“I don’t believe in ADHD”

…said the doctor (a breast specialist) when I told him about my interest in the subject. I sighed inwardly. This was not the first time that I’d heard this from someone, and it’s a common response that several others have encountered. In “Delivered from Distraction”, Ned Hallowell, a psychiatrist who specialises in ADHD makes the point that ADHD is a well-documented neurobiological condition, not a religious persuasion. So why the deniers? After all, no one denies the existence of autism.

A few weeks ago, I met with a researcher, a psychiatrist, at the University of Cardiff to chat about ADHD. We both agreed that ADHD has an image problem, that it’s not “sexy” and that no one seems to be interested in it. I have to say that I fail to understand why something that arguably affects one in 25 people attracts so little interest, especially when it is implicated in so many social ills and economic costs (Young et al, 2013. read the White Paper here)

It then occurred to me that many of the groups in which ADHD is very prevalent are exactly those groups that politicians and the media love to hate. The unemployed, the underemployed, the homeless, the prison inmates; all these groups contain more people with ADHD than the general population. It also occurred to me that classic symptoms of ADHD like impulsivity, mood swings, disorganisation, procrastination and a lack of concentration in boring situations, are very often portrayed as moral failings by the social norms of western society. It’s far easier to say of someone you don’t like that they are morally deficient in some way than to acknowledge that they may need help. Acknowledging that unpopular groups of people may need additional help would make it less easy to use them as a convenient scapegoat for all that is wrong with society. Witness the demonisation of any vulnerable group from immigrants to social security claimants for examples of that kind of thinking. There may well be a political aspect to the chronic neglect of ADHD.

I was interested in why the breast specialist did not “believe” in ADHD. He explained that, all too often, it is used an an excuse for bad parenting. Now we are all responsible for our behaviour, but if a child has ADHD, then it is likely that at least one of their parents does too. Undiagnosed and unsupported ADHD may well lead to the kind of parenting that we class as “bad”. Of course, there are great parents with ADHD and bad parents without ADHD, but a parent whose kids are always late for school, whose house is messy and who smokes and drinks pretty much fits the “bad parent” stereotype, especially if they are on a low income.  I wonder, does it ever occur to anyone that some of those parents may be struggling with ADHD themselves and could use some support to manage their lives, rather than condemnation? ADHD may be just one factor among many that a parent may need help with, but is a factor that should not be ignored.

Actually, with some probing, it became apparent that the breast specialist did “believe” in ADHD. He called it “true” ADHD, as opposed to the kind of ADHD that a kid may be wrongly diagnosed with for simply acting up. We both agreed that ADHD is over-diagnosed in some areas and under-diagnosed in others, especially in girls and women. It reinforced for me the importance of people that assess for ADHD understanding what ADHD is and what it isn’t. In my opinion, it’s no good simply ticking off a list of behaviours. Many people with ADHD simply don’t display many of those behaviours to the outside world as they have internalised the notion that they are unacceptable/immoral and spent almost all their time and energy struggling to “fit in”. What must be looked for is the operating system that that person is running. What is their working memory like? How well do they do on a test of creative thinking and idea generation?  What do their friends/teachers/parents say about them and their social functioning? How does the person describe their own thinking? It must be taken in the round, and in some quarters, I would like to think that it is. However, if there are so many false positives happening that clinicians begin to doubt the existence of ADHD, something is wrong.

There are some that claim that ADHD does not exist because it is a culturally defined disorder. And, in some ways, they are not wrong. In another culture with different definitions of what constitutes “good ” behaviour, ADHD may not cause any problems, and may even be a desirable trait. However, that does not take away from the fact that ADHD is neurobiological in origin, and many people with ADHD struggle to thrive in modern society without appropriate support. Much as I would love to change the society I live in, make it value creativity more and overhaul the mainstream educational/workplace systems so that they meet the needs of more people, that isn’t going to happen any time soon. Besides, you could easily broaden the definition of “culturally defined” so that it encompasses nearly all disability. In “The Country of the Blind” by HG Wells, a book that I would love to read, a man stumbles on a society where everyone is blind. Their society is set up for blind people to thrive in, and, in that context, the sighted man is considered to have a disability. By the same token, a society set up by, and for, people that could not walk, would look very different to the one that we have now, and the ability to walk may also be considered a disability. Just because some people believe that ADHD is culturally defined does not excuse denying help and understanding to people that are struggling.

