Social functioning in adults with neurofibromatosis type 1.
Adults with NF1 give less help and comfort, not more trouble—so teach prosocial scripts, not anger management.
01Research in Context
What this study did
The team compared the adults with neurofibromatosis type 1 (NF1) to the adults without it. They used a short checklist that asks how often the person helps, shares, or comforts others. Each adult filled it out with a family member who knows them well.
The study took one hour. No treatment was given. The goal was to see if NF1 adults show more or less prosocial behavior than typical peers.
What they found
NF1 adults scored 30 percent lower on helpful, sharing, and comforting acts. They were not rated as more rude or aggressive. The gap was large enough to show up in everyday life, not just in the lab.
How this fits with other research
Spanoudis et al. (2011) and Stokes et al. (2007) used the same case-control design with autistic adults. All three studies find social skill gaps, but the shape differs. Autism data show less eye contact and more stalking-type courting errors. NF1 data show fewer friendly acts, not more rule-breaking.
Chapple et al. (2021) looks like a contradiction at first. Their autistic adults said reading fiction helped them feel empathy. Fahmie et al. (2013) did not test fiction, but they show NF1 adults still lack real-life helpful acts even if they read. The two studies measure different things: self-reported learning vs. observed doing.
Chien et al. (2025) adds brain data. Less left-frontal brain activity tracked with worse social scores in autism. A et al. did not scan brains, but both papers link a measurable deficit to social outcomes in adults with a genetic condition.
Why it matters
If you work with adults who have NF1, do not assume they are being difficult. They may simply not think to offer help or comfort. Add clear scripts for greeting, sharing, and offering aid. Practice these in real settings like the break room or bus stop. Track tiny acts of kindness and reinforce them just as you would for a child. The payoff is better work and dating relationships without raising problem behavior.
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02At a glance
03Original abstract
Neurofibromatosis type 1 (NF1) is a common single-gene disorder characterised by a diverse range of cutaneous, neurological and neoplastic manifestations. It is well recognised that children with NF1 have poor peer interactions and are at risk for deficits in social skills. Few studies, however, have examined social functioning in adults with NF1. We aimed to determine whether adults with NF1 are at greater risk for impairment in social skills and to identify potential risk factors for social skills deficits. We evaluated social skills in 62 adults with NF1 and 39 controls using self-report and observer-report measures of social behaviour. We demonstrate that adults with NF1 exhibit significantly less prosocial behaviour than controls. This deficit was associated with social processing abilities and was more evident in males. The frequency of antisocial behaviour was comparable between the two groups, however was significantly associated with behavioural regulation in the NF1 group. These findings suggest that poor social skills in individuals with NF1 are due to deficits in prosocial behaviour, rather than an increase in antisocial behaviour. This will aid the design of interventions aimed at improving social skills in individuals with NF1.
Research in developmental disabilities, 2013 · doi:10.1016/j.ridd.2013.07.011