Autistic Community: Connections and Becoming

Everyone seeks connection in some way or another. Connections may look different for autistic people. In line with the motto from Anna Freud’s National Autism Trainer Programme (Acceptance, Belonging and Connection), creating a sense of acceptance and belonging is likely to be more meaningful for autistic people than putting pressure on them to try and fit into the neurotypical expectations of socialising which can add to mental health issues and feelings of isolation and lead to Autistic Burnout. It highlights the importance of providing safe spaces for autistic people to share experiences in a way that feels comfortable for them; this may mean online spaces are more accessible for many neurodivergent people.

Research shows due to the many barriers in society and the stigma autistic people face that, autistic people are four times more likely to be lonely than those who are not autistic. The study “‘I’m Trying to Reach Out, I’m Trying to Find My People’’by Quadt et al. (2023) revealed just how intensely autistic people may experience loneliness, going against the myth that autistic people avoid seeking meaningful social relationships. They found that sensory differences contributed towards intense feelings of loneliness for autistic people as their needs were often not being met in society.

Society has generally been set up to meet the needs of the majority of the population (those who are not autistic, neurodivergent, disabled or from any other minority group). Up until fairly recently, there has always been a very medicalised view of what autism is, even in the way autistic people have to get a ‘diagnosis’ from a doctor, which is based on a list of deficits and things they are unable to manage as well as those who are not autistic.

The recent article published by the British Psychological Society, ‘What does it mean to be neurodiversity affirmative’ (Hartman et al., 2024), explored why there is now a significant move away from the deficit medical model of disability and way of understanding autism. They share the importance of reframing our understanding of autism and valuing the lived experience of autistic people to inform research and supportive practice.

This is an important step forward for those in education and healthcare settings as it means they are starting to no longer see autism as a disorder or as a condition that needs treatment, fixing or needs interventions to change them. For autistic people, this will mean less stigma, more acceptance and equity in society. For change to happen, we need conversations and community togetherness. For many autistic people who may feel marginalised, we need spaces where we feel safe enough to share our experiences to help create change.

Research and articles such as that shared in the BPS (mentioned above, Hartman et al., 2024) and through resources such as The Adult Autism Assessment Handbook: A Neurodiversity Affirmative Approach (Hartman et al., 2023) are all helping to carve a path and lead the way for a more accepting, neuro-inclusive society. n

I wrote a blog, ‘An Autistic Experience of Social Media’ (2022) when I was setting up Autistic Realms about how I have found comfort and solidarity in various online communities over the years. The online community has provided a sense of safety and community for autistic people for a long time. The word ‘neurodiversity’ even evolved from online discussions in the 1990s as a way to explain how all minds are diverse and helped to develop what we now refer to as the neurodiversity paradigm (see Nick Walker, 2014). The infographic below gives a concise summary of this history taken from Gowin Ryan’s (2023) work ‘Amplifying Autistic Perspectives: Learning from and with Autistic Adults to Support their Autonomy’.

The internet has become far more accessible over the years; it has become easier for many more people to join in and help shape these conversations. This is especially true for non-speaking and minimally speaking autistic people, who are often even more marginalised in society. With the advancement of various apps and technology, communication is becoming ever more accessible. The internet provides a way to develop communities to include everyone, especially those previously marginalised. There is a sense of belonging and togetherness in many different online spaces that is valuable and can help enrich and add value to a person’s life and support their well-being.

As a late diagnosed autistic person, I know it can feel quite confusing hovering in the gap between different spaces, not quite feeling like you completely belong and trying to understand your own identity to be able to connect with others. There is a deep human need for connections. Trying to reduce feelings of loneliness and reaching out into the unknown can feel like a big step, whether as a parent for your autistic child, yourself or for another loved one, especially if your needs have been invalidated in the past. However, the online community is not without its downsides, and I think it can feel quite overwhelming and equally isolating in some spaces in a world that also seems to have its own unwritten rules and language that you have to learn to navigate.

StimPunks has a great, up-to-date glossary that reflects the breadth and richness of this global neurodivergent community. It captures a reflection of the autistic, neurodivergent and disabled culture and language used within these communities. It is a beautiful display of acceptance, belonging and connecting (NATP). An example of this is their page Five Neurodivergent Love Locutions (Stimpunks, 2022), where they expanded on Myth’s (@neurowonderful) original Twitter/ X post:

“The five neurodivergent love languages: info-dumping, parallel play, support swapping, Please Crush My Soul Back Into My Body, and “I found this cool rock/button/leaf/etc and thought you would like it” (Myth, 2021).

These examples show the different ways many autistic people create a sense of belonging by sharing stories and developing friendships online, as these spaces are often not available or accessible elsewhere. It is through these online spaces that I have grown to feel more accepted and continue to un-learn and re-learn more authentic ways of being with the support of other neurodivergent people who ‘get it’.

