Autism and hoarding

By Micah Mazurek, Ph.D.

This answer is from psychologist Micah Mazurek, of the University of Missouri’s Thompson Center for Autism and Neurodevelopmental Disorders. The center is one of 14 sites in the Autism Speaks Autism Treatment Network (ATN).

Our 22-year-old son has Asperger syndrome and is a hoarder. He’s afraid to let me help him clean out his room for fear that I will throw everything away even though I told him I won't. Can you recommend some strategies for working with him?”

Thanks so much for your question and for sharing your experiences. I think many of our families face similar challenges.

It may be that your son enjoys collecting objects – as do many individuals on the autism spectrum. Some collect typical things such as baseball cards, coins and figurines. However, it’s also common for individuals with autism to collect things that seem like “junk” to other people. Classic examples include bits of string, pieces of metal or paper scraps.

As you’ve seen, living spaces can become extremely cluttered when a person has trouble parting with his or her favorite “stuff.” It’s also very common for people with autism to become extremely distressed if others rearrange or throw away their items.

This makes it difficult for loved ones to know how to provide support. I have a number of strategies to recommend. They can be quite helpful with mild to moderate hoarding. However, it’s important to seek professional help with severe hoarding that may reflect an underlying mental health problem.

Autism and hoarding: How to help

Seek professional help if necessary

Generally, professional help is needed when hoarding becomes so extreme that it interferes with a person’s daily functioning. If you sense that this is the case with your son, I strongly recommend working with a psychologist or other behavioral health professional with expertise in treating compulsive behaviors including hoarding.

Certain types of cognitive-behavioral therapy can be particularly helpful to address hoarding. This approach helps build personal motivation to change. In particular, it helps individuals develop decision-making and organizational skills and change unhelpful thought patterns and habits. Ideally, the therapist will conduct at least some sessions in your home.

Screen for anxiety and depression

Similarly, it’s important to make sure that your son’s hoarding isn’t related to a severe anxiety disorder or depression. If you suspect this might be the case, I urge you to talk with a psychologist, psychiatrist or other behavioral health professional to discuss treatment options.

Cognitive behavioral therapy can likewise help with depression and anxiety.

There are also medications that might help. For more guidance, download the Autism Speaks Medication Decision Aid Tool Kit.

At-home strategies to help with autism hoarding

From what you describe, it sounds like you may be able to start with some at-home strategies right away. Here are some suggestions:

The first step is to try to figure out why your son hoards. Reasons for hoarding vary widely from person to person. And the most-effective strategies for addressing the hoarding will address these underlying issues.

For many people with autism, for example, hoarding is a way to manage stress or anxiety. Collecting objects can be comforting and calming.

For others, hoarding may be related to difficulty making decisions. It may be so tough for your son to know what to keep and what to throw out that he becomes extremely stressed when forced to make such decisions.

For still others, the problem involves poor executive function – such as the ability to organize and plan. If this is the case for your son, a big job like cleaning up his cluttered room may feel overwhelming because he doesn’t know where to start.

It will help if you and your son can discuss his thoughts, feelings and beliefs around his “collecting.” I encourage you to ask him how he feels about his objects. What does he think would happen if he got rid of this one or that one? How does he feel when you ask him to clean up his messy room? Try to keep the conversation calm and nonjudgmental, even if your son’s feelings and explanations sound unreasonable or far-fetched to you.

He may also be able to help you by monitoring his own thoughts and behavior. For example, he could keep a diary about his collecting. What is he collecting? When is he collecting? Is he more likely to collect during certain times of day or days of the week? He can note his thoughts and feelings when he adds a new item. What was he thinking and feeling right before adding the object? What was he thinking and feeling after adding the object? He can jot down his feelings when he even thinks about throwing an object away. What does he fear will happen? This will help you and your son learn more about what might be triggering and maintaining his behavior.

With children who have limited verbal abilities, observation rather than discussion may be more helpful. The focus of the observation should be on identifying events or behaviors that occur just before and immediately after hoarding. For example, the hoarding behavior may occur more often when the child is asked to try a new or challenging task. It may follow some other anxiety-provoking situation. Or it could be more common during unstructured free time. These clues might help you determine the reasons for the behavior: Task avoidance? Anxiety-reduction? Filling time?

This type of observation is sometimes called A-B-C (Antecedent-Behavior-Consequence) monitoring. You can learn more about this type of behavior assessment in the Autism Speaks ATN/AIR-P Introduction to Behavioral Health Treatments and Challenging Behaviors Tool Kit.

Personalizing your strategies

Once you’ve identified possible reasons for your son’s behavior, you can begin to work with him to develop strategies that address his needs in constructive ways.

If hoarding is how your son deals with anxiety, he may benefit from learning more-positive stress-management coping skills. For more guidance, I recommend the following expert-advice posts:

If you son struggles with knowing what to throw away, it may help for the two of you work together on a sorting process. For instance, have him sort some objects into simple piles such as “keep” or “let go.” Or the two of you could sit down together as he makes a “keep” list and a “let go” list that he knows he can review before taking any action.

If your son’s challenge is with organization and planning, it will help to break down the project into small, manageable tasks. Creating checklists, schedules and other visual supports can help him see what steps are required and how to track his own progress. Download the Autism Speaks ATN/AIR-P Visual Supports Guide.

To start, I suggest having your son focus on one small area of his room. To help him build on success, consider starting with a relatively easy spot like one dresser drawer. With each success, move to a slightly larger task – perhaps his desk and eventually his closet. Don’t forget to provide praise for each small success! I encourage you and your son to brainstorm ideas for rewards or other incentives for each small step. This may help keep him motivated as he works toward his larger goal.

For adolescents and young adults, learning to track one’s own behavior can be a great way to build independence and the ability to manage a range of habits. Key strategies include learning to pay attention to one’s own behavior, to keep track of behavior (checklists, etc.), and to reward one’s self. Working with a behavioral health specialist may be helpful in learning and practicing these strategies.

Thanks again for your question. I hope these tips help you and your family.

Editor’s note: The above information is not meant to diagnose or treat and should not take the place of personal consultation, as appropriate, with a qualified healthcare professional and/or behavioral therapist.