Clutter/disorganisation & Autism Spectrum Disorder (ASD), Aspergers, Attention Deficit Disorder (ADD/ADHD)

A friend very kindly sent me a recent article from The Guardian newspaper, entitled "A letter to my son....whose flat is filty - the letter you always wanted to write".

The article is in the style of a letter from a Mum to her son, and highlighted for me something I've seen a lot of since I've been a professional organiser: that some of my clients who have difficulty coping with clutter or disorganisation show symptoms related to being on the Autism Spectrum (also known as Autism Spectrum Disorder, or ASD).

And yet - for the most part - my clients don't seem to know it; instead, they often struggle with things like Dyslexia, Dyspraxia, depression or anxiety due to low self-esteem, partly due to their inability to be what I've heard some of them describe as "normal". 

I've heard comments like "I want to have an immaculate house like my neighbours, but I can't seem to get my head around organising things or keeping regular routines" or "people tell me I need to do this or that, but it makes me feel upset and pressured because I find it so difficult to do what others seem to find easy."

Not once have my clients ever said they've been tested for or diagnosed with Autism - a condition that affects more than 10% of adults (about 588,000 people in the UK today) - ADD (Attention Deficit Disorder) or ADHD (Attention Deficit Hyperactivity Disorder).

I find it desperately sad that so many people slip through the diagnosis net - mostly because little was known about Autism and/or ADD/ADHD when they were younger; they've been left to fend for themselves, without the right kind of help or support, or - most likely - were either too embarassed to ask for help, or didn't know there was help available in the first place. 

I belong to The Association of Professional Declutterers & Organisers (apdo-uk), which published a newsletter with useful guidelines for helping people with ADHD get organised.

One of apdo-uk's advisors - Jan Assheton - provides coaching solutions and training relating to ADHD and Asperger's. Jan says "The condition rarely exists alone and may be diagnosed alongside Dyslexia, Dyspraxia, Depression, Anxiety, Asperger's, Obsessive Compulsive Disorder (OCD), Hoarding Disorder and Sleep/Eating Disorders."

I personally believe that many people at the chronic end of the clutter spectrum -who have hoarding disorder (a mental health condition) - are prime examples of vulnerable people affected by these types of conditions, or a combination of these and/or other physical, neurological or mental health problems.

Some hoarders in the past have been unlucky enough to end up suffering the humiliation, embarassment and trauma of having to undergo an enforced major clean-out by Environmental Health and/or eviction - expensive "solutions" which recent evidence proves can do far more harm than good to the recipient, and result in them feeling worse than ever about themselves. 

It can demotivate them from any desire to declutter.  In fact, it can result in making them hoard all over again in no time as a way of trying to control their lives and surround themselves with items to create a "comfort zone" of personal possessions that make them feel better.

Some hoarders have been known to be so traumatised by clean-outs or eviction that they've taken or attempted to take their own lives - if that's not a cry for help or in despair, I don't know what is.

A diagnosis of Autism or ADD/ADHD could have resulted in the type of practical support - for example, training, counselling and/or medication - which could have helped prevent their extreme situation from occuring in the first place, or funding for the services of empathetic, non-judgemental professional organisers to provide motivational support, advice and practical assistance.

Which is one of the reasons why I'm so committed to UK Hoarding Awareness Week, the recent campaign by The Chief Fire Officers Association (CFOA), which I helped to organise.  The aims of the campaign are to:

• To spread more widely an awareness of hoarding facts                       
• To promote greater understanding and acceptance across those who can influence change
• To encourage a stronger tendency for those who can influence change to support and promote at key moments.

By raising awareness of hoarding amongst the likes of GPs, mental health services, social services, Vulnerable Children and Adults Teams, Environmental Health, landlords, housing associations, Citizens Advice and the emergency services, it will hopefully reduce the number of people falling through the hoarding "net", so that they get the right type of help at the right time, and don't have to endure extreme measures which could blight the rest of their lives.