It is comforting and more manageable to socialise online from the comfort of my home, where all my sensory needs are met, and the social expectations and norms online match my own way of being. It is also reassuring to dip into online spaces when I am out and about as a way of resting and re-charging, especially in places and situations which are stressful or overwhelming. Various social media platforms provide me with a sense of reassurance, predictability and comfort in what can feel like a chaotic world to live in.

The internet can be a great source of information (as well as misinformation!) and a place of support for many people who may find other spaces inaccessible. As an extension of my previous community monotropism project (July 2023), I recently asked for feedback from Twitter/X, Facebook and Bluesky communities (January 2024). I aimed to seek ideas to refine a working definition of monotropism that reflects the experience of the neurodivergent community (see image and text below). This is a good example to highlight the value of neurodivergent voices sharing experiences and communicating in ways that meets their needs; it is an example of a collective creation and a coming together of all different types of minds.

“Monotropism is a neurodiversity-affirming theory of autism (Murray et al., 2005). 

Autistic /ADHD/ AuDHD people are more likely to be monotropic (Garau et al., 2023). 

Monotropic people have an interest-based nervous system. This means they focus more of their attention resources on fewer things at any one time compared to other people who may be polytropic. 

Things outside an attention tunnel may get missed, and moving between attention tunnels can be difficult and take a lot of energy. 

Monotropism can have a positive and negative impact on sensory, social and communication needs depending on the environment, support provided and how a person manages their mind and body.“

As the BPS article by Hartman et al. states, “It is a basic human right to have a voice and a ‘place at the table’ in equal decision-making about community needs, and diversifying teams in this way also leads to better care and support.” For progress and systemic change, we need allies as well as active voices from within the community. We need autistic voices to be heard in research and to be a part of policy-making, too. Without autistic voices, any research or policy about autistic people will be meaningless. Our inner experiences need and deserve to be heard, and creating safe online spaces is one way of doing that.

I shared thoughts about Monotropism and Collective Flow States in my More Realms platform. This explored the coming together of different minds and bodies embracing a collective flow state to create change for a more neurodiversity-affirming and equitable future. I believe the theory of monotropism can help develop an deeper understanding of autism/ADHD/ AuDHD and help validate the inner experiences of neurodivergent people so they feel more connected and have a sense of belonging in the world. It will enable conversations to open up, allowing collective community energy to flow outside of predominantly neurodivergent online spaces into the wider community and into education and healthcare settings. A deeper understanding of momotropism can help support better mental health and could help reduce autistic burnout (more research is definitely needed!).

“Care happens in the space between people, in an unhurried encounter.”(Heath & Montori, 2023). Autistic people need space and time to be, and to become. We desperately need a more neurodiversity-affirming approach and for more value to be placed on the input that those with lived experience of being neurodivergent can bring. We need a more humanising, “experience sensitive approach to care”, such as that proposed by The National Autistic Taskforce, ‘Independent guide to quality care for autistic people‘ (2019), or McGreevey et al. (2023) in their paper about an ‘Experience Sensitive Approach to Care with and for Autistic children and Young People in Clinical Services‘.

The Monotropism Questionnaire (Garau et al., 2023) has gained significant popularity and momentum because there is a collective need for validation and understanding within the neurodivergent community. Everyone deserves to flourish, feel validated and live their best life. Having your inner experiences validated in online communities and being involved in research is a step forward towards this. If we accept and celebrate differences, we can work together to shape the course of our collective flow to make a positive difference so everyone feels a sense of belonging and connection.

Neurodiversity is where potential and possibilities lie. We need to embrace our collective flow, our differences and our ways of becoming.

Further Information:

For more information about Humanizing Care, please see the fabulous work by Lisa Chapman,Lisa Chapman which is available on my website as a free download. This resource combines the ideas and thinking of several authors with a singular focus; to help lay out visually the elements that contribute to Humanising interactions, & ‘An experience-sensitive approach to care’ (McGreevy et al., 2023).

Two of the summarised articles were written for health systems and health research (Todres et al., 2009; Heath & Montori, 2023). McGreevy et al. (2023), meanwhile, write specifically about autism.

The themes of Acceptance, Belonging & Connection run throughout.

These are the ‘ABCs of Love’, the motto for the National Autism Training Programme: NATP (Anna Freud). ‘Love’ is an essential ingredient for holistic healthcare (Heath & Montori, 2023).

All these ideas are furthermore central to #FlipTheNarrative thinking (Chapple, 2023) and reducing both the Double Empathy Gap (Milton, 2012, 2018; Milton et al., 2022) and the Triple Empathy Gap (Shaw et al., 2023).

 The resource is for all who offer care and all who receive it, going beyond Health into Social Care and Education (see Shannon, 2020, 2022).

“Care happens in the space between people, in an unhurried encounter.”

(Heath & Montori, 2023).

Let’s offer balanced, experience sensitive, humanistic care in all our interactions; Care that values people & relationships; Care-givers & care receivers; Care with time as a medium, not a measure.

I am proud to be an affiliate for The Autistic Advocate, Kieran Rose’s Inside of Autism Course and other webinars they offer. I would highly recommend these to gain a deeper insight into autism and autistic experiences.