The impact of school challenges on parental employment among families with children on the autism spectrum

Abstract

Families raising children on the autism spectrum often experience financial pressures, including lower incomes linked to reduced parental employment participation. Although the literature identifies many school challenges for children on the autism spectrum and their families, the evidence analysing the impact of school challenges on parental employment is sparse. This paper presents findings from in-depth interviews conducted with 19 families living in England, Scotland and Wales to explore their perspectives on the impact of school on parental paid employment. School support and staff understanding can be critical for children on the autism spectrum and their families. Lacking school support was found to contribute to eventual formal and informal school exclusions as well as child school refusal. These manifestations of unmet school needs meant that parents frequently experienced employment interruptions, exacerbating both financial pressures (the risk of losing work pay) and temporal pressures (for example, making up for lost working time).

Point of interest

• Families with children on the autism spectrum often experience financial pressures and tend to earn less.

• It is known that children on the autism spectrum encounter school challenges, but these challenges have not been explored within the context of parents’ engagement in paid employment.

• The study finds that formal and informal school exclusion (including permanent exclusion periods and occasions of the child being sent home early from school) impact parental employment.

• The study also finds that child school refusal (the reluctance from the child to attend school) is another way that school-related challenges impact parental employment.

• Child school refusal and child behaviours which may lead to formal and informal school exclusions are identified as consequences of lacking school support, understanding and flexibility.

Keywords:

• School
• parental employment
• autism spectrum
• school refusal
• exclusion

Introduction

Families raising children on the autism spectrum face financial pressures, including lower incomes linked to reduced parental employment participation (Buescher et al. 2014; Ganz 2007; Järbrink, Fombonne, and Knapp 2003; Roddy and O’Neill 2019). They share these experiences with many families with disabled children, where parents are far less likely to be in paid work (Buckner and Yeandle 2006, 2017; Giri et al. 2022). In a scoping review exploring the occupational participation of parents raising children on the autism spectrum, it was highlighted that parents ‘felt restricted in their personal, social and professional functioning’, and paid employment in particular was found to be significantly impacted (Davy et al. 2022, 4; see also Dieleman et al. 2018). Studies examining employment patterns show that parents (especially mothers) of children on the autism spectrum are more likely than other parents to take sick leave (McEvilly, Wicks, and Dalman 2015), they are less likely to be in paid employment (Callander and Lindsay 2018; McCall and Starr 2018; McEvilly, Wicks, and Dalman 2015), and they earn less (Cidav, Marcus, and Mandell 2012; McEvilly, Wicks, and Dalman 2015). To understand why parents of children on the autism spectrum reduce or forego paid employment, research has pointed to the intensity of informal care work. Järbrink, Fombonne, and Knapp (2003) estimated that parents spent up to 60 hours per week caring for their child. Callander and Lindsay (2018) reported that informal care work was the most common reason given by mothers for exiting paid employment.

Several studies have explored factors broader than the child and their care needs to explain the employment engagement of parents raising children on the autism spectrum. For example, it has been found that workplace factors, such as the availability of flexible working hours and medical leave and the level of understanding from colleagues and employers, influence parents’ engagement in paid work (Baker and Drapela 2010; Hill et al. 2015). The availability of appropriate childcare for children on the autism spectrum has also been found to influence parents’ ability to access work (Hill et al. 2015). Families’ service engagement also bears an influence on parents’ work participation. Callander and Lindsay (2018) identified the navigation of services as a possible explanation for employment absence among parents of children on the autism spectrum, showing that children could be accessing numerous services from age six. In particular, disjointed and discontinued services have been found to significantly disrupt the employment of parents (and especially mothers) who exit paid work to navigate services ‘operating in silos’ (Callander and Lindsay 2018, 547; see also Hodgetts et al. 2014).

This paper expands the knowledge of societal factors, examining a specifically under-researched area but one which is crucial to families with children on the autism spectrum: the connection between school practices and the employment decisions of parents. Local authorities across the UK are responsible for allocating school placements, and under the Education Act (1981) all children are to be placed into a mainstream school whenever possible. More than 70% of children on the autism spectrum in England are in mainstream schools (Department for Education 2022). According to the Education Act of 1993, children on the autism spectrum may need additional support if they are deemed unable to access educational facilities usually available for children of the same age; in Wales, children can be identified as having Additional Learning Needs (ALN), in Scotland Additional Support for Learning (ASL) needs, and in England Special Educational Needs (SEN). Schools and Local Authorities may offer, or families may request, an education plan to outline the types of needs a child has, and what provisions can be put in place to support those needs, but the contents and weight of education plans differ. For example, an Education, Health and Care Plan (EHCP) in England secures additional funding and legally requires schools and local authorities to support the needs of children on the autism spectrum, while an Individual Education Plan (IEP) does not. Models across the UK also differ. For example, in Wales a new model effective from 2024 stipulates that all children identified with ALN are entitled to receive a plan of provision regardless of severity, while children in England are only eligible for an EHCP if they are considered to have severe or complex needs.

