The impact of childhood autism spectrum disorder on parent’s labour force participation: Can parents be expected to be able to re-join the labour force?

Abstract

Parental employment is a significant factor in ensuring financial ability to access care for children with autism spectrum disorder. This article aimed to identify the influence of autism spectrum disorder on parental employment and whether childcare access may effect labour force participation using the Longitudinal Survey of Australian Children, with 12 years of follow-up data (2004–2015). Parental employment when the child was aged between 0 and 11 years was assessed. A significantly larger percentage of parents whose children had autism spectrum disorder were not in the labour force when their child was aged between 2–3 and 10–11 years. However, between the ages of 2 and 5 years, these differences were not significant after accounting for maternal and paternal age, education attainment, marital status and mother labour force status prior to birth. Childcare access did not moderate the relationship between autism spectrum disorder and maternal labour force participation. Once children were of schooling age, mothers of children with autism spectrum disorder had up to two times the odds of being not in the labour force compared to other mothers, after adjusting for confounders. Evaluations of new interventions for children with autism spectrum disorder should consider how the proposed service impacts on the labour force participation of parents of children with autism spectrum disorder, particularly when the children are of schooling age.

Keywords

autism spectrum disorders economic costs

Introduction

The percentage of children identified with autism spectrum disorder (ASD) has been estimated to be between 1% and 2% in Asian and European countries and North America (Centres for Disease Control and Prevention (CDC), 2016a), with the percentage generally increasing over time (CDC, 2016b). In addition to the health burden, this increase in the number of children with ASD has also come with significant economic costs (Amendah et al., 2011; Knapp et al., 2009). Buescher et al. (2014) compared the costs of ASD in the United Kingdom and the United States, finding that the lifetime costs of supporting a child with ASD were in excess of US$1 million in both countries. The largest proportion of costs were attributed to special education services and lost parental productivity (Buescher et al., 2014). Other studies have also documented the lower labour force participation rates of parents (particularly mothers) of children with ASD (Cidav et al., 2012; McEvilly et al., 2015).

The labour force participation of parents is important as it gives the family the financial benefit of employment earnings. The costs of medical services for children with ASD have been documented to be relatively high (Croen et al., 2006, Liptak et al., 2006), and the cost of specialist care has been reported to be a reason for health service underutilisation for children with ASD (Chiri and Warfield, 2012) and for people with chronic disease in general (Callander et al., 2016). As such, parental labour force participation is a significant factor in ensuring access to care for children with ASD.

Within Australia, where prevalence rates of ASD in children are similar to other countries (Australian Institute of Health and Welfare (AIHW), 2012), there is a strong policy focus on encouraging parents to re-join the labour force as soon as they are able. Within Australia, the employment rate of women who have a child under the age of 6 years is less than 50%, which is 10 percentage points lower than the Organisation for Economic Co-operation and Development (OECD) average (Australian Bureau of Statistics, 2007a). In response, the Australian Government has given clear policy signals about its expectation of mothers to return to work, through a combination of explicit investment in childcare system strengthening, increasing childcare subsidies for working parents, and also welfare cuts once children are of school age (Australian Government, 2015; Department of Human Services, 2015).

However, it is known that those with ASD need extra day-to-day assistance (AIHW, 2012), and while previous studies have documented the lower rates of labour force participation among parents of children with ASD, none have looked at drivers of these lower labour force participation rates. It is hypothesised that children with ASD will have lower rates of childcare enrolment, due to their additional caring needs, and this may be driving labour force absence among parents of children with ASD in Australia. This study aims to:

Make a baseline assessment of the current impact of ASD on parental labour force participation across different child age groups, and determine whether these differences are explained by parental socioeconomic characteristics;

Determine whether children with ASD are less likely to access childcare, hence driving parental labour force absence (through lack of suitable childcare options) when children are at pre-schooling ages.

Methods

Dataset

The longitudinal survey, Growing Up in Australia: the Longitudinal Study of Australian Children (LSAC) (Australian Institute of Family Studies, 2015), was utilised in this study. It is conducted by the Department of Families, Housing, Community Services and Indigenous Affairs, the Australian Institute of Family Studies and the Australian Bureau of Statistics. LSAC collects information on children’s health, education and development from parents, carers, teachers and the children themselves, plus information on mother’s and father’s employment, income, health and parenting practices. Over 10,000 children and their families were recruited for the survey between March and November of 2004. Participants are interviewed every 2 years and mail-out questionnaires are sent to families in the year between interviews. Wave 6, containing data collected in 2014, is the latest wave to be released.

