'It wasn't the strategies on their own': Exploring caregivers' experiences of accessing services in the development of interventions for autistic people with intellectual disability.
Jessica Hughes, Ruth Roberts, Joanne Tarver and 7 others
PMID 37712611WHAT IT FOUND
Caregivers of autistic children with severe intellectual disability described accessing support as a constant battle.
They highlighted that effective help required individualised assessment, consistency, and collaboration, rather than generic strategies or medication alone. Families felt unsupported when services lacked connection and flexibility.
Key findings
01Caregivers reported that generic 'one-size-fits-all' strategies and medication prescribed without individual assessment were unhelpful barriers to support.
02Positive service experiences were linked to connectedness between systems, having a consistent point of contact, and collaborative goal-setting that respected family expertise.
03Interventions were considered meaningful only when they were flexible, extended in duration, and integrated into the wider family context rather than being isolated sessions.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was small (16 participants) and recruited via social media and university databases, which may underrepresent families with lower socio-economic status or those from ethnic minority backgrounds. Race and ethnicity data were not collected, limiting the transferability of findings across cultures. The study focused on caregivers' perspectives; the autistic individuals themselves did not participate directly. Participants were from the UK and Ireland, so findings may not apply to other healthcare systems.
Declared interests
The authors declared no conflicts of interest. The study was funded by a grant from the Autistica Future Leaders Award and infrastructure funding from Cerebra.
The easy way to misread this
Do not interpret these themes as evidence that specific interventions work. This study reports what caregivers found helpful or unhelpful in past service encounters and their preferences for future support, not the clinical efficacy of any treatment.