In this population based study, taking possible confounders into account, we found that parents of children with ASD, especially mothers, were on sick leave more often and participated less in work compared to parents of children without ASD. The findings occur despite the fact that Sweden provides extra compensatory measures of support to parents of children with disabilities in order to enable their successful participation in the work force and a healthy life. Differences between parents with and without a child with ASD remain after accounting for educational level, being a lone parent, and receiving social assistance. When stratifying parents with ASD child into ASD with or without ID some differences are found. Increased sick leave (15–365 days) is associated with parents of children with ASD without ID but not ASD with ID. Increased long term sick leave (over one year) is more strongly associated with mothers of children with ASD without ID and, in contrast, fathers to children with ASD with ID. Parents with a child with ASD with ID are more likely to be outside of the labor force or have low income than parents with a child with ASD without ID, but this difference is weaker in the final model.
Parents who have a child with ASD are more likely to experience stress, depression, and fatigue. Therefore it is not surprising that these parents take sick leave more frequently or participate less in the work force. However, it is interesting to see that differences remain in Sweden where there is universal health care and children and families with disabilities are entitled to extra help, help that is meant to allow all families to have similar conditions. It is also interesting to consider why parents with children who have ASD without ID are more likely to be on sick leave (15–365 days) than parents with a child with ASD with ID. A possible explanation might be that these parents experience a higher level of burden. Jones et al. have suggested that parental anxiety might be higher when a child has ASD with a higher level of adaptive functioning since that child is likely to live more independently than a child with ASD with a lower level of functioning, exposing them to dangers (Jones et al. 2013). Parental anxiety might lead to sleep deprivation or missed work. Another explanation is that children with ASD without ID are more likely to suffer from comorbid anxiety and depression (Mayes et al. 2011) than children with ASD with ID, which affects not only the child but the entire family. Finally, another reason could be that families with a child with ASD without ID might not get adequate help. Societal help in Sweden is given based on the individual child’s need but in Olsson and Hwang’s Swedish study on children with three different types of ID (Down’s syndrome, ASD with ID, and other ID) they found that more familial financial support (care allowance) was given to children with DS even though they had less needs than the children with ID or ASD with ID (Olsson and Hwang 2003); it might be more difficult to get help for a child who has a disability that is not visible or a disability which is varied (for example a child who is gifted in some areas and behind in other areas).
Strengths and Limitations
The main strength of the study is that it was based on a cohort containing the total population of children 0–17 years living in Stockholm sometime between 2001 and 2007 and that Sweden has high quality registers (Allebeck 2009) enabling us to identify parents for the study using record linkage. Additional strengths are that Sweden has universal health care which increases the likelihood that ASD cases are detected (Idring et al. 2012), and that the ASD cases in the study are validated (see “Methods”). Finally, because the study looks at sick leave that exceeds two weeks it is unlikely that sick leave goes unreported. People with flexible jobs might not report when they are sick if they can make up missed work on weekends or other times, but this would be hard to maintain for sickness lasting two weeks. Also, in order to be on sick leave a doctor’s certificate is required and a person on sick leave must continually return to the doctor to get their sick leave extended. Once deemed fit to work the person is required to return to or look for work, which means that parents in the study are not “choosing” to be on sick leave. Additionally, people on social benefits are required to do activities to help them reenter the work force which makes it less likely that parents “choose” to be receiving social benefits.
Despite the strengths, there are several limitations with our study which should be noted. Although we controlled for parental psychiatric care before birth of first child we believe residual confounding might occur if parents have psychiatric problems and have not sought psychiatric care. Psychiatric illness proceeding parenthood results in the problem of reverse causality preventing us from distinguishing between the parent’s condition and the effect of parenting a child with ASD. Another limitation is that despite universal health care cases of ASD in the Stockholm population may go undetected, especially among children with ASD without ID, which may lead to misclassification: parents with a child with an undetected ASD classified as not having a child with ASD will result in weakened associations. Additionally, selection bias might occur since we exclude 11,586 mother/fathers because one or both of them have children with another partner, keeping only the “first” family, in order to prevent parents from being counted more than once. Since the likelihood of having a child with ASD increases with age (Croen et al. 2007), and since these parents are likely to be older, we may have selected a larger number of parents who did not have a child with ASD than if we had instead chosen to keep the most recent family. However, there is no reason to believe that this group differs regarding the outcomes.
To make the comparison group representative of the Stockholm population we included parents with children with other disabilities. Some parents in the comparison group may have had children with other conditions which could have affected the four outcomes, possibly attenuating the results. It would have been interesting to compare parents who have children with other (non ASD) disabilities as well as to study comorbidities among the children with ASD (for example OCD, anxiety, and depression.). However, data for these other diagnoses were not readily available, but could perhaps be studied in the future.
Another limitation arises from the complicated nature of the outcomes. We do not know why people are sick or why they are not in the labor force. Not being employed will affect well-being in different ways depending on whether or not the person is willingly or unwillingly outside of the labor force. Also, while having an income below the 20th percentile very likely indicates part time work, we do not know how many hours parents work or if they work more hours but at a very low wage. Additionally, parents in well paid jobs may work part time but exceed the 20 %, thus for these reasons low income is a crude measure for work participation.
We controlled for a variety of possible confounders such as being born outside of Sweden, socioeconomic factors (level of education, single parent household, receiving social assistance), and parental psychiatric contact. However, there are many other factors which can contribute and are not covered in the scope of this study that might be better suited for a qualitative study.
In conclusion, this study found that being a parent of a child with ASD is associated with higher maternal and paternal sick leave and lower work participation. The study found that ASD without ID but not ASD with ID was associated with sick leave lasting 15–365 days, but that both ASD with and without ID were associated with long term sick leave, not being in the labor force and low income. The findings are of particular interest because they appear in a society that has developed many policies to support parents with children with disabilities. In such a society it might be expected that these parents have comparable levels of sick leave, being in the work force, and income. However our findings suggest that despite Swedish policies aimed at helping families of children with ASD, both with well-being and with ability to work, that these parents remain a vulnerable group for which additional support might be warranted. It can also be noted that being on sick leave, outside of the work force or earning a low income will have long reaching impact on these parents because of Sweden’s pension system which is based on an individual’s life time earnings. It is recommended that further studies be done to see what support mothers and fathers would find most beneficial and what support they are lacking.