Article: Suicide prevention from the perspective of an autistic person
In this blog we hear from a member of our Lived Experience Network who shares their experience of being autistic and how being diagnosed has helped them to better understand themselves, have more self-compassion and manage their suicidal thoughts.
This blog includes reference to suicide, suicide attempts and suicide ideation in relation to autism and late diagnosis.
My experiences
I am a late diagnosed forty-something autistic woman who has regularly experienced suicidal thoughts since childhood. I’ve survived suicide attempts, my last one being over ten years ago. Suicide rates for autistic women are particularly high, and I hope by sharing my experiences, they may help prevent suicides.
During the decades that I had no idea I was autistic, I experienced suicidal thoughts, self-injury, alcohol misuse, disordered eating, and many other ‘unhealthy coping mechanisms’, yet on the outside I was a capable, intelligent, and ‘successful’ person.
Though I’ve excelled at exams and work, I take things incredibly literally, I struggle with regulating my emotions, with socialising, and maintaining meaningful relationships. I’ve experienced periods of being ‘silent’ (mute) and wasn’t able to communicate my thoughts and feelings in an ‘acceptable’ way to my parents, peers, or health professionals.
I felt totally misunderstood, as though I didn’t fit in with the world. Gradually with a LOT of self-work and ‘accidental’ support and encouragement from a few colleagues, past and present, I stopped my ‘unhealthy coping mechanisms’, but still experienced suicidal crises.
Autism diagnosis
For the past 15 years I’ve had several health professionals tell me that I’m autistic, though only definitively recently.
It’s a pity that all of those professionals (including a post-diagnostic pack from one organisation) failed to mention that suicidal thoughts can be very much linked to autistic meltdowns and / or autistic burnout, that autistic people can get fixated on certain phrases, or to mention the potential link between autism and suicide. Talking about suicide prevention with me does not ‘put the idea of suicide in my head’.
I think I would have found it so helpful to have known the link with autism and suicide much earlier in my life, so that I could have had positive preventative conversations and put a personal self-support plan in place much sooner. Since I’ve discovered these things for myself, I use this information to my advantage.
I’ve put strategies in place to minimise the chances of me having a meltdown and if I’m going to get fixated on anything, I try to make it something positive. This takes a huge conscious effort on my part, but it does seem to help me.
Knowing that I’m autistic has enabled me to better understand myself and to therefore undertake appropriate self-help, self-advocacy, and to ask for support from friends, relatives, and colleagues. Talking to other autistic people has helped me to understand my experiences and feel less alone.
I concentrate on what I can learn and change to help me to become as mentally ‘well’ as I can. I also know that external factors influence my personal suicide prevention.
Here are some things that I wish more services / supporters would understand about my suicidal thoughts:
– My thoughts feel real – When I’ve had thoughts of suicide they have always felt 100% real and ‘logical’ and if I get to the stage of planning to act on them, I’m convinced that suicide is the only ‘logical’ thing to do.
– For me, there isn’t usually an obvious cause – Suicidal thoughts sometimes ‘just happen’ and there doesn’t seem to be a particular trigger, or the trigger seems very minor.
– Emotional dysregulation – My emotional dysregulation has a huge negative impact on me and those around me, and I think this is something that leads me to suicidal ideation ‘so that no-one would have to ‘deal with that/me’. Understanding that this happens to me is helping me to manage my response better and I wish more supporters understood this too.
– Quick escalation – I can very quickly have thoughts of suicide and I’ve never said I’m having the thoughts if I’m not (I struggle to understand the concept of anyone ‘pretending’ to have the thoughts as surely that would be a sign of needing support, in any case). Please believe me when I say I’m having suicidal thoughts.
– There is a suicide prevention ‘window of opportunity’ for me – I have never acted totally impulsively on suicidal thoughts. I’ve always had a thought-through plan, and taken time to be ‘sure’ that it’s the ‘best thing to do’. There is huge potential here to prevent my death by suicide by giving me the psychological safety to tell you that I’m having suicidal thoughts as soon as I start having them and not waiting until I’m about to act on them.
