Why an ADHD diagnosis can be a mixed blessing

Published

2 months ago

October 5, 2024

For adults, an ADHD diagnosis can be life-saving. But it can also carry risks.

Joseph Aquilina hates the term attention deficit hyperactivity disorder (ADHD). Aquilina feels that the two Ds in the term ADHD suggest dysfunction. He prefers his own term: attention difference hyperdrive.

Aquilina’s ADHD diagnosis came at the age of 37, 16 years after his diagnosis with dyslexia. The fast-talking Londoner had long thought that his difficulties with focus, memory and planning were due to dyslexia, until the people in his life started asking more questions about his behaviour.

Aquilina was diagnosed with ADHD during a perfect storm of stressful life events. He was working while also seeking to launch a new business, studying for a postgraduate certificate, becoming a father and reflecting on his own childhood experiences. He now works as an ADHD coach, drawing on his lived experience: “I’m like a fly on the wall who is also part of the wall,” he says. In this role he’s seen that it’s common to be diagnosed during a crisis point, as he was. The people he coaches have been holding onto all their spinning plates with threads, he says. “And the plates might crash and fall.”

In the UK and other countries, more adults have come to be diagnosed with ADHD in recent years, with demand exceeding what experts expected. Amid this development, there’s also a growing need for information about the nuances of the diagnosis.

The relief of an adult ADHD diagnosis

ADHD is a chronic neurodevelopmental disorder whose key symptoms include hyperactivity, impulsivity and inattention. One estimate is that it affects roughly 3% of adults.

There are a number of reasons that ADHD is widely underdiagnosed, particularly in adults. ADHD is usually first diagnosed in childhood, and earlier diagnosis leads to better outcomes. It’s common for adults with undiagnosed ADHD to have spent a lifetime masking their behaviours. And most people with ADHD also have other neurodevelopmental or mental disorders, which makes diagnosis more difficult.

Underdiagnosis is especially likely in girls and women and racial minorities, for reasons including the mislabelling that comes with stereotypes. “Most research about ADHD is on men,” says Annette Björk, a lecturer in health sciences at Mid Sweden University, with a background in mental health nursing.

Getty Images Amphetamines increase the level of dopamine in the brain, and can help to relieve some of the symptoms of ADHD – but they can be highly addictive (Credit: Getty Images) — Amphetamines increase the level of dopamine in the brain, and can help to relieve some of the symptoms of ADHD – but they can be highly addictive (Credit: Getty Images)

Life changes may trigger awareness of an individual’s adult ADHD. One example is pregnancy, with its hormonal imbalances and stresses. Or sometimes parents whose children are diagnosed with ADHD come to realise that they themselves have symptoms of ADHD, says Björk. They may not feel impaired by it, however.

Overall, patients and researchers emphasise the many benefits of an accurate diagnosis of ADHD as an adult. “Having a neurodivergent diagnosis explains why you can find it difficult to fit in,” Aquilina says. For him, being open about his ADHD diagnosis is useful “because it means that you can forgive yourself the difficulties you have, and other people can as well”. Other newly diagnosed adults talk about the lifting of an enormous weight, and the progression to treatment that can ease day-to-day activities.

Björk has worked with patients who were not diagnosed with ADHD until their 50s. She believes that even people in their later years may be able to gain valuable self-understanding from an ADHD diagnosis.

She’s even seen that understanding and support for adults with ADHD can save lives. People with ADHD have lower life expectancy, because of suicide, accidents, substance use and other health problems.

Potential drawbacks following diagnosis

But there can also be some downsides to being diagnosed with ADHD as an adult. One is the stigma attached to an ADHD label, which keeps many newly diagnosed people from disclosing this to their employers. Stigma can take varied forms, says Blandine French, a psychology researcher at the University of Nottingham in the UK. Some people have striven so far to normalise ADHD that they joke about everyone having it, which she says is not helpful or accurate.

In addition, it can be difficult for people diagnosed with ADHD later in life to accept that diagnosis, or its timing. They can feel grief and anger about missed opportunities. A minority of people also reject the label because “the reality of having a long-term condition is just too much”, French says.

