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Autism

A Day In the Life of a Woman With Autism

Living with Autism: A Personal Perspective

Key points

  • Autism affects people with Level 1 Autism Spectrum Disorder in extreme ways on a daily basis.
  • People with autism experience sensory processing and emotional issues which can be easily triggered.

Like many of my clients, my autism isn't noticeable in any way. Yet it affects me in a myriad of ways on a daily basis. Here's a description of a fairly average start to a day.

Long before it’s lunchtime, I’m often completely overwhelmed, physically and mentally burnt out and worried about the day ahead. I’ve been like this as long as I can remember. I used to put it down to low-grade depression and anxiety and coped by self-medicating with alcohol before I faced the next trying day. It wasn’t until I discovered that I had autism that I realised why I felt so exhausted so often, particularly on days when I hadn’t done anything that other people would consider particularly demanding.

Because I have autism, I process things, including other people, differently. I have problems understanding and responding to social cues, making eye contact, recognising faces and dealing with sensory overload, all of which are listed as diagnostic criteria in the DSM-51.

Here’s what my day might look like in practice: I leave the house at 8.30am. I have no idea what to say to the school crossing lady, who happens to stand just outside my house, and studiously avoid eye contact (an activity which is positively painful) by making conversation with my son. I manage to walk to my car without catching her eye or engaging in any small talk (which is equally painful). Phew! I drive to school and experience extreme anxiety when I’m confronted by an unexpected traffic detour. I start feeling dizzy, my heart’s racing, my palms are sweaty, and I can feel myself going into meltdown mode. Even on a good day, driving is incredibly difficult for me due to the sensory overload I experience. When there are traffic works or detours, I have no idea what to do except panic, which sometimes results in me dumping the car in an inappropriate place and walking.

Carolina Heza, Unsplash
Source: Carolina Heza, Unsplash

I’m extremely stressed by the time I drop my son at school and, as I leave the playground, I see a mum I know. I start approaching her, but no! Another mum gets there first. I’m not really sure who this woman is, due to my problems with facial recognition, and I don’t want to look stupid if it’s someone I know. In addition to this, whilst I like one-on-one company with the right person, when another person is added into the mix following social cues and conversation is completely overwhelming. I place my mobile to my ear and pretend to be deeply engaged in conversation, which allows me to stare off into the middle distance. I manage to get back to my car, tired and worried now about how I’ll cope with the detour on the way home.

By the time I’ve made it home, my partner finds me flopped out on the couch, sobbing after being beeped by a car driver who was, rightly, annoyed at me dithering in my car as a result of my confusion. After listening to what happened, my partner tries to helpfully come up with solutions. I can’t hear or understand anything that he’s saying as I’ve gone into full meltdown. I go to bed with my cat. The rest of my day is written off as I spend it ruminating on what happened during the school run.

Like many women with autism, I used to put my social experiences down to social anxiety and kept searching for a cause in my childhood. Whilst I have certainly experienced childhood trauma, and am in no doubt that has shaped by view of the world, I now realise that my experience of the social world is inherently shaped by how I process the world around me. Being unable to make eye contact has little to do with social anxiety as, even with people I feel completely comfortable around, I have to remind myself to look at them. Failing to read social cues comes into play with those close to me as well as more distant acquaintances (I once failed to notice that a boyfriend was about to end our relationship, despite the fact that everyone else who had seen him that day had picked up on his distress). Feeling so exhausted that I need a couple of days to recover after a social gathering affects me equally as intensely with a group of people who I like and feel safe with as it does with a group of strangers or people who I don’t particularly like.

Accepting that I experience the world differently has been a huge revelation. I no longer feel bad about myself for finding it hard to manage certain situations and the guilt which I’ve always carried because I don’t enjoy spending time in groups of people who I care about has lifted. I no longer keep pushing myself to socialise in ways which are always going to be problematic for me, such as joining clubs. I ensure that, if I go to a family party, I have a get-out clause so I can leave when the exhaustion and boredom set in. And I reserve the right to say no to social events if I’m aware they’re likely to knock me out of circulation for a couple of days.

There’s always a conflict because, like most women with autism, I’m socially driven to make friends and have a social network2. This is in contrast to many boys and men with autism, who tend to experience a greater degree of satisfaction in their own company3 and have less desire to have a satisfying social life. However, I manage this conflict now by being realistic and balancing the costs of being sociable with my mental health needs. By doing so, I have learned to limit the burnout I experience so that I have time and energy for the people I love and the activities which feed my mind.

The terms around autism are contentious, but whether you have what used to be called Aspberger's Syndrome or Level 1 ASD, having average or above intelligence doesn't mean that you have it easy. Finding ways to manage your autism is important so that you can create a life which is fulfilling and enjoyable.

References

1. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.) https://doi.org/10.1176/appi.books.9780890425596

2. Beck, JS, Lundwall, RZ, Gabrielsen, T, Cox, JC, South, M (2020) Looking good but feeling bad: “camouflaging” behaviours and mental health in women with autistic traits, Autism, 24(4), p809-821

3. Begeer, S, Mandell, D, Wijnker-Homes, B, Venderbosch, S, Rem, D, Stekelenburg, F, Koot, HM (2013) ‘Sex differences in the timing of identification among children and adults with autism spectrum disorders’, Journal of Autism and Developmental Disorders, 43, p1151-1156

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