“I don’t sleep, I rest”. I seem to say this all the time to help explain my insomnia.
My autism both triggers my difficulties with sleeping whilst also providing a system of support. For ten years I slept for roughly three hours a night when typically adults ought to have between six to nine hours.
Each day I was pushing myself to fit in and struggling to keep up with the non-autistic people around me. Up to 80% of people with cognitive differences experience sleep problems – it’s a really important aspect of the autistic experience that needs more attention. More sleep gives me the energy to navigate the non-autistic world that doesn’t accommodate my neurodivergent needs.
“There is no one treatment or response, no proven bed time routine or single sensory adjustment that can be made. It’s important to be realistic”.
How can we open up the conversation? And how can we make things easier?
Symptoms like hyperactivity, sensory overload, and anxiety can prevent and interrupt restful sleep in autistic people. There are studies that suggest that autistic people have lower nighttime melatonin concentrations, a hormone that when lacking can make it a lot harder to fall asleep. Autism isn’t experienced as a disability or a disorder for everyone, it’s a condition that has many factors that are both behavioural and biological.
I found it really reassuring to find that my sleep troubles had a bodily source, something that isn’t purely learnt. It isn’t just habit or bad parenting, it’s simply an unhappy accident.
Sleep helps you to regulate emotional wellbeing and restores energy. It gives the body time to recover from physical and cognitive activity and allows the brain to process the day. Lack of sleep feeds problems with attention, concentration, and executive functioning, disrupting day-to-day living and often exacerbating the more challenging aspects of autism.
I find social interaction exhausting and misinterpret social cues. I find it difficult to engage with people and become angry and distressed when plans change or I have to negotiate with something unexpected. Feeling tired doesn’t make things any easier.
To manage my autism, I fall into strict routine and rely on repetition to keep me grounded. The inconsistency of my sleep patterns and unpredictability of when I might drift off is really distressing to me. Disturbed sleep can be really difficult for neurodivergent people who like regularity. Patterns of rest that you can’t predict or control feels painfully similar to the day-to-day barriers we face.
Sleep difficulties affect the individual first, and the people around them second. I have had years of negotiation with a non-autistic household who don’t quite get why I can’t move my door from 90 degrees open, or why I have to drink a chamomile tea at 80 degrees at 9pm every night.
It’s very difficult to explain why these repetitive practices make me feel a little safer. Once I was diagnosed with autism at 21 years old, I was given a shared language to explain my habits and rituals. But terminology and stereotypes don’t always include specific experiences. Restless nights aren’t always hours of busy heightened activity into the early hours, or absolute melt-down. It’s often an exhausting in-between of endless enforced “resting” and not sleeping.
I have learnt be honest with the other people in my household who don’t experience the world the same way I do. There are the tried and tested methods of easing into sleep, but I have found that communication with others and listening to your own body can be even more effective. Documenting your sleep hygiene and history can be really helpful for autistic people, their families, and clinicians to monitor sleep behaviour and to recognise the factors that can improve the situation or cause further issues.
Everyone’s experience of autism is different, and so should be the responses to the challenges that autistic people face. There is no one treatment or response, no proven bed time routine or single sensory adjustment that can be made. It’s important to be realistic. Autistic symptoms are rarely “solved”, but are instead “managed”. In that same way, it’s a case of managing expectations and not counting on an immediate solution.
In all honesty, I am still a chronic insomniac who dreads 10pm. My nighttime medicine brings me nausea and exhaustion, and if I take a night off from the sickness I am faced with eight long hours ahead of me.
But I’ve adapted. I’ve learnt to use the skills that my autism equips me with to establish a routine that accounts for my noise and light sensitivity. I schedule a special interest time and allow myself to hold onto the vocal repetition that makes me feel safe.
It’s a complicated and ongoing negotiation involving others, but one that can be made easier through listening to the lived experience of autistic people and responding in a considerate and responsible way.
METTE is a writer, collector, and curator working at the junction between print, audio, and interdisciplinary projects. Receiving an autism diagnosis at the age of 21, she has a vested interest in representation and accessibility.
