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 in-depth 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 four themes: (1) Describing autism by what it is not, (2) (Not) feeling different, (3) Drawing up the balance of the label’s value, and (4) Getting the timing right.Adolescents demonstrated critical consciousness in describing autism, resisting stereotypical views. Those experiencing most difficulties in navigating the neurotypical world also valued 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 truely 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 duties-and-rights-based discourse towards a relational approach.