The complexities of diagnosis: New Zealand parents' knowledge, perceptions, and experiences of identification of their children's language and literacy difficulties

PurposeThis study reported the experiences of New Zealand caregivers of children with language and literacy difficulties in having their child's needs identified.MethodThe participants were 14 mothers of children with idiopathic language and literacy difficulties, recruited through social media language and literacy difficulties support groups. Two mothers identified as Maori and 12 New Zealand European. Data were collected through semi-structured interviews. A phenomenological approach using reflexive thematic analysis was used.ResultThese mothers had learned about language, literacy, and the education system to advocate for their child and perceived a lack of knowledge on the part of schools. Nearly all had sought a diagnosis, with understanding and access to support reported as positive consequences and stigma as a negative. Some preferred labels emphasising difference rather than disorder, consistent with traditional Maori and neurodiversity views. The mothers described their experience as a fight, due to their concerns being ignored, the need to pay for private diagnostic assessments and difficulty accessing services. They appreciated assessors who gave useful, comprehensible information and supported school liaison.ConclusionThese mothers wanted improved teacher training and publicly funded diagnostic assessment services to improve access to best practice language and literacy instruction for their children.

Automated summary

This study reported the experiences of New Zealand caregivers of children with language and literacy difficulties in having their child's needs identified. The participants were 14 mothers of children with idiopathic language and literacy difficulties, who had learned about language, literacy, and the education system to advocate for their child. The mothers sought a diagnosis and reported understanding and access to support as positive consequences, while stigma was seen as negative. They described their experience as a fight due to their concerns being ignored and the difficulties in accessing services. They called for improved teacher training and publicly funded diagnostic assessment services.