Autism is often conceptualised as a condition which nullifies a person’s ability to socialise. Because of this, Autistic people are often viewed as asocial and devoid of community. Despite this, the Autistic community is a rich and vibrant place with a sociality all of it’s own making. As I discuss in my book The New Normal, Autistic people can be better conceptualised as being AuSocial than asocial, with a culture, language, and social customs that are far too often ignored by those who wish to paint us in a tragic light.
In terms of community, we know that humans are inherently social beings, indicating that the belief that we lack sociality and community is one of the many ways that Autistic people are dehumanised by normative society; but just what is it about the Autistic community that is so vital for us?
Community and wellbeing
Jose, Ryan & Prior (2012) indicated that in adolescents, there was a positive relationship between social-connectedness and perceived wellbeing. Across the domains of family, school, peers, and neighbourhood, increased connectedness improved the wellbeing within those studied. It is clear that being part of a community is positive for many people, but this is where it is complicated for Autistic people. We are a minority group that often finds themselves at the periphery of communities.
Due to perceived asociality, we find ourselves ostracised within the above mentioned domains due to the stigma associated with being Autistic (Kasari & Sterling, 2013). This extends to family with increased stress levels among the parents of Autistic people correlating to social isolation for the same reasons (Dunn et al, 2019). Loneliness has become such a feature of Autistic lives that national charities like the National Autistic Society are publishing information pages specifically about loneliness.
Loneliness can have a significant impact on our mental health, the charity Mind mentions the increased risk of depressive or anxiety issues, even indicating a relationship between our finances and loneliness. Lee, Cardigan & Rhew (2020) found that increased loneliness during the COVID-19 pandemic has a causative relationship with increases in rates of depression among young adults. An interesting anecdote to mention here is the number of Autistic people who reported both a reduction in loneliness during this time as people connected virtually, and an increase in wellbeing that was as a result of the move to online socialisation.
Minority stress is conceptualised as the increased social stress that minority groups experience through systematic exclusion and oppression within normative society (Botha & Frost, 2020). Issues such as difficulty accessing affirmative healthcare, social isolation, employment discrimination, and hate crime all contribute to minority stress (this is far from an exhaustive list). These individual factors come together to form a great deal of the negative and traumatic experiences that Autistic people have as a minority group.
What is interesting in the context of community is that Botha (2020) found that community-connectedness, that is, being a part of a community of supportive peers, actually decreased the effects of minority stress. This could be because of the knowledge of shared experience as well as increased self-advocacy, coupled with the ability to socialise AuSocially.
The Autistic Community
The Autistic community has provided a space for Autistic people to experience real community connectedness outside of deficit based models of autism. This is a space where we are less likely to experience discrimination based on our communication, and more likely to find shared experiences. Through knowledge exchange, we are able to push back against stigma and discrimination while learning how to advocate for our own rights.
I believe it is clear why this is so important to Autistic people who have historically had their narratives written for them by people with no lived experience of their identity. Giving Autistic people the power to form their own connections in their own time and space allows for the rewarding feeling of friendship and self-actualisation. Without this community, I believe our wellbeing would be significantly decreased. For me personally, it has been life saving, and has fundamentally changed the trajectory of my life.
This is why people exploring an Autistic identity need to be encouraged towards Autistic community spaces. It allows them to mitigate the minority stress that is so much more intense when we feel isolated from our peers. This is why it is important that members of the Autistic community are providing education around autism with schools and other professional environments. We are able to signpost Autistic young people towards helpful community spaces and mitigate the discrimination and social stress that they will inevitably experience.
Without this community, many of us wouldn’t make it. This is why it is important for us to make this a place that is accessible and welcoming to all, and not to gatekeep it from those who may have a harder time accessing it.
Our lives depend on it.