Executive Dysfunction & the mysery of having undiagnosed ADHD

There's been a lot of media coverage recently about the BBC radio 4 programme in which comedian Shappi Khorsandi received help to bring order to her home from my APDO (Association of Professional Declutterers and Organisers) colleague Sarah Macnaught of RightSize. 

Here's the link to the radio programme if you'd like to listen to it.

https://www.bbc.co.uk/programmes/p07qcqqs

What I don't remember being mentioned in the programme was that Shappi was diagnosed with Dyspraxia whilst at university, and then a few years ago she was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) – another neurological condition which creates problems with Executive Functioning – which is why Shappi (and countless others like her) experience difficulties with things like planning, organising, decision-making, multi-tasking, time management, and even regulating their emotions.

An article by the journalist Robyn Wilder in The Independent in 2018, explains her experiences of Executive Dysfunction perfectly.  She was being assessed for ADHD when she wrote the article, in which she described how she lives in constant chaos.

“I do not know where my keys are. I only pay bills once the red ones arrive, and I have zoned out 20 times while writing this. And this is me on a good day. I cope (or, rather, don’t) by mentally flagellating myself, drinking at least six cups of coffee a day to improve my focus, and using six different calendars to keep track of my life”. “Until 18 months ago I assumed that these were all personal shortcomings on my part. I’m lazy, perhaps, or just stupid. Maybe I’m just inherently slothful. Or maybe they’re symptoms of the depression and anxiety that have dogged me my whole life.  It didn’t occur to me that they might be symptoms of a medical issue until I read an article by Maria Yagoda in The Atlantic. As soon as I finished reading it, I cried for two hours straight. Then I called my GP for a referral”.

Robyn went on to say “I do wish I had been diagnosed as a child. It might have stopped me internalising and then beating myself with my teachers’ labels. It might have provided a counterpoint to the awful, critical inner voice that told me I was ridiculous and a time-waster, because I just generally can’t cope with life the way other people seem to".

The fact is, the issue of non-diagnosis of this potentially debilitating condition doesn’t just affect adults.  An international study published in 2018 in The Lancet warned that ADHD in children is going wildly under-diagnosed and under-treated in the UK. After reviewing data from 24,000 patients, 14,000 of whom were children, researchers found that while five per cent of children in the UK have ADHD, only one in 10 are actually treated.

So, if that’s the case as we approach the third decade of the 21^st century, it’s difficult to imagine how many adults with symptoms of ADHD are still undiagnosed – and have suffered mental anguish, bullying, abuse and frustrations with organising their lives as a result.

As someone who works with people with issues related to Executive Dysfunction on a daily basis, and is about to become a Trustee of the Fastminds Adult ADHD SupportGroup in Kingston-upon-Thames, it seems to me that there’s not nearly enough support for individuals and families affected by ADHD and other neurological conditions.

Many of the true stories that we hear at the support group are absolutely heart-breaking – they would barely be believed if you read about them in a book or watched the movie of their lives. 

Some people are so desperate for help and support that they travel miles to attend our Support Group meetings - we had someone recently who drove all the way from Kent *a round trip of over 100 miles) because they said ours was their nearest adult ADHD support group!

How different their lives might be if only:

1. They’d been able to get an earlier diagnosis, and appropriate medication (instead of sometimes self-medicating with food, drink, drugs, stuff – resulting in hoarding behaviours, eviction and even homelessness)
2. They didn’t have to wait months and months (sometimes years) for an assessment 
3. They hadn't been mis-diagnosed with mental health disorders instead of neurological ones.  

1. Presumably this is because the ADHD diagnosis section of the NHS website states "If your problems are recent and did not occur regularly in the past, you're not considered to have ADHD. This is because it's currently thought that ADHD cannot develop for the first time in adults".

4. “The System” (healthcare and benefits) understood the extreme difficulties experienced by people with Executive Dysfunction, and stopped withdrawing benefits at the push of a button (making them jump through hoops to appeal, thereby creating more mental anguish and health problems) and making reasonable adjustments for them (which is what is required for employees in a workplace). 

So, as it's ADHD Awareness Month, I would ask everyone who has been kind enough to read this blog to please share it with your contacts, and spread the word about the urgent need for far more training for GPs about Executive Dysfunction, ADHD and related neurological conditions - and how if misdiagnosed or undiagnosed they can lead to mental health problems.

Fingers crossed as a result, someone from "The System" (NHS, DWP, etc) will take note, sooner rather than later - and improvements will happen. Diagnoses will be made. Medications will be prescribed. Lives will be changed.

Thank you in advance for helping transform the lives of people who haven't chosen to be neurodiverse - they just happen to be blessed to be that way.

#ADHDAwarenessMonth #Diagnosis #ADHD #ADD #ExecutiveDysfunction #NHS #DWP #APDO #neurodiversity