“I was one of the top students in secondary school because there was structure. When you have ADHD, structure helps you thrive. But when the time came to do my bachelor’s degree, I was lost,” Hafiy told Bernama recently.

Over a decade ago, he had dropped out of college three years into his degree, squandering his scholarship. Then, he decided to marry at age 22 despite not having a stable job. Next, he decided to start a business without clearing his student debt.

After his first business failed, Hafiy pivoted to real estate, which he loves. However, when he had to do a diploma to obtain his licence in 2017, he found it “very challenging”. Again, he almost dropped out as attending classes and focusing were difficult.

While he already suspected he had attention deficit hyperactivity disorder, he wouldn’t officially be diagnosed until 2020, after pandemic lockdowns were in place. Covid restrictions, which limited his ability to meet clients, led to extreme highs and lows, along with increasing forgetfulness.

Following his diagnosis, Hafiy began researching ADHD and co-founded a Facebook support group for adults who either had or suspected they had ADHD. He is in the midst of turning the group into an NGO.

While ADHD is commonly associated with children, Hafiy is part of a growing number of Malaysians who received a diagnosis as adults. And despite being one of the most common psychiatric disorders in adults, ADHD remains poorly recognised in Malaysia, even within the medical community.

ADHD and the Covid effect

A neurodevelopmental disorder that typically begins in childhood, ADHD is often characterised by symptoms such as inattention, disorganisation, hyperactivity, and impulsivity.

The World ADHD Federation estimates that 5.9% of children and 2.5% of adults worldwide are affected by the condition. In Malaysia, prevalence among children ranges between 1.6% and 4.6%, according to 2020 data, although medical experts believe the actual figure is higher.

While the pandemic lockdowns highlighted mental health issues like depression and anxiety, adult ADHD remained largely overlooked, even as demand for ADHD medication surged during that time. Today, there is still a shortage of such medication.

Clinical psychologist Izzat Zaid told Bernama that the lockdowns were particularly challenging for undiagnosed adults with ADHD, as they suddenly lost access to their usual coping strategies.

Izzat, who was diagnosed with ADHD in 2021, said she herself struggled when she could no longer maintain her regular exercise routine.

Untreated ADHD can lead to a range of other psychiatric disorders, including anxiety and depression, Izzat added. But receiving treatment and intervention begins with a diagnosis, which is not always easy to obtain.

In Malaysia, only clinical psychiatrists and psychologists can provide an official diagnosis, and there is a shortage of both. According to reports, Malaysia has less than one (0.52) psychiatrist per 100,000 people, far below the World Health Organization’s recommended ratio of one psychiatrist per 10,000 people.

Additionally, as of 2022, the Mental Health Aid Organisation reported that there were only about 300 registered clinical psychologists in the country.

And despite growing awareness of ADHD in adults, there are still no clear guidelines for diagnosing grown-ups with the disorder, both globally and in Malaysia. Compounding this, some mental health professionals remain sceptical that adults can have ADHD.

“If you didn’t have ADHD in childhood, it’s generally believed it’s almost impossible to develop ADHD in adulthood,” said Dr Mohd Fadzli Mohamad Isa, president-elect of the Malaysian Psychiatric Association.

He acknowledged it is likely that those seeking an ADHD diagnosis as adults may not have developed the symptoms recently, but instead went undiagnosed in childhood because of factors including a lack of awareness and societal stigma.

In public hospitals, trained psychiatrists or psychologists assess symptoms and interview parents, siblings and teachers on the individual’s behavioural and performance history. The primary criterion is that symptoms must have been present before age 12.

In private practice, the process is typically faster but more costly. Some doctors forgo a history from parents and teachers, diagnosing patients based solely on an assessment of their symptoms and behaviour.

This lack of standardised guidelines has raised concerns among some circles that individuals diagnosed with ADHD may not actually have the disorder, potentially resulting in incorrect medication or inadequate treatment.

And the struggle does not end with a diagnosis: accessing medication can be costly, as patients often have to purchase their prescriptions from private pharmacies because of limited supplies at government facilities.

Answers and regrets

So, if ADHD is primarily seen as a disorder of childhood, why does it often go unnoticed? Research suggests that late diagnoses are often seen in individuals with mild symptoms, particularly those who are highly intelligent and high-functioning.

These individuals may have managed to conceal or cope with the disorder until adulthood, when the demands of life become overwhelming. Even then, they often only seek help when something drastic occurs to disrupt the flow.

Fadzli notes that the challenges of adult life, with its unstructured work and family responsibilities, can become insurmountable for those with ADHD. “Some really struggle at work, especially as they climb the corporate ladder. That’s when they finally see a doctor,” he said.

The type of ADHD also plays a role in whether or not an individual is diagnosed early. Inattentive ADHD, the most common form, is often overlooked in children, especially if they perform well enough to go under the radar. In many cases, they are labelled as “underperforming”.

“Inattentive types are often underdiagnosed because they don’t disrupt the class, unlike the hyperactive ones who cause many problems,” Fadzli pointed out.

Research also suggests that individuals with inattentive ADHD are often girls, who are better at masking their symptoms. Aina Farhana Mohd Farid, 28, falls into this category: during her school years, people often assumed she was “stupid” or “slow” because of her quiet nature.

It wasn’t until 2022 that she was diagnosed with ADHD. “I started asking my doctor about it when I had a stable career as I encountered challenges at work,” she said. Along with ADHD, Aina also has bipolar disorder.

For many, an ADHD diagnosis brings relief. Daniel Lew, the founder and academic director of Barista Guild Asia, was diagnosed in 2022 after struggling during the lockdown. Lew sought help when his inability to focus led to anxiety and blackouts.

“There were times I would become paralysed with fear and, for a while, I just couldn’t think. My staff would ask me simple questions, questions I could usually answer almost immediately, but I couldn’t reply. My brain absolutely refused to work,” he said at his office in Cheras.

Looking back, the 52-year-old recognises that the signs of ADHD were always there. He had trouble sitting still, often argued with teachers, and could never focus.

Despite his past regrets, Lew credits ADHD for his success. He believes that the aspect of ADHD that leads to hyperfocus has made him relentless in achieving his goals, even if it damaged relationships along the way.

In Malaysia, ADHD is recognised as a disability, so adults with the condition are eligible for the people with disabilities (OKU) card from the government. But while some may feel relieved to receive an ADHD diagnosis, others worry about potential social and professional repercussions.

Indeed, despite laws promoting inclusivity and prohibiting workplace discrimination, Fadzli highlights that a strong stigma still persists against mental health conditions, including ADHD. This discourages many from applying for an OKU card.

“When you claim to be OKU or have an OKU card, people tend to think you’re at a level below the expected competence. They won’t be able to see any advantage you may have,” he said.

Nevertheless, Hafiy encourages adults with ADHD to apply for the card, suggesting that doing so would normalise the condition and promote greater acceptance.

“I believe it’s important to get the card, especially for data and statistics. Without it, how can the government address the needs of adults with ADHD? They wouldn’t have the necessary information,” he concluded.