Book - The Umbrella Picker

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When it comes to autism, people are typically either diagnosed as boys or as women.

A strange statement, to be sure, but one that’s statistically true. This is because men are more likely to be diagnosed in childhood, whilst women can wait decades to receive an identification for the sense of displacement they’ve been experiencing throughout their lives.

This was the case for Jane McNeice who, whilst researching ADHD symptoms on behalf of her son, came across a social media post that made her stop in her tracks. It was a spider diagram that shared the symptoms of autistic spectrum disorder (ASD) typically seen in girls, many of which were the complete opposite to what media and culture have conditioned us to believe are the definitive symptoms, but which are just those most closely tested and typically associated with boys and men.

“I immediately knew this was exactly what I had been searching for my entire life,” she recalls. “Then I did something very ‘autistic.’ I grabbed a sheet of paper, wrote all 23 traits as headings, wrote my rationale for meeting each and to what extent, and scored each out of 10. I scored 219/230 on my pseudo self-assessment.”

The founder of the mental health training business Mind Matters, Jane had been teaching employers to recognise and support mental health issues for years, in the hope that more people with undiagnosed neurodivergencies can get the help they need so that they can thrive and belong in the workplace. But this was whilst struggling with challenges that she herself didn’t yet have an attribution for. It was only upon doing this self assessment that she was finally able to receive the diagnosis she needed at the age of 45 – roughly 40 years later than the average ASD diagnosis in the UK. This experience led her to write The Umbrella Picker – the book, she “wishes someone else had written” for her 30 years earlier – with the goal to share her experience of living with undiagnosed autism and help other “lost girls” self-identify.

Here are 4 key points of awareness that Jane wants to bring to women who may be wondering if they should seek a diagnosis.

A drive for perfection is normal
The pressure to conform to societal expectations can be overwhelming, leading many to push themselves to excel in every aspect of their lives. "Undiagnosed Autistic women normalise high achievement,” Jane says. “If I’m doing a degree I am coming away with a First, a post-graduate course, a distinction.” But this drive for perfection can have negative consequences, leading to resentment and isolation from others. "I often find we end up being disliked specifically for [our] perfectionist traits, as they can [feel belittling] to those around us with low self-esteem.”

Over-analysis is common
With a tendency to focus on details, women with autism can spend a great deal of time analyzing every aspect of a task or project, which can result in setbacks, delays or indecision. On top of that, the social anxiety they experience can make communication difficult. This has been the case for Jane. “We ruminate, and overthink, and it is normal for us - our brains do not shut down.”

…And that can lead to exhaustion
One of the main reasons women take longer to diagnose (besides the fact that the tests are not made for them) is that they are far better than men at masking their autistic traits to fit in with what is deemed socially ‘normal.’ When doing this all the time though, it can lead to burnout. “We do not have a filter,” Jane observes. “We say what we think. I socially mask my ‘no filter’ out [because] I live with a fear that I sound arrogant and rude, when I don’t mean to or want to be. We will analyse every conversation, every social faux pas, and we will recriminate ourselves for it, and never forget it.”

Diagnosis can be a relief
For many women with autism, receiving a diagnosis can be validating. It can help them to better understand their experiences and to connect with others who are on the spectrum. It can also provide a roadmap for accessing support and resources that can help them to thrive.

"All the thoughts I used to have about my life being really hard I now realise were totally valid. It turns out my life has been harder than most,” explains Jane. Pre-diagnosis I felt ‘othered’ and ‘wrong.’ Now I know I am simply different.

“I am exonerated and validated.”