Autism & hoarding

What is hoarding?

Hoarding is a psychological condition affecting 2% of the world’s population.^[1]Recent advances in research on hoarding (Davidson et al., 2019) Hoarding is characterized by having an intense need to hold onto one’s possessions and being unable to determine how those items are useful in relation to yourself. As such, hoarders have difficulty knowing when it is time to let go of their possessions. In order to receive a hoarding diagnosis, a person would need to experience the following things according to the DSM-5:

• Have consistent difficulty with parting with their possessions, regardless of their value
• Difficulty with parting is related to wanting to “save” and make use of these items
• The accumulation of possessions brings a significant amount of clutter
• Facing significant distress that may include difficulties in other areas of daily functioning (ex. Affecting work, school or social life)
• This behaviour is not better explained by other mental or physical conditions (i.e., OCD, brain injury, restricted interests characteristic of autism)

Functional challenges that occur as a result of hoarding may include safety hazards and uncleanliness due to clutter, as well as poor sleep and increased social isolation due to high levels of distress. Let’s take a closer look at some of these characteristics.^[2]What Is Hoarding Disorder? (American Psychiatric Association) | Psychiatry.org

For one, hoarders generally feel the need to accumulate or save items because of their emotional connection to those items. When non-hoarders go through their possessions and find things that aren’t functioning anymore, they generally start to decide whether to keep or discard their possessions. However, this task is very distressing for hoarders. They may avoid or not even notice the clutter that accumulates from keeping them. To prevent the potential dangers of hoarding, like having obstacles that prevent you from moving around the space safely and not keeping up with cleanliness to prevent the spread of germs, hoarders likely need help from others (family, friends, or professionals) to organize their space and possibly discard items they no longer need.

This reminds me of a friend of mine who has sometimes shown hoarding behaviours, in that I mean they accumulated tons of CDs and records from working in a video store for many years. They were super proud of their collection which sprawled across their walls, floors and closet space. I could tell they truly enjoyed their possessions as they could comment on many rare and well-loved albums I didn’t know the names of. When they were moving to a new home, they no longer had the space or resources to hold onto their collection, which was a difficult fact to accept. With the help of their family, they gave much of it away to their neighbours.

I didn’t collect movies or CDs back then but reflecting on it now, I wish I had taken some for present-day Eden who does enjoy owning physical media. This is also part of why hoarders hold onto things longer than most people: they have a hard time imagining zero uses for the item when this item could potentially be beneficial to them sometime in the future.

Additionally, the distress of potentially discarding their important possessions, as well as the judgment their behaviours may receive from others, may collectively influence how vulnerable they are to experiencing co-occurring anxiety conditions and depression. Similarly, there is a significant link between having ADHD and reporting hoarding behaviours; however, the evidence is mixed for autism and hoarding, likely due to an exception in diagnosing hoarding when people’s behaviours could be better explained by autism. This is likely because there are similarities between autistic behaviours and hoarding behaviours (namely how we might engage in collecting objects related to our special interests).

In this article, we’ll discuss the similar mechanisms behind autistic behaviours and hoarding behaviours, as well as some key differences.

How does hoarding differ from autism?

Let’s start with some differences. First, while the diagnostic criteria for hoarding state an exception for autism, this makes it sound like autism and hoarding could not co-occur. However, what this is actually trying to say is that autism and hoarding are two distinct conditions. This means that while many autistics may collect objects to an “excessive” or impairing degree, the majority of autistics do not hoard, and the majority of those who hoard are not autistic.^[3]Do patients with hoarding disorder have autistic traits? (Pertusa et al., 2012)

Within the autistic community, hoarding-like behaviour is thought to be primarily linked with our special interests. But autistics may also engage in hoarding of many other things for various reasons. For example, autistics may accumulate many pens at a faster pace than most people because they have a fascination for pens. As well, they might struggle to get rid of any pens because they’re not sure whether they all work and so it’s best to keep them all just in case.^[4]Autistic adults’ subjective experiences of hoarding and self-injurious behaviors (Goldfarb et al., 2021)

However, some studies still report a small, but significant link between these two groups of people. For example, between two studies, 25% to 34% of autistic children with co-occurring anxiety reported hoarding behaviours. One reason for this connection is likely due to the similar emotions and thought processes we experience when we interact with our interests (including collecting items related to those interests) that hoarders also experience.^[5]Hoarding in Youth with Autism Spectrum Disorders and Anxiety: Incidence, Clinical Correlates, and Behavioural Treatment Response (Storch et al., 2016)^[6]Presentation and Correlates of Hoarding Behaviors in Children with Autism Spectrum Disorders and Comorbid Anxiety or Obsessive-Compulsive Symptoms (La Buissonnière-Ariza et al., 2018)

