What’s it like to live with ADHD?
by Samantha Earle, User Voice, Project Officer
Last week, Great British Bake Off star, Lizzie Acker dedicated her show-stopping cake creation to her ADHD “as a celebration of being different”.
ADHD is underdiagnosed in women, and its traits are often stigmatised. So, to honour Lizzie’s courage in publicly discussing and celebrating her own neurodivergence, we decided to delve into the experience of women and non-binary people living with ADHD.
Most of the existing literature refers to “women and girls”, thus we use the terms throughout this piece for brevity. However, we acknowledge the problems inherent in discussing sex and gender in binary terms. There is little research on how ADHD manifests in transgender and non-binary children or adults. However, given that a recent meta-analysis revealed that there is some correlation between incidence of gender dysphoria and ADHD[i], particular presentations among this population ought to be the focus of future research.
To bring the scientific research to life, we also called on the lived experience of five wonderful members of the Inclusion Barnet team – Eve, Claire, Laura, Melissa and Alicia, all of whom were diagnosed with ADHD in adulthood.
Attention Deficit Hyperactivity Disorder (ADHD) is a neurodevelopmental disorder that is most often associated with boys and men. Many women are consequently diagnosed only in adulthood, meaning that they have to teach themselves how to negotiate life in a world designed for neurotypical people without the necessary support and understanding.
This lack of support in turn has “implications for long-term social, educational and mental health outcomes.”[ii]
Perhaps the symptom most commonly associated with ADHD is hyperactivity. But the reality is more nuanced. Hyperactivity that manifests in children as ‘acting out’ is more likely to be present in boys.
Where it is present in girls, hyperactivity is more likely to be ‘internalised’, meaning it may manifest as “hyper-talkativeness, high arousal, fidgeting, flight of thoughts, internal restlessness, and emotional reactivity.”[iii]
Whilst there may be genetic and/or hormonal reasons for these differences, it is likely also that they develop in response to social expectations. Girls, for example, are typically held to higher standards of behaviour and compliance than boys.
Holthe and Langvik argue that “When girls display disruptive, hyperactive, impulsive, or disorganized behaviour, they are at risk of harsh social judgment because these violate the norms for feminine behaviour.”[iv]
Laura remembers being able to hide their hyper-activity well, while Alicia recalls that she “was told to be polite and quiet”.
If clinicians, parents and teachers believe that ADHD presents as overt hyper-activity, then boys are more likely to be referred for diagnosis. Furthermore, if diagnostic criteria are based on typical patterns of clinical presentation, this is likely to make it yet more difficult for girls to receive a timely diagnosis or even a referral.[v]
When hyperactivity is present in girls as hyper-talkativeness, fidgeting and emotional reactivity, for example, it is often construed as “emotional difficulties, disciplinary problems, and learning or attention difficulties” rather than ADHD.[vi]
In women and girls, attention disorders are more prevalent manifestations of ADHD. “Inattention may manifest as difficulty completing chores or work-based activities[vii] as well as “forgetfulness, low arousal, internalizing symptoms, daydreaming, and disorganization.”[viii]
For Laura and Claire, this forgetfulness is the symptom that causes them the most frustration and difficulty. Even after a parking mishap resulted in denting her car, for example, Claire found that she rapidly forgot all about it within minutes!
But struggling to complete tasks is what Eve finds most challenging, not least because it is often accompanied by feelings of guilt and inadequacy.
Another symptom of ADHD in girls and women is impulsivity, which “may manifest as a tendency to interrupt others, say whatever comes to mind, act out on impulses, and suddenly change directions in life.”[ix]
This impulsivity represents the strangest dimension of ADHD for Alicia, and in particular when it manifests as failing to think before speaking.
For Melissa, “being a chatter box and a day dreamer…made it hard to stay focused” and resulted in “talking too fast, being impulsive, forgetting my homework and being late for everything.”
Claire laments how her undiagnosed ADHD traits resulted in “turning to clownish classroom antics” to disguise her struggles.
For Eve, getting a diagnosis in her thirties entailed grieving for all the possible alternatives that life could have held for her, had her neurodivergence been recognised earlier on.
ADHD is often associated with various other comorbidities, and “women not diagnosed with ADHD until adulthood are more likely to suffer from depressive symptoms, anxiety, sleep disorders, eating disorders, substance use, and low self-esteem.”[x] So, increasing awareness of its manifestations in women and girls is especially important.
Although living with ADHD can be “frustrating” and “overwhelming” a lot of the time, it must also be emphasised that it has some significant positive manifestations.
Claire and Melissa both point to their problem-solving capacities, which they attribute to their ADHD. Eve, Laura and Claire point to their creativity; while Claire, Alicia and Eve emphasise their heightened empathy. These qualities are precious character traits, “that I wouldn’t trade for anything”, says Eve.
Furthermore, empathy, creativity and problem-solving are sorely needed qualities in society at large. For Melissa, thinking about how her qualities are socially useful helps her to feel more confident.
Inclusion Barnet operates according to the principles of the social model of disability, which recognises that social structures turn impairments into disabilities.
Eve observes that being neurodivergent in a world designed for neurotypical people is frustrating and hard. But she adds that the social model gives her a lens through which to understand her struggles not as an intrinsic deficit but merely as a consequence of rigid and unimaginative social design.
When accommodations for neurodivergence are made, however, this can have significant positive impacts. Melissa, for example, claims that “I now enjoy my brain and my perspective of the world as this really helps me problem solve and think outside of the box.”
Both Melissa and Claire feel that working for an organisation that embodies the social model of disability has changed the way they think about their neurodivergence.
Instead of emphasising shortcomings, there is a shift to social awareness and acceptance of different needs and modes of working. This in turn boosts confidence. As Melissa put it: “This has changed all areas of my life, including my confidence and future goals.”
At Inclusion Barnet, we value lived experience very highly: through experiencing disability you become an expert on it. But there are many facets of disabled experience that are not commonly known. We are therefore seeking to recruit volunteer Community Reporters, who will receive free online training on how to tell these hidden stories. For more information and to register, click here.
[i] Thrower, E., Bretherton, I., Pang, K.C. et al. Prevalence of Autism Spectrum Disorder and Attention-Deficit Hyperactivity Disorder Amongst Individuals with Gender Dysphoria: A Systematic Review. J Autism Dev Disord 50, 695–706 (2020). https://doi.org/10.1007/s10803-019-04298-1
[ii] Young, S., Adamo, N., Ásgeirsdóttir, B.B. et al. Females with ADHD: An expert consensus statement taking a lifespan approach providing guidance for the identification and treatment of attention-deficit/ hyperactivity disorder in girls and women. BMC Psychiatry 20, 404 (2020). https://doi.org/10.1186/s12888-020-02707-9
[iii] Holthe MEG, Langvik E. The Strives, Struggles, and Successes of Women Diagnosed With ADHD as Adults. SAGE Open. January 2017. doi:10.1177/2158244017701799
[iv] ibid
[v] Cf Holthe and Langvik, 2017
[vi] ibid
[vii] Young et al, 2020
[viii] Holthe and Langvik, 2017
[ix] ibid
[x] ibid