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New research by the charity Ambitious about Autism has found that families navigating the autism assessment and diagnosis process describe it as ‘lonely’, ‘brutal’ and ‘painful’.
A third of parents and carers report that their experience of the autism assessment and diagnosis process has been negative, and nearly two thirds describe the support they received after their child’s autism diagnosis as ‘poor’ or ‘awful’.
In a survey examining the experiences of parents and carers who sought an autism assessment for their child, nearly 80% did so to support their mental health and wellbeing and to help them access the right support and services.
However, they faced a range of challenges in accessing the system, including long wait times, extensive paperwork, and limited support after diagnosis. The research also found that more than 1 in 10 families are waiting four years or more for a diagnosis.
Increasing demands for autism assessment
An independent review, commissioned by the Government, is examining the rising demand for autism and ADHD assessments. Nearly 800 parents responded to the survey, and the results will be shared with the review as evidence.
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Chief Executive of Ambitious about Autism, Jolanta Lasota, said: “Much of the current discourse around the autism assessment system seems to be placing blame on parents for seeking answers to the challenges their children face.
“Our research reveals that parents do not enter the assessment process lightly. They tell us the path to diagnosis is fraught with difficulties, delays and frustrations – not a situation anyone would wish to find themselves in. Often parents enter the assessment process after there has been a significant deterioration in their child’s mental health.
“We want to shift the focus to how we can create a system where children and young people can access timely diagnosis receive help and support before, during and after their diagnostic journey. We also want to see autistic young people provided with more proactive support from education and mental health services to prevent them from reaching a crisis point.”
The research was conducted by Ambitious about Autism, with support from the Autism Centre for Education and Research (ACER) at the University of Birmingham.
