Understanding ADHD & Hoarding Disorder
In support of ADHD Awareness Month, we sat down with Cherry Rudge who is the creator of the Hoarding Ice Breaker form and trustee of Fastminds ADHD Support Group, to discuss everything ADHD & Hoarding Disorder.
- Links between ADHD & Hoarding Disorder
- The Impact of living with both ADHD & Hoarding Disorder
- Supporting individuals while being mindful of both conditions
- Fastminds Adult ADHD Support Group
How did you get into this line of work, both ADHD & Hoarding disorder?
My first experience of what I now know was hoarding behaviours was when I was about 8 years old, when the home I grew up in doubled in size!
My Dad was incredibly practical and was able to realise his dream of one day living in a detached house when our elderly neighbour moved away, and he bought her half of the semi to turn it into one house.
Dad did all the designs, carpentry, building, electrical and plumbing work himself, which is how we ended up with twice as many rooms, a double sized loft, at least double the amount of sheds and a huge garden – which was great, except it meant we expanded to fit the space, and ended up with twice as much stuff!
There was more room for my Mum’s arts and craft materials (for cake decorating, dress making, painting and drawing), and more room for my Dad’s books, cars, motorbikes and vans (at one point I think there were about four cars and a camper van on the drive and two cars on the front lawn), televisions (my brother took at least six old wooden tv sets out of the loft when we eventually cleared the house), tools, paperwork, bikes, newspapers, and gardening and computing paraphernalia.
I think the chaos affected my relationship with my Dad, and it wasn’t until I was older and had CBT (to try and improve our relationship) that I realised that he was probably a victim of Adverse Childhood Experiences (ACEs), having been brought up in London during WW2, and then evacuated to stay in Edwardian communities which didn’t appreciate the nits, lice and attitudes that some of the urchin evacuees had brought with them. The counsellor made me realise that what he needed from me was positivity and kindness, not anger, angst and attitude. I put this to the test and the result was incredible, and became a turning point in our relationship. I’d often wondered whether my Dad might also have been Autistic, as he was fascinated by anything mechanical or engineering; wasn’t great at small talk; would call black white about all sorts of things and wanted everything done his way or no way.
It was my Dad’s childhood experiences that later made me research the connection between trauma, Neurodiversity and hoarding behaviours, which I discovered is extremely common.
My first real experience of what can happen if ADHD is undiagnosed or untreated was an incident at work, when a colleague was sacked. It came as a bit of a shock to our team, and it wasn’t until many years later that I realised the person’s poor timekeeping, impulsivity, and lack of attention to detail, hobbies and chatty personality were classic ADHD traits.
My career as a Professional Hoarding Practitioner began by accident, after my entire Global IT Project Management team was made redundant in 2009 – the same year I went through the menopause; my Mum died out of the blue, and I realised my Dad had symptoms of dementia. The following year I was introduced to an elderly friend of a friend who said
“I’ve got myself into a bit of a pickle – do you have some spare time to help me get sorted?”
At her house I discovered lots of craft materials, unfinished projects and a chaotic accumulation of other belongings – just like what I’d grown up in! Although the environment was confusing and unsafe for an older person, it didn’t phase me at all. She and I had lots in common, and although she’d developed good coping strategies for most things, she needed a practical, physically active person with good interpersonal, organising and project management skills to bring order to life for her
It was then that I realised that there were LOTS of people in similar positions in need of the type of help and support I could offer, and that it was going to become my new career! The lady agreed to become my guinea pig so I could learn the best ways to empower someone to declutter and get organised, and that’s how Rainbow Red was born!
My new client soon became a good friend, and I eventually stopped charging her for my services, as I got such a buzz from working with her, and learning from her. And to this day, 13 years later, at the age of 92, she still tells me how fortunate she was that I came into her life.
My interest in Neurodiversity deepened when she mentioned she thought she might be Dyslexic, which certainly explained some of her difficulties with organising, prioritising tasks, and finding some tasks easy but others challenging, so avoided doing them or didn’t finish them. And actually I suspect she may actually also have other Neurodevelopmental conditions too, as she couldn’t function properly without routine; became very anxious if she couldn’t find things, and boosted chemical imbalances in her brain by doing lots of physical exercises (skiing, tennis, dancing and travelling); being completist with whatever she bought (including vast collections of gardening books and commemorative Royal mugs); eating sugary foods; and expressing herself through making creations at arts and crafts clubs including pottery, flower arranging, upholstery and dolls houses.
