Challenges For Diagnosis, Acceptance For Adults With Adhd

In his white shirt and dark pants, Zulhafiy Zolkipli, 34, looked young enough to be mistaken for a student preparing for his Sijil Pelajaran Malaysia (SPM).

Perhaps in a way, he was trying to evoke a time when life last made sense.

“I was one of the top students in (secondary) school because there was structure. With ADHD (Attention Deficit Hyperactivity Disorder), structure helps you thrive," he told Bernama at a café in University of Malaya (UM).

“But when the time came to do my bachelor’s degree, I was lost.”

He is now doing his doctorate in real estate to make up for a turbulent youth. Over a decade ago, he had dropped out of college three years into his bachelor’s degree, squandering his scholarship. Then he decided to marry at the age of 22 despite not having a stable job. Next, he decided to start a business, without clearing his student debt.

After his first business failed due to missed student loan payments, Hafiy pivoted to real estate, a career he loves. However, when he had to do a diploma to obtain his real estate licence in 2017, he found it "very challenging."

Again, he almost dropped out as attending classes and focusing were difficult.

Hafiy suspected he had ADHD but he wouldn’t be officially diagnosed until 2020, after lockdown started. The COVID-19 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 community support group with Nurul Ellia for other adults who either had or suspected they had ADHD. They are in the midst of turning the group into a non-governmental organisation focused on gaining wider recognition and acceptance by society and the government.

While ADHD is commonly associated with children, Hafiy is part of a growing number of adults in Malaysia receiving ADHD diagnoses. Despite being one of the most common psychiatric disorders in adults, ADHD remains poorly recognised in Malaysia, even within the medical community

Zulhafiy Zolkipli, 34, suspected he had ADHD then but did not get an official diagnosis of ADHD until 2020, when COVID-19 restrictions curtailed his movement and ability to meet clients. He described this period as a roller-coaster, characterized by extreme highs and lows, and became extremely forgetful. --fotoBERNAMA (2024) COPYRIGHT RESERVED

ADHD AND THE COVID EFFECT

It is no coincidence that many individuals Bernama interviewed were diagnosed with ADHD during the lockdown. While the COVID-19 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, 30, told Bernama that the pandemic lockdown was particularly challenging for undiagnosed adults with ADHD, as they suddenly lost access to their usual coping strategies.

“Coping strategies are like water that’s been hiding symptoms. So the water goes down (with COVID-19 lockdown) and you see the symptoms appearing ... like spiky rocks underwater,” she said.

Izzat, who was diagnosed with ADHD in 2021, shared her own experience of struggling when she could no longer maintain her regular exercise routine.

According to the DSM-IV (the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association), ADHD is a neurodevelopmental disorder that typically begins in childhood. It is often characterised by symptoms such as inattention, disorganisation, hyperactivity, and impulsivity.

The World Federation of ADHD estimates that 5.9 per cent of children and 2.5 per cent of adults worldwide are affected by the condition.

Patients are generally categorised into three types: hyperactive-impulsive, inattentive, or a combination of both. Experts stress that ADHD affects executive functioning, not intelligence. For example, Bill Gates, the founder of Microsoft, has ADHD.

In Malaysia, the prevalence of ADHD among children ranges between 1.6 per cent and 4.6 per cent, according to 2020 data, although medical experts believe the actual figure is higher.

Izzat, who also conducts ADHD assessments, warned that untreated ADHD can lead to a range of other psychiatric disorders, including anxiety and depression.

DIFFICULTIES IN DIAGNOSING

Receiving treatment and intervention for ADHD 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 news reports, Malaysia has less than one (0.52) psychiatrist per 100,000 people, far below the World Health Organisation'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.

Despite growing awareness of ADHD in adults particularly in places like the United States, there are still no clear guidelines for diagnosing adults with the disorder, both globally and in Malaysia. Compounding this, some mental health professionals remain sceptical that adults can have ADHD.

Dr Mohd Fadzli Mohamad Isa, president-elect of the Malaysian Psychiatric Association (MPA), acknowledges that some adults seeking an ADHD diagnosis may not have just presented the symptoms recently but were instead not diagnosed in childhood due to many reasons, including lack of awareness from parents and teachers, and stigma. --fotoBERNAMA (2024) COPYRIGHT RESERVED

“If you didn’t have ADHD in childhood, it’s generally believed that it’s almost impossible to develop ADHD in adulthood. This is the prevailing view held by many psychiatrists in Malaysia,” said Dr Mohd Fadzli Mohamad Isa, president-elect of the Malaysian Psychiatric Association (MPA).

