Parental Perceptions of Their Healthcare Experiences & Future Need for Children / Young People with Autism in the U.K.

Background: Children with Autistic Spectrum Disorders (ASD’s), present with inherently heterogeneous behavioural challenges & often concomitant physiological and psychiatric conditions. In general they require a higher need for medical support from a wide range of health care professionals throughout the course of their development than their neurotypical peers.

Objectives: No published data has currently been collected in the U.K. to show either, 1): How frequently children / young people with autism access all types of health care provision?, or 2): How satisfied their parents / carers are with the level of health-related support which their dependents with autism have received? The current study aimed to capture this information, in addition to testing what factors may shape the overall “healthcare experience”.

Methods: Data were obtained by combined means of a paper & online, 25-item questionnaire distributed to parents of children (aged 0-18 years) with autism via 3 gatekeepers; Kent Autistic Trust, (KAT), Medway Autism Group and Information Centre, (MAGIC), & the National Autism Database U.K. The services surveyed were General Practitioners (GP’s), Paediatricians, Child & Adolescent Mental Health Services, (CAMHS); Accident & Emergency & inpatient hospital admissions. Participants were asked if they had previously heard of Hospital passports; (HPs), (dossiers of integrated patient information), and if they considered whether HP’s could hold potential utility for their child?

Results: Data were obtained from 214 completed questionnaires. Findings revealed that hospital services were used least, however parents were most satisfied with these acute care services, as well as with primary care provision from GP’s. In contrast 60% of families were less than satisfied with mental health services provided by CAMHS. Parental satisfaction with hospital paediatrician services was higher among those who attended higher numbers of appointments than those accessing fewer consultations. Common qualitative themes raised concerns surrounding the level of ASD-specific knowledge among healthcare professionals, length of waiting times for referrals, & level of inter-specialism communication. Most participants, (80%) were unaware of the existence of hospital passports, however a large majority, (95%) considered them of potential benefit to their child / young person with autism.

Conclusions: Parental suggestions for healthcare improvements could potentially inform future practice to drive the need for ASD-related individualised care. Overall the profile of differences in parental satisfaction across healthcare services highlight that specific areas could be improved to be more adequately tailored to meet the holistic healthcare needs of children with autism.