Anxiety-associated and separation distress-associated behaviours in Angelman syndrome.
About half of people with Angelman syndrome show anxiety and get upset when caregivers leave, so screen for it.
01Research in Context
What this study did
The team sent a survey to caregivers of people with Angelman syndrome. They asked how often the person showed worry signs and got upset when the caregiver left. No treatment was tested; they just wanted to count the behaviors.
What they found
Roughly half of the respondents said the person with Angelman showed clear anxiety and separation distress. The survey gave a simple head-count, not scores or graphs.
How this fits with other research
Vassos et al. (2023) asked the same question with a larger group and got the same picture: caregiver departure is the top trigger. They added that aggression is often the first sign you will see.
Merton et al. (2025) flipped the lens and looked at caregiver stress. They found parents of people with Angelman feel the highest stress among rare-syndrome groups. So the child’s separation anxiety and the parent’s stress rise together.
English et al. (1995) listed every behavior problem seen in Angelman but did not single out anxiety. Chezan et al. (2019) zoomed in on that missing piece, giving today’s BCBAs a clearer target.
Why it matters
If you serve someone with Angelman, add a quick anxiety screen to your intake. Ask the caregiver, "What happens when you leave the room?" Watch for aggression, pacing, or laughing spikes. Spotting the pattern early lets you build a plan that teaches calm replacements and gives caregivers a break.
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02At a glance
03Original abstract
BACKGROUND: Anxiety is considered a 'frequent' feature in the clinical criteria for Angelman syndrome; however, the nature and severity of anxiety symptoms have not been well characterised in this population. Anxiety behaviours, especially in response to separation from a preferred caregiver, have been described clinically but have not yet been explored empirically. METHOD: This study used a combination of standardised and clinician-derived survey items to assess the frequency, nature and severity of behaviours associated with anxiety and separation distress in 100 individuals with Angelman syndrome. Family (e.g. income and maternal education) and individual (e.g. age, sex, genetic subtype, sleep difficulties and aggressive behaviours) variables were also gathered to assess possible predictors of higher anxiety levels. Approximately half of the sample was seen in clinic and assessed with standardised measures of development and daily functioning, allowing for an additional exploration of the association between anxiety symptoms and extent of cognitive impairment. RESULTS: Anxiety concerns were reported in 40% of the sample, almost 70% were reported to have a preferred caregiver and over half displayed distress when separated from that caregiver. Individuals with the deletion subtype and individuals who are younger were less likely to have anxiety behaviours. Sleep difficulties and aggressive behaviour consistently significantly predicted total anxiety, the latter suggesting a need for future studies to tease apart differences between anxiety and aggression or anger in this population. CONCLUSIONS: Anxiety concerns, especially separation distress, are common in individuals with Angelman syndrome and represent an area of unmet need for this population.
Journal of intellectual disability research : JIDR, 2019 · doi:10.1111/jir.12635