Yet, the implementation of education policies has proved lacking and a gap between inclusive rhetoric and inclusive practice for disabled children has been observed, not only in the UK but also around the world (Karisa, McKenzie, and De Villiers 2020; Reeves et al. 2022). In England, a report from Ofsted (2021) found that local authorities were not meeting the requirements stipulated in the Children and Families Act (2014) and the Code of Practice (Department for Education and Department for Health and Social Care 2015) for Special Educational Needs and Disability informed by that act. The report highlighted a postcode lottery, with poor performance by some local authorities resulting in unidentified needs, low-quality EHCPs and lacking coordination with families and professionals. A paucity of funding for schools and child services greatly impacts the support children receive. In England, there is a reported education funding gap of £806 million for children with special educational needs and disabilities (Local Government Association 2020). A lack of resources, as well as normative educational targets and curriculums have been linked to teachers’ lacking confidence, unpreparedness and even apathy regarding the education of disabled children and children on the autism spectrum specifically (Karisa, McKenzie, and De Villiers 2020; Leonard and Smyth 2022; National Association of Head Teachers 2018; Parish, Bryant, and Swords 2018; Reeves et al. 2022).

These issues impact disabled children who are often perceived as deviant students ‘in need of change to fit the environment or otherwise face exclusion’ (Reeves et al. 2022, 623). Children on the autism spectrum are known to be at high risk of both formal and informal school exclusion (Archer et al. 2016; O’Hagan, Bond, and Hebron 2021). Examples of informal school exclusion include illegally placing the child on a reduced timetable, sending the child home early or asking that the child does not attend school when tests are taking place (O’Hagan, Bond, and Hebron 2021). Adams (2021) found that children on the autism spectrum were also frequently absent from school due to school refusal (the reluctance from the child to attend school). Parents of children on the autism spectrum ‘become more intensely involved with their child’s school’ to monitor and play a role in the child’s educational progression, a factor which has been identified as creating challenges for parents’ engagement in paid employment (Baker and Drapela 2010, 583). The current paper, interviewing families residing in different regions of the UK, examines the links between school experiences and parents’ participation in paid employment.

A note on terminology

Although it is understood that autism-first language (for example, to refer to ‘autistic children’ rather than ‘children with autism’) is preferred by many advocates and self-advocates because it promotes a celebration of neurodiversity, a decision was taken to opt out of this phrasing to mediate a diversity of views among the participants (including mothers, fathers and children) of this research. Not all families or individuals engage with the neurodiversity movement, nor do they necessarily hold similar views about how people on the autism spectrum should be described (Kenny et al. 2016). It was found in the current study that while some interviewed families did not have any strong terminological preferences, other parents and young people were strongly against the use of autism-first language. Taking into account the different views of participants, the study refers to ‘children on the autism spectrum’ as a term considered more neutral in comparison to other person-first alternatives (Bottema-Beutel et al. 2021).

Method

Participants

The study included semi-structured interviews with 19 families living in England, Scotland and Wales, comprising seven children aged six to 14, 19 mothers and three fathers. Including all parent and child participants, 22 females and seven males took part. Of the child participants, one was age 6, four were age eight to 10, one was aged 13 and one was age 14. Parents were aged between 20 and 60, with most aged between 31 and 50. Of all participants, 21 were White British/Irish/Other, 6 were Black or Black British, 1 was Asian or Asian British, and 1 was of another ethnic background. Six families were headed by lone parents (all mothers) and 13 were headed by partnered parents. Most families included one child on the autism spectrum (n = 15) while the rest included two or more children on the autism spectrum (n = 4). The employment activity of parents is summarised in the findings (7).

