The Brain Charity

Recently, there has been a lot of discussion in the media around women being diagnosed with neurodivergent conditions such as autism and ADHD as adults.

In this guest blog, The Brain Charity’s Employer Relationship Officer Anna Quintal shares her views on why many neurodivergent women are diagnosed later in life, and what this means for their careers.

Why are less neurodivergent women diagnosed early in life?

Working closely with employment project clients at The Brain Charity, I couldn’t help but notice the staggering disproportion of men with a neurodivegent diagnosis in comparison to women.

Most men are diagnosed in school, and the fortune ones are provided with adequate support and understanding throughout their academic journey.

Why are more males than females diagnosed with ADHD and ASC?

The explanation for this gap may be narrowed down to several factors.

Firstly, the world is simply designed for men – from the seatbelts we rely on, to the size of our mobile phones. Equipment and diagnostic tools have historically been designed and measured with men in mind.

Even now, research suggests the Diagnostic and Statistical Manual (DSM-5) continues to have a gender bias (Hartung and Lefler 2019).  

For every woman diagnosed with autism spectrum condition (ASC), roughly 3 to 6 men are diagnosed (UCL, 2018). It is also estimated that the most common age for women to be diagnosed with ADHD is late 30s to early 40s, compared to aged 7 for boys.

What is masking, and why does it affect women more?

For centuries, women have grappled to live in a biased world. Consequently they’ve developed a natural ability to fit in or mask any seemingly ‘socially unacceptable’ traits.

Conditions like autism and ADHD present differently in girls, and the symptoms can often be much more subtle and easier to miss – particularly if, as is often the case, less behavioural problems are apparent.

Women that do externalise their needs are also more likely to be diagnosed with a mental health condition than a neurodivergent condition.

This lack of childhood diagnosis in women means it is likely thousands remain undiagnosed, and it is only with increased awareness online and amongst peers that many are beginning to self-identify and seek diagnosis in adulthood.

An autism and ADHD diagnosis at 39

I spoke to Erin, a Business Change Specialist at Matalan, to find out about her diagnosis experience.

Erin was diagnosed with ADHD and autism aged 39. She is a confident, valued member of the team at Matalan, but her success did not come without challenges.

Like many undiagnosed women, Erin grew up feeling different. She did not seem to fit in, and couldn’t understand societal rules that everyone else just naturally knew. It puzzled Erin’s teachers when she struggled with her schoolwork, and she regularly received the same criticism: “Erin is bright, she just needs to apply herself”.

Neurodivergent conditions can present differently in women. In boys, hyperactivity, disruptiveness and fidgeting have become well-known stereotypical characteristics of ADHD, but women are more likely to internalise their symptoms.

Erin noticed a pattern when looking through her school reports:

• ‘Could be successful, if only she would apply herself’
• ‘Day dreamer’,
• ‘Talkative’,
• ‘Forgetful’,
• ‘Needs to come out of herself’.

Many neurodivergent women are initially misdiagnosed, as symptoms can be more subtle

The problem was that Erin felt she was trying her hardest, often seemingly harder than anyone else. This constant stress causing chronic pain and fatigue resulted in Erin being diagnosed with fibromyalgia in 2013.

Erin always felt that this wasn’t a correct diagnosis, and the more she learnt about neurodiversity, the more she noticed that fibromyalgia shared the same symptoms as autistic overwhelm.

This is something many neurodiverse people experience when they have felt forced to ‘mask’ symptoms for long periods of time and become exhausted from the impact of having to navigate a neurotypical world.

Erin was told she was suffering from anxiety and depression, but she did not agree with this diagnosis either. She was living a happy life but struggled with things others took for granted.

This is a common problem for women, misdiagnosis as a mental health condition only prolongs misunderstanding and a large proportion of women give up before receiving the correct support.

Erin’s teacher’s comments followed her into adulthood and presented as new issues at work and in relationships, as she struggled to accept the traits she was ridiculed for during childhood.

How to get diagnosed with ADHD and ASC as an adult woman

Obtaining a diagnosis proved difficult but Erin persevered, despite being told by one counsellor that ADHD is ‘a little boy’s condition’.  

She now encourages other women to come prepared when requesting a referral from their GP – she completed a symptom checker on Additude Mag, and requested an assessment from Psych-UK using their Right to Choose instructions online. Erin ensured she brought the results along to her appointments to back up her own research.

Post-diagnosis, Erin said she felt relief and clarity on a lot of the unexplained hurdles she faced throughout her life. But this realisation followed a period of grieving.

Undiagnosed women experience years of uncertainty and confusion. Erin grieved for a life unlived, missed opportunities, and the pain she caused others through lack of awareness and understanding of consequences.

Like many other women, Erin was labelled ‘stupid’, ‘lazy’, and ‘ditzy’ enough times that she internalised this criticism, and sadly grew up believing her neurodiverse symptoms were character flaws.

Asking for reasonable adjustments at work as a neurodivergent woman

Receiving a diagnosis can be empowering. Many people who identify as neurodivergent now understand this means under UK equality law they are classed as having a protected characteristic.

This allows employees to feel confident requesting reasonable adjustments from their employers – a legal requirement which can include changes in environment, flexible working and job carving – and taking advantage of government grants such as Access to Work.

The Brain Charity’s employment team believes disclosure of conditions is imperative to working well and recognizing the strengths of your condition and its challenges.

Without adequate support and understanding from their colleagues, women are forced to ‘camouflage’ and hide their true selves. This impacts their energy levels, self-esteem, and overall mood.

How does neurodiversity in the workplace affect women?

Erin continues to face challenges in the workplace, but they are more manageable now she is more self-aware. When she first was diagnosed she didn’t know what workplace accommodations she needed, so worked closely with her manager so they could define the details together.

Erin’s manager at Matalan is committed to learning as much as possible about Erin’s conditions and doing everything she can to support her. Late diagnosis can present a steep learning curve for both staff and management, but Erin’s team are open to learning.

Accommodations to Erin’s role have ensured that she is now working to the best of her ability. New understanding of her restlessness has allowed her to harness this quality and reclaim it as persuasiveness, which has proven very useful as a Business Change Specialist.

New acceptance and understanding of her tendency to overshare and blunt style of communication has improved her relationships both at work and in her personal life.

Matalan is now encouraging Erin to build awareness internally by running neurodiversity workshops for staff across different departments.

By talking about her experience, she hopes both women and men at Matalan will come forward to talk more openly about challenge areas and celebrate their diversity.

Through a combination of medication and her long-awaited diagnosis, Erin has been able to make peace with herself, quiet her internalised criticism and thrive at work. She is working hard to accept herself holistically, and tries to embrace the characteristics that make her unique instead of allowing them to work against her.

By embracing these traits and working with an understanding employer, she finally feels she has become the person her teachers always thought she could be.

Why neurodivergent skills are vital to businesses

It is important to understand that while disability discrimination must be addressed, by labelling those who have neurological differences only as disabled this can fail to recognise the innate talents and skills neurodivergent people possess.

A neurodivergent individual may not be able to easily read text, but they may well be able to visualise the future in a more detailed and exact way then the hundreds of neurotypical people that surround them.

Another might not be able to comfortably socialise within a room full of people, but they might be able to solve extremely complex mathematical problems that the vast majority of people would be totally perplexed by.

The Brain Charity’s workplace neurodiversity training for employers is based around this understanding. By teaching business leaders the benefits of hiring a neurodiverse workforce, and creating more opportunities for people who are neurodivergent, we help them to expand their businesses and give them a competitive edge.

Click here for more information about The Brain Charity’s neurodiversity in the workplace training.