OTQualitativeAutism : the international journal of research and practice2021

Autistic adults' subjective experiences of hoarding and self-injurious behaviors.

Yael Goldfarb, Osnat Zafrani, Darren Hedley and 2 others

PMID 33631948

WHAT IT FOUND

Ten autistic adults described hoarding objects for emotional security and memory, not just special interests.

Half reported self-injury to regulate distress or sensation. These behaviors serve specific functions. Ask about them directly, as they may be hidden from family.

Key findings

01Nine of ten participants described collecting or hoarding, driven by emotional attachment, security, and preserving memories, rather than only special interests.

02Five participants reported self-injurious behaviors, such as scratching or hitting, primarily to regulate severe emotional distress or to elicit physical sensation due to high pain thresholds.

03Participants noted that self-injury and hoarding are often concealed from others, meaning parent reports may miss these behaviors.

STILL TO COME

How it was doneWhat they foundWhat it means for OTs

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What it does not show

The sample is very small (10 people) and not representative of all autistic adults. All participants were cognitively able and verbal, so findings may not apply to non-speaking individuals or those with intellectual disability. The sample had a higher proportion of females than typical autism studies, which may influence the types of behaviors reported. Participants were recruited via social media and blogs, which likely selects for individuals who are open about their diagnosis and experiences.

Declared interests

The authors declared no potential conflicts of interest and received no financial support.

The easy way to misread this

Do not assume hoarding is always linked to special interests or that self-injury is always visible. These behaviors may serve emotional regulation functions and are often concealed from family members, requiring direct, confidential questioning to identify.

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