In 2022 the Autistic Collaboration community is in the process of co-creating and operationalising peer support services for Autistic Trauma based on the lived experiences of Autistic people all over the world.
Our experience is that genuinely safe environments, where people can nurture trusted relationships, and learn to extend trust and appreciate trust that is extended to them, is essential to reducing Autistic anxiety to much lower levels. However, reducing chronic depression, based on the knowledge that we live in a sick society that is destroying this wonderful planet and that normalises extreme levels of social injustice, is much harder.
The encouraging feedback we are getting tells us that we are on the right track on a number of fronts, but there is much more good work that needs to be done.
Elevated rates of depression, anxiety, and suicide apply across the entire Autistic population. These co-morbid conditions are a reflection of experiences made in the social environment rather than a reflection of Autistic neurology. The exploitative nature of our “civilised” cultures is top of mind for many Autistic people. The box of constraints that W.E.I.R.D. (Western, industrialised, rich, Democratic) monocultures impose on neurodivergent people is reflected in our mental health statistics.
Our approach is based on the principles of evolutionary design and will be articulated in the evolving language for co-creating ecologies of care. The knowledge that we are all trying to do our best and that we all care deeply about each other keeps us going. As needed we assist each other in slowing down to prevent burnout.
It is impossible to express everything that is going on inside us, because linear language is a poor tool, and also because the capacity of our own understanding is limited. We can’t know everything. We can only discover some things about ourselves, about each other, and the world. It’s a dynamic process that never ends. And it only works in a world of mutual trust. That’s why the world around us feels so broken, because people in a deceptive world understand nothing about themselves, and nothing about anyone else either.
Trauma is propagated between generations. We have to find ways of breaking the cycle without destroying those who are the most sensitive, who are the only ones capable of nurturing ecologies of care not based on power and manipulation. The question of the evil of coercive power has been with me since I was a child. Coercive power is the root of all evil. Those who are capable of resorting to coercive power on a regular basis are the ones destroying and killing the entire planet. There is infinite timeless wisdom in the social norm against the emergence of any social power gradients. When civilisations erase that norm, unimaginable suffering unfolds.
– Jorn BettinFor Autistic and otherwise neurodivergent people, pain is more emotionally intense. We might even be called codependent due to our deep emotional attachments to the people we love. It takes years for us recover from misunderstandings, emotional disappointments, break ups, and losing loved ones. We have our people and we are very loyal to them even in the face of being betrayed. We are loyal to the people we love while we are betraying ourselves, again, again and again. And we have an infinite amount of empathy. Animals are sentient beings and we are not entitled to decide which one should live or not. I sometimes feel I can die due to an overdose of empathy.
– Ulku Mazlum
Modern families have been atomised to an extent where many Autistic people don’t have people within their biological families who genuinely understand them. The education and work environments in industrialised monocultures are so hypernormative and constraining that neurodivergent people are routinely traumatised. Hypersensitive Autists are simply the canaries in the coal mine, the first ones to be crushed unless they have access to a genuinely safe place in this world.
Autistic people all over the world suffer because we are put into impossible situations. And then we are pathologised. We are made out to be the problem. No. The system is the problem. And hypersensitive Autistic people can see this with full clarity. We know how impossible situations feel. We must find ways to write and talk about these impossible situations in a way that others can relate to, so that less sensitive people can start to feel at least some of the pain. Only then do we have a chance of not getting crushed by the society around us.
Together we’ll find ways to turn our experiences into tools that can help all Autistic people. We don’t yet know how, but we’ll discover it together.
Draft User Guide
Call for participation
We invite our Autistic peers (you) to contribute lived experience, as needed anonymously, so that we can co-create services around the diverse needs of Autistic communities.
You can can register interest and contribute to this Autistic Collaboration peer support initiative on this page.
- Autistic mutual aid – a factor of cultural evolution - May 7, 2023
- The possibilities and limitations of human agency - May 4, 2023
- Hypernormative Culture Awareness Month - April 2, 2023
10 Responses
Great article; We are trying to build similar online and real world spaces. We should connect Jorn
Many thanks for the encouragement Luke. Yes, please get in touch and we can explore how to best collaborate and assist each other. You can take a look at the growing list of peer support services that we are coordinating and curating at https://autcollab.org/projects/peer-support/. We are seeing the emergence of intersectional ecologies of care by and with Autistic people for Autistic people https://autcollab.org/community/neurodiventures/.
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I don’t know if there is such a thing as a genuinely safe environment. I left Reddit after being trolled by other people on two different autistic boards that were well moderated. On this site, one person completely misunderstood one of my posts and accused me of bullying my students. Since I have dedicated most of my adult life to teaching and am now in my 33rd year of instruction, I took exception to this comment because this person appeared to be disparaging my entire career.
