"Understanding Hoarding" - by Jo Cooke

"Understanding Hoarding" by Jo Cooke is the first book of its kind in the UK that''s been written by a British author (most of the other books about hoarding have originated in the US).

If, like me, your life has been touched or changed by hoarding behaviours and you'd like to understand more about it, then I encourage you to invest in this book - it's been compared to the international works of Steketee, Frost et al, all of whom are experts and published authors on the subject.

Jos' book is easy to read, sensitively written, empathetic and practical, and includes contributions and case studies from hoarders themselves, families of hoarders, professional practitioners, the Fire & Rescue Service and others.

Jo Cooke of
Hoarding Disorders UK CIC

Jo's insight into the world of hoarding comes as a result of being the daughter of a hoarder - as am I.  

It lead her to eventually set up a specialist social enterprise called Hoarding Disorders UK CIC (Community Interest Company) based in Newbury, Berkshire, as well as two (currently) hoarding support groups.

I hadn't read the book prior to it being launched, and have been absolutely delighted by it - it really does live up to one of the reviews on Amazon, written within only two days of the book being published:



"The definitive book on understanding hoarding.   It is both an easy read and beautifully written. It will become the bible for people affected by hoarding. Hoarders themselves, families of hoarders, and people that come into contact with hoarders such as social workers, housing officers, the fire services and many others.

As well as addressing what is hoarding and why people hoard it gives good advice on decluttering and sustainability.

Jo writes in an easy style with a great deal of commonsense, knowledge and passion.Everything you need to know is in this book, the complete guide."  

Very sadly many children of hoarders fall out with their parents; the stuff can tear resentful families apart.

I wish it had been available as I was growing up, so that I could have learned what might be behind my controlling father's habits.  It would have given me the knowledge to look beyond the stuff and work towards developing a stronger and more emotionally rewarding relationship with him. 

In later life he developed Alzheimer's, which made caring for him (and then clearing out his house once he'd died) a time consuming, financially draining and emotional roller coaster of a journey.

Jo very kindly invited me to contribute to "Understanding Hoarding", and has even credited me in the acknowledgement at the beginning, for which I'm truly grateful!  

So I must thank some very special people, without whom my contributions to the book would not have been possible.

Firstly, my client Peter - for allowing me to tell his story.  Next, Sheena Crankson and Felix Pring of FAST Minds ADHD Support Group in Kingston-upon-Thames - for their support in helping me create the diagram (below) for the book.  

It's designed to give people an insight into the thought processes of the ADHD Brain in the context of organising, clutter, disorganisation and hoarding, and has been well received by people with ADHD.

The day after "Understanding Hoarding" was published, a lady who has the condition (as do members of her family) asked if it would be OK to take it to school to show the teachers, to help them understand how difficult and debilitating it can be to have ADHD/ADD.

Members of my local ADHD support group were very excited to see the difficulties they have with clutter and disorganisation shown in picture form (because pictures paint a thousand words).

Heather Matuozzo of Clouds End CIC (founder of the first social enterprise in England specialising in hoarding behaviours) has been a great mentor and friend on my personal and professional development journey, and has also made an invaluable contribution to Jo's book.

And finally, I must thank my late parents - without whom I would not be writing this blog now.

I will always be grateful to Jo Cooke for allowing me to contribute to her wonderful book, and for empowering readers to look at their possessions, other people's possessions and other people's lives differently.  

Because hoarding isn't about the stuff, it's about the people.

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