Hoarding behaviours in autistic children may seem perplexing to those who haven’t encountered them before. They go beyond a typical messy room, for example. There is usually high anxiety underlying compulsive hoarding.
For some autistic children, hoarding behaviours offer a sense of comfort and stability amidst an often chaotic sensory environment. Children often experience relief from anxiety by collecting and arranging their belongings in specific ways. Children may also develop hoarding tendencies due to challenges with executive functioning, which includes planning, organising, and completing tasks.
If you understand the reasons why your child is hoarding, you can be proactive in ensuring their needs are met and offering support when necessary. That’s what I will help you do in this article.
Understanding Autism Spectrum Disorder and Hoarding
Autism Spectrum Disorder
Autism Spectrum Disorder (ASD) is a developmental disorder that affects communication, social interaction, and behaviour. It is characterised by a range of symptoms and can vary greatly in severity. Autistic people have varying levels of difficulty with social communication, restricted or repetitive patterns of behaviour, and sensory sensitivities or differences.
At my clinic, Everlief, we prefer to use the term autism rather than referring to autism as a disorder. To us, it is a difference which brings many strengths as well as some difficulties.
Hoarding disorder is a mental health condition outlined in the Statistical Manual of Mental Disorders (DSM-5), in which someone has difficulty discarding or parting with possessions. Unsurprisingly, this tends to result in the accumulation of a large number of items.
This accumulation can negatively impact a person’s living space, quality of life, and pose safety or health risks. The diagnostic criteria for hoarding disorder include the persistent difficulty in disposing of possessions, a perceived need to save these items, and the resulting clutter that disrupts living spaces.
Why Do Autism and Hoarding Overlap So Commonly?
A 2018 study found clinically significant hoarding behavior in 25% of autistic children who had a co-occurring anxiety disorder. This is much higher than the general population, estimated at around 2% in childhood, increasing to 6% among adults aged over 70 years.
There are several reasons why autism and hoarding often overlap. Firstly, autistic people often experience executive functioning problems such as difficulty with planning, attention, and organisation. These difficulties are also associated with hoarding behaviours. It makes sense. If you struggle to plan ahead, then you are more likely to accumulate things without carefully planning what to do with those things, how to store them and how long you will keep it.
Secondly, sensory sensitivities in autistic people can lead to the development of hoarding behaviours. For example, autistic children may find comfort in certain items or collect objects in response to specific sensory needs.
Finally, a special interest or intense interests can become obsessive, even developing into obsessive hoarding. Obsessive-compulsive disorder (OCD) symptoms are associated with autism. Black and white thinking (another common autistic trait) can further complicate things. Here’s an example:
Case Study: Adam age 15
Adam considers himself an expert in all things Star Wars. He has even started a Star Wars club at high school. Of course, he knows thousands of facts about Star Wars, including dates of all the films and details of all the actors. This extends to collected Star Wars memorabilia. Adam is obsessive about his collections. His shelves are all full of star Wars merchandise but he continues to collect it. He feels he has to collect every single item in a set for his collection to be worthwhile. Adam’s collection has now taken over the living room, and he has a lot of books, DVDs and Star Wars toys on his floor. It has reached the point of hoarding.
Understanding the connection between autism and hoarding can help you better support your child if they are experiencing both conditions. By being aware of the potential risks and challenges, you can work to develop strategies and interventions to address the hoarding and improve their quality of life.
Recognising Hoarding Behaviour in Autistic Children
Common Signs and Symptoms
When it comes to recognising hoarding in autistic children, there are several common signs and symptoms you should be aware of. These may include:
- Difficulty discarding items: This could be the first and most obvious sign. Your child may resist throwing away items that have no practical use or value, such as old papers, broken toys, or worn-out clothes. This can lead to an unmanageable amount of clutter.
- Distress associated with discarding: If your child becomes visibly upset or experiences anxiety when asked to discard or when losing items, this could be an indication of hoarding. Their distress may be disproportionately intense, relative to the actual value or importance of the item.