Two cohorts were initially recruited: the B-cohort, who were aged 0–1 year in 2004 (born March 2003–February 2004); and the K-cohort, who were aged 4–5 years in 2004. The focus of this study is on the B-cohort. Wave 6 contains information on the B-cohort at ages 10–11 years. This study uses information on the B-cohort between Waves 1 and 6.

ASD identification

In Waves 4, 5 and 6, parents completing the LSAC questionnaires for the study child were asked if the child has any of a set list of ongoing conditions, with ‘autism’ being one possible response option. Children whose parents stated that they have autism on this question in Wave 4, 5 or 6 were classified by the author of this study as ‘having been diagnosed with ASD’. Children whose parents did not state in Wave 4, 5 or 6 that their child has autism were classified as ‘not having been diagnosed with ASD’ for this study.

Labour force status

The LSAC asks mothers and fathers of the subject child about their current employment status, with response options being ‘employed’, ‘unemployed’ and ‘not in the labour force’. With the difference between unemployed and not in the labour force being that those who are ‘unemployed’ are actively seeking employment, whereas those who are ‘not in the labour force’ are not actively seeking employment (Australian Bureau of Statistics, 2007b). This study focused upon those who were ‘not in the labour force’.

Statistical analysis

Baseline demographic characteristics (at birth) of children diagnosed with ASD and those that had not been diagnosed with ASD were assessed. The percentage that were males, of Aboriginal or Torres Strait Islander (ATSI) decent, had parents who were married, had a mother who had completed year 12 and had a father who had completed year 12 was assessed, and chi-square tests were used to compare the difference in proportions between the two groups. The average number of people living in the household, average age of the mother and average age of the father was also assessed, and t-tests were used to compare the difference in means between the two groups.

In order to assess the differences in parental labour force participation, accounting for differences in socioeconomic status, a series of logistic regression models were constructed. This showed the likelihood of being not in the labour force for mothers and fathers who had a child who had been diagnosed with ASD, adjusting for confounding demographic socioeconomic factors: parent’s age, marital status, employment status prior to pregnancy and education attainment.¹ Parents whose child had not been diagnosed with ASD were used as the reference group.

In order to assess whether childcare access explained the difference in labour force participation rates between children with ASD and those without ASD, a logistic regression model of being not in the labour force for mothers who had a child who had been diagnosed with ASD, adjusting for parent’s age, marital status, employment status prior to pregnancy and education attainment was constructed. Childcare access was included as a confounding variable with ASD. Parents whose child had not been diagnosed with ASD were used as the reference group.

All analyses were undertaken using SAS9.4. Weighted results are reported unless otherwise stated.

No research on human subjects was conducted, and so ethics approval was not required. All research was conducted in accordance with the principles outlined in the Declaration of Helsinki.

Results

There were 198 records of children who had been diagnosed with ASD on Wave 6 of the LSAC, once weighted this represented 11,650 children born in Australia between March 2003 and February 2004 (4.8%). There were 4909 records of children who had not been diagnosed with ASD, which represented 231, and 350 children born between March 2003 and February 2004 (95.2%).

Table 1 shows the baseline, at birth, demographic and socioeconomic characteristics of children who had been diagnosed with ASD and those who had not. Of the children with ASD, 80% were males. Relative to those without ASD, a slightly lower proportion had parents who were married or in a relationship, their mothers and fathers were slightly younger, and a slightly higher proportion of the mothers had completed year 12.

Table 1.

Children’s socioeconomic characteristics at birth.

Child’s characteristics at birth	ASD	No ASD
Male, N (%)	9386 (80%)*	116,037 (50%)
ATSI status, N (%)	467 (4%)	9255 (4%)
Number of people in household, mean	3.9	4.1
Parent’s marital status married, N (%)	10,340 (89%)*	212,797 (92%)
Mothers age at birth, mean	29.7*	31.2
Fathers age at birth, mean	32.8*	34.2
Mother completed year 12, N (%)	7,112 (61%)*	136,655 (60%)
Father completed year 12, N (%)	5,977 (57%)	119,305 (57%)

ASD: autism spectrum disorder; ATSI: Aboriginal or Torres Strait Islander.

