Importance Few studies have examined the curtailment of reproduction (ie, stoppage) after the diagnosis of a child with autism spectrum disorder (ASD).
Objective To examine stoppage in a large, population-based cohort of families in which a child has received a diagnosis of ASD.
Design, Setting, and Participants Individuals with ASD born from January 1, 1990, through December 31, 2003, were identified in the California Department of Developmental Services records, which were then linked to state birth certificates to identify full sibs and half-sibs and to obtain information on birth order and demographics. A total of 19 710 case families in which the first birth occurred within the study period was identified. These families included 39 361 individuals (sibs and half-sibs). Control individuals were randomly sampled from birth certificates and matched 2:1 to cases by sex, birth year, and maternal age, self-reported race/ethnicity, and county of birth after removal of children receiving services from the California Department of Developmental Services. Using similar linkage methods as for case families, 36 215 pure control families (including 75 724 total individuals) were identified that had no individuals with an ASD diagnosis.
Exposures History of affected children.
Main Outcomes and Measures Stoppage was investigated by comparing the reproductive behaviors of parents after the birth of a child with ASD vs an unaffected child using a survival analysis framework for time to next birth and adjusting for demographic variables.
Results For the first few years after the birth of a child with ASD, the parents’ reproductive behavior was similar to that of control parents. However, birth rates differed in subsequent years; overall, families whose first child had ASD had a second child at a rate of 0.668 (95% CI, 0.635-0.701) that of control families, adjusted for birth year, birth weight, maternal age, and self-reported maternal race/ethnicity. Results were similar when a later-born child was the first affected child in the family. Reproductive curtailment was slightly stronger among women who changed partners (relative rate for second-born children, 0.553 [95% CI, 0.498-0.614]).
Conclusions and Relevance These results provide the first quantitative assessment and convincing statistical evidence of reproductive stoppage related to ASD. These findings have implications for recurrence risk estimation and genetic counseling.Shaun Heasley writes at Disability Scoop:
The finding that many families choose to stop having children after learning that their son or daughter is on the spectrum may mean that current estimates on the odds of having a second child with autism could be unreasonably low, researchers said.
When reproductive stoppage was taken into account, the study found that the odds of having a second child with autism rose to 10.1 percent for full siblings, an increase over the 8.7 percent estimate found when families who stop having children are not factored in.
The study did not examine why parents of children with autism are more likely to stop having kids, but researchers said it could be due to concerns about having another child with the disorder or that parents feel they are unable to care for additional children after having one on the spectrum already.