In 2019 I carried out a study to explore how late-diagnosed autistic women (like me) managed their health and wellbeing. You can read the summary of my findings here. This is the first of four blog posts describing the themes I identified when analysing the interviews.
Theme 1: understanding needs
The study participants found that once they knew they were autistic they found it easier to support their own health and wellbeing. Until that time, they hadn’t understood their needs in an autistic context.
Sometimes they unconsciously camouflaged or masked by trying to keep up with non-autistic peers under conditions that they found difficult. This caused them exhaustion and burnout. Also, disassociation or alexithymia meant that they didn’t always recognise their health and wellbeing challenges or were unable to describe these challenges to other people. This resulted in a lack of support, and held them back from developing necessary self-care practices.
Getting to know other autistic women (often through social media) was often empowering because it helped the participants to accept themselves better. This encouraged them to find more holistic ways to treat and understand themselves, rather than just managing individual symptoms. Some talked about how they stopped blaming-and-shaming themselves and instead learned to treat their minds and bodies with respect and kindness.
All the participants experienced fatigue and overload, particularly before they were identified or diagnosed and not necessarily aware of their individual needs. Sensory triggers, changes to routines; socialising and other stressful situations contributed to breakdowns, meltdowns, shutdowns, blackouts, becoming mute or inarticulate, problems with physical coordination, executive dysfunction; and/or feeling hungover the next day. Understanding more about these triggers meant that they felt empowered to make use of tools such as sunglasses and noise-reducing headphones.
All the participants had struggled with anxiety, and anxiety made health issues like pain and digestive issues worse. Some of the participants mentioned depression but they were more likely to talk about burnout, a time of extreme fatigue, lack of focus, low mood and executive dysfunction following life stress. Burnouts could last for months and caused exhaustion which made it difficult to practice self-care.
All the participants talked about how sleep difficulties affected them. Many of them felt that when they used strategies to reduce anxiety they slept better, and that when they slept better, they had less anxiety.
All the participants talked about challenges common to autistic people such as digestive disorders, pain, hypermobility, migraines and autoimmunity. They had not always been given helpful support from their doctors and so they researched how to reduce these health challenges for themselves. I will tell you more about this in my next post. Strategies that helped these issues also reduced anxiety, fatigue and overload.
You can see why we felt that this website would be helpful for other autistic people! While the blog posts from our wonderful contributors are in no way meant to replace professional advice, we find that hearing about other autistic people’s experiences and strategies helps us to understand and help ourselves better.