Exploring the experiences of families with autistic daughters in seeking and utilising support: a Scottish perspective

In 2010, The Scottish Government invested £10M to support The Scottish Strategy for Autism, which highlights the need to consider autism in the early years, primary and secondary school stages (Scottish Government 2010) and should theoretically lead to increased awareness of all autistic children within education settings. Indeed, accessing and locating appropriate services of support is an essential aspect in improving quality of life, both for an autistic young girl and her family. Past research shows that autistic females are more likely to go unnoticed or diagnosed at a later age compared to their male counterparts, subsequently impacting the degree of support they receive from healthcare/social services, education, and local resources etc.
The study intended to bring attention to the discrepancies in the female presentation of autism and the possible impact this had on the quantity and quality of support provided to families for their daughter/s.
Twelve mothers of autistic young girls completed online semi-structured interviews. The mean age of the young girls the parents represented was 9.53 years, with ages ranging between 3 and 16 years old. Of the sample, 11 of the children had received a formal clinical diagnosis of autism, 3 children were currently awaiting an assessment for autism, and 1 child was suspected to be presenting with symptoms of autism. Additional information revealed that of the sample, 14 children attended a mainstream school while only 1 child attended an alternative provision. The discussions centred around their experiences of seeking and utilising the supports available to them. Using Braun and Clarke’s (2006) thematic analysis, four key themes emerged: Experiences with education and school support (the consequences of masking; school interventions), Perceived barriers when accessing support (post code lottery; dependency on obtaining a diagnosis to access support; harmful professional stereotypes of autism), Involvement of parents (parent-led research efforts; fighting for access to support) and Scarce provision for post-diagnostic support. Findings indicated that a majority of parents experienced various difficulties with the accessibility of support service provisions, including their knowledge of existing autism-specific supports and experiences of stigmas leading to inadequate help or a reluctance to implement such. Findings can be utilised to inform other caregivers, educational and healthcare professionals about the presentation of autism in young girls. Future research should focus on exploring the influence of sex/gender disparities within autism from the perspectives of professionals, in order to prevent the frequent under-recognition and misdiagnosis of autistic females. This could ensure that the current support service provisions in Scotland and beyond are specifically designed to address the needs of autistic girls.