But in French’s experience, most people eventually embrace their diagnosis and find that it helps them to put support in place and live a better life. This applies to French herself. As with many women, when she was a child her inattention was not seen as disruptive. And as she grew up and moved from France to the UK, her anxiety and depression were not linked to ADHD. It was only on moving to Australia and seeing a new GP that she was referred to an ADHD specialist. At the age of 30, when she finally received an ADHD diagnosis, there was a sense of relief: “It was a very welcome explanation to a lot of the things I was struggling with”.

French says she felt freer and more confident; she realised after a lifetime of struggle that she wasn’t stupid. At the time of her diagnosis, she was working as a restaurant manager. The diagnosis and the following support spurred her to attend university and eventually begin researching ADHD herself.

Getty Images The entrepreneur Richard Branson has spoken publicly about his struggles in school, and the possibility that he has undiagnosed ADHD (Credit: Getty Images) — The entrepreneur Richard Branson has spoken publicly about his struggles in school, and the possibility that he has undiagnosed ADHD (Credit: Getty Images)

While underdiagnosis and misdiagnosis with ADHD are widespread, there is also increasing concern about the potential for overdiagnosis. This concerns Erik Messamore, an associate professor of psychiatry at Northeast Ohio Medical University in the US. For instance, in the US, which allows pharmaceutical advertising, he says that pharmaceutical companies’ marketing strategies have included simplistic online quizzes that would result in just about everyone being labelled as having ADHD.

Messamore argues that the apparent prevalence of ADHD symptoms may be due in part to the hectic nature of contemporary life. According to Messamore, “your lack of attention, or your daydreaming, or your impulsivity, may be your body’s/brain’s way of trying to get you to live at a human scale”. This might involve slowing down, eating well and staying physically active.

Advocates generally welcome today’s greater public awareness of adult ADHD, including through celebrity disclosures and social media information. Yet one consequence can be increased pressure on clinicians to make this diagnosis. Tito Mukherjee, a psychiatrist who is the lead consultant for the Adult ADHD Service at the Cheshire and Wirral Partnership NHS Foundation Trust in the UK, worries that ADHD is being diagnosed too casually in the UK. There’s almost a sense that “you have ADHD until proven otherwise”, he says.

Critics have pointed in particular to overdiagnosis in the private sector. In the UK, some people feel tempted to seek out private-sector assessment because of the long waiting lists on the public NHS. Mukherjee says that the waiting time in his practice is 2.5 years. Across some parts of the UK, it would take eight years to clear the waiting lists for adult ADHD assessment. Prolonged waiting can take an enormous toll on those living in limbo. But Mukherjee is concerned about potential inconsistency in the diagnostic approaches between privately and publicly funded clinics.

Treatment risks for adults with ADHD

There are also practical risks to beginning treatment for ADHD while holding down a job and adult responsibilities. In the US, ADHD medications can affect people’s eligibility for insurance or jobs, because of the risk of testing positive on tests for illegal drugs.

Access to medication is another big issue, which is complicated by shortages of ADHD medications in some places. Insurance providers sometimes encourage the prescription of stimulant medications before trying other types of medication.

Stimulants, which Messamore refers to as “essentially performance-enhancing drugs”, are much faster-acting than non-stimulants. “So if you take a dose of Ritalin, to use the brand name for methylphenidate [a stimulant that acts on the central nervous system], you’re very likely within an hour to notice that you have more energy, more concentration,” he says. “Whereas if you take any non-stimulant medication, the benefits may be there,” but less obvious. The psychiatrist Mukherjee says that the non-stimulants are slower-acting, but longer-lasting.

The stimulant drugs used to treat ADHD

The stimulant medications used to treat ADHD fall into two broad categories: amphetamines and methylphenidates. Both classes of drugs operate on the central nervous system, and reduce ADHD symptoms by increasing the amount of certain chemicals, such as dopamine and norepinephrine, in the brain.

However, both groups of medications can be addictive, particularly if they are not used correctly. They can also affect a person’s mood and sleep – they are sometimes prescribed to treat narcolepsy. Read more from BBC Future about how stimulant drugs are being used to help military pilots to stay awake.