The interviews were part of a PhD study (Blackwell 2022) which aimed to explore the needs and financial experiences of families raising children on the autism spectrum. To be included in the study, the parents needed to be raising and living with a child or children on the autism spectrum aged 5-18 years old. Child interviewees were required to be aged 5-18. Participating families were not asked to provide proof of an autism diagnosis, nor was an official diagnosis of autism expressed as a prerequisite for taking part in the research. This acknowledges that, for numerous reasons, individuals and families may choose not to pursue an official diagnosis, or they might be on a waiting list for getting one. Instead, during a telephone recruitment questionnaire, the interested parent was asked to describe the types of support their child needed, for example whether they needed any specialist equipment or needed support to take part in social and leisure activities. The study employed purposive sampling, aiming to recruit participants with experiences relevant to the research topic (Etikan, Musa and Alkassim 2016). Participants were recruited via online methods. Firstly, social media posts containing information about the research were shared via Twitter and Facebook. Of the two social media platforms, Facebook was more successful for recruitment as research advertisements could be posted to private autism-specific Facebook groups. The group hosts themselves were often instrumental in aiding recruitment by re-sharing the research or by suggesting other private groups. Another online method of recruitment which was the most successful in reaching potential participants involved placing a call for participants at the end of a large survey conducted by a charity organisation.

Initial expression of interest was always made by mothers, and other family members, such as fathers and children, were recruited via them. It is common in family research, particularly in research about disabled children, that fathers are difficult to recruit (Cabrera, Volling, and Barr 2018; Davison et al. 2017; Leach et al. 2019). Recruiting children for the study was also a challenge. Given that it was always mothers who initiated contact with the researcher, it is perhaps not surprising that they were the ‘gatekeepers’ to the recruitment of other family members. Some participating mothers declined their child’s participation on the child’s behalf, and it is likely that in at least some of these cases, the mothers had not passed on the research information to the child or told them about the research. Some mothers expressed that they would not ask their child to participate because they would not find the research engaging or beneficial in any way. In other cases, when declining the child’s participation on the child’s behalf, mothers referred to their child’s verbal ability and/or comprehension as a barrier. Child participation therefore largely depended on parental discretion, although there were also occasions where the mothers reported that they wanted their child to participate but the child declined. Even where children (and fathers) appeared to assent to participating research, it was important not to assume that mothers, as the primary point of contact, had passed information about the research on to them. Therefore, it was the responsibility of the researcher to reiterate key aspects of the research to all participants.

Data collection

Ethical approval for the study was received from the Loughborough Ethics Committee (approval number R19-P171). Different versions of information were sent out for families including different presentations of information for children, depending on their comprehension and reading ability. Participants gave written informed consent. Continuing consent and assent were monitored throughout the duration of the fieldwork (Hart et al. 2020), and it was important to observe verbal and nonverbal cues of participants’ fatigue or unwillingness to continue participation.

Where families agreed to the involvement of children in the research interview, parents were key in informing the researcher of any of the child’s communicative preferences or capabilities. Families could opt to take part in individual or joint interviews with children and/or partners. All the seven children interviewed with a parent present; two families chose to participate in a full-length interview together with children, while the remaining five families with participating children chose to split the interviews into two sections, with a shorter interview taking place with parent and child and a longer individual interview for the parent. Four families interviewed face-to-face (before a series of national lockdowns in response to the Covid-19 pandemic), 13 families interviewed via online video call and two families interviewed over the phone.

As part of a larger PhD study (Blackwell 2022) involving interviews and deliberative focus groups (whereby different sets of participants were tasked with exploring a selection of cost components to meet the needs of a child on the autism spectrum), the purpose of the semi-structured interview as the first method of inquiry was to explore the needs of children on the autism spectrum and household financial experiences. In preparation for the interviews, some initial topic areas were developed from the literature, although the interview schedule was refined and added to as the interviews progressed. The order in which the topics emerged during interviews varied according to the flow of conversation, something which is usually considered best to enable the interviewer and interviewee(s) to move closer towards a natural conversation, and to allow the interviewee(s) to address the issues important to them (Cridland et al. 2015).

After some initial questions about who was in the household and what each of their main occupations or activities were, the families were asked about what children on the autism spectrum needed at home, outside of the home (such as when out shopping or using public transport) and what they needed from specific institutions (schools and autism- and child-specific services). Incorporated in these conversations were further questions about the social, emotional and financial needs of children and families and about how they managed daily routines.

