Supporting autistic people who hoard

Hoarding has recently received a lot of coverage in the media with programmes such as “Britain’s Biggest Hoarders.” It affects a large number of people and often those who engage in hoarding are unable to recognise or acknowledge that they have a problem. For people such as myself who have worked in health and social care, supporting autistic adults in the community, a significant number have had a problem with hoarding.

Hoarding is described by the NHS as a disorder “where someone acquires an excessive number of items and stores them in a chaotic manner, usually resulting in unmanageable amounts of clutter. The items can have little or no monetary value” (www.nhs.uk).

Most people accumulate possessions and may assemble large collections of particular items. In addition, many autistic individuals may acquire large collections related to their special interest and a desire for completeness. Indeed some autistics do share appear to share certain clinical characteristics to those who hoard, including impaired theory of mind , social isolation, strong attachment to items, impairments in self-perception and insight, and problems in forming emotional attachments (Grisham et al. 2008; Pertusa et al. 2012).

However establishing a large collection, neatly arranged and catalogued does not in itself constitute as hoarding . Nor does being autistic necessarily increase the probability of being a hoarder . Indeed a study by?Steenvoorden (2012) ?on the comparison between hoarders with autistic traits versus individuals who hoard without possessing any autistic traits found no significant differences.

Hoarding can have a significant impact upon the hoarder , the person’s family and may lead to conflict with landlords or neighbours.

The impact on the person who is hoarding:

• Emotional-?The person may feel ashamed, depressed or overwhelmed by the problem; and extremely agitated when forced or supported to discard items
• Denial-?They may not be able to visualise the accumulation of items or see the adverse consequences in terms of increased social isolation, ability to work, lack of living space, risk to their physical health and wellbeing, risk of homelessness, or the financial implications of bulk purchasing or the consequences of costly enforced disposal of items
• Withdrawal of services-on health and safety grounds
• Risk of prosecution or eviction-on environmental health grounds

The impact on family, friends and carers:

Emotional-Relatives , friends and carers may become distressed by the conditions and that any advice or support they offer being ignored

Social-Some members of the family or friends may stop visiting or refuse to bring their children into the house due to health and safety concerns. Likewise, hoarding may pose a significant threat to the health and safety of those living with the person in the house, particularly children residing there

Exclusion by the person-The person may refuse help and exclude people from the house, especially those who argue with them

Support to address hoarding problems

An important starting point is to adopt a person-centred and non-confrontational approach that is founded in respect and without judgement. Negativity fuels resentment and will reduce any opportunity for meaningful dialogue and positive engagement . Communication is vital and any support provided must start by being open, honest and transparent, reinforced by open body language .

Good practice in communication

• Ensure that you use constructive words or phrases?-(e.g. “Tell me about the things that you are saving”
• Explore and be curious-?(e.g. “what made you decide to save these items?)
• Provide plenty of time for meetings- to allow time for the person to discuss concerns and worries
• Be supportive-?have sense of curiosity and show an interest in the person and their problems

Constructive language

• Enables better communication between yourself and the person who is hoarding by showing them that you are willing to engage with them in a non-judgemental manner
• Empowers the person by making them relaxed, comfortable and free to express themselves

Engagement

Be aware of your own attitudes and prejudices and the negative impact upon developing a good working relationship with the person .

Engagement should be:

• Non-Threatening
• Non-Judgemental
• Normalising
• Supportive

Dialogue should demonstrate that you:

• Value the person (as a person, not a problem, free from blame
• Work collaboratively
• Use positive reinforcement
• Use SMART objectives
• Provide information about hoarding disorder
• Introduce others who are able to help
• Are always open and transparent
• Maintain contact to monitor progress
• Introduce other activities to integrate into society and reduce social isolation

Next steps

• Develop a dialogue to start the engagement process
• Assess the understanding of the problem
• Provide information on hoarding and possible consequences
• Negotiate a joint plan of action
• Appreciate that this is along-standing problem and will take time to improve
• When willing to engage in clearing the environment , set small goals, which are specific and measurable
• Always obtain consent , preferably in writing before carrying out any work
• Regular contact to review progress
• Be transparent, open and honest
• Validate the progress the person makes

There are no easy solutions or swift remedies to the problem of hoarding, and any support offered is most likely to be unwelcomed, at least initially, by the person who is hoarding. It can be a long and arduous process, involving a multi-agency approach, looking into both the underlying causes for the problem as well as improving the person’s environment , wellbeing and social engagement.

Further advice and support on this issue can be found at?https://helpforhoarders,co.uk

References

Frost, R.O. & Steketee, G (2014). The Oxford Handbook of Hoarding and Acquiring, Oxford University Press

Grisham, J. R., Steketee, G., & Frost, R. O. (2008). Interpersonal problems and emotional intelligence in compulsive hoarding. Depression and Anxiety, 25(9), E63–E71. doi:10.1002/da.20327

Pertusa, A., Bejerot, S., Eriksson, J., Ferna′ndez de la Cruz, L., Bonde, S., Russell, A., & Mataix-Cols, D. (2012). Do patients with hoarding disorder have autistic traits? Depression and Anxiety, 29(3), 210–218. doi:10.1002/da.20902.

Skirrow, P., Jackson, P., Perry, E., & Hare, D. J. (2014). I Collect Therefore I am — Autonoetic Consciousness and Hoarding in Asperger Syndrome. Wiley Online Library: Clinical Psychology and Psychotherapy, 22(3), 278–284. doi:https://doi.org/10.1002/cpp.1889

Steenvoorden, F. C. M. & Cath, D. C. (2012). The influence of Autism traits on the manifestation of Obsessive-compulsive and Hoarding symptoms. Department of Clinical- and Health Psychology, 1, 1–28.

Get an email whenever Wired4Autism-The Autistic Carer publishes.