A 2024 study of 16 to 35 year olds admitted to a Boston hospital found a significant elevated risk of mania or psychosis among people taking prescription amphetamines (not just those with ADHD). And this was higher among those older than 22, the median age of the patients. “For individuals older than 22 years, the risk of developing psychosis or mania was 4.1 times higher in patients taking prescription amphetamines compared to patients not taking amphetamines,” explains Lauren Moran, the lead author of the study. This compares to a 2.3-times greater risk for those between 16 and 22.

“The only thing that differed that could explain [the] age effect was that older age group patients were taking higher amphetamine doses,” Moran notes. It’s unclear why their doses were higher, although people taking stimulants for ADHD can build up a tolerance.

Moran, a pharmacoepidemiology researcher at McLean Hospital, as well as a medical director at Sage Therapeutics, cautions: “Prescription amphetamines aren’t going to change [the] fact that an adult has ADHD, but it will just make it more manageable, so expectation should not be that there will be no ADHD symptoms. This may be driving high doses.”

Similarly, Mukherjee says that much of his work as an adult ADHD specialist involves managing expectations: not only the expectation that an ADHD diagnosis is appropriate, but also that where a diagnosis is made, it will solve all of a person’s problems.

Messamore, who has expertise in psychosis and pharmacology, points to research suggesting that real-world rates of stimulant-induced mood destabilisation are higher than what is reported during clinical trials, when participants are carefully selected. He believes that amphetamines are worryingly overused in the US.

Messamore is not anti-medication, he stresses. Medications, including stimulants, have made an enormous positive difference to many people with ADHD. But he has seen inappropriate medicines and dosages prescribed by well-meaning clinicians, such as when a middle-aged man experiencing marriage difficulties was diagnosed with ADHD rather than recognised as someone who was experiencing normal fantasies and mind wanderings. If clinicians’ lack of time or experience leads to ADHD misdiagnosis, overprescription or inattention to side effects, Messamore has observed that patients’ careers can be destroyed as a result.

It’s well established that medicine on its own is not enough for successful long-term management of ADHD. As the saying goes, “pills don’t build skills”. But certain other treatments may come with risks as well.

In the UK, the National Institute for Health and Care Excellence (NICE) recommends cognitive-behavioural therapy (CBT) as the primary psychotherapeutic treatment for adults with ADHD. Yet some adults with the condition have reported feeling that if CBT is generic rather than adapted to ADHD, it can be unhelpful, overwhelming and even harmful – causing them to feel hopeless.

All this indicates the critical importance of finding the right combination of treatments for each person. This requires, at the very least, enough time for clinicians to properly assess each individual. For patients with complex needs, Messamore says, “the five-minute model [of seeing patients for brief appointments] is going to fail them again and again and again”.

Appreciating the strengths of adults with ADHD

At the opposite end of the five-minute model is a year-long programme seeking to holistically address the needs of adults with ADHD for social contact, mental wellbeing and healthy lifestyles. Björk led one such programme for adults, which did not significantly reduce symptoms of ADHD for everyone, but did improve some other aspects of quality of life.

ADHD symptoms can be associated with creativity, curiosity and attention to small details – Erik Messamore

Social support and shared understanding were critical to the participants. Björk says: “What’s special about this group is I can sit with theories from books and so on… but these people have ADHD and have tried everything to cope with life, and they could tell each other how to cope.” One message for professionals is that “it’s important to think that these are humans and not just diagnoses only,” Björk says. “You have to look at the full person.”

Mukherjee’s practice also often treats people with ADHD using an eclectic approach that seeks to affirm people’s skills rather than emphasise perceived deficits. It’s based on an individual’s practical needs, such as the school run or work tasks. The approach could combine life skills coaching on aspects like time management with occupational therapy and relationship training.

Overall, “it’s not all downside,” says Messamore. ADHD can be associated with creativity, curiosity and attention to small details, which he calls “a spectacular recipe for many good things”. Similarly, Björk notes that while she is better able to handle boring tasks, she is slower than her patients with ADHD. Aquilina certainly has both creativity and energy; he is a musician, artist and poet in addition to sitting on the advisory committee of UKAAN (the UK Adult ADHD Network).

One strength of certain people whose ADHD was diagnosed in adulthood is the capacity to advocate for others earlier in their lives. French’s own children have also been diagnosed with ADHD. In addition to her research expertise in ADHD, French’s personal experiences enable her to support them consistently. “I don’t want my children to go through what I went through,” she says.

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