Analysis

The recorded interview data were transcribed verbatim and analysed using Braun and Clarke’s (2012) six phases of thematic analysis. Approaching and viewing the interviews from a perspective informed by the social model of disability (Oliver 1990; Oliver and Barnes 2012) enabled the development of themes concerned with societal factors impacting children on the autism spectrum and their families to explore parental paid employment.

Coding responded to three questions: what school factors do families identify as affecting children and families; how are children on the autism spectrum and their families impacted by these factors; and what are the consequences for parental employment? Codes relating to school factors included provision and support, school environment, school understanding and formal and informal exclusion. Codes responding to the question of child and family impact included child unmet needs, family-school battles and child distress and school refusal. Lastly, consequences for parental employment were coded as time gained/restrained, emotionally supported/drained and home/work life predictability. Formal and informal exclusion and child school refusal were identified as key practical issues impacting parental employment and form the themes presented in this paper. They can each manifest where the school does not provide adequate support, environment and/or staff understanding.

Findings

Engaging in paid employment was a significant challenge for the parents, both in terms of the number of hours they could work and whether they worked or not. Of the 19 families involved in the study (including parents not interviewed), eight fathers and one mother were in full-time work, and three fathers and 10 mothers were in part-time work. Of the parents in part-time work, two fathers and two mothers were participating in ad hoc employment, taking up hours on an irregular basis. One father and eight mothers were not in paid work.

Parents’ decisions and dilemmas around employment were greatly impacted by the extent to which the needs of their children were met at school. School exclusions and child school refusal were found to present significant practical challenges for parents’ participation in paid employment, but these were not described by families as straightforwardly issues related to the child on the autism spectrum. Rather, child school refusal and the child behaviours which could lead to school exclusion were described by families as manifestations of unmet needs resulting from lacking school support and understanding.

Two children in this study had been formally excluded from school on a permanent basis, while informal exclusion (for example, sending children home early from school) was more common, reported by seven families. Meanwhile, 12 families described child school refusal as another outcome of unmet school needs which impacted on parental employment, often stemming from a range of anxieties linked to school and, for some children, paired with aggression.

Formal and informal school exclusion: the impact of lost school support on parental employment

As well as causing upheaval for the children, school exclusions created significant barriers for parents’ engagement in paid employment. Elaine’s son, Aaron, was excluded from a mainstream school, while Audrey’s son, Sam, was permanently excluded from two specialist schools. Each of the mothers explained that their children were excluded due to aggression, however they both described their sons’ aggressive behaviours as communicative of unmet needs at school.

[The school] were…more irritated with him, rather than accommodating … I think it’s the way you talk to somebody…it’s always been at school when he has these big crisis moments…With the schools he’s been at, obviously, yeah, he does go into crisis, but I think they weren’t suited…they couldn’t meet his needs, really.

(Audrey, mother)

[The school] just thought he was naughty…Nobody would listen to me, it was just, no, he’s rude, he’s non-compliant…So every day, and I mean, every day, he was belittled, degraded, pressure put on him to do things he physically couldn’t do…We were called in regularly to pick him up…you know, look what your son’s done again, he’s trashed the room, stuff like that.

(Elaine, mother)

The mothers’ telling of these experiences above indicated that their child’s school challenges (and, eventually their permanent school exclusion) were influenced by the ways that the school staff viewed and responded to the child. The inadequate, or even hostile, treatment of the children was regarded by the mothers as worsening child distress and aggressive behaviours, and subsequently leading to permanent school exclusion. The impact of school exclusion on the children was significant. Elaine said that her son was traumatised by the experience of being permanently excluded from school, and Audrey described Sam as confused by the sudden lack of routine. Permanent exclusion, with each child out of school for up to a year per exclusion period, also posed significant restrictions on parental paid employment.

I’ve had to cut my hours down to two shifts a week and…we’re, sort of, barely surviving… [My husband] can’t get a permanent job…I have two permanent nights and then he has to work around those… that definitely affects his capabilities to work or what kind of work he can do.

(Audrey, mother)

The impact of school exclusion remained after the children found new placements. For example, Sam’s new school placement was only granted on the condition that he entered under a part-time timetable to slowly reintegrate into the education system, a decision which continued to pose restrictions on Audrey and her husband’s ability to earn an adequate income at the time of interview. Similarly, for Elaine, although Aaron eventually found a new school placement, the continuation of informal exclusion, via regular calls to collect him early from school, constrained Elaine’s ability to engage in paid employment.