He acknowledged that adults seeking an ADHD diagnosis may not have developed the symptoms recently but were instead never diagnosed in childhood due to various factors, including a lack of awareness from parents and teachers, and societal stigma.

In such cases, trained psychiatrists or psychologists at public hospitals will assess the symptoms and interview parents, siblings, and former teachers to gather information on the individual's behavioural and performance history. The primary criterion is that symptoms must have been present before the age of 12.

However, as memories fade and people die, he said trained psychiatrists and psychologists at government hospitals would explore other potential psychiatric disorders and rule them out first.

He also noted that his clinic in Shah Alam has seen an increase in adults seeking ADHD diagnoses.

In private practice, the process is typically faster but more costly. Some doctors forgo requiring a history from parents and former teachers, diagnosing patients solely on their clinical judgement, and assessment of patients' symptoms and behavioural history.

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.

The struggle does not end with a diagnosis, however. Accessing medication can be costly, as patients often have to purchase their prescriptions from private pharmacies due to limited supplies at government facilities.

ANSWERS AND REGRETS

One of the most common refrains Bernama heard while interviewing adults who were diagnosed with ADHD was the question: Why? If ADHD is primarily seen as a disorder of childhood, why did no one notice earlier?

Research has shown that late diagnoses are often seen in individuals with mild symptoms, particularly those who are highly intelligent and high-functioning. These individuals may manage 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 occurred to disrupt the flow.

Dr Fadzli noted that the challenges of adult life, with its unstructured work and family responsibilities, can become insurmountable for individuals with ADHD.

“Some of them 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.

Aina Farhana Mohd Farid, 28, was diagnosed with ADHD two years ago. She says it is important to allow people with ADHD room to flourish. --fotoBERNAMA (2024) COPYRIGHT RESERVED

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 would get the ‘underperforming’ moniker.

"Inattentive types are often underdiagnosed because they don’t disrupt the class. They might be staring blankly at the blackboard, but teachers may not notice them, unlike the hyperactive ones who cause so many problems,” said Dr Fadzli.

Research also suggests that individuals with this type of ADHD are often girls, who are better at masking their symptoms due to societal pressures.

Aina Farhana Mohd Farid, 28, falls under this category. She told Bernama that 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 ADHD when I started having a stable career, as I encountered challenges at work, such as time blindness," she said, adding that she felt fortunate to work in a company that values inclusivity. 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 with ADHD in 2022 after struggling during the lockdown. He describes his condition as “a gift."

Daniel 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 in 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. However, despite his past regrets, Daniel credits ADHD for his success. He believes that the hyperfocus aspect of ADHD has made him relentless in achieving his goals, which may have also damaged a few relationships along the way.

Founder and academic director of Barista Guild Asia Daniel Lew, 52, credits the hyperfocus aspect of ADHD for his success, saying it made him relentless in going after his goals. --fotoBERNAMA (2024) COPYRIGHT RESERVED

SPEAK UP OR SILENCE

In Malaysia, ADHD is recognised as a disability and adults diagnosed with ADHD are eligible for the People with Disabilities (OKU) card from the government. This card grants various benefits, including an allowance for individuals earning less than RM1,500 per month, and tax breaks for those who qualify.

However, many hesitate to apply for the OKU card while others believe that being open about their diagnosis could help reduce the stigma surrounding an ADHD diagnosis. While some individuals may feel relieved to finally receive an ADHD diagnosis, they also worry about the potential social and professional repercussions of being open about it.

Despite laws promoting inclusivity and prohibiting workplace discrimination based on disabilities, Dr Fadzli noted that a strong stigma still persists against mental health conditions, including ADHD.

Even the so-called superpowers associated with ADHD, such as creative thinking and hyperfocus, may not be enough to shield patients.  

Instead, Dr Fadzli suggested that individuals prove their worth first before disclosing their diagnosis to their employer.

"When you claim to be OKU or have an OKU card, people tend to think you're at a level below the expected competence. Any advantage you may have, they won't be able to see it,” he said.

Nevertheless, Hafiy encourages adults with ADHD to apply for their OKU card. He told Bernama doing so would normalise the condition and promote greater acceptance.

‘I believe it's important (to get the card), especially for the majority. It’s crucial for the data and statistics. Without it, how can the government address (the needs of) adults with ADHD? They won’t have the necessary information,” he said.

Edited by Salbiah Said