Daniel Johnson: ADHD and me

Daniel Johnson, Edinburgh Southern’s Labour MSP for the last six years, is never more animated than when talking about guitars. Not just playing them - but researching, building, modifying, and fixing them. Mention that you share a passing interest in his hobby, and he will talk at length about the difference between Mexican and Korean Stratocasters, the machines Gibson uses in its American factories, the different types of pickups he’s installed in his own guitar. When talking guitars, he speaks in acronyms and technical jargon, assuming the listener knows their coil taps from their humbuckers, but with an enthusiasm that is infectious and charming.

Posing for pictures on a park bench in Braidburn Valley Park, adjacent to his constituency office on Edinburgh’s Comiston Road, he leaves the photographer entertained, but a little confused, as he waxes lyrical about his musical hobby. But having intense interests is a symptom of his neurodevelopmental disorder.

‘Hyperfixation’ is a common personality trait in people with Attention Deficit Hyperactivity Disorder (ADHD), and is characterised by their ability to fixate on a specific task for long periods of time, to the detriment of the world around them.

“If I had the chance I’d do it for days at a time,” said Johnson, “both playing guitars and fiddling with them.

“I’ve built guitars, and modded them – for me, that is just good therapy. I personally need to do things that aren’t just passive, like watching TV or reading, and I’m a born tinkerer. I love pulling things apart and fixing them, that’s my way of relaxing.

“It’s a way of directing my attention.”

Disordered attention, and the inability to meaningfully direct your attention at will, is a defining characteristic of ADHD. People with ADHD can seem restless (‘leg bouncing’ is a common symptom), can act on impulse, and may also have problems with sleep and anxiety.

Johnson, who in October 2017 became the first MSP to publicly reveal his diagnosis with ADHD, says that medicine has helped him regain control of his life, particularly his ability to concentrate, but he still exhibits restless, fidgety behaviours when he has to sit still for too long – such as during an interview with Holyrood.

Daniel Johnson chatting to Holyrood's Joseph Anderson

 

According to the NHS, most cases are diagnosed as a child, due to behaviours exhibited at school, such as being disruptive or being unable to apply themselves. However, many adults slip through the net unnoticed, especially if they are considered academically gifted, due to the unhelpful stigma that people with ADHD cannot be successful.

The Scottish ADHD Coalition says between 2.5 and four per cent of Scotland’s adult population would benefit from treatment, but less than 0.1 per cent are taking ADHD medication, and the effects of living with an undiagnosed disorder can be devastating for a person’s mental health, career and relationships, as Johnson found out.

Ten years ago, in the early 2010s, Daniel Johnson was in a very different place to the MSP we know today, as he believes his then-undiagnosed ADHD damaged his career in his father’s business, and his relationship with his wife Jackie.

“I was, in retrospect, in a very depressed state,” said Johnson, “and that led to a lot of anxiety, and being very argumentative.

“I developed borderline nervous tics. It was a real tipping point for me, realising I was talking about myself in very, very negative language. Stuff you wouldn’t say to your worst enemy.

“At one point, I had just walked into work, and I started berating myself. I realised I wasn’t just thinking it, I was actually saying it.”

Prior to becoming an MSP, Johnson worked as the managing director of his family’s business, encompassing the Paper Tiger stationary shops and the Studio One furniture store, which was founded in 1967 by his father, and based in the west of Edinburgh.  

Due to his undiagnosed condition, Johnson struggled with keeping up with admin work, and medium-term tasks went unfinished, leading to feelings of guilt that compounded his turbulent mental health.

“I was working for myself, working and running a small business and things were just really spiralling,” said Johnson.

“I was not staying on top of the routine things, bills were piling up, I was letting down the other people that that worked in the business, and not just the people that worked for me, but also my business partner.”

Johnson said that when he told his father about the guilt he felt, years later, he was told “to stop being silly”, but still feels he wasn’t “half as successful as his father was”.

Johnson also admits that “at home, there were a lot of tensions”, but it was the intervention of his wife Jackie that led to him seeking help.

“It created a lot of tension, and a lot of arguments,” said Johnson, “it was very frustrating for her, frustrating in the sense that, I was in this constant cycle and it was a real strain.”

At his lowest, Johnson harboured fleeting, dark thoughts about not wishing to live anymore, but insisted he was never in a position where he might have acted on those thoughts.

“I really doubt there’s anyone who hasn’t at some point, or gone through some period, of having that thought rattling around their head,” said Johnson.

“And I think that’s okay. I think one of the most important things to realise, generally, with mental health, is that no one is 100 per cent happy 100 per cent of the time, and it’s about finding the equilibrium.

“Different people, for different reasons, can find that difficult, and one of the things I’d like to be included in the discussion around mental health is that sometimes that reason is a neurodevelopmental disorder.

“I have spoken to so many people with ADHD that say that is a common experience. The interesting thing is, it’s very similar to people with autism spectrum disorders as well.”

After a lengthy process, Johnson was finally diagnosed with ADHD in early 2013, at the age of 35, something he credits his wife Jackie for, with whom he has two children.

“It probably took about a year to get to the point where I actually found the right path to diagnosis,” said Johnson.

