When Should Parents Tell Their Kids They Have Autism?
Autistic university students share their guidance in a new study co-authored with faculty researchers.
When parents first learn that their child is autistic, they face the daunting dilemma of when to tell the child about the diagnosis. Worries about stigma and mental health might make a parent want to hold off for a while.
“It is okay to have hesitations about telling your autistic child about their diagnosis earlier in life,” said Bella Kofner, an autistic master’s student studying special education for grades seven through 12 at the College of Staten Island. “Parents want their children to be happy, loved, and supported.”
Kofner is a co-author of a new study that suggests that although these concerns are well-intentioned, it’s better to tell a child their autism diagnosis sooner rather than later.
The study, published in the journal Autism, surveyed 78 autistic university students about how and when they learned about their diagnosis, their feelings about it, and their recommendations for revealing diagnoses to children.
In general, study participants who learned they were autistic at a younger age reported greater well-being and scored higher on a measure of autism-specific quality of life. The respondents described how building self-understanding and compassion, finding autistic allies, and getting support are benefits of learning that one is autistic.
Learning one’s diagnosis at a later age was associated with more positive feelings at first, but this was mostly due to feelings of relief. The benefits of learning a diagnosis at a younger age outweigh these short-term feelings, especially because far more resources have historically been dedicated to the identification and support of autistic toddlers and children than adults, said co-author Ariana Riccio, who completed her Ph.D. in Psychology at the Graduate Center in 2020 and is now a senior research associate at Education Development Center.
“While these are very important areas to fund and understand, there is a population of autistic adolescents and adults who are under-supported and who age out of available options,” Riccio said. “We are behind on meeting these needs.”
That’s not to say the decision of when to tell a child is an easy one. The survey participants highlighted the complexity of emotions around an autism diagnosis, and only a quarter of them recommended a specific age.
“In terms of factors to consider when deciding when to tell a child, participants focused on the child's developmental level, support needs, curiosity, and personality,” said Professor Kristen Gillespie-Lynch (GC/Staten Island, Psychology), a co-author on the study. No participants recommended waiting until adulthood.
Kofner advised parents to remember that even though there are benefits to telling a child their diagnosis at a younger age, everyone’s reaction to learning they are autistic is different.
“When you decide to tell your child about their autism, encourage your child to be themselves so that they can embrace their autism identity,” Kofner said. “Tell your child about their autism diagnosis in words that they can understand and that you are there for them no matter what they go through as autistic individuals in life.”
Published by the Office of Communications and Marketing