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

Abstract

Purpose This study reported the experiences of New Zealand caregivers of children with language and literacy difficulties in having their child’s needs identified. Method The 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 Māori and 12 New Zealand European. Data were collected through semi-structured interviews. A phenomenological approach using reflexive thematic analysis was used. Result These 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 Māori 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. Conclusion These mothers wanted improved teacher training and publicly funded diagnostic assessment services to improve access to best practice language and literacy instruction for their children.