Neurotypicals do not have a monopoly on callous and insensitive behavior. By its very nature, the internet often provides a cloak of anonymity that lends itself towards people who will then make horrible comments of the sort that they would never have said during a face to face conversation. It is for this reason (and the fact that I am predisposed towards being a reclusive introvert) that I keep to myself when I am not at work. 61 years of life have taught me that some people are just mean spirited and it doesn’t matter whether they’re on the spectrum or not.
It does not help that I was emotionally and physically abused as a child and that my father kept verbally abusing me well into my 50’s. This abuse only ended after I turned sixty and realized that my father would never change. I subsequently terminated our relationship and will not have anything to do with my father. I think this experience has made me acutely sensitive to personal attacks regardless of who makes them. It’s likely that this is also why I have chosen to adopt the lifestyle of a reclusive introvert. A reclusive lifestyle minimizes contact with others.
I am sorry to hear that your family continued to be a source of abuse and trauma until well into your 50s. Sometimes suspending or ending a toxic family relationship is the only option available in order to prevent further abuse. Many of us who are committed to developing peer support services are in a similar situation or have been in a similar situation with our families. This is a major motivation for co-creating peer support services. Quite a number of Autistic people have never experienced a genuinely safe environment, or if so, only for limited stretches of time and confined to small parts of their lives. A safe environment can’t be created by declaration, it has to be experienced. Safety is an emergent quality of the relationships in an environment, and it can only emerge if a person in a position of relative safety extends trust to one or more other people who may not yet feel safe at all. Safety may take a very long time to emerge.
The Autistic Collaboration community is growing slowly, at a rate that reflects the speed limit at which participants feel able to extend trust to newcomers without endangering their own sense of safety. Fortunately, my experience is that once you are are part of a small ecology of care where you have a handful of safe relationships – which can take many decades for a traumatised Autistic person to achieve, you are in a position to extend significant trust to others. In fact I would argue it is a position where you are obliged to extend significant trust to others, in order to incrementally extend the scope of safety to a broader circle of people in less fortunate positions. You can only travel at the speed that feels safe from your perspective.
It is really sad to read about your negative experiences online. I always warn people to never confuse the public internet with a safe space. The internet is far too big to feel safe, especially for sensitive and traumatised Autistic people, and many platforms by design have been “optimised” for maximum “engagement”, which always involves conflict beyond the level at which most people still feel safe.
Thank you for your reply. My past is what it is. While part of me wishes that some things in my past could have been otherwise, I also recognize that I would not be the person I am today if I had not had these experiences. As Friedrich Nietzsche once observed, “What does not kill me makes me stronger.”
I will visit your site.
I tend to be a prolific writer. Neuroclastic currently has 7 of my articles pending review. Some of them have been in the pipeline now for over two months. I could just as easily write elsewhere. We shall see.
“These co-morbid conditions are a reflection of experiences made in the social environment rather than a reflection of Autistic neurology.”
My ND partner and I (NT) have been discussing this for a while now, and we fully agree.
Put an autistic person in the right environment, and they will thrive wonderfully, contributing to the world.
But if we keep forcing them to mask, they will inevitably fail at career, relationship, etc., and then we’ll hear autism is to blame.
Enough!
Time to create a new world.
Your kind and encouraging words are much appreciated. Autistic people need many more trustworthy allies like you. Indeed, we are incapable of living or feeling alive in a dehumanising and life (i.e. diversity) destroying world. We all attempt to create our own safe worlds, and quite often, the isolated Autist is the only human in that world. Autistic sensitivities are not comparable to what is considered “normal”. Luke Beardon makes this point very eloquently in his book ‘Avoiding Anxiety in Autistic Adults: A Guide for Autistic Wellbeing’ regarding Autistic levels of anxiety. It’s anxiety on a different level of scale. Similarly, in the complete absence of safe relationships, the impact of chronic depression on Autistic people is severe.
Wow all of the above has so validated my whole life, where I have ‘failed’ in relationships and end up walking out on all of them and being wholly blamed for it, when all I was trying to do was feel safe and if not, my only other option was to walk. Had a breakdown at age 24, (66 now) was diagnosed Aspergers when I was 53. I was the extremely sensitive, empathic one who could see at age 5 that my mother was very abusive and the other 3 siblings couldn’t see what I could and my relationships with my siblings are still affected even now i.e. I was the troublemaker in the family, I was targetted very much by my mother for the abusive verbal and physical assaults all through my childhood and younger adult years. Sadly yes we will never fit in to this world, and who really would want to??? An Autistic Community, dare I even think I will be accepted there and seen for who I really am, which isn’t so bad after all. I shall watch this group and see where we are going with it but feel hopeful.