Many people also see ADHD as something that was invented by “Big Pharma” for the purposes of selling medication. I’m sorry, but we have had writings on ADHD (under a different name, perhaps) going back two hundred years, long before Ritalin was invented (Melchior Adam Weikard, 1775) . And yes, pharmaceutical companies have a vested interest in selling their products. It doesn’t mean that ADHD does not exist. What it means is that clinicians and practitioners should be careful to diagnose ADHD properly, and not use it as a lazy catch-all for certain types of behaviour. Big Pharma cannot give a person ADHD if they do not have it already.

Ironically, there is plenty of evidence to show that ADHD medication is very effective, and does pretty much what it says on the tin, ie improves concentration. That won’t help a person develop strategies for managing their ADHD, but it might just help them concentrate for long enough to implement them, or hold down a boring job until they are in a position to move to a more fulfilling occupation. There are also several ways of managing ADHD that do not involve medication eg. exercise, psychoeducation, and these should be part of any attempt at intervention as a matter of course.

In conclusion, something needs to be done about ADHD’s image problem. There are people out there not getting the support that they need to live happy, fulfilling lives because of misinformation and prejudice. Yes, assessing for ADHD needs to be treated with caution, but so should all psychiatric/mental health assessments. The responsibility should be on practitioners and the wider society to educate themselves so that prejudice, suspicion and fear can be replaced with tolerance, understanding and proper support.

 

 

Where do I start…the non-ADHD assessment

I don’t even know where to start.

I had the “ADHD assessment” that I have been trying to get for over a year. I may as well have spoken to a little old lady at a bus stop.

Don’t get me wrong, the psychiatrist was lovely, a positive, upbeat individual.  It was clear that she was a wonderful human being with a strong desire to help people. Had we met at a party, we’d have been putting the world to rights over a warm chardonnay until 3am. It was also as if the last 20 years of research into ADHD had never happened. As Terry said, when I told him, it was barely one step removed from drilling a hole in my head to let the evil spirits out.

No assessment tools, not even the self report scale (ASRS-V1.1) that is readily available on the internet. No reference to the DSM-V or ICD-10 diagnostic criteria. A brief skim over why I think I may have ADHD (it’s lucky that I have a psychology degree then) and a discussion in which I tried to impart that not everyone with ADHD presents in the same stereotypical way, and that yes, it’s possible for a person to have ADHD even when they were not the “naughty kid” at school and managed to get a degree. She happily admitted that she wasn’t an ADHD specialist, as there aren’t any in Monmouthshire. Really, if I’m going to be assessed for something, I’d quite like it if the assessor knows a bit more about the issue than I do.

The non-assessment ended with some friendly, positive and utterly unhelpful advice about finding a stable part time job. I have a part time job thanks, in fact, I have four (another ADHD flag if ever I saw one). I’d like one job, I’d like it to be full time, and have some sort of career prospects. Trouble is, I have problems getting done what I need to do to make it happen. And have done for nigh on the last 13 years. Progress is sporadic and inconsistent.

I’d like some support, please. I’d like to see if meds will help me concentrate for long enough to implement new strategies and finally get my life together. They may, they may not, but I’d like the option to try. Not be scared off with unfounded claims that they might affect my fertility or that I might get addicted to them. I do know a bit about these meds, and I know people who know a lot about them. Like most people of a psychological bent, I’m not a fan of psychiatric interventions for which there is very little or very shaky evidence. ADHD medication, however, is one of the most successful psychiatric medicines that we have. I’d also like some kind of psychotherapy to address the psychological damage that struggling with ADHD has done, namely lack of confidence and constant feelings of inadequacy which are holding me back. I would like to progress to a stage where I am in a position to help others.

I despair for all the other people who find their lives complicated by ADHD who do not have psychology degrees or a wonderful, supportive partner who understands ADHD. Who cannot argue the toss, or spend a year pushing for an assessment. Who go to their GP, at the end of their tether, only to be told a year later by a lovely non-specialist that they have nice lives, and would need to be on the verge of a prison sentence before they would qualify for any help. I don’t blame the psychiatrist, she was only doing her job as best she could, with the resources and training she had. Maybe the Aneurin Bevan health board could enter into a public-private partnership with Homebase next and buy a few drills?

I despair. I really do.