Significant at <0.01 level.

Table 2 shows the percentage of mothers and fathers who were not in the labour force from the time their child was aged 0–1 year through to the time they were aged 10–11 years. When children were aged 0–1 year, there was little difference in the percentage of mothers whose children had been diagnosed with ASD who were not in the labour force; however, there was up to a 20 percentage point difference (at age 8–9 years) after this. After age 2–3 years, a significantly higher percentage of fathers whose children had been diagnosed with ASD were not in the labour force; however, the difference was not as large as the difference in mothers’ employment status.

Table 2.

Labour force participation of parents of children who had, and had not, been diagnosed with ASD.

	Mothers		Fathers
	ASD	No ASD	ASD	No ASD
Child aged 0–1 year, number (%) NILF	5300 (46%)	108,400 (47%)*	200 (2%)	8100 (4%)*
Child aged 2–3 years, number (%) NILF	5300 (46%)	91,200 (40%)*	400 (5%)	8100 (4%)
Child aged 4–5 years, number (%) NILF	4900 (43%)	80,900 (35%)*	600 (6%)	9000 (4%)*
Child aged 6–7 years, number (%) NILF	4800 (41%)	61,200 (30%)*	700 (7%)	9300 (5%)*
Child aged 8–9 years, number (%) NILF	5100 (44%)	56,000 (24%)*	400 (4%)	10,000 (4%)
Child aged 10–11 years, number (%) NILF	4000 (34%)	47,000 (20%)*	700 (7%)	11,300 (5%)*

ASD: autism spectrum disorder; NILF: not in the labour force.

Significant at <0.01 level.

Table 3 shows the logistic regression model of the likelihood of being out of the labour force for mothers and fathers of a child with ASD compared to those whose child had never been diagnosed with ASD, at the time the child was 0–1, 2–3, 4–5, 6–7, 8–9 and 10–11 years. After adjusting for differences in mother’s age, education attainment, marital status and employment status prior to pregnancy, mothers who had a child who had been diagnosed with ASD were not significantly more likely to be out of the labour force when their child was aged 0–1, 2–3 and 4–5 years than mothers whose child had not been diagnosed with ASD (Table 3). For mothers of children in this age range, being not in the labour force prior to birth had the largest impact on the likelihood of labour force participation, followed by education attainment. However, at age 6–7, 8–9 and 10–11 years, mothers of children who had been diagnosed with ASD were significantly more likely to be not in the labour force than other mothers. At age 8–9 years, mothers of children with ASD were 2.5 times (95% confidence interval (CI): 1.70–3.66) more likely to be out of the labour force than other mothers, after adjusting for age, education attainment, marital status and labour force participation before birth.

Table 3.

Model of being not in the labour force for mothers and fathers of children aged 0–11 years.

	Child’s age (years)
	0–1	2–3	4–5	6–7	8–9	10–11
Mother
Model parameters for mother’s labour force participation β (SE)
Age	−0.03 (0.01)*	−0.04 (0.01)*	−0.03 (0.01)*	−0.04 (0.01)*	−0.05 (0.01)*	−0.04 (0.01)*
Education more than year 12	−0.59 (0.09)*	−0.35 (0.09)*	−0.44 (0.09)*	−0.44 (0.10)*	−0.45 (0.10)*	−0.60 (0.11)*
Married	−0.39 (0.20)*	−0.04 (0.17)	0.05 (0.15)	0.27 (0.14)	0.33 (0.15)*	0.17 (0.15)
Not in the labour force prior to birth	2.21 (0.12)*	1.46 (0.10)*	1.27 (0.10)*	0.95 (0.10)*	0.81 (0.11)*	0.66 (0.11)*
Autism	−0.13 (0.21)	0.21 (0.20)	0.27 (0.20)	0.45 (0.19)*	0.92 (0.20)*	0.72 (0.21)*
Odds ratio of the mother being not in the labour force, adjusting for mother’s age, education attainment, marital status, and whether they were employed prior to pregnancy
No ASD	REF	REF	REF	REF	REF	REF
ASD	0.88 p = 0.5468	1.24 p = 0.2907	1.31 p = 0.1692	1.57 (1.07–2.29) p = 0.0211	2.50 (1.70–3.66) p = < .0001	2.04 (1.36–3.07) p = 0.0006
Father
Model parameters for father’s labour force participation β (SE)
Age	0.08 (0.02)*	0.07 (0.02)*	0.05 (0.02)*	0.09 (0.02)*	0.08 (0.02)*	0.07 (0.02)*
Education more than year 12	−0.86 (0.23)*	−1.02 (0.25)*	−1.01 (0.24)*	−0.91 (0.23)*	−1.27 (0.24)*	−0.95 (0.22)*
Married	−3.64 (1.22)*	14.01 (0.18)*	1.46 (0.72)*	0.68 (0.52)	0.39 (0.45)	0.47 (0.37)
Autism	−0.57 (0.64)	0.30 (0.50)	0.49 (0.55)	0.56 (0.51)	0.18 (0.57)	0.51 (0.43)

