The untold perspective: Parents' experiences of the autism spectrum disorder assessment process when the child did not receive a diagnosis.
Parents need clear next-step guidance after any autism assessment, whether the answer is yes, no, or maybe.
01Research in Context
What this study did
Bendik et al. (2021) talked to parents whose kids did not get an autism diagnosis.
They used interviews to learn how parents felt during and after the assessment.
The team wanted to understand the emotional journey when the answer is "no diagnosis."
What they found
Parents felt three big things: confusion about what the results meant, relief that autism was ruled out, and worry about what to do next.
Many parents still had questions about their child's future even after the assessment ended.
The whole process felt like an emotional rollercoaster rather than a clear medical test.
How this fits with other research
Huang et al. (2020) found similar emotional chaos in adults seeking autism diagnosis, showing this isn't just a child issue.
Lineberry et al. (2023) revealed that even when adults DO get diagnosed, over a large share still get zero follow-up support - extending the same "what now?" problem.
Jackson et al. (2025) showed adults actually liked autism assessments when done with a strengths focus, suggesting the negative feelings in Lesley-Anne's study might stem from how we deliver results, not the assessment itself.
Krafft et al. (2019) found parents of diagnosed youth also felt lost about next steps, proving unclear guidance affects all parents regardless of diagnosis outcome.
Why it matters
When you tell parents "no autism diagnosis," you're not done. Give them a written summary in plain language. List specific next steps like "try speech therapy for language delays" or "see an occupational therapist for sensory issues." This simple act can turn confusion into action and reduce parent stress.
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02At a glance
03Original abstract
Autism is diagnosed by a process of child assessment and parental interview. It has been well-documented by parents of children who received a diagnosis of autism, that the process can be lengthy and cause distress for families. Nevertheless, the outcome often compensated for the difficult assessment journey as it enables families to gain access to further information, support and intervention. However, less is known about the assessment process from parents who undertake the same process but at the end are told their child does not meet the diagnostic criteria, meaning no diagnosis is given. We interviewed six parents in North Wales, whose child did not receive a diagnostic of autism following an assessment. During the interview, parents were asked about their experience of the autism assessment process. We found that parents reflected on their experience according to three themes: (1) parents tried to navigate how they could make sense of their child being different despite not receiving a diagnosis; (2) parents referred to the assessment process as a journey, which encompassed many emotional and psychological components and (3) parents discussed what it was like to hear a non-diagnosis outcome, in terms of feeling relieved, confused and raising questions for the child's future. These findings are important for professionals working in autism assessment services to help improve the assessment process for families, particularly when the assessment does not result in a diagnosis.
Autism : the international journal of research and practice, 2021 · doi:10.1177/13623613211003741