When talking about ADHD, often the focus is on aspects of diagnosis, treatment plans, and therapeutic strategies. However, living with ADHD also requires a different kind of coping mechanism: advocacy. In this context, advocacy takes on two forms. The first is the most important form of advocacy for an individual, which involves speaking up for one's healthcare needs or the needs of one's children or other family members. The first few steps of this might be simply becoming aware that ADHD offers an explanation for long-standing problems, then raising the issue with a GP, or finding a clinician for an ADHD assessment (not an easy task). The second type of advocacy is voluntary; an often-overlooked aspect that involves promoting wider awareness and societal change.
Self Advocacy: A Requirement for Wellbeing
For individuals with ADHD, advocacy is not just a choice; some of it is essential for anything to happen at all. Navigating the health system to obtain a diagnosis, secure a treatment plan, or to acquire suitable medication requires the individual or their caregivers to be proactive. You may have to explain your symptoms multiple times to different healthcare providers, you may need to argue for a specific medication or treatment that you believe will suit you better, or you may need to request accommodations at work or university. This constant act of speaking up and fighting for one's own welfare can be emotionally draining, but it is often essential for obtaining appropriate care.
Parents of children with ADHD face similar challenges. They must often advocate for their children's needs within an educational setting to ensure they receive appropriate accommodations. This includes everything from attempting to educate teachers or other school staff on how ADHD presents, to asking that medication be dispensed during the school day, to ensuring their child isn't unfairly labelled as 'disruptive', 'naughty', or 'lazy'. And they have to do this every year.
Social Advocacy: A Path Less Travelled
The other form of advocacy is a more altruistic form of advocacy aimed at wider societal change. This could involve public speaking, writing articles or blogs or making videos, or organising events or training opportunities. Even telling people that you have ADHD and adding your perspective to a conversation or providing useful links to resources is a type of advocacy. While this type of advocacy is not compulsory, it can be immensely valuable in de-stigmatising ADHD.
Not everyone chooses to engage in this form of advocacy. The reasons vary—some people may not have the time or emotional bandwidth, while others may prefer to keep their diagnosis private. Social anxiety, or fearing rejection or negative outcomes of identifying oneself as having ADHD are also relevant reasons. I have had more than one client who has decided not to inform their employer of their diagnosis due to fear of being unfairly treated, passed over for promotion, or even fired or rejected by colleagues. A person's desire or ability to advocate can wax and wane depending on life stage and life circumstances. It's hard to do these things if you or a dependent, or your whole immediate family are neurodivergent. But it might be easier when the kids get older or move out of home. There's no obligation to become a social advocate for ADHD awareness, and that's okay.
Balancing the Two
Recognising the dual nature of advocacy within the ADHD community is helpful. While self advocacy is needed to access proper care and treatment, social advocacy serves the larger purpose of public education, de-stigmatisation, and wider societal change. Both contribute to the larger picture of ADHD awareness and understanding.
As healthcare professionals, friends, or family members of those with ADHD, understanding this dual role can better equip us to offer support. It can inform us how to be advocates in our professional and personal roles and how to support those living with ADHD to engage in self-advocacy, at whichever level they are comfortable.