SUMMARY: This is the blog post for the flipped webinar Intersectional Approaches to Disability and Race, which was held on 9 July 2021. This blog post explores how the field of ADHD research is grounded in majority white research populations or ignores race altogether; arguably, it produces white knowledge about (adult) ADHD. UK Government data suggests raced and gendered ADHD disparities, but argues that these do not exist. Critical race and feminist questions emerge about ADHD and ADHD lives, experiences and perspectives, but remain unanswered. Medical research is not sufficient. We need a field of Critical ADHD Studies, which is ADHD-affirmative, intersectional, and produced by ADHDers themselves.
BLOG POST
This blog post was originally published here on the website of the Intersectional Neurodiversity and Disability Reading Groups, published on 1 July 2021.
Adult ADHDers – i.e. adults who ‘have’ Attention Deficit Hyperactivity Disorder (ADHD) – are estimated to be, at least, 2.5% of the adult population, and with a gender ratio of 1:1. As an ADHDer and a gay woman, it is interesting to consider that this is a similar if not higher percentage than gay men and women in the UK. If not for other reasons, numerically ADHDers are a significant group. Unsurprisingly, there is no shortage in research about Attention Deficit Hyperactivity Disorder (ADHD). A simple Google Scholar search of ‘ADHD’ comes up with around 999,000 hits. Although two hits on the first page have less than 1000 citations, the rest vary between 1000 and 10,000. ADHD research is big business.
White ADHDers
The most cited hit is a 1997 publication from the “internationally recognized [ADHD] authority” Barkley with a unifying theory of ADHD. A decade later, Barkley et al. (2008) publish the book Adult ADHD: What the Science Says. Looking into this for a project on gender and ADHD, I realise that apparently ‘what the science has to say’ is all but unifying, as 94% of the research participants (N=146) are white ADHDers. But racially distorted data sets are no exception, e.g. see the 83.3% white participants (of N=30) in Solanto et al. (2008), and the 100% white participants (N=17) in Michielsen et al., (2015). These would have been excellent opportunities to critically assess the role of whiteness in ADHD research and research outcomes. Not only was the book not renamed White Adult ADHD, neither do we learn anything, qualitatively or quantitatively, about racial disparities in healthcare provision for ADHDers or the role of race in adult ADHD lives.
Barkley et al. at least mentioned the racial composition of their research population and cautioned that the data should not be extrapolated, but neither is common (to exemplify, see N=431 in Able et al., 2014; Faraone et al., 2006; N=345 in Kessler et al., 2010; N=536 in Reimherr et al., 2005; N=6 in Sedgwick et al., 2019; N=40,103 in Solberg et al., 2018; N=146 in Spencer et al., 2005; N=682 in Vildalen et al., 2019). Race is similarly ignored in UK reports about ADHD (e.g. Shire Pharmaceuticals & Demos, 2018; Takeda Pharmaceutical, 2019) as well as in the two decades of international Consensus Statements (e.g. Barkley et al., 2002; Kutcher et al., 2004; Remschmidt, 2005; Kooij et al., 2010; Young et al.’s, 2011; Young et al., 2016; Young et al., 2020).
Recent Consensus Statements show more racial awareness. Kooij et al. (2019, p.25) briefly mention that age, gender and ethnicity can contribute to anti-ADHD stigma. And this year Young et al. (2021, p.4) report that “lower rates of detection have been reported among minority racial/ethnic groups in the United States and,” they suggest, “more research is required to examine biases in operation for ADHD treatment in relation to ethnic and racial status in the UK.”
White ADHD knowledge construction
Still under the illusion that I would find a significant amount of research on race and ADHD, I intended to go through all those publications, but Cénat et al. (2021) beat me to it with a systematic review and meta-analysis. Searching for publications (1979-2020, in English or French) on the prevalence and risk factors of black ADHDers in effectively white-majority countries (e.g. USA, Canada, UK, France), they only found 21 studies (N=154,818), and all from the USA. I want to emphasise this point: Cénat et al. found no studies – on childhood, adolescent or adult ADHD – outside the USA (in English or French) that provided any significant information about the prevalence of ADHD among black folks. And of those 21 studies, only two studies concerned black ADHD adults, with a mere total of 207 participants (i.e. Lee et al., 2008 with N(total)=108, n(black participants)=9; Kessler et al, 2006 with N(total)=1219, n(black participants)=198). Obviously, the intersection of race and ADHD is neither restricted to black ADHDers – in the UK, for instance, we urgently need information about Asian ADHDers (see table below) and Traveller ADHDers (ignored in the table below) – nor to ADHD prevalence and risks (e.g. see the work of Waite et al., 2009; 2010). I would suggest, though, that the lack of such basic knowledge is significantly indicative of the field’s overall lack of engagement with race.
