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SPARK Research Match Summary Report: The Effect on Parents of Getting a Genetic Diagnosis for Their Child With Autism
Date Published: May 29, 2024
This is a SPARK Research Match Summary Report. It describes results from newly published research using data from SPARK participants.
Study title
Impact of a Genetic Diagnosis for a Child’s Autism on Parental Perceptions
What was the study about?
Researchers surveyed parents who learned that testing showed their children’s autism was caused by a genetic condition, along with parents who found out that testing did not find a genetic cause of their child’s autism. The researchers wanted to learn if getting a genetic diagnosis affected the way parents saw themselves, their child, and the future.
How was the research done?
Almost 850 parents of children and dependent adults in the SPARK study completed online surveys one month before receiving the results of their child’s genetic test, one month after getting the results, and one year later. SPARK informed 148 parents that their child had a genetic cause of their autism. Almost 700 parents learned that SPARK had not found a known genetic cause of their children’s autism, so far. The average age of the autistic participants was 12.
Change in Parents’ Perceived Cause of Child’s Autism One Month After Getting Genetic Test Results1
What did the researchers learn?
- Both groups of parents had similar views about the causes of autism before they learned their children’s genetic test results.1
- After getting a genetic diagnosis, parents were less likely to say that their child’s autism was caused by their age, pregnancy and birth complications, and vaccines. They were more likely to say that autism was the result of chance. Their children had genetic variants that were not inherited from them.
- A year after receiving a genetic diagnosis, parents of children younger than 22 had somewhat lower expectations for their child’s future. They were a little less likely to say that their children would have romantic relationships, have children of their own, and support themselves financially.
- The genetic diagnosis did not affect parents’ self-esteem, optimism, and belief in their ability to reach goals. It also did not significantly change most parents’ views of their child. Some parents said that they were more patient with their children knowing that some behaviors were outside their control.
- Families who learned that their child did not have a known genetic condition saw little or no change in their beliefs about autism’s cause and their future expectations for their children after a year.
What was new and innovative about the study?
This study used online surveys that were taken at different times, along with interviews, to measure the effect of a genetic diagnosis on parents. Researchers interviewed 32 of the 148 parents whose children had genetic conditions.
What do the findings mean?
Getting a genetic diagnosis had a relatively small effect on parents as a whole. Overall, parents had less feelings of guilt and self-blame about their child’s autism than they had before their child’s genetic diagnosis.
What are people saying?
Study Participants:
- “So thankful that I found SPARK. It was such a surprise to get an email several years after we enrolled, that they had found a cause of our [child’s] autism. Definitely gave my [spouse] and I a sense of relief. Thank you for all of the work you do!”
- “This was a very good experience and I am so honored we were able to participate. Autism has been a very lonely journey. But being part of something that can help others understand their paths was indeed a highlight….”
- “Genetics have not played a role in us learning about the origins or type of autism [my child] has. I believe it may someday help others, but thus far nothing for us.”
Study Researcher Julia Wynn, M.S., certified genetic counselor:
“For the most part, we don’t see getting a genetic diagnosis as having a large impact on a family, parents’ identity, and their perception of their child. They know their child for who their child is, and our hope for this testing is that it will provide more information about how to best care for their child.”
What’s next?
Researchers are interested in studying the effect of having a genetic diagnosis on autistic youth and adults who receive the diagnosis.
References
- Wynn J. et al. J. Autism Dev. Disord. Epub ahead of print (2024) 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.