This project has been supported by the Community Foundation for Northern Ireland through the Partners for Social Care and Health Improvement Fund. We conducted a research and advocacy project to understand the experiences of parents of children with diagnosed or suspected Autism Spectrum Disorder (ASD) in relation to their child’s diagnosis, care needs, educational access and their own personal wellbeing.
Recent figures suggest that parents of neurodiverse children are struggling in a range of ways. Securing an appropriate school placement can be a challenge due to high demands and lack of resources, and these placements may only be secured through a diagnosis which can have significant delays. Parents can also struggle to access care support and additional services due to factors such as travel distance and high service demand.
We conducted a mixed-methods research project, collecting both online survey data and conducting interviews, focus groups and consultations with both parents of children with diagnosed or suspected ASD and service providers. We asked questions relating to their child’s diagnostic journey, care access, school access, and the parent’s own wellbeing.
Over half of parents waited at least three years from referral for their child’s diagnosis, with almost three quarters of parents feeling unsatisfied with this wait time. Nearly a quarter of parents paid for private assessments for their child with an average cost of over £2,000 per parent; some parents required loans to cover these costs. 81% of children with a diagnosis did not gain access to additional support following their diagnosis. Parents reported struggles with the diagnostic process such as not being referred for an assessment and parents not being listened to about their child’s symptoms.
Nearly three quarters of children in mainstream school did not have a classroom assistant due to a lack of resources and funding within the school. Several parents reported how their child would struggle in school as they would sit unsupported in silence as resources were dedicated to managing disruptive behaviour. Satisfaction with school support was lowest within mainstream schools (28%) and highest within special schools (90%). Only 14% of parents could confirm that their child’s teacher had completed Autism Awareness Training, with parents feeling that teachers’ understanding of ASD varied too greatly. Parents described how their child was bullied and ostracised in school and how this could harm the child's mental wellbeing.
83% of parents did not have access to ASD-friendly support resources within their community and would cite distance, lack of transport and lack of childminding as barriers to accessing support. Parents would rely on charity and voluntary support, but funding cuts had reduced the support they receive and would even lead to parents giving up their career to care for their child. The abundance of challenges experienced by parents combined with lack of support resulted in a very high percentage of parents often feeling overwhelmed, anxious and unable to take a break for themselves.
From these findings we have created a list of recommendations on how best to support children with diagnosed or suspected ASD and their parents. These recommendations include: increased use of Autism Awareness Training; improved understanding of neurodiversity in schools; support for more age groups; increased and extended support for the voluntary sector; more child-centered assessments; support and resources for parental wellbeing; improved understanding of gender differences in neurodiversity; and improved understanding of masking.
To read the full report, please click here.
To review a summary infographic of findings, please click here.