An issue that has been disregarded for years is finally being recognised; gender bias in neurodevelopmental conditions. Women are now coming forward to share heart-breaking stories of how a late diagnosis significantly impacted their life, after they felt out of place growing up.
“I definitely always felt like my brain worked differently,” admitted Charlotte Slark, a PhD student from London. “I remember a friend said that my train of thought wasn’t necessarily on the same track as everybody else’s, it was on a different planet.”
Charlotte was not diagnosed with the learning difference, Dyspraxia/Developmental Coordination Disorder, until her early 30s, when she had just started her PhD.
Unfortunately, she is one of many women who are not diagnosed with neurodevelopmental conditions until later in life, with difficulties being missed throughout childhood. It has been found, for example, that the diagnosis of Autism in males is reported to be around four times as frequent as it is in females.
As psychologist and neurodiversity expert, Louise Hilliar, explained, examples of neurodevelopmental conditions include ADHD (Attention Deficit Hyperactivity Disorder), Dyslexia, Dyspraxia and Autism. “I would describe them [these conditions] as being a difference in brain functioning that has implications for cognitive functioning.” In other words, out of the many challenges these conditions can present, common difficulties include poor short-term memory and slower processing speeds.
Kerry Mead, a 44-year-old writer from Bristol, was not diagnosed until March 2021, and recalled how a late diagnosis of ADHD significantly impacted her life. “When I was about 16 my mum took me to see a child psychologist and I was diagnosed for the first time, out of many, with depression and anxiety and put onto medication.”
Ms Mead reflected on her battles with mental health issues throughout her teenage years. “I would say probably from the age of 15 onwards, I was struggling massively with panic attacks, anxiety, a real feeling of low self-esteem of not being able to quite get it right.”
Likewise, Dr. Sarah Bennison, who was diagnosed with Autism Spectrum Disorder and ADHD in her mid-late 30s, had difficulties at school. “When I began high school, I found it difficult to keep on top of my timetable and remembering where I needed to be and when.”
Undiagnosed neurodiverse women can end up feeling depressed and anxious during the years before they receive a diagnosis, as neurodiversity expert Ms Hilliar explains. “I think that there can be lots of mental health issues and I think the longer diagnosis delay, the more severe they can become.”
Ms Hilliar feels that an early diagnosis is crucial, which she believes could make a huge difference to a woman’s life. “If a young woman or girl is not diagnosed then you are missing out on that opportunity to teach them appropriate coping skills and to have appropriate support.” She believes that a late diagnosis could therefore hold them back. “It can lead to an inability to fulfil their potential, possibly financial difficulties if they drop out of education, or don’t get the job that they might have done otherwise.”
Sally Bourliakas, a scientist from Oxford, felt it was a “big relief,” after she received her dyslexia and dyspraxia diagnosis at the age of 52. Ms Bourliakas managed to obtain her diagnosis through “Access to Work,” a scheme that aims to help those with learning differences, disabilities, and mental health conditions to access appropriate support in the workplace.
Unfortunately, the diagnosis did not come soon enough. Ms Bourliakas missed out on achieving the grades that she worked hard for at college and university, and even certain career opportunities. “I think that would definitely have been different if I would have had extra time, and a quiet place to do my exams, so I think that affected my career later in that I couldn’t progress through.”
Ms Hilliar feels that there are multiple reasons as to why females tend to receive a late diagnosis, particularly compared to males. “I think one thing is that these conditions are perhaps less expected to be found in females than males, so the question is less likely to be asked and they are less likely to be referred for an assessment.” She added: “Also, the tools are perhaps more likely to have been developed with males in mind, rather than females, so that might lead to females being missed when they do have an assessment.”
A possible reason for the assessment tools being more catered to males is that the common traits associated with the conditions tend to be linked to male behaviours. “In terms of ADHD, we have a stereotyped picture of a boy in a classroom, who cannot sit still and is quite loud and possibly, disruptive,” Ms Hilliar explained. She contrasted this with the symptoms that girls may experience, which she said could include a lack of concentration and loosing items, rather than being loud and disruptive.
Ms Mead can definitely relate to this, who felt that her late diagnosis of ADHD was mainly due to the fact that she did not suffer from any obvious symptoms. She said: “Growing up I was quite reserved, quiet and academic, quite underconfident, shy, I didn’t really fit those normal parameters of what people in the ‘80s and ‘90s thought that ADHD should look like.”
Although these women finally received an answer, there could still be thousands out there who are struggling with their day-to-day living, unaware that a diagnosis of a neurodevelopmental condition could change their life for the better.
But what can the experts learn from this?
Ms Hilliar explained that there should be more training to help develop a further understanding of neurodevelopmental conditions. “I think it is really important that healthcare professionals and teachers are trained in recognising these conditions, and that there is awareness about co-occurrence and the inherited nature of these conditions.”
For help, visit the websites below:
National Autistic Society – https://www.autism.org.uk/
Dyspraxia Foundation – https://dyspraxiafoundation.org.uk/
British Dyslexia Association – https://www.bdadyslexia.org.uk/
AADD-UK – https://aadduk.org/