I couldn’t possibly go to work if I could have the school calling me at any point saying…can you collect your child? How could I have a career with that? That’s just impossible… It would be an absolute joke to go and get a job, and then have to say, sorry, I’ve got to leave right now.

(Elaine, mother)

Elaine’s experience in the extract above indicates that she had to conduct and manage her life around her son’s schooling, a factor which left little time for paid employment. A prominent issue was the flexibility expected of Elaine from her son’s school which made paid employment ‘impossible’ because she could not guarantee the time she had to work. In a paired interview, Brandon (father) and Ann (mother) talked about their son, Max, being frequently sent home, something which Brandon felt was the school’s way of passing on responsibility.

[The school staff] feel like well, if we call mum…she can pick him up and therefore they don’t have to make the effort.

(Brandon, father)

It is significant that Brandon interpreted school decisions to send Max home from school as dependent on their perception of the mother’s availability, that they chose informal exclusion because they saw it as an easy option. Importantly, as described by Ann, informal exclusion added substantial unpredictability to family life, affecting her confidence in returning to work, something which she linked to the quality of the education her son received:

[If] I have a job…right now it would be unprofessional…and I feel if I’m being called, can you come and pick up Max, I am not ready right now to take any…jobs. I need to have peace of mind that he’s in a school with the right environment, the right person.

(Ann, mother)

Ann’s emphasis on the ‘right environment’ and the ‘right person’ for her son indicated the notion expressed by many parents that by attending a school which is well-equipped to support and understand children on the autism spectrum, not only could the school-related experiences of the child and the family improve, but so too could their home life and, in the case of parents, their work lives. Yet 14 of the 19 families were not satisfied with the level of school support, and informal school exclusion was regarded as a manifestation of lacking school provision.

In pursuit of securing better school provision, parents described striving for diagnoses and legally binding education plans to bolster their case for support, for example, in England an Education, Health and Care Plan (EHCP) which was introduced under the Children and Families Act (2014). Before the Act, the EHCP was called a Statement of Education. Parents explained that the process of applying for an EHCP or Statement of Education was immensely difficult, requiring many hours of not only gathering evidence and appealing decisions from the local authority to decline support. After overcoming these challenges, parents described feeling frustrated and defeated when teachers and schools did not take their child’s education plan seriously. Interviewed parents drew a link between lacking school support, informal school exclusion and their own participation in paid work:

Even with a Statement [of Education], the school didn’t put any help in place for him. Even things that were on there like giving him a safe space, they didn’t. I was getting phone calls, probably two or three times a week. He’s on the roof of the porta cabin…Can you come and collect him? Dean [husband] was having to go into work and say, look, I need to have this afternoon off…And his employer took him to one side one day, he said, you’re gonna have to make a decision, either your family or your job.

(Olivia, mother)

Presented with this ultimatum, Olivia’s husband, Dean, left his job. It is of note that his employer did not demonstrate flexibility in response to observing the challenges that Dean faced in mediating work and family life needs (employer flexibility is discussed further in the next subsection). Olivia and Dean were constrained by conflicting demands, first from school (the demand for parents to be flexible) and second from work (the demand for employees to prioritise work schedules).

Formal and informal exclusions presented significant practical challenges for the employment participation of parents, accounting both for reduced paid working hours as well as the decisions of parents to forgo work completely. Revisiting the parent and child experiences presented at the beginning of this subsection, it does not seem to be the case that families regarded their employment decisions and dilemmas as inevitable of their child’s needs or of autism itself, but rather directly linked to school practices and provisions and the level of support and school staff understanding received.

Unmet needs, child school refusal and the impact on parental employment

Many families talked about the challenge of getting children into school, something which they referred to as the child’s ‘school refusal’, and the impact this had on parental employment. Interviews with children highlighted their negative experiences of school, including issues of bullying, the sensory environment of school and the difficulty of academic work. Ricky was one such interviewee who described being bullied, and in another interview, Ellie, who regularly experienced anxiety triggered by the sensory environment, described her own school refusal. Both Ellie and Ricky were attending mainstream schools. These experiences are included here first to contextualise child school refusal as a barrier to parental employment, which is developed further on.

I: Do you like school at the moment?

R: Not that much… I don’t like a giant chunk of the children… They almost annoy me once or twice every single day… There are so many bad things, I don’t know which one to tell you.

(Ricky, child)

E: [Going to school] was very bad at the start of year five…I just didn’t want to go in and then I’d cry, and I wouldn’t get in until half past nine…Lessons start way earlier than that. There was a time I don’t think I even went into class until like ten and it’s…it’s not good.

