Assessment & Research

Eye gaze and pupillary response in Angelman syndrome.

Hong et al. (2017) · Research in developmental disabilities 2017
★ The Verdict

Caregiver surveys reveal that people with Angelman and related syndromes show clear sensory quirks, with MECP2 duplication causing the strongest reactions.

✓ Read this if BCBAs assessing sensory or communication issues in Angelman, Rett, or MECP2-duplication cases.
✗ Skip if Clinicians who only serve clients with typical sensory profiles.

01Research in Context

01

What this study did

Costa et al. (2017) asked caregivers to fill out a survey. They wanted to know how people with Angelman syndrome look at faces and how their pupils react.

The survey also asked about sensory issues. Caregivers reported what they saw at home every day.

02

What they found

Caregivers said both Angelman and two other rare disorders show odd sensory responses.

One group, MECP2 duplication syndrome, showed stronger signs of being bothered by sounds or lights and seeking extra sensory input.

03

How this fits with other research

Scior et al. (2023) used the same caregiver-survey style but asked about talking instead of senses. Their ORCA tool now lets you measure communication without a trained tester.

Peñuelas-Calvo et al. (2019) pooled 18 studies on the "Reading the Mind in the Eyes" test in autism. They found typical kids use verbal skills, while autistic kids lean on visual skills. The Angelman study adds caregiver views on eye use in a different disorder.

Kumazaki et al. (2019) showed kids with autism adapt less to smells. Together these papers say sensory quirks show up in many ways across disorders, so check eyes, ears, and nose.

04

Why it matters

You can borrow the simple caregiver survey idea. Ask parents what lights, sounds, or faces bother their child. Note which sense seems worst. Pair this quick report with direct eye-tracking if you need numbers. It gives you a low-cost way to spot sensory triggers before problem behavior starts.

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Add a five-question caregiver mini-survey about lights, sounds, and eye contact to your intake packet.

02At a glance

Intervention
not applicable
Design
survey
Sample size
172
Population
other
Finding
not reported

03Original abstract

The methyl CpG-binding protein-2 (MECP2) gene is located on the Xq28 region. Loss of function mutations or increased copies of MECP2 result in Rett syndrome (RTT) and MECP2 duplication syndrome (MDS), respectively. Individuals with both disorders exhibit overlapping autism symptoms, yet few studies have dissected the differences between these gene dosage sensitive disorders. Further, research examining sensory processing patterns in persons with RTT and MDS is largely absent. Thus, the goal of this study was to analyze and compare sensory processing patterns in persons with RTT and MDS. Towards this goal, caregivers of 50 female individuals with RTT and 122 male individuals with MDS, between 1 and 46 years of age, completed a standardized measure of sensory processing, the Sensory Experiences Questionnaire. Patterns detected in both disorders were compared against each other and against normative values. We found sensory processing abnormalities for both hyper- and hypo-sensitivity in both groups. Interestingly, abnormalities in MDS were more pronounced compared with in RTT, particularly with items concerning hypersensitivity and sensory seeking, but not hyposensitivity. Individuals with MDS also exhibited greater sensory symptoms compared with RTT in the areas of tactile and vestibular sensory processing and for both social and nonsocial stimuli. This study provides a first description of sensory symptoms in individuals with RTT and individuals with MDS. Similar to other neurodevelopmental disorders, a variety of sensory processing abnormalities was found. These findings reveal a first insight into sensory processing abnormalities caused by a dosage sensitive gene and may ultimately help guide therapeutic approaches for these disorders.

Research in developmental disabilities, 2017 · doi:10.1111/j.1469-7610.2011.02455.x