IN-DEPTH: Patients Struggling to Shed ADHD Label

IN-DEPTH: Patients Struggling to Shed ADHD Label
Children dance with their umbrellas at the launch of an art installation called the Umbrella Project, featuring 200 brightly coloured umbrellas suspended over Church Alley in Liverpool, England, on June 22, 2017. (Christopher Furlong/Getty Images)
Owen Evans
5/25/2023
Updated:
8/21/2023
0:00

As the number of people seeking ADHD diagnoses continues to surge, some patients may face challenges in having their official diagnosis reversed if they come to believe it was incorrect or regret it at a later stage.

The number of adults seeking a diagnosis of ADHD, or attention deficit and hyperactivity disorder, has soared in recent years. Talking to the BBC in January, the ADHD Foundation said it had seen a 400 percent rise in adults going to them compared to before the COVID-19 pandemic.
A recent BBC documentary found that people are turning to private clinics that use quick unreliable online assessments while offering powerful medication, to leapfrog long waiting lists—up to seven years—on the NHS.

Amid mounting concerns surrounding the rise, accessibility, and unreliability of ADHD diagnoses, some patients may want to remove a lifelong ADHD label, considering that this often leads to long-term treatment with medications such as Ritalin, methylphenidate, and lisdexamfetamine.

In most cases, a diagnosis of ADHD in the UK cannot be simply removed due to a change of heart. The diagnostic process typically involves multiple assessments and evaluations, and a diagnosis is made based on clinical judgment.

There are also considerations after an ADHD diagnosis.

In the UK, employers cannot legally discriminate against individuals based solely on an ADHD diagnosis. However, for example, an individual with ongoing ADHD will not, by definition, be able to complete pilot training. Medication used for the disorder is normally disqualifying.

Individuals who have been diagnosed with ADHD are also legally required to inform the Driver and Vehicle Licensing Agency if they hold or are applying for a driving license.

Car insurance can also be affected if someone suffers from something that could affect an ability to drive safely.

Alternatively, some employers are actively seeking “neurodiverse” candidates.

Last year, the British spy agency GCHQ and weapons manufacturer BAE Systems issued an appeal to attract more women on the autism spectrum and women with dyslexia or ADHD for cybersecurity roles to address gaps in their workforces.

‘Like a Millstone’

Andy D’Alessio is a campaigner who told The Epoch Times that his life was nearly destroyed when he was wrongly prescribed class benzodiazepines for sleep and consequently is still trying to remove multiple misdiagnoses for different kinds of depression.

D’Alessio consequently spent two years in the hospital, being treated for the wrong condition, and had a major reaction to the drugs, adversely affecting his health.

“I am carrying misdiagnoses like a millstone around my neck. Not only is it incorrect, but it’s also having long-term effects. It’s all on my record and I want it expunged,” he added.

“They’ve left me in limbo. I am still getting gaslighted,” he said.

He said that he knew people that are prescribed ADHD medication.

“What happens when they have prescribed drugs, they fall into polypharmacy, you can guarantee down the line they will be prescribed benzodiazepines, antidepressants, etc.,” he said.

‘A Diagnosis Can Halt Recovery’

Dr. Damian Wilde, a psychologist with many years of clinical and therapeutic experience in the NHS, told The Epoch Times that as people “start to understand themselves, people may start to challenge the diagnosis.'’

“Sometimes, a diagnosis can halt recovery,” he said, adding that people say “I have this illness, so, therefore, I’m always going to struggle to a certain extent,” which can make recovery harder.

“I’m not saying that’s the case for everyone because you will get some people who have had the diagnosis, received really good treatment, and went on to do really well,” he added.

On an ADHD diagnosis, he said that “once something’s been stamped on someone’s medical file, it’s almost like it’s set in stone.”

He said that adults who challenged psychiatric diagnosis have sent “letter after letter after letter, and face a sort of arduous process, which is distressing for them.”

“But it’s strange in a way because there isn’t actually categorical proof that this disorder exists,” he said.

Wilde says that though ADHD isn’t an illness in the way many people think it is, the struggles and distress are very real.

While some may celebrate the label, others surrender to it. The problem with an ADHD diagnosis is that it can become part of a person’s identity, which can halt recovery from otherwise resolvable issues.

“A formulation gives a personalised individualised understanding of a person which a diagnosis can’t,” said Wilde.

‘Beginning to Lionise Traits Around Vulnerability’

Ben Harris, a psychotherapist in private practice in London, told The Epoch Times that the recent BBC documentary suggested that private clinical psychology practices in the UK may be willing to make an ADHD diagnosis on as little as 45 minutes spent with a patient on Zoom supported by generic questionnaires “asking questions many of us could say yes to, at least some of the time.”

“For example, how many of us could say we don’t struggle to concentrate sometimes? Clearly, there’s an underlying demand for diagnoses of this sort, otherwise, clinics wouldn’t be offering easy access to them in exchange for the payment of a fee,” he said.

Harris said that we live in a culture that, over the past couple of decades, has “started to provide additional resources to those who signal they are vulnerable.”

He said that some might say we are “beginning to lionise traits around vulnerability, marking mental health diagnoses as desirable, even admirable,” pointing to certain communities on TikTok.

“We can see some practical benefits to this—more time in exams, or accommodations at work, for example. No one is suggesting that these are bad things in themselves, but they create an incentive structure in favour of diagnosis,” he said.

“But we might sometimes see the achievement of a diagnosis as an alternative to the hard work of personal growth and characterological development, difficult but ultimately empowering,” he added.

“In more practical terms, because the NHS views mental health diagnoses as objective mental illnesses, an over-concretisation in my view, it’s very hard to remove a diagnosis once it’s been made,” said Harris.

A diagnosis, he said, can “follow you for many many years, perhaps your whole life.”

“Social attitudes can change quickly. It’s not so long since having a mental health diagnosis carried much more of an unfair stigma,” he said.

“A category you wanted to fit into at one time can become a category you'd quite like to get out of at another. An underlying problem here in my view is that ADHD is a convenient catch-all. People think because there is a named disorder we know what it is. We don’t. It’s a set of symptoms that have as many meanings and as many ways to be experienced as there are people who have been given a diagnosis.”

Neurodiversity Movement

Jeff Fullington, who has ADHD and has worked with that population professionally in the United States for many years told The Epoch Times that, “ADHD and autism are threshold diagnoses, one could have either condition without their symptoms meeting the standards of clinical significance.”

He said that ADHD is not a “mental health diagnosis, but many in the field can mistake it for one.”

“You can be mildly or minimally autistic/ADHD but the traits may not be prominent enough or observable enough for an actual diagnosis,” he added.

Fullington said he comes from an approach of “personal agency, self-determination, and internal focus of control, rather than relying on external factors to help manage or alleviate” the condition.

Neurodivergent, which describes an actual brain that is different from the norm is different from neurodiversity, which is associated with the neurodiversity movement—a political movement that aims to “dismantle the neurotypical norms and replace them with new divergent norms around autism and ADHD.”

Fullington said he believed the neurodiversity movement was “disempowering.”

He said it said the movement believes “there’s nothing you need to do in a society that’s failing to meet your needs, and you should dismantle or rearrange society to the point where you like it’s more normal toward your needs.”

“I’m an advocate of self-accommodation,” he said. “The individual person with ADHD or autism should learn more about it for themselves and what they can do to accommodate them and meet their needs around a particular condition, rather than rely on employers or other people to figure out how to accommodate them.”

Owen Evans is a UK-based journalist covering a wide range of national stories, with a particular interest in civil liberties and free speech.
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