(Ellie, child)

School refusal was an important factor in the context of parental employment, cited as a reason for parents’ lateness to work or for foregoing paid work completely. A gendered division of childcare and paid labour was observed, with fathers tending to take on roles in paid work and mothers tending to take on the role of primary caregiver. The role of primary caregiver often included working with the child through their morning routine and issues of school refusal. Resultantly, for the mothers in paid work, managing the clashes between care and employment responsibilities was a point of struggle bearing financial consequences:

If I’m not there, I don’t get paid…and I can’t work from home. So, if I have to take time off then that’s it.

(Isobel, mother)

Some parents, like Isobel, had limited flexibility and paid leave in their employment and this explained for some of the different levels of impact that parents felt when trying to mediate paid work and child school refusal. Flexible paid employment was described as particularly beneficial for helping mothers to coordinate their dual roles as employee and primary caregiver. Some of the mothers reported satisfaction with the flexibility of their paid employment. For example, Ayesha experienced frequent periods of child school refusal with her son, but she described her job as flexible and her employer as understanding, something which enabled her to continue working while encountering school challenges:

My life would have been a lot more stressful if I was worrying about well…I’m going to be late today…All that kind of stuff has just been made a lot easier by the fact that [employers are] able to be flexible, and I purposely didn’t take a full-time job, even though we’ve then had to compromise financially on things.

(Ayesha, mother)

Achieving flexible employment to fit around spontaneous difficulties, such as child school refusal, made it possible to develop family-work routines which reduced some of the pressures related to the competing demands of work and home life. However, as described by Ayesha above, there were consequently financial pressures and many parents described taking on job roles below their qualifications. And at attaining work flexibility, parents did not feel able to move to new job roles, apply for promotions or do anything which may disturb their carefully constructed routines:

We [he and wife] both feel stuck in the roles that we’re in.

(Graham, father)

Because our jobs work around each other, I wouldn’t leave.

(Becky, mother)

Flexible employment was therefore a necessity for many of the parents, and having the ability to make up for lateness resultant of child school refusal was considered especially beneficial for mothers. Yet, while a flexible working arrangement allowed mothers to maintain their paid and unpaid roles, it cost them their time, a critical challenge for the participants who already felt time poor. Leanne and Helen were both frequently late to work due to child school refusal, and Helen’s daughter also went through a period of informal exclusion:

If I’m 15, 20 minutes late…I’ll make up the hours…I think, if anything,…I work over what I’m supposed to work just to kind of make sure I justify the time…

(Leanne, mother)

At its absolute worst, she [daughter] had to go [into school] late and come out early…these little things then were eating into my working day…I wasn’t getting to work until a little bit later… I’ve got to catch up those hours in my own time because if I don’t do the hours, I don’t get paid.

(Helen, mother)

For parents in paid work, the requirement to make up lost time and/or the feeling of needing to work extra time to overcompensate for sporadic work absence was a marked downside of participating in paid employment. Working time in lieu of sporadic lateness or absence exacerbated other issues among parents, and especially mothers, including that of time poverty and of the build-up of unremunerated work. The concern of time poverty was a significant deterrent to parents considering whether or not to engage in paid work, and it was felt by many that the induced pressure would be too great.

Work-based factors were compounded by the negative impacts of lacking school support. Many of the interviewed families were dissatisfied with the level of support children on the autism spectrum received, including in mainstream and sometimes specialist settings. Becky and Helen, speaking in the extracts below, described their paid employment as significantly affected by child school refusal. Both women described reducing their hours of work and taking on what they considered to be lesser roles. Becky linked her daughter’s school refusal to a lacking consideration of school staff that her daughter would need time to adjust to changes. Helen, meanwhile, linked her child’s school-home challenges, including school refusal, to a prolonged period of her child’s needs not being recognised.

My husband and I kept saying…do we need to ask for a referral somewhere…I kind of said when she goes into reception, if there’s any issue, they’ll pick it up…they just kept saying no we’ve got no concerns…then when she went from there into Year One, we started a period of really full-on school refusal, a lot of violent and challenging behaviour… We can have days where we physically can achieve nothing…we can’t go anywhere, we can’t do anything because Paisley isn’t in a good place, and it links massively to school…[it] has a massive knock-on effect for us at home.