- Cluttered living spaces: This could involve an excessive accumulation of items that clutter your child’s room or other living spaces, impairing the intended use of the space. Your child might try to resist efforts to clean or organize these spaces.
- Strong attachment to items: Your child may show an unusually strong emotional attachment to their possessions, even if these are broken, obsolete, or of no intrinsic value. They may have a hard time separating from these possessions. They may even view them as extensions of their identity.
- Obsessive thoughts and behaviors: Your child may spend an excessive amount of time acquiring new items (even if they are of no apparent value), thinking about them, or arranging them. These repetitive behaviours might interfere with their daily functioning and social interactions.
- Collecting and categorizing: While collecting and categorizing are common behaviors among autistic children, those who hoard may take this to an extreme. They may collect an excessive number of items, categorize them in meticulous ways, and exhibit significant distress if their collections are disturbed or altered.
- Interference with daily life: Hoarding in autistic children often interferes with daily activities, such as doing homework, sleeping, or moving around the house. It can also disrupt family dynamics and create conflict at home.
- Secrecy about possessions: Your child might hide their possessions or become very secretive about them, fearing others will touch or take away their items.
Causes and Risk Factors
There are several potential causes and risk factors for compulsive hoarding in autistic children, such as:
- Need for control or stability: Autistic children often feel a strong need for stability and control in their environment. Accumulating and arranging items can provide a sense of order and predictability, offering some level of comfort and security.
- Sensory sensitivities: Some autistic children are particularly sensitive to sensory stimuli, such as textures or colors. They may hoard items that provide pleasing sensory experiences.
- Interests and preoccupations: Autistic children often have intense, focused interests. If their interest involves tangible items—like books, toys, or collectibles—they may accumulate large amounts of these items.
- Anxiety and stress: Hoarding can be a coping mechanism for managing anxiety and stress. The act of collecting and organizing items may have a calming effect, while the thought of discarding items can trigger anxiety.
- Difficulties with decision making: Autism can sometimes be associated with difficulties in decision making and executive function. The process of deciding what to keep and what to throw away can be overwhelming, leading to a tendency to just keep everything.
- Difficulty understanding social norms: Some autistic children may not understand or may be less influenced by social norms regarding what is considered an acceptable amount of possessions or what items are considered worth keeping.
- Traumatic experiences: While not unique to autistic children, traumatic experiences such as loss, abandonment, or significant change can sometimes lead to hoarding behaviors. The items hoarded may serve as a source of comfort or a way to exert control in an unpredictable world.
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When Should You Be Concerned?
It’s essential to know when to be concerned about hoarding behaviours in your autistic child. Warning signs may include:
- Impaired functioning: If hoarding behaviors significantly impede your child’s daily activities (including sleeping) I would advise seeking professional help. Similarly, if these behaviours interfere with the functioning of the household as a whole, such as other family members being unable to use shared spaces, this is also a red flag.
- Severe distress about discarding items: While it’s normal for children to form attachments to certain items, if your autistic child shows intense, prolonged distress about discarding items of no apparent value or usefulness, it could be a sign of a more serious hoarding issue. They may assign sentimental value to so many items, that it becomes impossible for them to keep, enjoy or appreciate them all.
- Social isolation: If child hoarding behaviors are leading to social isolation, such as your child avoiding inviting friends over due to embarrassment about their clutter, or declining to visit friends for fear of being away from their possessions, this is a significant warning sign.
- Persistent and escalating behaviors: If your child’s hoarding behaviors persist despite repeated discussions and attempts to intervene, or if the behaviors seem to be escalating over time, it could indicate a more serious issue.
- Health and safety risks: Accumulated clutter can pose health and safety risks, including fire hazards, tripping hazards, and issues with cleanliness and sanitation. If your child’s hoarding behavior is leading to these risks, it’s definitely time to seek help.
- Neglect of personal hygiene or health: In severe cases, hoarding can lead to neglect of personal hygiene or health. A child may be too preoccupied with their possessions to attend to these needs, or there may not be space or resources available due to the hoarding.
