Note: 27th July 2020 – I was given some very useful feedback about the references. I have removed a source that according to a scientist friend was harder to justify than the other sources.
I’ve been away for over a month. This is because of a depressive episode I’ve spent the past few weeks recovering from. I will discuss my own recent episode, talk about wider implications to the autistic community, provide some links to other causes and at the end I have footnotes. Trigger warnings for mental health and eating disorders; also discussions of self-harm and suicide.
Over the past month, I had two weeks of being unable to function at all. I was in bed, playing video games, sleeping and not doing much at all. I couldn’t work, teach, exercise, read, write or take care of myself. The cause was a fight with a friend, guilt, two huge meltdowns and a catatonic shutdown, all within 48 hours. I was totally exhausted. I felt very little apart from shame and self-hate, bubbling away somewhere under it all. My spoons were non-existent most days. When energy came back it was fleeting and often in the form of anger towards myself. I considered giving up on autistic activism altogether, because I was an embarrassment to the community.
My partner was there for me all the way through. He knows what it’s like, having had a two-year depressive episode as a teenager. He was simply there, with the knowledge that things would get better. They now are, bit by bit. He left for a week to allow me to recover. This was a very good idea, allowing me to sleep and pay off my home loan to Tom Nook in Animal Crossing. The community of people I have around me has been a huge benefit too. Thanks to everyone who was there, particularly my autistic chosen family.
I also did far better than in previous episodes by actually slowing down and resting. In the past, I binged food, then vomited or deliberately kept vomit in to “get fat”, looked up things on the internet that I knew would trigger my PTSD. This to get me a shot of adrenaline so I could “keep going” and to punish myself. Now I know this only prolongs the time I need to recover. Instead I need time.
My experience of myself when I’m depressed is very shattered, inconsistent. I have written plenty of terrible poetry when depressed. Most of it is about my sense of self having shattered, like broken glass. Now I have trouble with my sense of self anyway. It is just that when I’m depressed it’s even worse. I know very little about myself when I’m depressed. All I know is that I’m diseased, fat and that me continuing to exist is an embarrassment to other people. When I see myself in the mirror, I don’t immediately recognise the face in it, but I see someone who is fat and barely human.
My special interests had no interest to me and when they did, I lacked the focus or energy to actually do them. I still have bad and good days, it is just that they start from a far lower level than regularly. Walking and resting works for me. Cooking, slowly, does so too. I haven’t written since June 18th. On the good days, I have about 60% of the energy I have on an average day. On the bad days, I cannot leave my bed and don’t like it in there either.
The thing that helped is by saying to myself that I’m ill. That I need the time to recover, as I would from any other illness. I’m still not there, but I’m on my way. Reducing my medication has helped hugely – my recovery time is far faster than it was before. In the meantime, I’m applying for jobs, I’m seeing my therapist next week and I’ve been getting back into doing autism-work. I will share the video of the Autistica panel I co-chaired when they upload it.
Let’s move in a bit closer on the issue itself. What is depression for autistic people?
To begin with, depression is a mental disorder characterised by consistent low mood over a protracted period of time. In fact, depression is the leading cause of disability in the world right now and the second leading cause of death in 15-29 year-olds¹.
Autistic people are particularly vulnerable to depression, suicidal ideation (thinking patterns around suicide, including planning suicide or getting one’s affairs in order to do so), attempting and completing suicide. We are four times more likely to have diagnosable depressive disorders². On average, autistic people die 16 years younger than their neurotypical peers³. Causes of death are primarily due to injury and poisoning, as well as a greater propensity for heart disease⁴. Suicide is a major cause of death for autistic people over and above our neurotypical peers⁵, autistic women are particularly at risk⁶. More research is needed to clarify this, but even more than “accidental deaths” (deaths due to medical treatment tested for neurotypical bodies rather than ours), it is likely that suicide is the leading cause of death in our community.
Allow that to sink in for a moment.
Depression shortens the lives of our community and dramatically reduces our quality of life. Yes, depression has a genetic component, but depression and autism are not causally related. Autism does not cause depression. Being autistic and neurodiverse is a discriminated-against minority identity, which in this society means that we are more vulnerable to ‘minority stress’. This is an umbrella term used to refer to the mental and physical results from being discriminated against, masking and suffering inequalities. An example is that Black Americans are more likely to develop heart disease and diabetes than their white counterparts due to consistent inequalities in access to housing, health care, education and safe working environments. Depression is not inborn. It is due to the way we are reacted to from a very early age. I remember wanting to slit my wrists when I was six, due to feeling depressed – then bullying myself out of it and laughing at myself for being so pathetic. But I was not born with this. I was already undergoing bullying and abuse. I did not dare tell anyone about it for fifteen years.
If you are affected by any of these issues – which I hope you are – I hope that together we can make some significant changes. First of all, we need more research into supporting autistic people and saving lives. Autistica is the UK’s leading research organisation into autistic lives: https://www.autistica.org.uk/. Secondly, we need better autistic representation in organisations across the country. Get in touch with your school/college/workplace to make your environment less harmful to our community.⁷ The rest, though, is political. If you like, I can draft an email you can send to your MPs on how to reduce the health inequalities faced by autistic people.
I will dig deeper into autistic depression and how it manifests itself next time. What are your experiences with depression? I’d love to hear from you in the comments.
Lastly, a few links. Matthew Rushin is still behind bars. The Gofundme has been very successful, but his family needs more funding to challenge the horror that is the US legal system. Find him here at: https://gf.me/u/x69rdv
My friend Harry Wright is an autistic comedy genius and his video series Autism 101 is a brilliantly funny look at how to survive modern life while autistic. Like, subscribe and enjoy over at: https://youtu.be/m4vjN610xgU
My friend Tiffany Williams is a writer. She blogs about trying to find love as an autistic woman and her favourite books about people on the spectrum. Find her at: https://loveautistic.com/ Tell her I sent ya.
Following my chairing a session at the Autistica Discover Conference 2020, I will be chairing three events at Autscape 2020. The tickets have gone, I fear, but inform yourself about how to take part and future events at http://www.autscape.org/
If you are feeling suicidal and you are in the UK, please contact the Samaritans: 116 123 or email email@example.com⁸
⁷ As this is now my job, please use me to help you with your conversation. I mediate and train organisations, including HR departments and those in leadership roles. Share this website with them, my email is firstname.lastname@example.org. If you would prefer me to have the conversation on your behalf, even anonymising you if that is what you prefer, I am happy to support. I will not charge you personally for making changes that your organisation should already have made themselves.
⁸ There is currently no helpline for autistic people to call if they are experiencing distress. This should change as soon as possible, since the needs of autistic people in distress are significantly different to those of neurotypical patients. If you are interested in setting this up, get in touch. I would love to help you develop training schemes for a helpline.