The more I worked with clients, the more I recognised symptoms of neurodevelopmental conditions ( and links between ADHD & Hoarding Disorder), and found that techniques for reducing overwhelm to help them get organised also worked for clients with conditions such as Fibromyalgia and Chronic Fatigue Syndrome.
That’s when I discovered Chronic Disorganisation, which is when people experience disorganisation over a long period of time, and it adversely affects their quality of life. They may have tried repeatedly to make things better for themselves, but to no avail.
It doesn’t necessarily mean they have hoarding behaviours, as they may desperately want to become more organised and get rid of items that are surplus to requirements, but struggle to do so – perhaps because they have medical problems that affect their energy, stamina, or mobility, or have nobody to ask for practical help and support.
I was also fascinated about why so many clients had so many unused prescription medications that were out-of-date that I was taking to pharmacies. What made people not want to take them or forget to take them?
Then I learned about impaired Executive Functioning, which includes our Working Memory – the more it is impaired the less likely we are to remember to take medication. Given that most of the clients I was working with were living alone, they typically had nobody to remind them to take their medication! Plus, if that person was visually stimulated, disorganised (so that medication was stored in obscure places) and had no visual reminder, their drugs were out of sight and out of mind so they’d forget to take them!
Had my lovely guinea pig lady not trusted her neighbour (a friend of mine) and taken her advice (to ask me for practical help and support), the extreme anxiety she was experiencing could easily have caused her to have a heart attack or stroke, and become increasingly reclusive. It’s the classic example of people being too embarrassed to talk about the state their homes, not knowing what to say, or not knowing who they can trust to talk to about it.
It’s why I created the Hoarding Ice-Breaker Form – to make it easier for folks to start a conversation with their GP about the difficulties they have with clutter, disorganisation or hoarding behaviour.
What are the main impacts for a person who suffers with both Hoarding & ADHD?
As someone who was late diagnosed with ADHD (at the age of 56), it makes me feel uncomfortable describing a person with the condition as a sufferer. Because it’s no exaggeration to say that ADHD can be a super-power – look at highly successful athletes like record-breaking Olympians Simone Biles (gymnast extraordinaire) and Michael Phelps (the most successful and most decorated Olympian of all time with a total of 28 swimming medals), or countless entrepreneurs and entertainers such as chefs Heston Blumenal and Jamie Oliver; musicians Dave Grohl, Lily Allen, Robbie Williams, Mel B and Justin Timberlake; actors Denise Welch and Nadia Sawalha (from Loose Women); comedians Sue Perkins, Shapi Khorsandi and Rory Bremner, and music/airline/space mogul Sir Richard Branson – to name but a few.
They’ve dreamed big dreams and made them become a reality.
However, the negative impact of having ADHD can include burn-out, low self-esteem and unhealthy coping strategies – mainly when someone either doesn’t know they have it or if they’re untreated. For some the cost has been high. Cravings for dopamine stimulation can manifest itself in all sorts of ways, such as becoming addicted to things like extreme sports (how many mountain climbers with ADHD or undiagnosed ADHD have perished?); sex (often people misinterpret sexual stimulation for affection, resulting in unwanted pregnancies or single parent families); alcohol and/or food; drugs; shopping or stealing (jails are full of Neurodivergent individuals without a diagnosis
It doesn’t help that there’s a national ADHD medication shortage at the moment, which means there are LOTS of people who ordinarily manage to function reasonably well when they’re fully medicated, but really struggle when they’re not.
For me personally I call ADHD medication my patience pills. For example, it enables me to keep calm and carry on in challenging or overwhelming situations without getting irritable or impatient, and helps me cope better with driving long distances or busy days where it’s important for me to be able to concentrate and focus – otherwise I’m sure I’d have an accident, or lose my patience with people.
Being emotionally dysregulated contributes to failed marriages, failed employment and broken relationships with family, all of which are really common amongst clients who are Chronically Disorganised or have hoarding behaviours.
ADHD-ers are renowned for being attracted to colourful shiny or attractive looking items, and may be addicted to buying cut-price items because of the buzz they get from feeling good because they’ve bought a bargain. They may be talented artistically or have lots of hobbies but unfinished projects and no way of getting rid of them. The number of artworks and creations tends to build up in their home, as do the craft materials (especially if they’ve forgotten they’ve already bought them, and buy more because they can’t find the first lot).