– Crisis prevention planning in advance works for me – Ask me when I’m ‘well’ what I need when I’m not ‘well’. The key thing here is for people to follow through and act on our agreed plan if I do become unwell. I’ve had too many incidences where originally well-intentioned supporters don’t support me when I tell them I’m unwell and all this does is lead me back to silence and secrecy about how suicidal I feel.
– Clear and honest communication is vitally important for me – It’s ok for you not to be able to support me, simply don’t promise me that you will and/or clearly communicate with me when I’m well that you will no longer be offering future support.
– “This shall pass” doesn’t work for me – Even though I’ve experienced suicidal thoughts for decades, when I am having the thoughts it seems to be impossible for me to think “I’ve been here before and this shall pass”. I seem to need a current, ‘logical’ argument not to act on my suicidal thoughts to help me get through them. Once I get to this stage (which I try to prevent) I do seem to need some external person / factor to help me and this is very frightening for me. To be ‘reliant’ on someone else is terrifying because I don’t currently believe that I can rely upon anyone to help me. This is especially bad when designated crisis services seem to think it’s ok to tell me that ‘I have capacity’ when I’m in crisis. This is incredibly dangerous for me and is the reason why I won’t engage in many services now. They don’t help me to stay alive and often have the opposite effect.
– However, I will not stay silent – Silence and secrecy are what nearly killed me. I refuse to be silent and I only wish that more people would see sharing of suicidal thoughts as help seeking and not ‘attention seeking’. If I’m telling you about my thoughts it’s because I want help to get rid of the thoughts and for some reason I believe that you might be able to do something to prevent me from acting on them.
– ‘Silent listening’ doesn’t work for me as my ‘logic’ will assume that you agree with my ‘logic’. I need to be explicitly told that it is a bad idea to act on the suicidal thoughts, that I shouldn’t act on them, and that you don’t want me to act on them.
– ‘Steer’ me towards a positive future, rather than looking back on the past. I’ve spent most of my past life suicidal and reminding me of this doesn’t help me. The best thing you can do is tell me that you want me to stay alive and to feel well, and that you believe that I will be able to feel well in the future.
These thoughts are my unique experience and perspectives as an autistic person and may or may not reflect your experiences; I’m sharing mine for you to take from them what you choose.
Acceptance
Accepting that I am autistic isn’t easy and is an ongoing process for me, but accepting that I think differently to most people, that I live alone and am childless contrary to societal expectations, and that I have what some people consider to be ’boring’ hobbies, has helped me.
I now have so much more self-compassion, am honest with myself and with other people about my thoughts, and autism isn’t my identity. I don’t think I’ll ever be ‘proudly autistic’ and I wish I didn’t have the challenges of being an autistic person, but I’m glad that I was finally able to be honest to health professionals about my experiences, to get the ‘right diagnosis’ for me, and to use my new knowledge and understanding to focus on living as well as I can.
Given the suicide statistics, I think that there needs to be more conversations with a wide range of autistic people so that everyone can have a better understanding of autistic experiences and help to reduce our suicidality. I feel hopeful that we can improve those statistics through purposeful conversations with people with lived experience; autistic people, the people supporting us, and the people working and living alongside us in whatever capacity.
Thank you for reading my blog, one way you can be part of suicide prevention conversations is by becoming a member of the NSPA, if you aren’t already, and participating in the NSPA facilitated online discussions.
Support
If you need support with your mental health and wellbeing, support is available:
– The National Autistic Society website has information on how to seek help for your mental health, including a link to their Autism Services Directory which allows you to search for counsellors in your area.
– If you or someone you are working with needs to talk, Samaritans are available 24/7 on 116 123 or email:jo@samaritans.org
– Text SHOUT to 85258