ADHD: getting a diagnosis life-changing and liberating for adults who have felt 'on the back foot' for decades

Children's author Marina Magdalena recently wrote a book about a teenage girl with ADHD - only to discover she likely has the condition herself

Two ADHD diagnoses took one UK household from feeling like a family in crisis, to one that thrived on adventure - as experts tussle over whether the condition is being over or underdiagnosed.

In a BBC Panorama investigation, which came out last week, a reporter who was found not to have ADHD by an NHS consultant was diagnosed with the condition by three different private clinics - and was prescribed stimulant medications.

The investigation raised concerns about some private clinics handing out unreliable diagnoses, which could put vulnerable patients at risk - with a common thread emerging from both the journalist's investigation, and other patients he had spoken to: "If you're willing to pay for an assessment, you'll get a diagnosis."

ADHD - or attention deficit hyperactivity disorder - is a neurodevelopmental condition, with key symptoms including difficulty concentrating, hyperactivity and impulsiveness - or a mix of both. It is lifelong and cannot be cured, although the symptoms can be managed with support.

According to the NHS, it's also not known what causes ADHD, although it does tend to run in families.

While some experts have agreed ADHD might be being over-diagnosed, others have raised concerns about what the documentary means for adults living with ADHD who do try to get a diagnosis later in life - especially those who turn to a private clinic due to long wait times for NHS assessments.

One journalist for the Independent, who has the condition, wrote that it "risks making people think that I’m faking ADHD". The UK's ADHD Foundation also raised a number of concerns, namely that the programme "fails to capture the historic inequality of access to health services and lack of priority given to patients with ADHD", and that the NHS also frequently offers medication as a first resort.

Author and neurodiversity parenting expert Marina Magdalena discovered she likely had ADHD, after writing a book about a teenage girl with the condition (Photo: SPCK Publishing/Supplied)Author and neurodiversity parenting expert Marina Magdalena discovered she likely had ADHD, after writing a book about a teenage girl with the condition (Photo: SPCK Publishing/Supplied)
Author and neurodiversity parenting expert Marina Magdalena discovered she likely had ADHD, after writing a book about a teenage girl with the condition (Photo: SPCK Publishing/Supplied)

Undiagnosed ADHD can lead to 'overwhelming sense of shame'

Children's author and neurodiversity parenting expert Marina Magdalena recently wrote a book called About Last Summer, which features a teenage girl with ADHD - only to discover she likely has the condition herself. Her husband and son have also been diagnosed with the condition.

She told NationalWorld living with undiagnosed ADHD can pose a whole host of challenges. "Neurodiversity can impact the way we live, relate, work, organize ourselves, and experience the world," she said.

"There can be struggles to meet deadlines or keep on top of different tasks each day, shifting moods, struggles with concentration, and difficulty maintaining relationships." Living with this undiagnosed can lead to an "overwhelming sense of shame", she said, "which can exacerbate the challenges and can stop individuals from finding solutions to their struggles".

"For instance, if I failed to get the job done on time because I am useless, then the next time I need to somehow just be a better person. If I fail because I am time-blind and lose track of what I am doing, then next time I will set an alarm and plan for distractions."

Magdalena said this was part of why diagnosis mattered so much to people living with undiagnosed ADHD. "Receiving a diagnosis of any kind can go a long way in validating a person's experience," she said. "How liberating to change your internal dialogue from 'I am lazy and unmotivated,' to 'I struggle when I have low noradrenaline and need to find an activity that will give me a boost.'"

It can also open up a conversation in people's families, social circles, schools or workplaces about how best to support them, she said. "If a person is diagnosed as deaf, we don't berate them for their poor ability to hear - we look for solutions to help them. In the same way, understanding a person's neurodiversity can allow homes, services, and workplaces to offer more inclusive and healthy environments."

With an often years-long NHS waiting list for assessment and diagnosis - up to four years in some parts of the UK, i News reports - private clinics could still be a viable option for struggling families who needed help sooner, she said.

Marina Magdalena's husband and son have both been diagnosed with ADHD (Photo: SPCK Publishing/Supplied)Marina Magdalena's husband and son have both been diagnosed with ADHD (Photo: SPCK Publishing/Supplied)
Marina Magdalena's husband and son have both been diagnosed with ADHD (Photo: SPCK Publishing/Supplied)

As a home educator, Magdalena said she was part of a community that had become accustomed to being told no - often to supporting a struggling child with a care plan in school, or to offering a more inclusive educational environment, or even to having time to assess a child, or see a GP.

"The list goes on. Schools, hospitals, and local authorities are overstretched, but that doesn't make the challenges disappear for a family or individual in crisis. Ultimately, people are seeking support, and at times, that only comes in the form of a private clinic."

Women often suffered uniquely with ADHD as adults, as they were chronically under-diagnosed as children. ADHD expert Hester Grainger told Euronews that the condition manifests differently in girls, and many "sadly are misdiagnosed with everything from BPD [Borderline Personality Disorder] to bi-polar, generalised anxiety and more". Across Europe, the ADHD diagnosis ratio for boys to girls was 5 to 1.

Magdalena said that socially, women underwent far more pressure to remain ordered, well-regulated, and on top of things. "Even young girls have spent generations being led towards quieter pursuits, while their male peers are forgiven for bursts of energy, scattered thinking, and messy play."

Women often became "adept at masking", she said, or showing people what they want to see while concealing their struggles. "This internalising not only limits any changes that could be made to better meet their needs, but it also leaves many women feeling guilty and ashamed for not meeting expectations and holding it all together."

Receiving a diagnosis 'a complete turnaround'

Magdalena had already seen first-hand how receiving a diagnosis as an adult can change your life. When their young son Reuben was diagnosed, her husband realised if your child has ADHD, there's a high chance you do too.

“We started to pursue that journey. My husband at that point, would have been about 40 years old… up until that point, he’d kind of struggled a lot with this sense of not knowing how to consistently work, or consistently find joy," she said.

“[He just had] no idea how to self regulate, and just felt a sense of failure. Even though he achieved incredible things, and he was a brilliant dad, and he was living a great life, there was always this sense that he was on a back foot, that he really struggled with."

Her husband was eventually diagnosed with ADHD as well. "Because he was the second one in the family, what that actually led to was us really understanding some of the things that he needed," Magdalena said.

“It wasn’t a luxury for him to go and get exercise, or go on an adventure, or to do some risky play things like motocrossing and things like that… He needed it to be able to really really thrive in life." The family decided to change up their lives after her son and husband both received their diagnosis, she said.

“We had a month of adventure. We went out every evening - just locally - somewhere fun. We’d go swimming in cold lakes, or we would go for a walk, or we would grab our cameras and watch all the nature go to bed.

“All of those things were really important steps for us to begin to carve out a life that felt so much more in tune with the way that we were naturally wired," Magdalena said.

"I think for us, actually receiving a diagnosis did a complete turnaround, from feeling like a family that was struggling and oftentimes in crisis, to actually feeling like a family that loved adventure, thrived on it, and became people who actually... make that happen in our lives."

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