(Helen, mother)

They’ve got a new head teacher and she changed all the rules and didn’t give us any warning. So, for the first two weeks at school, Sophie, it was a fight to get her to school… They do not warn me before changing things…

(Becky, mother)

There was a clear indication in families’ telling of their experiences that child school refusal was not viewed as an inherent consequence of autism itself or of child factors, but instead as resultant of broader factors, including lacking school support and understanding. The failure of school staff to recognise and to meet the needs of children on the autism spectrum had detrimental effects on the children which could eventually manifest in school refusal, and this had a far-reaching impact on the family, including on the ability of parents to participate in paid work.

Discussion

These findings highlight the challenges that families of children on the autism spectrum can encounter in their interactions with schools, and the impact that these challenges bear on parents’ engagement in paid employment. In line with findings of previous research on parental occupations and incomes, time poverty presents a substantial difficulty for families with children on the autism spectrum (Davy et al. 2022; Dieleman et al. 2018). Parents of children on the autism spectrum often dedicate many additional hours to informal care work and meeting their children’s needs (Järbrink, Fombonne, and Knapp 2003). Parents are greatly affected by the competing demands of informal care work, advocacy and service coordination (Callander and Lindsay 2018; Hodgetts et al. 2014).

Yet, crucially, the care needs of children on the autism spectrum become intensified when the children and their families do not receive appropriate school support and understanding. School refusal and school exclusions are common experiences among children on the autism spectrum and their families (Adams 2021; Archer et al. 2016; O’Hagan, Bond, and Hebron 2021), and these lead to significant barriers to parental paid employment. In the context of child school refusal, parents described their own frequent lateness to work and the necessity to work overtime in lieu to make up for lost time. Formal school exclusion also diminished parents’ abilities to engage in paid employment as they needed to take on more hours of unpaid care work for up to one year per exclusion period. Meanwhile, informal school exclusion led to parents needing to be on call, a factor which made them feel that taking up paid employment was not possible. While it is the case that school can be a difficult place for children on the autism spectrum (O’Hagan, Bond, and Hebron 2021), to more fully appreciate why child school refusal and school exclusions occur, it is crucial to understand them within the context of school practices and provisions, which for many of the families interviewed were experienced as inadequate.

It is evident in this study that parents often become caught by conflicting employer and school expectations. In the realm of work, employees are typically expected to commit to work needs, even to prioritise them. Meanwhile, work demands are in friction with another expectation that parents of children on the autism spectrum should be available and responsive to meet the needs of the child when a school is failing to do so. Families with children on the autism spectrum are expected to be flexible when that is the very thing they need from many institutions and interactions in their own lives. Some parents achieve a degree of flexible employment, but this often requires a financial or temporal compromise. Children on the autism spectrum and their families are frequently met with rigidity in a society which assumes, and is built for, normalised patterns of child development, education and adult working. Flexibility, for example, is not written into school curriculums (Karisa, McKenzie, and De Villiers 2020) and teachers feel ill-prepared and unequipped to provide it (Leonard and Smyth 2022; National Association of Head Teachers 2018; Parish, Bryant, and Swords 2018; Reeves et al. 2022). These issues proliferate financial constraints for families with children on the autism spectrum.

Financial difficulties are widespread among families raising children on the autism spectrum, and it is now understood that it is not simply the case that parents can work their way out of financial hardship with paid employment (Clarke 2006; Roddy and O’Neill 2019). The importance of school for children on the autism spectrum and their families is well known, but the findings in this paper draw attention to parental employment as an example of the wider impact of school systems and level of support. The school challenges highlighted in this paper have important implications, suggesting that employment policies need to be broadened out to consider factors, beyond employers and the workplace, which impact parental employment. In sharing their experiences, the families in this study emphasised the importance of school staff understanding and educational support for children on the autism spectrum. In training for education professionals, the diversity of autism should comprise a particular focus to foster the understanding that children on the autism spectrum may have a range of needs which require support. Given that the majority of children on the autism spectrum attend mainstream schools (more than 70%, according to the Department for Education 2022), it is especially important that educational professionals acknowledge that many children need support, regardless of how they present behaviourally and/or academically. School staff need to be supported themselves in this endeavour, not only with resources but with an education system that acknowledges and encourages a diversity of educational needs and pedagogical approaches.

Acknowledgements

I am extremely grateful to the children and parents who took the time to share their experiences. Huge thanks also to Family Fund for their support in the recruitment of participants.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Economic and Social Research Council under Grant ES/P000711/2.