may not be on a list of ‘acceptable breakage. This happens to us with trauma, if we experience the world differently as autistic people then surely this not only the ‘good bits’ but the adverse as well? Autistic people seem to accumulate cultural trauma, betrayal trauma, epigenetic trauma and PTSD/CPTSD. It often takes just one little event after all that to knock us over which may seem trivial to the uninitiated.
Don't exclude us on the basis of autism. It's not that I think you're ignorant about autism or you have received no autism awareness training, it's what you think you're aware of that scares me. Most autism awareness seems to have been written by non-autistic people with no lived experience. Would you accept this deep lack of authenticity and respect suspect information for any other diversity group? No, I expect you would not.
I've been told all sorts of often repeated myths and stereotypes which may seem harmless on the surface but they may fundamentally ‘other us’, for example ‘Living with Autism* is far worse than living with PTSD’. We are often hurting, very distressed human beings when we sit with you and the last thing we need to do is fight your learnt or misplaced attitudes and what brought us there in the first place both at the same time. We often don't come as we don't know if it's safe to do so or if it's good, neutral or harmful. This is often judged by previous poor experiences where people have promised to help but let us down. The worst hurt you can inflict on an autistic person is to say ‘we will do this’- but then you don't, we will see this as a lie and a betrayal.
Autistic people who don’t have learning disabilities, who are not on benefits, who are not a mental health service user for any other reason, may fall through the gaps in Mental health or advocacy provision. We’re just as vulnerable, if not more, because the only option we have is to cope to survive. Through our smiles we’re often sat on the edge of a singularity, a mental health event horizon all the time you cannot see. If you were to stand on a tight rope all the time, you’d soon get worn out and fall but that’s what it’s like for autistic people who cope and are not on the radar for support because they're ‘seen to cope’ This is simply surviving not thriving and is not a life we'd or others would I feel choose to live for long.
What needs to change besides autistic people being coproducers of training, informing research and writing their on narrative instead of it remaining appropriated or stolen? Work with us, respect us and value our opinion. Trust us and see us as peer human beings and that there is a distinct and urgent need for an autistic informed mental health pathway. Coproduce our treatment and support with us, listen to us and if we say it doesn't work, believe us, if we say something does, respect us.
I’m not autism, I'm not the word, not the letters, not the spaces in between or the person in your imagination you think I should have been.
Thank you.
Jon Adams
*we don't live with autism, I'm autistic but I do live with PTSD and that's the difference.