Panel 4: "ADHD & race"
Flipped webinar (9/Jul/21): 'Intersectional Approaches to Disability and Race' (here)
Invisible & overlooked: ADHD in Black Women and Non-binary people
Trainee Clinical Associate in Psychology, University College London; Founder and Director ADHD Babes (support group for Black Women and Black Non-binary people)
There have been a plethora of changes across the last eighteen months caused by and in response to the COVID-19 pandemic. One change included the availability and access to information about adult ADHD through online and social media platforms. This has had a huge impact on numerous Black Women and Black Non-binary folk within the UK and across the globe, as it opened the once gatekept and foreign-labeled doors of neurodiversity for us to peer inside and find a reflection of ourselves that was once invisible and overlooked.
The experience of Black Women or Non-binary folk (who were assigned women at birth) is a unique intersection that has a huge impact on how we are socialised and forced to navigate the world.
We have experiences associated with being categorised and socialised as:
Studies have shown 4.9% of women are diagnosed with ADHD in their lifetime in comparison to 12.9% of men. Studies also find women are diagnosed later in life compared with men. Women are more likely to be diagnosed with ADHD (predominantly) inattentive type which is associated with symptoms such as: trouble concentrating, lack of attention to detail, feeling ‘spaced out’, forgetfulness as well as many others. These symptoms in women can, and have been, passed as personality traits or character flaws. Numerous people from our community spoke to this experience, recalling countless school reports with ‘intelligent but just needs to apply herself’ or ‘not reaching her full potential’. Within social networks being seen as having their ‘heads in the clouds’ or as a ‘space cadet’. Our presentations of (what we now know to be) ADHD were considered who we were by people who were responsible for identifying our need for help, and inadvertently by ourselves. The internalisation of these experiences pushed many of us to mask, overcompensate and constantly present as neurotypical as we can, which is exhausting and simply unsustainable.
Many of us from the community, myself included, noted the drastic drop in our ability to maintain neurotypical standards once we moved into more independent learning spaces such as college or university (age 16-19) where the structure was no longer imposed on us and we were expected to prioritise, plan and execute our lectures, deadlines and revision. All executive functioning tasks that are seemingly simple enough through a neurotypical lens, but exhausting for undiagnosed folk without the right support and resources. In these scenarios many of us may drop out, or fail to progress within academia and are missed again by the system until we coincidentally come across a post on TikTok that lists our daily (lack of) routine just a little bit too accurately for us to ignore. The socialisation of women exhibiting the criteria for ADHD means our needs are overlooked and the myth of ADHD being a ‘young white boy bouncing around a classroom’ reinforces this.
In addition to being missed due to how our ADHD is perceived and socialised within society, there is an additional overlap between other mental health conditions such as depression, anxiety and EUPD (Emotional Unstable Personality Disorder) (sometimes referred to as Borderline Personality Disorder). Studies have explored the overlap between the two diagnosis, as criteria identifying ‘interpersonal deficiencies, impulsive behaviour and emotional/affective instability’ can occur across both. However, research has found women with ADHD are more likely to have a diagnosis of EUPD compared to men. These studies involved women with childhood or prior ADHD diagnosis which leaves me questioning how many women who were not picked up as having ADHD have been diagnosed with EUPD and only offered support for this. If our experience of ADHD is being grouped into personality traits, is it also being grouped into other mental health diagnoses? In both scenarios the bigger picture is being smeared with one brush in one color that does us no justice in being understood or understanding ourselves and our needs to live a good quality of life.
2) Black people
The conversation around health inequalities for Black people has been well documented in recent events such as the COVID-19 pandemic and over the last 60 years. Numerous studies have identified Black folk having poorer outcomes with mental health, including higher admission and detention rates, poorer recovery rates, and poor satisfaction with services. As well as poorer outcomes, our experience and treatment within services has historic fractures, with theories such as the ‘cycle of fear’ by Dr Keating and Robertson explaining the impact of prejudice and discriminatory attitudes held by health professionals. This maps on to landmark incidents such as the death of David Bennet after being restrained in a mental health hospital and subsequent inquiries finding services to be institutionally racist. This context can contribute to a fear and lack of trust within services, as well as negatively impact the experience of Black folk when they do seek support.
While experiencing systemic and structural racism from services, Black folk may also be forced to manage cultural difficulties such as stigma and lack of awareness of neurodiversity. Countless members from our group told stories of their struggles being overlooked and dismissed due to their parents’ fear of their child being labelled within the education system. The distancing from disabilities and taboo associated with needing reasonable adjustments forced many of us to suffer in silence or simply forced us out of the room completely. This, coupled with the poorer outcomes within the education system for Black children, paints a multifaceted minefield we are forced to navigate with no map or compass in sight.
3) Black Women
The unique experience and intersection of being a Black Woman combines all of the above and more. Figures showed that 19.3% of Black women screened positive for ADHD versus 3.3% of White Men. When we consider the findings earlier that showed women were less likely to be diagnosed or are diagnosed in later life, there seems to be a gap in identifying our needs and providing the necessary support, which Collins refers to as the ‘racial medical gap’. Contributions to this include the dismissal and minimisation of the Black woman’s struggle. We have had numerous stories shared from Black Women of being denied referrals from their GP’s as their symptoms did not appear ‘severe enough’. We have had members being told during assessment that they fit the criteria for ADHD but not the threshold as the symptoms have not ‘impaired their quality of life’ enough. My question is, to whose standard? The cultural pressures of Black Women to be strong, nurturing, organisers, neat and together, as well as the caveats so many of us heard growing up such as ‘you need to work twice as hard as everyone else’, create little to no room to struggle out loud. Cue: masking, where we may present as society and culture demands of us, but internally, there is a consequential chipping away at our wellbeing. The ableist assumption that a Black Woman who has managed to tick capitalist boxes of adulthood and therefore is not struggling ‘enough’ to have ADHD is one that blocks many of us from receiving the help we deserve, to strive instead of survive. It also highlights the lack of cultural sensitivity from practitioners in understanding our nuanced experience. Challenging this covert discrimination is further complicated by racist microagressions ascribed to us like the ‘angry Black Woman’ trope when we assert our position and demands. Stuck between a rock, a hard place and a hard rock where our pain is diminished and repressed from multiple angles. We are literally fighting to have our pain seen, and to see it ourselves through a multilayered beclouded lens.
Juggling the racial medical gap, a lack of culturally competent services and cultural pressures leaves us to balance on a single pointed platform while dodging the ricochet of gender inequalities and racism. Our experience is unique in a way that is beautiful and wonderful. Our community is an abundance of joy, creativity and magic, but it is in spite of and despite the barrage of barriers and difficulties we are forced to navigate within society. Women deserve better. Black folk deserve better. Black Women and Black Non-binary people deserve better. One step to creating this change is claiming neurodiversity in a language that tells our stories, speaks in our dialect and includes us in the narrative, in the many shades of our experiences that have thus far been overlooked and invisible.