Content warning: mention of abuse, neglect, suicide, hospitalisation, food, body image, mental health.
Autistic communities exist on and offline, some of them are based in charities, some of them are less formal, and some are Autistic led. They may not suit everyone but there is a choice for most Autistic people, if you have the required spoons and resources, to find and engage in these groups. Autistic groups can be considered support groups (if you have unmet needs or there are things you are still trying to figure out about your Autistic embodiment) or they may be social groups. Groups around shared interests are usually a great way for us to communicate and make connections with others.
Mental health community does not appear to exist in the same way, they tend to be based on the support group model, in which people explore their struggles out loud with people who may have similar experiences. Some mental health groups adapt a medical model of mental health, with the end goal that all mental health differences are eradicated so that members can live ‘normal’ lives free from the prison of their mental health differences. Thankfully, many of the groups I have joined support members with how to live with their mental health differences. These groups take a neuro-affirming approach, meaning they support the normalisation of thoughts, feelings and behaviours of their members.
Mental health spaces allow individuals to name and recognise their differences whilst giving them the chance to create strategies to best manage daily living. They can be based around long term experiences or more specific events such as grief or traumatic labour. Some weeks after the birth of my child, I went to a postpartum depression group. This was exceedingly helpful to me, as it showed me that what I was experiencing was normal. I could also share things in a room with people who really understood what I was going through. The issue with this group was that so many of us bought long-term trauma with us, making it a space where we had the potential to traumatise others and retraumatise ourselves. Despite this, I cannot explain how much help this group was to me and my son, it really did save me early on in parenthood.
Aside from those short six weeks, I am unable to find mental health spaces, in which people share moments of joy and parts of their everyday life experiences, as well as their episodes of poor mental health. Many of the online groups I have joined for support and community building around my depression, mood disorders and OCD, have made my mental health worse because they involve members sharing their trauma. These shared stories give my OCD something to hook into and become obsessive about and can also trigger deep-seated issues around my cPTSD.
The lack of trigger and content warnings within mental health spaces online have made them unsafe for me. In many online Autistic spaces individuals use trigger or content warnings to caution others about what they are sharing, such as warnings around suicide, abuse and hospitalisation. Usually, the writer will leave a gap between the warning and their main text so that readers cannot accidentally read something potentially harmful to them. I have seen these used far less in online mental health spaces, perhaps because there is a consensus that everything within those spaces has the potential to trigger. As an Autistic person, with lots of unresolved trauma, I would appreciate clearer rules of engagement and content warnings.
Even with these warnings, members of mental health spaces bring different experiences and perspectives to the group and can unintentionally discuss triggering information which has been normalised for them. Someone who has encountered lots of violence, for example, may not see the issue with sharing their experiences without explicitly warning others. Making content warnings also takes time to learn, only recently have I been informed that posts around food and body image should carry a content warning. As a person who has not experienced issues with eating disorders or my body image this was something I needed to learn to keep people in my community safe.
Are we really in this together?
The mantra of many mental health spaces is that we are ‘in this together’ yet support is difficult to give during your own mental health crisis or episode. Coming into a mental health spaces with other neurodivergence can make this even more difficult. Once we have passed the dysregulation which may stop us from looking for support or engaging in groups, we are met by group rules which we must expend large amounts of energy on to maintain membership of the group. The pressure to conform and to fit in is present in most of our lives as Autistic individuals and can be more focused when we are looking for support and connections. Group rules, as in most places, protect the majoritives within that group, in this instance non-Autistic individuals. As Autistic people we must constantly defend our thoughts and feelings and why they matter to be accepted into groups. It is difficult to constantly advocate for ourselves, and we shouldn’t need to justify our right to exist safely within mental health spaces.
In the process of trying to fit in, or understand the often-unwritten group rules, boundaries can easily become blurred, with the potential to harm group members. People with mental health differences, especially those of us who are also Autistic and / or learning Disabled, are at higher risk of harm from others. There are also issues around tone-policing in which Autistic people are penalised for the way our written word has been received. For the most part we say what we mean and mean what we say, often the subtext people see is what they add themselves. Within these groups many of us must constantly advocate for the way we talk about our own experiences. These groups do not understand or uphold Damien Milton’s double empathy problem, in which Autistic and non-Autistic individuals both struggle to understand each other. Us Autistic folks are told off for interacting ‘incorrectly’ in mental health spaces, we also struggle with engaging in mental health support elsewhere, so where do we go for support?
It remains difficult for Autistic individuals to access mental health support groups due to unwritten rules, tone policing and triggering content with no warnings. These spaces can be an issue for all members, whether Autistic or non-Autistic, as they focus on poor mental health and despair. A more social aspect which creates stronger community groups may be a better solution but, to my knowledge does not yet exist in the UK.