Exploring the Experiences of Parents Whose Child has Received a Diagnosis of Autistic Spectrum Disorder in Adulthood.
Hannah Legg, Anna Tickle, Alinda Gillott and 1 others
PMID 34997881WHAT IT FOUND
Parents of adults newly diagnosed with autism often felt relief and guilt.
The diagnosis helped many reinterpret past behaviour, and some parents described closer relationships, but lack of post-diagnostic support left them frustrated and unsure how to help.
Key findings
01Parents described a range of emotional reactions, including relief, guilt, and feeling incompetent for not recognising the possibility of ASD.
02Almost half of the parents reconsidered their attributions and changed their behaviour and emotional reactions after the diagnosis.
03Over half of the parents identified emotional and relational support as their most significant need, and other parents wanted expert guidance, reliable information, and signposting.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The parents were self-selected and likely remained involved in their adult child's life, so the findings may not represent parents who are less involved. The sample was small and narrow: 11 parents, 2 fathers, 1 parent of a daughter, and 2 parents from ethnic backgrounds other than White British. The interviews relied on parents' recall after a recent diagnosis, and the adult children and spouses were not interviewed, so relationship changes were not verified. Parenting self-efficacy was not measured, so feelings of being de-skilled cannot be treated as a measured outcome.
The easy way to misread this
Do not read the reported improvements in understanding and relationships as evidence that adult diagnosis changes family outcomes. This was a small interview study of 11 parents, and it describes their experiences rather than measuring effects.