So I urge anyone who has an influence over assessing children's health to look carefully at whether they might be affected by ASD and/or ADD/ADHD; a simple diagnosis could make a HUGE difference to the quality of their lives - and the lives of their loved ones - in the future, and help them live a more cluttered, organised and stress-free life. 

To those of you responsible for providing support to vulnerable adults, I urge you to put yourself in their shoes, and consider having them assessed for ASD and/or ADD/ADHD before making life-changing decisions which could cost more than just money.

As the daughter of a hoarder, I thank you in advance, from the bottom of my undiagnosed ASD/ADD/ADHD heart.

++++

About Autism & ADHD

The National Autistic Society (NAS) is the UK's leading charity for people with autism and their families. According to their website, Autism condition is a complex developmental disability involving a biological or organic defect in the functioning of the brain.  It is a lifelong developmental disability with no cure; children with autism grow up to be adults with autism.

NAS says that Autism affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support.

According to NAS, ADHD is a condition related to Autism, that makes a person inattentive, impulsive and hyperactive. An increasing number of children are diagnosed as having both ADHD and autism. Some parents are apparently only diagnosed with ADHD after their children have been diagnosed with autism.

http://www.autism.org.uk/about-autism/related-conditions/adhd-attention-deficit-hyperactivity-disorder.aspx

NAS has developed a framework for understanding and responding to the needs of children and adults on the autism spectrum. The framework is also useful in identifying underlying issues, reducing the disabling effects of the condition and providing a cornerstone for communication. It also forms the basis of all autism-specific staff training and an ethical basis for intervention. The acronym for this framework is SPELL. SPELL stands for Structure, Positive (approaches and expectations), Empathy, Low arousal, Links.

For more information about Autism, Asperger's and ADD/ADHD:

• National Autistic Society - www.autism.org.uk
• Jan Assheton - www.janassheton.co.uk
• National Attention Deficit Disorder Information and Support Service www.addiss.co.uk.

To find a professional organiser for help with decluttering and getting organised, check out apdo-uk's website: www.apdo-uk.co.uk

Parliamentary launch of UK Hoarding Awareness Week - 19-25 May 2014

When I first started Rainbow Red back in 2011, no-one – especially me - could have predicted that three years later I – the daughter of a hoarder - would be one of the organisers of the first ever UK Hoarding Awareness Week, and a guest of The Chief Fire Officers Association (CFOA) at a Parliamentary launch event in the riverside Common Room bar of the House of Commons.

Much to my continued amazement, this is a real life true story.

There I was this week enjoying afternoon tea - with the likes of a Shadow Minister, MPs, senior representatives of CFOA and the fire and rescue service, charities and housing associations, plus fellow professional organisers and hoarders featured in tv documentaries – all of us discussing the safety risks associated with properties affected by hoarding, and the importance of multi-agency partnerships to help safeguard people affected by hoarding.

Left to right: Heather Matuozzo (Clouds End CIC), Vasoulla Savvidou,
Richard Wallace, Cherry Rudge (Rainbow Red), Andy Honey (Clouds End CIC)

I attended with my friend and esteemed apdo-uk Hoarding Advisory Team colleague Heather Matuozzo (owner of Clouds End CIC, a social enterprise which provides practical help, support and training on all manner of hoarding-related topics).  We'd been invited to join CFOA's Hoarding Working Group, advising them on the best approaches for the fire and rescue service to work with hoarders, and develop a Toolkit for the campaign.

Heather's colleague Andy Honey was also at the Parliamentary launch.  Andy appeared in Channel 4’s documentary “Obsessive Compulsive Hoarder”, a programme which showed how he helped hoarder Richard Wallace (from Westcott near Dorking, Surrey) clear tonnes of clutter from his garden and home.  The experience changed both their lives.