ASD: autism spectrum disorder; SE: standard error.

Significant at <0.01 level.

After adjusting for differences in father’s age, education attainment and marital status, there was no significant difference in the likelihood of being out of the labour force for fathers whose child had and had not been diagnosed with ASD between the time the child was 0 and 11 years (Table 3).

Of the mothers who were not in the labour force, the most commonly cited reason – regardless of whether their child had been diagnosed with ASD – was to look after the child. When the child was aged 2–3 years, 84% of mothers whose child had been diagnosed with ASD stated that the reason they were not working was to look after the child, 88% cited this reason when the child was aged 4–5 years, 88% when the child was aged 6–7 years, 83% when the child was aged 8–9 years and 64% when the child was aged 10–11 years.

Table 4 shows the proportion of children with ASD who were attending childcare at age 0–1, 2–3 and 4–5 years. At age 0–1 year, an equal percentage of children with ASD and without ASD were attending childcare (36%). At ages 2–3 and 4–5 years, a significantly higher percentage of children with ASD were attending childcare.

Table 4.

Proportion of children accessing childcare who had, and had not, been diagnosed with ASD.

	ASD	No ASD
Accessing childcare at age 0–1 year, N (%)	4273 (36%)	83,260 (36%)
Accessing childcare at age 2–3 years, N (%)	8462 (73%)*	162,747 (70%)
Accessing childcare at age 4–5 years, N (%)	5,475 (47%)*	96,655 (42%)

ASD: autism spectrum disorder.

Significant at the <0.01 level.

Table 5 shows the logistic regression model of the likelihood of being out of the labour force for mothers of a child with ASD compared to those whose child had never been diagnosed with ASD, at the time the child was 0–1, 2–3 and 4–5 years, adjusting for mother’s age, education attainment, marital status, employment status prior to pregnancy, and including childcare access as an interaction term with ASD. There was no significant difference in the likelihood of mothers being not in the labour force depending on whether or not their child had been diagnosed with ASD, and this was consistent across childcare groups (Table 5).

Table 5.

Model of being not in the labour force for mothers of children aged 0–5 years, including childcare access as a confounding variable.

	Child’s age (years)
	0–1	2–3	4–5
Model parameters for mother’s labour force participation β (SE)
Age	−0.03 (0.01)*	−0.04 (0.01)*	−0.04 (0.10)*
Education	−0.53 (0.10)*	−0.26 (0.10)*	−0.40 (0.10)*
Marital status	−0.53 (0.20)*	−0.37 (0.17)	−0.20 (0.16)
Employed prior	2.07 (0.13)*	1.30 (0.11)*	1.16 (0.10)*
Autism	−0.24 (0.26)	0.43 (0.41)	0.31 (0.25)
Childcare access	−1.71 (0.10)*	−1.63 (0.11)*	−1.44 (0.10)*
Childcare × autism	0.31 (0.42)	−0.25 (0.47)	0.13 (0.42)

SE: standard error.

Significant at <0.01 level.

Table 6 shows a list of healthcare and development services used for the study child between the age of 6 and 11 years, stratified by whether the child had been diagnosed with ASD. A larger proportion of children with ASD accessed paediatrician, outpatient, general practitioner (GP), other child services, early education, speech therapist, other psychology or behavioural service, and other medical or specialist services at each age than children who had not been diagnosed with ASD.

Table 6.

Services utilised by children at different ages in the past 12 months.