“When you’re thinking you might have ADHD, for me at that point, I wasn't even sure if the GP was the right person to talk to. And there is an overarching problem here, in wondering where does ADHD sit? Is it your mental health? It’s not in the box of psychiatric disorders. It’s not anxiety and depression and mental health. It’s in this other space.

“With regards to Jackie, I’m very grateful to her for putting two and two together, because it’s just not something that would have occurred to me

“There’s no doubt in my mind that diagnosis and medication have been hugely beneficial for our relationship, and I do wonder what might have happened if I hadn’t. I wouldn’t want to put it as strongly as saying, ‘this saved our relationship’, but there was a real risk that’s where things could have ended up.”

Following his diagnosis, Johnson was prescribed a slow release formula of methylphenidate, commonly known by the brand name Ritalin, and sees adult mental health services at least once a year.

The diagnosis, and the medication, took Johnson on a path from misery to MSP. He was selected as Scottish Labour’s candidate for Edinburgh Southern in early 2014, leading up to the 2016 Scottish Parliament elections, which saw Johnson unseat the incumbent Jim Eadie, who was then a member of the SNP.

Johnson described the diagnosis as a ‘eureka moment: “I think the most important thing is having that diagnosis. The most useful and valuable thing is it provides a bit of a framework.

“I think a lot of people when they get the diagnosis there is a bit of a eureka moment. It's like, ‘oh, that's why those things happen, that's why I find these things difficult while others don’t, that's why I behave in the following ways’.

“The key thing for me is that it explained some things I wasn't even seeking explanation for. So, sensory hypersensitivity is quite often associated with ADHD, and, you know, I've always been, like, bizarrely overly ticklish for example, I know that sounds weird.

“The other thing is there are issues around emotional regulation. Again, I hadn't really been seeking an explanation for that, but as a child, and even now, if I’m being picked on I could end up crying, even at times it was inexplicable. And at the other end, with laughing, if you told me the right joke I just simply could not stop.

“Just having the diagnosis allows you to understand those things, understand that you need to be mindful that too much stimulation can take your mind in different directions, and also being aware of where your focus is.

“Having that map of how your head works, and the awareness of the pitfalls, is extraordinarily useful.”

However, it took Johnson a while to go public with his diagnosis after being elected – for fear of stigma, and the misconceptions that some people attach to ADHD.

“I still wasn't telling people I had ADHD, absolutely not,” said Johnson.

“I wasn't sure how people would perceive it. I wasn't even necessarily sure how to pitch it. I didn't want anyone to think that somehow, I was asking for special treatment or favours, and I also wasn't sure how people would treat me.

“I was very mindful of the stigma. You know, people who think it’s just a sort of excuse for naughty children and bad parents, I had that knocking around my head.

“I felt very self-aware about taking medication for it, because all the rubbish that's talked about Ritalin and zombie kids.”

The sense of stigma attached to ADHD is what motivates Johnson to be so open about his diagnosis, in the hopes that social attitudes to children and medication can change.

“I do not understand why people have a different attitude to medication that people might take for reasons to do with their mental health, compared to their physical health.

“Just because there are side effects, people don't tell children to stop taking asthma medication, because it can make them nervous or anxious. They don't tell them to stop taking other medications because in extreme circumstances they can stunt their growth.

“We need understanding and consistency, rather being treated as a pariah.”

The stigma that angers Johnson so much has real world implications for people with ADHD.

“I continue again to be quite angry about how ADHD is treated,” said Johnson, “both by the health service and society.

“It is getting better, but we still don't have in place the pathways for adult diagnosis - that is being rolled out, but I won't be happy until that that is delivered.

“We are still getting adults being told by GPSs that they can't possibly have ADHD or autism because they're an adult and they've got this far. That is incredibly unhelpful attitude.

“We still have a problem in terms of that lack of clarity about where you go. And critically, you know, if you approach a GP and you get them to make a referral, people are waiting years and there is a cost to not getting this right.

“About three to four per cent of the adult population have ADHD, but it’s a quarter of the prison population. Among the young offender population, it’s close to half. That is a sign of a failure of public policy on an epic level. And it's not just ADHD. If you look at dyslexia, about half the prison population are thought to be dyslexic.”

A theme emerged during Johnson’s interview with Holyrood – of the pre-diagnosis Daniel Johnson, who struggled with work, his relationship, and feelings of despair and guilt and the post diagnosis Daniel Johnson, the confident MSP known throughout Scottish politics for getting things done.

“The best thing, and what brought about what you describe as ‘Daniel Johnson MSP’, was when I just stood up in Parliament [in October 2017], and said we have to stop talking about prescribing in such pejorative terms, because I take medication - I have things going on in my head, and it's not a bad thing. It's been a very good thing for me, and we need to stop this.

“I think taking ownership of both my ADHD and the fact I am medicated has been really important for me in terms of not being self-conscious about it. I am very at one with who I am.”

When asked what he feels are the main differences between Johnson and his past self, Johnson said: “I think I'm more relaxed. I'm happier. I've just got a much better sense of perspective. You know, I ended up in these almost irrational cycles of depression, real ‘woe is me’ stuff, catastrophising, and I don't do that anymore.

“There’s no doubt that both the awareness of ADHD and critically, medication, just allows me to maintain a better equilibrium.”