The Effects of Hoarding Behaviour on Autistic Children
Impact on Self-Esteem and Mental Health
Hoarding behavior can cast a significant shadow on an autistic child’s self-esteem and overall mental health. Autistic children are often already grappling with complex emotional challenges, and the added strain of hoarding can exacerbate these issues. It’s worth noting that anxiety disorders are very common in autistic children and teens, and hoarding behavior might be both a symptom and a cause of increased anxiety.
In some instances, hoarding behaviors can be linked to obsessive compulsive disorder (OCD), a condition frequently co-occurring with autism spectrum disorders. The repetitive and ritualistic nature of hoarding is often connected with anxiety and compulsive tendencies, leading to a cycle that further impacts a child’s psychological wellbeing.
Managing Safety Concerns
The hoarding behaviour of your autistic child might lead you to have a number of safety concerns, such as:
- Fire hazards: Any excessive clutter can pose a fire risk, which could be detrimental to your child’s safety.
- Tripping hazards: Clutter and disorganisation can lead to tripping hazards, increasing the risk of accidents or injuries in your home.
- Sanitary issues: Poor personal hygiene and unsanitary living conditions can expose your autistic child to various health problems and infections.
If you share some or all of these concerns, or any in the “When should you be concerned” section, it’s time to take action. Let’s talk through what you can do to support your child.
Strategies for Supporting Your Child With Hoarding
1. Empathy and Nurture
Supporting a child who exhibits hoarding behavior calls for patience, empathy, and understanding. It’s really naturally to feel frustrated. But it’s also essential to acknowledge that children often have unique emotional attachments to their possessions, which may seem unusual or excessive to others but are incredibly significant to them.
Rather than dismissing or marginalizing their special interests, strive to engage in meaningful dialogues with your child about their possessions and the emotions associated with them. Try to make sure they feel safe expressing their concerns, fears, and feelings without judgment. This approach not only respects their unique needs but also lays a foundation for mutual understanding and a “team work” approach to overcoming hoarding.
In every step of this journey, keep in mind that your child’s attachment to their possessions isn’t merely about the material items. It’s about the comfort, stability, and sense of identity they derive from them. By respecting this and approaching the situation with empathy and patience, you can more effectively guide your child towards healthier habits and coping mechanisms.
2. Practical Intervention Strategies
Supporting autistic children who hoard requires a multi-faceted approach that combines understanding, patience, and practical intervention strategies. Organization techniques can be particularly beneficial. Also bear in mind that children – even older teens – need much more help with organization than we think because their brains are still developing.
Use of Defined Storage
Start by establishing a well-defined structure for their possessions. Use clear bins or labels to categorize items, allowing your child to visualize where each object belongs. This process will help your child recognize when the volume of their collections might be exceeding practical limits.
Focus on just one area at a time. For example, their desk or one drawer. Work together to follow a sorting process, such as three piles: “keep”, “donate” and “sell”. Sorting can be a therapeutic process – your child may feel a sense of light relief. However, remember that they will also probably feel a sense of loss too.
Does your child struggle in particular with deciding what to keep? Decision-making skills can be honed through slow, incremental practices. Starting with just one category (e.g. soft toys) help your child sort their possessions into categories such as “Essential,” “Nice to Have,” and “Not Needed.” This way, they can recognize the different levels of importance they assign to their belongings.
Over time, encourage them to periodically review these categories and decide if some items can be moved into less critical categories or discarded. This process of re-evaluation helps to normalize the idea of letting go of less useful or meaningful items, while still respecting their attachment to the things they value most.
Addressing the anxiety associated with discarding items is another critical step. Your child’s attachment to their belongings stems from a need for control and stability in their environment. Try introducing the idea of donating some items as a positive action. Their toys or books can bring joy to another child, for instance.
You might also establish a “transition area” for items to be discarded, where they can stay for a short period before being removed completely. This gives your child time to adjust to the idea of the item being gone.