It’s common for people with ADHD to grow up being told they’re naughty or silly because they’ve not paid attention, or have been careless with their homework. Unfortunately, this often leads to the ADHD-er having low self-esteem, a lack of confidence, and struggle to make decisions.
For example, should they keep something or could it be surplus to requirements (ie. what they can/should need or get rid of)? They might delay the decision and procrastinate about doing something about it or asking for help (perhaps because they’re worried about being judged and don’t want to be overwhelmed criticism or suggestions that they know they can’t put into practice without the help of a body double, which is more stimulating for them than doing it by themselves).
Sometimes the build-up of possessions makes their home unsafe, and impacts on activities of daily living or their health to the extent that eventually they can’t function without help and support, and someone else has to intervene
How can we work to support these individuals, being mindful of both conditions?
Everyone struggles with something at some point in our lives, through no fault of our own. So, it’s best to assume that EVERYONE has some sort of hidden difficulty or disability, this goes for all conditions, not just ADHD & Hoarding Disorder.
It’s really common for people to have multiple Neurodevelopmental conditions, which can also directly impact a person’s physical health more that many people realise. For example, many people with ADHD are also Autistic, have Dyslexia, struggle with numbers (although may not have a Dyscalculia diagnosis), may be hypermobile; have Chronic Fatigue or Fibromyalgia; experience difficulty following or remembering conversations, etc.
- Gaining a person’s trust is vital to making progress with them. Demonstrate to people from the very first conversation you have with them that they can trust you – be consistent and reliable, and you’ll get much further with them.
- Focus on one thing at a time, even if it’s only for short periods – avoid overwhelming ADHD-ers (or people who may have ADHD) at all costs.
- Break tasks and instructions down into small, achievable chunks and although progress may be slow, it will be sure. Rush them and they’ll back away.
- Send several reminders (eg. by text or WhatsApp) in advance of appointments so they remember the date and time, and follow-up appointments with a written summary of what’s been achieved; what key actions they need to take before the next session, and what’s happening next time.
- Remember that sessions are going to be tiring for them, so keep them short with plenty of breaks.
- Ask in advance about any medical conditions they have that mean they have special needs – for example, the priority for the first session may be to create somewhere safe for them to sit down during sessions (to conserve their energy) or sleep.
- Make sessions fun – it’s much more stimulating and energising for ADHD-ers!
Fastminds Adult ADHD support Group, What it is, How to get involved and who can take part?
I’m a Trustee of the Fastminds Adult ADHD Support Group in Kingston-upon-Thames – one of the many local peer-led ADHD support groups around the World. Some are specifically for parents and children, and there are several national ADHD charities that run support groups too, some of which are online only, some are in-person only, and some (like mine) are a mixture of both.
Our group was founded in 2013, and is run by Neurodivergent Volunteers who are passionate about trying to make life easier for people affected by ADHD and co-occurring conditions, and raise awareness of the type of help and support we need.
We meet regularly in person and virtually to share experiences and learn from each other and experts on topics associated with ADHD, and it’s great seeing the gradual increase in confidence that members have about managing their condition, and standing up for themselves as people with hidden disabilities. We also encourage members to buddy-up and support each other whenever possible, especially with things like helping each other apply for benefits, prepare for assessments, etc.
We’re also heavily involved in advising local muti-agency projects which aim to improve the quality, accessibility and Neurodivergent awareness of services used by Neurodivergent people in the borough and surrounding areas. A huge increase in people applying to join Fastminds over the last 18 months forced us to close our membership application form this summer, as we don’t have enough Trustees and Volunteers, and want to support the members we have first, especially as many of them have complex needs.
Many of our members are unwaged or rely on benefits, hence why Membership is currently free. However, we’re aiming to start a membership scheme in the New Year whereby people donate a minimal amount per month, or whatever they can afford.
So if you have an interest in ADHD and Neurodiversity, and would like to help us, we’d love to hear from you!
Email us at: info@adhdkingston.org.uk
For more information: Cherry Rudge – cherry@rainbowred.co.uk
We want to say a massive thank you to Cherry for sharing not only her wealth of knowledge but personal journey with both ADHD & Hoarding Disorder.
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