Similarities between autism and hoarding behaviours

An interesting connection I found when researching hoarding is that hoarding behaviours have been linked to behavioural inflexibility, a core feature of autism. By behavioural inflexibility, I mean that hoarders (and autistics) find it difficult to change course after making a decision. This could look like getting a new reusable bag every time you go to the grocery store even though it is costly and kind of antithetical to the purpose of a reusable bag. But you do this because remembering to pack one is not part of your typical routine and so it is too cognitively demanding to switch your behaviour. Instead, you’ll find other uses for the bag at home.

Similar to autism, research on behavioural flexibility and hoarding has found that during a gambling task, participants who reported intensely hoarding were more likely to continue with risky decisions, even when faced with many losses.^[7]Recent advances in research on hoarding (Davidson et al., 2019) Low inflexibility has also been linked to high levels of anxiety, which might explain why it’s distressing for autistics and hoarders to have to discard their possessions when they were not planning to.

Other similarities between the experiences of people hoarding and autistic people may be found in the thoughts and emotions behind why people hoard.

Potential reasons why people hoard

Emotional significance

One popular reason for hoarding is the emotional significance people attribute towards their collected items. Even for those of us who do not hoard, we probably have an object(s) in our life that carries personal significance to us. For hoarders, their collections (like coins, tv memorabilia, or different objects from around the world) can be imbued with meaning, bringing their owners comfort and security from their presence. Memories connected to these objects may make them feel safe, sometimes even more than other people would.

While I wouldn’t consider myself a hoarder, I also have objects that are significant to me. They are birthday and holiday cards. Currently, my desk drawer is half full of cards with sweet messages that I’ve amassed from family and friends over the last few years. Getting rid of these cards feels uncomfortable even if the message is fairly small or impersonal because I think it’s wonderful that anyone chose to give me a card in the first place. Memories of the events and people associated with personal items could be why it is so difficult for people to even think about discarding their collections.

In a similar way, this need for comfort and security can be likened to autistic people’s need for familiarity. Some autistic hoarders report that these items bring feelings of sameness: Zoey, an autistic person participating in a study on hoarding behaviours, finds that objects are comforting because “they are more predictable than people… they are always there available, you don’t need to chase them.”^[8]Autistic adults’ subjective experiences of hoarding and self-injurious behaviors (Goldfarb et al., 2021) Likewise, our need for comforting objects also extends to sensory-stimulating things, which may be a popular type of item to collect for autistics. For example, stuffed toys are a popular collecting item for autistics because of their super soft and colourful qualities.

Cognitive difficulties

Another reason for hoarding that some people experience is due to cognitive difficulties, such as challenges with memory, decision-making, and attention. For one, the prevalence of hoarding is much higher in older age folks (6%) relative to the general population (2%) and is significantly linked to dementia, making memory issues (like the fear of forgetting important information or having objects around for the purpose of “jogging” one’s memory) a likelier possibility for hoarding. This could be because having objects around from different periods of your life can act as a physical reminder for your memory.^[9]Recent advances in research on hoarding (Davidson et al., 2019)

While there isn’t much research conducted on this phenomenon in autistic populations, one study found that autistic adults who hoard might similarly collect objects over time as a way to remember the past.^[10]Autistic adults’ subjective experiences of hoarding and self-injurious behaviors (Goldfarb et al., 2021) Here, the act of collecting physical objects over the years helps shape people’s memory of their own lives, and potentially moulding their sense of identity over time.^[11]Hoarding disorder: Development in Conceptualization, Intervention, and Evaluation (Bratiotis, Muroff, & Lin, 2021)

In addition to long-term memory, some research has found that hoarders also have atypical executive function challenges similar to autistics who don’t hoard. This includes having trouble with organization and planning for the future.^[12]The profile of executive function in OCD hoarders and hoarding disorder (Morein-Zamir et al., 2014) Hoarders might feel paralyzed with uncertainty about discarding items because they don’t know if they’ll need that item in the future. Similarly, for autistics, executive functioning skills like planning and organization are also common challenges for autistics with ADHD, as we tend to struggle with prioritizing tasks.