Remember, this process should be slow and respectful, emphasizing your child’s autonomy and gradually reducing the anxiety associated with parting from objects. I know it’s laborious and hard work, but it’s the most effective way to deal with hoarding in the long term.
It’s really important that as a parent you try to understand the fear or worry underlying the anxiety. This understanding will help you suggest a plan that your child is more likely to engage with. Here are some examples:
Thirteen year-old Anesha hoards books and magazines. She feels she can’t let them go unless she has made sure she has read every single word. Her fear is that she will miss something important. Underneath that is a fear that other people will think she is ignorant or stupid.
Six year old Freddie can’t bear for food to be thrown away. He has been found to store food his room until it turns mouldy, causing significant hygiene problems. Freddie believes that his food has feelings and he worries that if they are thrown away they will be alone.
Fifteen year old Erica can’t bear to throw anything away. She keeps plastic bags, wrappers, scrap paper, and many other items that other people would throw away. She ran out of storage space a long time ago and her entire bedroom floor is piled high with “stuff”. Beneath Erica’s hoarding is a worry that if she throws something away, she might need it one day. Digging even deeper, her core belief is that she would not be able to cope with the sadness of needing something and yet knowing she has discarded it.
Each of these strategies requires time and patience, and it’s essential to recognize and celebrate small victories along the way. This process is not just about managing hoarding behavior, but about empowering autistic children with decision-making skills, fostering their capacity for organization, and helping them manage their anxieties effectively.
3. Cognitive Behavioural Therapy
CBT is a process that works by helping your child understand and then change their thoughts and behaviors. A clinical psychologist will work with your child to identify the root causes of the hoarding. They will also look at any “maintaining factors”. In other words, what is keeping it going? For example, the hoarding might be caused by a child struggling to cope with the sadness of “losing” a possession. But the child’s organisation and planning difficulties may be a maintaining factor.
One of the first steps in CBT is psychoeducation. Here, the therapist will help your child understand their hoarding tendencies. They’ll explain why people hoard, what triggers this behavior, and how it is impacting their life.
Next, your child will learn to recognize their thoughts and feelings associated with hoarding. This can include the intense need to acquire items or the distress they feel when parting with belongings.
The therapist will then guide your child to gently challenge these thoughts. For instance, they might ask your child to consider what would happen if they didn’t buy a particular item, or how they would feel if they let something go.
Gradually, your child will learn to replace these thoughts with healthier, more helpful ones. For example, they may learn to understand that they can’t keep every item, or that their worth isn’t tied to their possessions.
Cognitive-behavioral therapy also includes practical exercises like sorting and discarding items, with your child making the decisions. This hands-on approach not only gives your child control but also provides a safe environment to practice new skills.
Conclusion and Further Resources
Managing hoarding in autistic children can be so challenging for families.
Hoarding disorder is not only a mental health problem in its own right, but it can also contribute to other mental health problems such as depression.
Finding the best strategy to address hoarding in your child may involve therapeutic support (usually CBT) from a professional.
Understanding the unique autistic traits your child has will help you develop tailored strategies to reduce their hoarding habits. Be open to trying a lot of things.
Keep in mind that progress may be gradual and challenging. You may face ups and downs along the way (it’s unlikely to be a straight path to success). However, with persistence and the right support, it’s possible for you and your family to create a healthier, more organised environment for your autistic child.
Dr Lucy Russell is a UK clinical psychologist who works with children and families. Her work involves both therapeutic support and autism assessments. She is the Clinical Director of Everlief Child Psychology, and also worked in the National Health Service for many years. In 2019 Lucy launched They Are The Future, a support website for parents of school-aged children.
Through TATF Lucy is passionate about giving practical, manageable strategies to parents and children who may otherwise struggle to find the support they need.
Lucy is a mum to two teenage children. She lives in Buckinghamshire with her husband, children, rescue dog and three rescue cats. She enjoys caravanning and outdoor living, singing and musical theatre.
Join They Are The Future’s free Facebook group for regular tips and great ideas to support teens and pre-teens with their mental health! Join the group: Parent Tips for Positive Child Mental Health UK.