	6–7 years		8–9 years		10–11 years
	ASD (%)	No ASD (%)	ASD (%)	No ASD (%)	ASD (%)	No ASD (%)
Paediatrician	54	6*	54	6*	53	7*
Outpatient	13	5*	16	5*	10	6*
GP	85	74*	81	67*	73	66*
Other child services	19	3*	25	3*	23	3*
Early education	13	4*	NA	NA	NA	NA
Speech therapist	45	8*	34	4*	24	3*
Other psychology or behavioural service	44	5*	39	8*	28	9*
Other medical or specialist service	41	27*	39	27*	40	29*

ASD: autism spectrum disorder; GP: general practitioner; NA: not applicable.

Significant at the <0.01 level.

Discussion

A greater proportion of mothers with children who have ASD in Australia are not working than those whose children do not have ASD. This is consistent with the findings of other international studies which have documented the lower labour force participation rates of parents of children with ASD (Buescher et al., 2014; Cidav et al., 2012; McEvilly et al., 2015); however, this is the first study to do so for Australia. While these other international studies have demonstrated the financial burden, this can place on families, on top of the additional out of pocket expenses associated with children’s healthcare, none have gone onto explore the potential drivers of labour force absence.

This study found that the differences in labour force participation rates of mothers and fathers of children with ASD under the age of 6 years were accounted for by socioeconomic factors. Contrary to our hypothesis, among children whose mothers were not working, children with ASD were more likely to be accessing childcare, and childcare access did not affect the relationship between ASD and the labour force participation of mothers. This indicates that a lack of access to childcare was not driving maternal labour force absence for children under 6 years with ASD in Australia. Instead, childcare access appears to predict being out of the labour force for mothers regardless of whether they have a child with ASD or not.

The study also found that once children were of schooling age (6 years and over), maternal socioeconomic differences no longer accounted for the lower rates of labour force participation. Mothers of children with ASD were up to twice as likely to be out of the labour force regardless of socioeconomic status. Policy and economic signals which penalise parents for not participating in the labour force once their child reaches school age may unfairly impact parents whose child has ASD. Within Australia, families are no longer eligible to receive family welfare payments from the time their child turns 6 years of age (Department of Human Services, 2015), as it is expected that parents return to work once their child commences school. However, the results of this study have demonstrated that the additional caring time requirements of children with ASD may not diminish when the child commences school at age 5 or 6 years. Indeed, half of all people (of all ages) with ASD require assistance with daily activities, education activities or employment activities (AIHW, 2012), and as such the need for parental care may not diminish over time.

The most common reason for not working cited by mothers of children with ASD was the need to care for their children. The results of this study have also shown that over the age of 6 years, a higher percentage of children with ASD are accessing paediatricians, outpatient services, GPs, speech therapists, early childhood programmes and other child services. Given the myriad of services now available to support children with ASD, it may be that this is driving rates of labour force absence among parents of older children – the burden of negotiating the care system and accessing care providers operating in silos may lead to the need for parents to leave the labour force to ensure their child has access to these services, and this does not diminish once children are of school age. Other studies have highlighted the significant amount of expenditure associated with accessing healthcare services for children with ASD (Lavelle et al., 2014; Peacock et al., 2012; Shimabukuro et al., 2008) and the diversity of services accessed by children with ASD (Croen et al., 2006; Liptak et al., 2006). However, the opportunity cost placed upon parents, in terms of forgoing labour force participation, is not taken into consideration.

This study has demonstrated how imperative it is for researchers looking at evaluating the potential of new interventions or treatments for children with ASD to consider how the proposed service benefits the families of children with ASD, including the impact on parental labour force participation. This impact of ASD on maternal labour force participation was most pronounced over the age of 6 years, and continued through to the age of 11 years, indicating the need for long-term follow-up to capture ongoing benefits of ASD treatment.

Supplementary Material

Supplementary Material, AUT688331_Lay_Abstract – The impact of childhood autism spectrum disorder on parent’s labour force participation: Can parents be expected to be able to re-join the labour force?

Supplementary Material, AUT688331_Lay_Abstract for The impact of childhood autism spectrum disorder on parent’s labour force participation: Can parents be expected to be able to re-join the labour force? by Emily J Callander and Daniel B Lindsay in Autism

Footnotes

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

Notes

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Supplementary Material

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