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Autism & Loneliness

Loneliness. It’s not something we often associate with young people and adults of working age, or even with autism; particularly as the common perception of autistic people is that we like to be alone and prefer our own company. Whilst that may be largely true (we often are quite content in our own company, without the commonly felt social pressure) not actually having the option of meaningful social connection means being chronically alone, which can mean feelings of isolation.

This is by no means a rare occurrence either. A simple search in any online autism support group will produce ample accounts of autistic individuals expressing their experiences of loneliness, and whilst research into this concern is relatively limited (as many areas relating to autism are), the research that has emerged has expressed what many of us autistic people already know: being autistic can be very lonely.

So why do autistic people feel this way?

There are many reasons an autistic people may find themselves feeling lonely and unfortunately several of these reasons are commonly thought to be related to autism. For example, the high occurrence of social anxiety in those on the spectrum. In their review of 1481 research papers investigating this issue, Spain, D. et al. (2018) state that: “Findings support the notion that there are links between core ASD characteristics and SA” (NB: ‘SA’ = abbreviation of ‘social anxiety’). As well as social anxiety, difficulties with the complex nature of neurotypical social communication (including understanding/use of non-verbal communication like eye contact, hand gestures etc.) can also impact ability (and confidence!) to socialise. Whilst these two areas are perhaps the most ‘known’ difficulties associated with autism and socialising, an area which receives little attention (and therefore less understanding) is ‘selective mutism’.

‘Selective mutism’ is described by the NHS as “A severe anxiety disorder where a person is unable to speak in certain social situations” (NHS, 2022). What’s interesting is the term ‘selective’, as this inability to speak is not a choice. At this point I’d like to mention n unofficial term brought to my attention by another neurodivergent person: ‘situational mutism’, which feels more accurate. Research suggests that the occurrence of situational mutism (referred to as ‘selective mutism’ in articles) is higher in autistic children than non-autistic children (Steffenburg et al. 2018) and can continue into adulthood. As many autistic people find the experience of socialising a stressful one, the likelihood of situational mutism occurring is increased.

The fact that we live in a world that runs largely on speech and neurotypical communication standards can leave many of us feeling like we don’t belong, can’t keep up, or simply just don’t fit in. This can lead to us ‘opting out’ and resigning ourselves to isolation.

Although the journey to feeling less isolated may be a long (and in many cases tiring) one, the benefits to our wellbeing of feeling as though we ‘belong’ in some way, are notable. That being said, social needs can vary dramatically from individual to individual. My personal needs for social connection are relatively low, whereas another person on the spectrum may feel the need for more frequent connection to fulfil their needs. Below are some points to consider, which will hopefully be helpful for those struggling with feelings of loneliness.

  • Your needs are valid. Autistic people can struggle with low self-esteem but it’s important to remind yourself that just because you don’t communicate, or present yourself, or even think, like many other people, you’re just as important as everyone else and deserve to be treated with as much respect as anyone else

  • Be honest. If you struggle with speaking sometimes and need to use alternative communication methods (writing, AAC apps/devices etc.) let people know! Especially if you’re in a learning environment, workplace, or group. Places like this have a duty to make reasonable adjustments and be inclusive.

  • Online is a good place to start with socialising if in-person socialising feels too intense. Autism-specific groups will likely have people who understand what it’s like to live as an autistic person and can offer friendship and support.

  • Groups dedicated to your interests, hobbies, or beliefs may be a good place to meet people you can relate to.

  • Remember that even online people can misinterpret things, or have differing opinions; it’s important to remember that no group will be ‘perfect’ and no one is wholly ‘good’ or ‘bad’ but you have choices about how you react. Don’t let one uncomfortable situation put you off.

  • If you’re meeting in person, such as a group relating to your hobby, don’t pretend to be someone you’re not to try and fit in, it’ll be emotionally draining and your uniqueness is something to be shared, not squashed!

  • If you have a negative experience with someone, such as someone being unkind to you, don’t assume that everyone is like that person…see it as an ‘editing’ process, by finding out that a person is unkind, you now know that they’re not the right friend for you.

Finally, realise that establishing true connection will take time. There’s no ‘right’ age to be to make connections, whether you’re in your 20’s, 30’s, 40’s, 50’s, or 60’s and beyond, there’s no time scale and it’s never too late to try.

Article of Interest:

Title: “I’m Trying to Reach Out, I’m Trying to Find My People” – A Mixed-Methods Investigation of Loneliness and Loneliness Distress in Autistic Adults

Author/s: Quadt, L. and colleagues

Format: Research manuscript

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NHS (2022) Selective Mutism.,untreated%2C%20can%20persist%20into%20adulthood.

Spain, D., Sin, J., Linder, K., McMahon, J. and Happe, F. (2018) Social Anxiety in Autism Spectrum Disorder: A Systematic Review. Research in Autism Spectrum Disorders, 52.

Steffenburg, H., Steffenburg, S., Gillberg, C. and Billstedt, E. (2019) Children with Autism Spectrum Disorders and Selective Mutism. Neuropsychiatric Disease and Treatment, 14(2305).

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