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At Marmalade Trust, we are working to develop our awareness and understanding of the link between loneliness and autism. To celebrate Neurodiversity Celebration Week (17th - 23rd March), we’re taking a moment to explore and reflect on some of what we have learned.
Loneliness and autism is a huge topic, one which would be difficult to cover in a single blog post. See the end of this article for some fantastic further reading and online resources.
Experiencing loneliness
The opposite of loneliness is connection. Whatever our individual social needs, making meaningful connections brings joy and enrichment to our lives. Although people with autism are just as likely to desire connections with others as neurotypical people, they are up to four times more likely to experience loneliness.
People with autism often socialise in ways which might be unfamiliar to people who don’t have autism, creating misconceptions about the amount of social contact people with autism require. Although many people with autism value periods of solitude, this is distinct from loneliness - the latter of which indicates a mismatch between the amount of social contact a person has, and the amount they would like to have. The truth is that everyone desires varying amounts of social contact, and people with autism are no exception.
Autism and communication
Autism is a spectrum condition and affects people in different ways. Like all people, autistic people have their own strengths and weaknesses. The social challenges faced by autistic people are equally individual, but many autistic people share certain traits which can make communication more difficult.
According to the National Autistic Society, autistic people have difficulties with interpreting both verbal and non-verbal language like gestures or tone of voice. Some autistic people are unable to speak or have limited speech while other autistic people have very good language skills but struggle to understand sarcasm or tone of voice. Other challenges include:
taking things literally and not recognising abstract concepts
needing extra time to process information or answer questions
repeating what others say to them (this is called echolalia)
Autistic people sometimes have difficulty recognising or understanding other people's feelings and intentions , and expressing their own emotions. This can make it very hard to navigate the social world. Autistic people may:
appear to be insensitive
seek out time alone when overloaded by other people
not seek comfort from other people
appear to behave 'strangely' or in a way thought to be socially inappropriate
find it hard to form friendships.
How does loneliness affect people with autism?
Although loneliness is not a mental health condition, it can contribute to feelings of anxiety and depression. Autism is often co-morbid with mental health difficulties such as these, with over one third of autistic people experiencing a mental health condition. Loneliness can amplify these conditions further.
Misunderstandings about autism can lead to a lack of meaningful social connections, which has a range of negative repercussions. Being pushed into social withdrawal can leave people with autism feeling alone and invisible, heightening low self esteem or vulnerability towards abusive relationships.
Some autistic people turn to ‘masking’ to try and ‘fit in’ with others. According to Nurseline Community Services, masking requires a lot of cognitive effort, which is draining and can lead to burnout and exhaustion. Over time, this behaviour can negatively impact one’s sense of self and true belonging, ultimately affecting mental health.
Managing loneliness
You don’t have to be physically alone to feel lonely; loneliness can happen when we are not being acknowledged or understood by those around us, and a lack of acceptance and understanding by society can make autistic people feel more excluded. Specific barriers to social opportunities include:
unwelcoming sensory environments (such as noisy pubs or restaurants)
social anxiety
fear of rejection
experiences of bullying
lack of formal support (in education or as an adult)
These challenges can feel overwhelming, but there are lots of helpful ways to mitigate them. Paul Micallef from Autism From The Inside advises a measured, two step process when feelings of loneliness arise:
Come to terms with your current situation and constraints;
Work towards a different situation within these constraints, and take steps to expand them
As Paul recommends, it is important not to avoid our feelings. Learning how to sit with our feelings, instead of shying away from them, can lead to greater self acceptance and compassion. Although it is important not to ruminate too heavily, embracing how we feel is a brave first step towards making positive changes.
Making a list of things you enjoy doing – and things that are accessible within your current situation – could elevate your mood when feelings of loneliness arise. It is easier to make changes when we feel uplifted, so self care can be a great way to get started. Click here for self care tips from Marmalade Trust.
Making positive change
Many people with autism prefer to socialise in ways that look different to the perceived ‘norm’. For example, they may derive social fulfillment from being around people without having to actively engage in conversation or activities. It can be scary to risk being misunderstood, but telling people in your life what works for you in social situations can help them to better understand your needs.
We asked, 'what do you do to feel connected when feelings of loneliness arise?'
“When I feel lonely, I have learnt that the worst thing I can do is hide under my covers/stay in bed, it always makes me feel worse and more emotional. Now, I reach out to family and friends who may have an afternoon free or just an hour to meet up at a coffee shop for a chat. This always makes me feel better because I have gotten myself out of the house and into a new surrounding.” - Kayleigh, 34
“Imagining anything but the real world, sometimes it includes me, or sometimes it doesn’t, like mystical creatures, or snippets of short stories that I make up in my imagination. And I do that whilst listening to music or whilst doing art.” - Sola, 12
“Watch TV like every other person, I guess.” - Remi, 14
“I find a family member and like sitting in the same room as them, their presence is comforting. I also message my friends to see what they are up to and if they are free to video call so we can sit and chat at the comfort of our own homes and beds.” - Betty, 14
While everyone has individual needs, general advice for managing loneliness can be a useful starting point. The Marmalade Trust has lots of helpful guides which could help you get started – click here to read more.
However you prefer to communicate, you can find the connections you need; it may simply take a little more time, and some trial and error, before you discover what works best for you. Offering positive feedback to friends and family can motivate them to keep trying, even if they don’t get it right the first time.
What would make you feel more connected, and how can you work towards that?
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Further reading and resources:
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