Blindness and Autism: Parents' Perspectives on Diagnostic Challenges, Support Needs and Support Provision.
Kim de Verdier, Elisabeth Fernell, Ulla Ek
PMID 30815772WHAT IT FOUND
Parents of blind children with autism described strong music and hearing abilities, but also said the children were very sensitive to noise.
They reported delayed diagnosis, isolation and fragmented support, and wanted coordinated services from staff who knew both conditions.
Key findings
01Parents described all six children as highly interested in music and using hearing actively, while also being very sensitive to noise, with some children having tantrums, aggression or self-harm in overwhelming settings.
02Parents reported that local pediatric and low vision services often attributed developmental concerns to blindness, delaying autism assessment, and that assessment by staff experienced in blindness brought clarity and relief.
03Families felt isolated because other children in services had either blindness or autism, not both, and wanted coordinated support, contact with other parents, and staff who understood both disabilities.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
This qualitative study interviewed 8 parents of 6 children, so it reports experiences rather than measured child outcomes. The families were strategically selected from 22 identified children, not randomly sampled, so they may not represent all families. Only parents were interviewed for this paper, so teachers, children and service providers were not included here. Quotes are not linked to specific children or families to protect anonymity, so it is not possible to see how each theme applied to each child. The children were 7-16 years old and the sample was very small, so the findings say little about younger children or adult services.
The easy way to misread this
Do not read these themes as proof that a coordinated support model, adapted assessment or parent peer contact improves child outcomes. The study interviewed 8 parents of 6 children and did not test an intervention or measure clinical results.