Background
Attention-deficit/hyperactivity disorder (ADHD) is a highly prevalent psychiatric disorder with a world-wide prevalence of around 5.9% in children and 2,1% in adults. Core symptoms of ADHD include persistent levels of inattention, hyperactivity and impulsivity, that can interfere with daily functioning (as defined in the DSM-5). Both children and adults are at risk of experiencing stigma, prejudice or discrimination related to their ADHD. ADHD stigma is rooted in misapprehension, distrust of, and resistance to the concept of ADHD and its diverse symptoms. In addition, the absence of diagnostic instruments perceived as (more) objective (e.g., biological, environmental) as well as the significant variations between expressions of ADHD among people of different age and gender (e.g., symptoms/characteristics and comorbidities) form fertile grounds for stigma.
Objectives
The objectives of this study are to gain insight into
- the manifestations of ADHD and ADHD-related stigma in the daily life of (young) adults, children and their parents, and
- the gender-specific needs for care and support for people with ADHD and their family
We do so by exploring (young) adult and parent perspectives, as well as health provider and primary school teacher perspectives.
Approach
We organise in-depth focus group discussions with different stakeholder groups. We talk about the key challenges they are experiencing related to ADHD. Specifically, we talk about ADHD-related stigma and the impact on one’s life, as well was the needs for and perspectives on reducing stigma and facilitating social inclusion.
Men and women with ADHD talk about the challenges they are facing in daily life as well as their experiences with ADHD-related stigma at home, in their relationships, at school, and at their workplace(s). Some key experiences shared by respondents include a lack of societal acceptance of (implications of) ADHD diagnoses, exemplified by negative views such as ADHD being a ‘fake diagnosis’, ‘excuse’ or ‘fashion phenomenon’:
“I have often heard ‘oh yes, you want to belong, don't you?’. Then you really don't feel understood. […] That really hurts, because it confirms everything that I internalised. That is kind of a slap on a button that is already pressed all the way. That really is difficult” (Woman with ADHD)
In addition, all (young) adults shared experiences of limited, rigid and/or reductive understandings of ADHD, both in society and within themselves:
“I had mustered the courage to then tell my supervisor at work, and his response was actually such that he could not recognise the diagnosis in me. For me, that gave the impression of “oh, he doesn't believe it or he doesn't get it or he doesn't get me”, and that had an impact on me […]” (Woman with ADHD)
“Oh but those [people with ADHD] are hyperactive boys in class and that’s not me” (Woman with ADHD)
Lastly, respondents shared experiences with limited flexibility and openness towards working with strengths related to ADHD, undermining meaningful contribution and participation:
“I am quite creative, I want to use that. But that wasn't really desired apparently […]. Then indeed, it seems like I don't function properly, because I only do things that I'm not very good at” (Woman with ADHD)