It was a great pleasure to meet Richard on the day of the launch, as well as the delightful, fun-loving Vasoulla Savvidou of “My Hoarder Mum and Me” fame.  She's the mother of the beautiful and gorgeous Jasmine Harman, founder of Help for Hoarders who I signed up as apdo-uk’s first not-for-profit partner in 2012, and who addressed the apdo-uk conference in 2013.  What fascinating, lovely people they all are.

Anyway, back to the Parliamentary launch. 

Lyn Brown (Shadow Fire Minister) and Jim Fitzpatrick MP

It was hosted by Jim Fitzpatrick MP, and included Shadow Fire Minister Lyn Brown drawing attention to facts, figures and popular myths about hoarding, and Ian Bitcon - CFOA UK Strategic Lead for Hoarding (West Yorkshire Fire and Rescue Service) outlining various specific hazards to fire fighters, including blocked access and egress (entry and exits) due to piles of materials such as stacked newspapers.

A fire safety video was shown - produced by Hampshire Fire Service, in association with The Building Research Establishment (BRE), and co-sponsored by apdo-uk and Clouds End CIC; it demonstrated the effectiveness of a sprinkler system in putting out a fire in a hoarder’s home. 

Dave Curry and Katie Cornhill of Hampshire Fire Service,
with Paul Fuller, President of CFOA
and Heather Matuozzo of Clouds End CIC

Personally, I find it difficult to believe that many hoarders would agree to having a sprinkler system installed, as there’s a risk that the water would damage their precious possessions in the event of a fire starting and the sprinkler being activated.  Of course, if they’re installed in advance of someone moving into their new home, then it’s a fait accomplis; who knows how they’d react in the event of the sprinkler being used, but that’s probably a debate and blog for another time.

Mark Andrews of The London Fire Brigade explained protocols they developed for working with hoarders - in association with Heather at Clouds End - which have very successfully involved multiple agencies working together.  And finally, Andrew Chaplin - CEO of Foundations, the national body for home improvement agencies and handyperson services in England - outlined how they handle challenges they face when working with hoarders.

And then it was time for the buffet and mingling. 

I bet the producers of the hoarding programmes never thought they would see hoarders having afternoon tea with MPs in the Houses of Parliament!

Whilst UK Hoarding Awareness Week (#HOARDAWARE2014) starts on Monday 19^th May, the need to help hoarders is constant. 


I’m delighted that CFOA’s campaign is raising awareness of the dangers of hoarding, which is said to affect anywhere between 1.5% and 5% of the UK population. 

As a professional organiser who also happens to be the daughter of a hoarder (and someone who tripped over a door wedge at work many years ago and slipped two discs - see my previous blog on the subject), I’m extremely risk aware of slip, trip and fall hazards.

Properties affected by excessive amounts of clutter present extreme risks and fire hazards. Hoarders are vulnerable (often secretive) people, and can be in denial about the dangers they create with their clutter; unwittingly they create conditions which put people’s lives in danger – their own, plus visitors, neighbours, the local community and the emergency services. 

By working closer together, the emergency services and organisations (such as local government, mental health, social services, social housing landlords and professional organisers) will be able to improve the holistic care and support (medical, practical, financial and psychological) that hoarders, their families and their support groups need – most importantly, funding to pay for the services of empathetic professional organisers who work with hoarders and help make a practical difference to their lives.

So, if you're a member of any of these professions, or know someone who is, please start discussions to get the ball rolling and help safeguard your community - because who knows, you might even be living next door to a hoarder and not realise it.

For further information about the UK Hoarding Awareness campaign 2014, do please contact me (Cherry Rudge) or Ian Bitcon of CFOA, or follow Rainbow Red on Twitter (@RainbowRedUK) or Facebook (Rainbow Red – Decluttering, organising and project management).

In the meantime, now I’ve recovered from the 2014 Parliamentary launch, I’m off to think about next year's campaign, and introduce myself to my local fire and rescue service to see how we can work closer together – all in a day’s work you understand, nothing to do with firefighters in uniform, honest….!