By now, it is fair to make the very simple – and both unsurprising and shocking – point: effectively, there is a field of (adult) ADHD research where we do not really learn about (adult) ADHD, but about white ADHD and white ADHDers, with neither reflection nor acknowledgment. Perhaps we should say that white knowledge about (adult) ADHD – or ADHD whiteness – is produced. Thus, there is a shortage in ADHD research, but this concerns research that investigates the ‘multiracial’ reality of (adult) ADHD and ADHD research populations.
UK Government Data
The importance of learning about the role of race in UK adult ADHD lives is urgent. Consider, for instance, the 2014 NHS Digital/Government data on the gendered racial composition of those of 16 years and over “who screened positive for ADHD in the past 6 months”:
Bar the white British category, in all other racialised categories women screen more often positive for ADHD than men – note that this is contrary to ADHD research. This is particularly the case for black women: black women screened positive four times higher than black men, and give or take two times higher than women in all other categories. All the same, it is concluded that “in 2014, there were no meaningful differences between ethnic groups.” Surely an almost 20% prevalence of ADHD in a population shouldhave set in motion emergency follow-up research and ADHD organisations demanding specific policy – alas.
Important questions remain answered. Most importantly, are these data accurate? Screening for ADHD and receiving a clinical ADHD diagnosis are significantly different; is ‘self-screening data’ really representative for diagnoses (for some critical thoughts, see e.g. Asherson et al., 2012)? What is the intersectional role of race and gender, and intersectional bias, in (self-)screening and in the diagnostic process? For instance, there are suggestions of racial bias in providing behavioural diagnoses other than ADHD in black and brown youth (e.g. Fadus et al, 2020), or in providing no diagnosis at all (e.g. Asherson et al., 2012, p.25S); how does this impact the prevalence of ADHD in adulthood? What race and gender-specific barriers do black women experience in accessing ADHD healthcare?
We need intersectional and ADHD-affirmative Critical ADHD Studies
Very different from Critical Race/Whiteness Studies, Gay & Lesbian Studies and generally Disability Studies, there is little development in ‘the field of ADHD Studies’ towards an engagement with the diversity and complexity of ADHD experiences and perspectives, and of epistemological, methodological and theoretical orientations. To the contrary, the current field of ADHD Studies, as referenced above, is grounded in a deficiency approach to ADHD – i.e. research into medication, diagnosis, symptoms, ADHD healthcare, comorbidity, fMRI scans, ADHDers as financial and social burden, behavioural therapy etc. We need to explore how ADHDers are disabled by society (cf. e.g. Begum, 1992) – and not necessarily impaired by (all) aspects of ADHD itself – and the role of (intersectional) raced and gendered disabling factors therein.
There are a few publications that take a critical disability approach to ADHD, sometimes written by ADHDers, but they are rare (e.g. Berezin, 2014; Morrison, 2019; Treftz, 2017). The only texts that I can think of right now that discuss (adolescent) ADHD and race are “Unspeakable offenses: Untangling race and disability in discourses of intersectionality,” in which Erevelles & Minear (2010) discuss the case of the student Cassie Smith, and Annamma’s (2017) The Pedagogy of Pathologization: Dis/abled Girls of Color in the School-Prison Nexus. It is no surprise that both texts concern the field of education; not just because ADHD comes (often) with learning difficulties, but because the assessment of ‘good or bad behaviour’ by teachers is in itself marked by neuro-ableism and its intersection with racism, sexism and classism – with potentially long-term consequences (considering the overrepresentation of ADHDers in e.g. the homeless, unemployed, and prison population). Raced, gendered and classed neuro-ableism can impact which and how black and brown kids receive education (different from white kids), independent of whether the pupils or students actually are neurodivergent (ADHDer or otherwise) – e.g. see Akala’s (2019) autobiographical chapter on his experiences with ‘special education’ or the concerns expressed in ROTA’s (2013) discussion paper.
While medical research urgently needs to employ a critical race paradigm, this is insufficient. We have to ask conceptual and intersectional – race critical as well as feminist – questions: about ADHD; about anti-ADHD inequalities and generally anti-ADHD injustice; and also about the whiteness of neurotypicality and neuro-norms. We need a field of Critical ADHD Studies, which is ADHD-affirmative, intersectional, and produced by ADHDers themselves.