Date Published: May 13, 2025

This is a SPARK Research Match Summary Report. It describes results from newly published research using data from SPARK participants.

Study title

Parents’ Early Concerns about Their Child with Autism: Relation to Age of Diagnosis

What was the study about?

Many parents become concerned about their autistic child’s development between ages 1 and 2, but children are often not diagnosed until ages 3 to 5. Researchers wanted to find out what types of concerns by parents are linked to an earlier or later diagnosis.

How was the research done?

The parents of 853 autistic children ages 2 through 5 completed an online survey. They answered questions about how old their child was when they became concerned about their child’s development, what concerned them first, what general concerns they had, and their child’s age at diagnosis. Most of the parents were participants in the SPARK study.

What did the researchers learn?

• The earlier a parent had concerns about their child’s development, the earlier the child was diagnosed. Children were diagnosed on average 14 months after parents’ first concerns.
• Several types of concerns were associated with an earlier diagnosis: poor eye contact, losing skills, delays in gesturing and pointing, limited emotional responses, or delayed or no response to their name.
• Children whose parents had a higher number of concerns about their development were more likely to be diagnosed later. That may be because doctors considered other possible diagnoses before settling on autism.
• The most common first concerns of parents were that children had delayed or unusual babbling and speech, no response or a delayed response to their name, lost developmental skills, stopped gaining new skills, and poor eye contact. More than half of the parents reported one of those five issues as their first concern.
• More than half the parents included “intense emotional reactions” as one of their general concerns. This concern was associated with a later age of autism diagnosis. Emotional issues are also part of other conditions, and “may send parents and/or pediatricians down the wrong diagnostic path,” the study said.¹

What was new and innovative about the study?

Unlike other studies that have used open-ended questions, this study asked parents to select from a checklist of developmental concerns. The checklist allowed researchers to categorize concerns in a standard way.

What do the findings mean?

Parents whose concerns were specific to autism tended to get an earlier diagnosis for their children. A better understanding of parents’ concerns may lead to earlier diagnoses and interventions for children.

What are people saying?

Study participants:

• “This survey helped me validate some of the things I’ve been concerned about with my child and I’ll be bringing it up with their pediatrician!”
• “It was nice to put some of these aspects into measurable terms. Each survey is enlightening and affirming to me as a parent of a neurodiverse child as it helps me articulate some of the issues that we experience to doctors, therapists, and others.”
• “I have never considered participating in a study prior about autism and have personal time restrictions, which exclude me from my input, but this one seemed doable enough to do on my lunch hour today.”

Study researcher Jessie B. Northrup, Ph.D., assistant professor, University of Pittsburgh School of Medicine:

• “This type of research can help inform pediatricians about what kinds of developmental milestones it might be important to be talking to parents about.”

Study researcher Madison Leach, B.S.:

• “Parents often take the first step to seek help, so understanding development from the parents’ perspective is crucial in research.”

What’s next?

A future study could examine parents’ concerns before their children are diagnosed with autism and compare them to the concerns of parents whose children do not get an autism diagnosis, the researchers say.

References

1. Leach M. et al. J. Autism Dev. Disord. Epub ahead of print (2025) PubMed

About SPARK Research Match

This SPARK Program matches participants with research studies that they may want to join. These studies have been evaluated for scientific merit and approved by a scientific committee at SPARK. The program is free to researchers and participants. SPARK does not endorse or conduct these studies. Participants choose if they want to take part in a particular study.