Struggles with insight and motivation

Many hoarders often have difficulty recognizing how much their collection has grown and how it might be negatively affecting others.^[13]Hoarding disorder: Development in Conceptualization, Intervention, and Evaluation (Bratiotis, Muroff, & Lin, 2021) Oftentimes, people with low insight into their hoarding behaviours have an outside observer (usually family) who will report issues more than the individual themselves. As such, difficulties reducing clutter and safety concerns could stem from people’s inability to recognize a problem, and therefore, act towards solving the problem.

Other times, hoarders are unmotivated to address issues that arise due to the fear of being judged for uncleanliness, pushing people to socially isolate themselves and avoid the issue altogether.^[14]Hoarding disorder: Development in Conceptualization, Intervention, and Evaluation (Bratiotis, Muroff, & Lin, 2021) This has the potential to lead to situations where hoarders may not want other people in their homes, may refrain from seeking help, and may resist others’ attempts to discard their possessions.

In order to prevent some of the concerns that arise with hoarding, here are a few ways to support hoarders in alleviating distress and reducing clutter.

Support for autistics who hoard

Hoarding is a unique condition as it not only affects one person but also their families and the people living around them. These are the people who make someone aware of the safety hazards and potential social conflict that may arise because of one’s hoarding. Once they are made aware of these issues, hoarders may feel shame and embarrassment, making them vulnerable to experiences of anxiety and depression, as well as poor sleep quality.^[15]Examining subjective sleep quality in adults with hoarding disorder (Mahnke et al., 2021)

In this way, having supportive people in your life is helpful in identifying potential risks as well as supporting people in reducing their hoarding behaviours. These people might identify risks by pointing out things that have become normal for the individual but may actually be an impediment. For example, getting used to the closet drawer getting stuck because it’s full of clothes. They can also help reduce hoarding by helping you sort through the overflowing clothes to find and remove the ones that no longer fit.

When supporting hoarders, it’s important to remember that forcing people to discard their prized possessions (or getting rid of them for them) can be a traumatic experience for people and isn’t actually linked to decreasing hoarding behaviour.^[16]Hoarding disorder: Development in Conceptualization, Intervention, and Evaluation (Bratiotis, Muroff, & Lin, 2021) As such, taking a harm reduction approach to supporting hoarders can help mitigate the negative consequences of hoarding without forcing them to throw out their possessions. Harm reduction centers the person in making decisions for themselves on their hoarding while avoiding arguments or confrontation, which could have harmful effects like the individual further isolating themselves from others.

Sometimes, this approach can look like helping people organize their possessions in a way that makes it safer to access and use different parts of their home. Other times, this could be helping people reduce some clutter so that they won’t be forced out of their homes, or find the best way to keep most of their possessions (or remove as little clutter as possible) without disturbing or endangering others.^[17]Hoarding disorder: Development in Conceptualization, Intervention, and Evaluation (Bratiotis, Muroff, & Lin, 2021)

Based on Bratiotis, Muroff, and Lin’s (2021) report on hoarding, other strategies to support hoarders include strengthening one’s motivation, as well as providing compassion and understanding for people’s possessions and the emotions behind them. For one, people who find it difficult to determine what they don’t need might hoard food or clothes because they feel sad at the idea of it going to waste. This might be something they are embarrassed or ashamed to talk about due to fear of judgment. As such, taking the time to understand the reasons why people hoard things is a way to respect their feelings as real and important. This also helps to build trust between hoarders and their community, and is the kind thing to do!

Additionally, seeking professional help (in the form of organization and therapeutic services) may be necessary to preserve people’s housing and reduce the most negative effects of hoarding.^[18]Hoarding disorder: Development in Conceptualization, Intervention, and Evaluation (Bratiotis, Muroff, & Lin, 2021) In terms of therapies, cognitive behavioural therapy (CBT) is considered to be most effective in helping hoarders break down their thoughts, emotions, and behaviours surrounding hoarding, as well as helping people practice organization and discarding skills. Other services offered may include professional cleaning services specifically for hoarding, as well as emotional and mental support for hoarders and their families.

Summary

• Hoarding is the accumulation of objects, items, or possessions (and the distress associated with discarding possessions) that eventually becomes an obstacle to common activities of daily living (e.g., sleep, social interaction)
• While many autistics may engage in hoarding behaviours relating to their special interests, there is little evidence to support a strong connection between hoarding and autism
• However, hoarders and autistics also share similar experiences with behavioural inflexibility, strong emotional significance with objects, and an increased risk for co-occurring anxiety, depression, and ADHD conditions
• One way to support hoarders is through a harm reduction approach by helping them reorganize or sort through their possessions to reduce the risks of getting hurt from storing things unsafely