Getting the timing right. Autistic adolescents reflect on the value of an early diagnosis

In Western countries, autism diagnoses are increasingly assigned in the first years of life. But is earlier necessarily better? Despite potential benefits, autistic infants and toddlers cannot participate in these discussions. In the ethical debate on early autism diagnosis, this raises tensions between parental duties and rights, and the child's developing autonomy.

To mend the lack of autistic voices in this debate, we queried a diverse group of 18 autistic adolescents (aged 16-18). In a set of indepth interviews, we explored their experiences of their autism diagnosis, and their views on the ideal timing of such a diagnosis, if at all.

Using the QUAGOL data-analysis method, we developed three themes: (1) (Not) feeling different, (2) Drawing up the balance of the label's value, and (3) Getting the timing right. Adolescents experiencing most difficulties in navigating the neurotypical world also seemed to value the diagnostic label most, and vice versa. Nevertheless, nearly all adolescents favored a relatively early diagnosis and early disclosure thereof-not necessarily in infancy, but early enough to enable timely support for both themselves and their parents. Crucially, adolescents emphasized that such early support should be personalized, readily available and neurodiversity-affirmative to make early diagnosis truly worthwhile.

Our data did not corroborate any presumed clash of interests between parents and autistic children. Consequently, we suggest moving this ethical debate away from a discourse based on individual rights or interests toward a relational, care ethics approach.