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Autism

Women with Autism and Insomnia

Why women with autism have problems falling and staying asleep.

Key points

  • People with autism are especially prone to insomnia.
  • Genetics, sensory sensitivity, and related mental and physical health problems all contribute to and/or exacerbate sleep issues.
  • Establishing consistent sleep routines and making others aware of autism-related hypersensitivity can help fight insomnia.

I’ve had insomnia for as long as I can remember. My brothers and I had bedrooms on the same floor growing up, and I’d yell at them for the slightest noise. Today, I can’t sleep with my partner of over ten years. Every time he moves or breathes, I want to smother him with the nearest pillow.

I’ve tried explaining to those I live with what it’s like for me at nighttime. When I hear a noise, no matter how tiny or insignificant, it feels like something sharp has been stuck in my stomach. I feel noise at the most visceral level, going into a severe fight-or-flight state.

Given the right environment, I can sleep OK, although I still tend to wake often throughout the night and rise very early. But it takes a lot of effort to create the right environment (which, ideally, involves excluding all other people—not an easy feat when you have a partner and two children).

 Adam Kuylenstierna, Unsplash
Source: Adam Kuylenstierna, Unsplash

I’m not alone in being a woman with autism who suffers from insomnia. Although it receives less attention than some of the other autism symptoms, many children and adults with autism have insomnia.

One of the largest studies of its kind revealed that children with autism were at high risk for sleep disturbance. 1 Research into children’s sleep patterns showed that they displayed problems with rapid eye movement (REM) sleep and experienced a decreased quantity of REM, decreased time in bed, and decreased total sleep time. 2 Over 50 percent of children and adults with autism report sleep problems. 3 The vast majority of my clients experience sleep problems, too—including being unable to get to sleep, waking frequently during the night, feeling panicked before going to sleep and when they wake up, waking early, and feeling exhausted as they start their day.

Why Do Women with Autism Have Trouble with Sleep?

There are several potential reasons for autism's link to insomnia, including:

1. Genetics

One theory is that people with autism have double the chance of carrying alterations in genes that regulate the body’s circadian rhythm, which is responsible for the body’s sleep-wake cycle. No studies to date have confirmed a link between genetic mutations and circadian rhythm; however, research has shown a genetic link to other sleep genes. One study which compared autistic children to their neurotypical siblings showed that they were almost twice as likely to carry mutations that impacted one of the sleep genes and that they were one-and-a-half times more likely to have genetic mutations which affect an insomnia-related gene. 4

2. Sensory issues

Many people with autism find it hard to sleep because of sensory issues. Extremely heightened sensitivity to light, touch, and noise can all make it almost impossible to fall and stay asleep.

My client Angela told me, “Everything around sleep causes me extreme anxiety. I take ‘light sleeping’ to a whole new level. I can’t go to sleep until my partner’s asleep and I’m super conscious of his breathing patterns. If I hear any noise from the apartment above, I’m awake like a shot. And I also take a long time to get comfortable. I end up pulling the sheets about before getting into bed and get annoyed if there’s a wrinkle in the wrong place.”

3. Emotional regulation issues and rumination

Women with autism often experience emotional regulation issues 5 and can find it very difficult to calm down after a difficult day or after they have had a meltdown. Many women with autism have anxiety and depression, both of which can affect sleep. They are also prone to ruminating and may find themselves revisiting what they have said and done during the day.

Another client, Diane, told me, “I will get fixated on something I’ve said. I worry that I did something wrong—and I will literally have to replay the conversation over and over, analysing exactly what happened during the interaction. I can spend hours at night doing this.”

4. Other associated health issues

People with autism have a higher likelihood to experience other health issues, such as gastrointestinal problems, 6 that can affect sleep. One study showed that people with autism are between 1.5 to 4.3 times more likely to have a wide variety of health conditions, including low blood pressure, arrhythmias, asthma, and prediabetes. 7

What Helps People with Autism Fall Asleep?

For people with autism, what helps with getting to sleep is similar to the measures that help everyone get to sleep:

  • Establish a consistent routine.
  • Go to bed before being overly tired.
  • Don’t check your phone/tablet in bed.
  • Keep the bedroom for sleep and sex—nothing else.
  • Avoid stimulants at night.
  • Ensure your room is at the correct temperature.

In addition to the general “sleep hygiene” rules above, there is something about recognising that your needs may be more extreme than other people’s and that’s OK. You’re not being hyper-reactive. This is a problem over which you have little control. From my own and my clients’ experience, other measures which can help include:

  • Wearing headphones and listening to soft music, background noise, guided meditations, or sleep stories.
  • Using a weighted blanket.
  • Cuddling a soft toy.
  • Ensuring that you have some quiet alone time before falling asleep.
  • Finding some way of dealing with the day’s thoughts (for example, some people find writing them down so that they can look at them the next day is helpful).
  • Going for a morning walk (which helps balance the hormone melatonin).

As far as is possible, try to ensure that other people in your household understand the extent of your issues. If they do all they can to provide a peaceful environment, it will likely have a positive effect on helping you get to sleep.

References

1. Mazurek, MO & Sohl, K (2016) Sleep and behavioural problems in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(6), p1906-1915

2. Devnani, PA & Hegde, AU (2015) Autism and sleep disorders. Journal of Pediatric Neuroscience, 10(4), p304-7

3. Relia, S, Ekambaram, V (2018) Pharmacological approach to sleep disturbances in autism spectrum disorders with psychiatric comorbidities: a literature review. Med Sci (Basel)., 6(4) doi:10.3390/medsci6040095

4. Jansen, PR (2019) Genome-wide analysis of insomnia in 1,331,010 individuals identifies new risk loci and functional pathways. Nature Genetics, 51(3), p394-403

5. Mazefsky, CA, Herrington, J, Siegel, M, Scafa, A, Maddox, BB, Scahill, L, White, SW (2013) ‘The role of emotion regulation in Autism Spectrum Disorder’, Journal of the American Academy of Child and Adolescent Psychiatry, 52(7), p679-688

6. Madra, M, Ringel, R, Margolis, KG (2020) Gastrointestinal issues and autism spectrum disorder. Child and Adolescent Psychiatric Clinics of North America, 29(3), p.510-513

7. Weir, E et al. (2020) Increased prevalence of non-communicable physical health conditions among autistic adults. Autism, 9 Sept 2020; DOI: 10.1177/1362361320953652

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