A Pharmacist’s Personal Experience: Breaking Down Stigma to Improve Outcomes in ADHD

“Mom, is having ADHD something I should be sad or worry about?” my 9 year old son asked one day when I picked him up after school.

In that moment, my mind raced to hundreds of possible situations that could have prompted this question. My husband and I have always been open and honest with him about his diagnosis and included him in discussions about his treatment, including his feelings on efficacy and adverse effects.

We have done our best to avoid and address social stigmas associated with attention-deficit hyperactivity disorder (ADHD) and provide him with meaningful responses to address situations.

“No, having ADHD is NOT something you should be sad or worried about! What made you ask this question? Did something happen that I should know about?” I urgently replied with just a tinge of angst in my voice.

“My friend was on the playground crying today. When I asked her why she was crying, she told me that it was because her brother was diagnosed with ADHD. I told her that everything would be ok. I also have ADHD and I’m doing just fine. He may have to take medication. He may have to go to special classes, but not to worry because everything would be just fine,” my son responded.

“Mom, do you think I said the right thing? Is there something else I should have said? Why would her brother having ADHD made her sad enough to cry?”

What powerful questions coming from such a young boy. I understood in that moment the significant amount of social stigma I would have to unpack with my son. Misconceptions about the diagnosis reduce the credibility of health care providers and delay or prevent treatment for patients suffering from this disorder.¹

This situation brings added focus to the 2021 theme for ADHD Awareness Month, “Reframing ADHD: discovering new perspectives.” It reminded me as a pharmacist mom of my role in educating my community, in addition to my family, as well as the importance of advocacy.²

Like other psychiatric disorders, the diagnosis for ADHD has been developed and refined significantly over time, from its first mention in the DSM-II to its current iteration in the DSM-V.³ Delving back even further, ADHD had characteristics of the disorder first mentioned in text by a German physician in 1775. This diagnostic evolution has been criticized for its subjectiveness and reports of increased prevalence.

The criticism over diagnostic subjectiveness can be countered by the following points: First, diverse trained professionals agree regarding the presence or absence of well-defined criteria; and second, diagnosis is a useful predictor for defining future comorbidities, improving future outcomes, understanding patient-specific response to treatment, and defining features indicating a consistent set of causes for the disorder.

The perception of increased prevalence has been attributed to advances in both administrative and clinical practice changes leading to increased diagnosis.¹ Furthermore, meta-analysis of 135 studies including roughly 250,000 children and adolescents spanning 3 decades shows that prevalence rates remain stable between 5.9%-7.1%.⁴

Prevalence notably decreases as patients mature into adulthood with a reported adult prevalence rate ranging between 2.5%-2.8%. This trend is further highlighted by decreased prevalence in persons 50 years of age and older, with reported prevalence ranging from 1.5%-0.02%.

There are also specific gender and racial differences among groups. Black youths (those 18 years of age and under) have a reported prevalence of 14% and boys have a higher prevalence than girls at a rate of 2 to 1.

As pharmacists, we play a key educational role in helping patients and parents understand that ADHD causation is, for most individuals, an accumulation of genetic and environmental risk factors.¹ This information goes a long way in heightening understanding that factors outside direct patient control—and not individual shortcoming—are likely causative.

Pharmacists are easily accessible community resources who can assist in the breakdown of traditional stigmas associated with being different.

We can help patients recognize treatment in the context of chronic condition management.

We can assist children and parents in gaining an understanding of treatment options that have shown benefit versus those that have not.

We can aid our communities by providing a clear message stating that ADHD is not intrinsically negative.

We can change the stigma surrounding ADHD by reframing the diagnosis into a solution-based mindset that allows for treatment planning, risk mitigation, and evolving treatments.

We can encourage patients to seek multimodal treatment pathways, including behavioral therapy in combination with medication, which is the currently established gold standard of care.

We can inform patients of risks associated with diagnosis—specifically the increased risk of comorbidities, such as substance abuse.

We can explain the importance of continuous clinical follow-up throughout the course of the disorder because treatment should be adapted over time.

References:

1. Faraone SV, Banaschewski T, Coghill D, et al. The World Federation of ADHD International Consensus Statement: 208 Evidence-based conclusions about the disorder. Neurosci Biobehav Rev. 2021;128:789-818. doi:10.1016/j.neubiorev.2021.01.022
2. ADHD Awareness Month. Available: https://www.adhdawarenessmonth.org/
3. Posner J, Polanczyk GV, Sonuga-Barke E. Attention-deficit hyperactivity disorder. Lancet. 2020;395(10222):450-462. doi:10.1016/S0140-6736(19)33004-1
4. Polanczyk GV, Willcutt EG, Salum GA, Kieling C, Rohde LA. ADHD prevalence estimates across three decades: an updated systematic review and meta-regression analysis. Int J Epidemiol. 2014;43(2):434-442. doi:10.1093/ije/dyt261
5. Martínez-Núñez B, Quintero J. Update the Multimodal Treatment of ADHD (MTA): twenty years of lessons. Actas Esp Psiquiatr. 2019;47(1):16-22.