The preceding chapter detailed the unacceptably high cost, in terms of poor life outcomes, of failing to provide adequate services and support for autistic people.
This chapter seeks to identify the broader economic costs of failing to provide appropriate, timely and adequate support, as well as the financial, social and emotional costs borne by families and carers (including autistic parents). It also highlights key life stages and transition points where failure to provide appropriate supports can have a snowball effect in terms of the economic and social costs for autistic people, their families and the broader community.
The failure to provide adequate services and support comes at a significant cost to autistic individuals, their families, and society more broadly. For individuals, these costs arise from lost potential, low employment rates, reduced independence and poor quality of life. For families, increased stress, social isolation, and relationship breakdowns can result in lower family income and increased health care expenditure. In broader economic terms, poor physical and mental health can lead to increased expenditure on health care and social services, while low education and employment levels can result in lost taxation revenue and an increased reliance on welfare support.
The committee recognises there is a risk that a discussion about the cost of autism could be viewed as a negative reflection on the autistic community. In part this reflects the methodology of available research, which tends to quantify costs from a deficit perspective and does not identify the contribution of autistic people to the economy and society more broadly (or the fact that this contribution can be a function of their autistic traits).
Therefore, the committee would like to make clear that the intent of this chapter, in concert with the preceding one, is to highlight the scale of the issues faced by autistic people and their families and point to where improved supports may offer the greatest benefit.
The economic cost
Estimates of the economic cost of autism in Australia appear to vary. Some of the figures provided to the inquiry include estimated lifetime costs ranging from $6.7 million to $9.2 million per person. However, most submissions that referenced costs relied on Synergies Economic Consulting's Economic Costs of Autism Spectrum Disorder in Australia report (Synergies report), which put the annual economic cost of autism in Australia at between $8.1 billion and $11.2 billion (2010 dollars) and cited an average per person cost of $87 000.
The Synergies report accounted for both direct and indirect costs, as well as quality of life costs. Proportionally, the impact on quality of life accounted for 40 per cent of the total cost, while employment costs and informal care costs (for adults) represented 26 per cent and 22 per cent respectively. Direct costs, including health care, social services and education, accounted for the remaining 12 per cent. Importantly, these figures represented incremental costs only—that is, those over and above costs incurred by non-autistic people.
However, the Synergies report's authors noted that due to a lack of data, these figures also exclude a range of costs, including the cost of underemployment, comorbid conditions, alternative therapies, additional education and living support services, informal care for children, home modifications, and early intervention programs. The report also did not look at the costs of family breakdowns, or transfer effects such as reduced taxation revenue, reliance on welfare, or the impact on personal income. Therefore, it is likely that these cost estimates underestimate the true cost of autism in Australia.
Accordingly, the report suggested that more systematic data collection and further research would be needed to understand the variance in individual outcomes and at what points services are likely to be needed, and by whom. This sentiment was echoed by Ms Rosie Martin:
I also wonder about the value of a deep and wide cost analysis of what costs later arise for not supplying enough support at the right time, in the early years. In this I am thinking about the expense of the challenges of mental illness and the criminal justice system. Maybe that money, if it had been spent early, would have been saved later down the track. I am not aware of there being a deep and wide cost analysis on that; I think it would be valuable.
The cost to families and carers
BioAutism stated that through family relationships alone, it is estimated that approximately 6.5 per cent to 8.7 percent of the Australian population are impacted by autism. As a result, failing to adequately support autistic people has flow on effects for a significant number of parents and carers, including autistic parents.
This section outlines the financial, social and emotional impacts on families and carers, as well as the particular impacts on families of autistic people who show challenging behaviours, as well as autistic parents and carers.
In terms of the direct financial impact on families, a 2014 Australian study estimated that the median cost to families was $34 900 per annum (or $38 198 in 2020). The study also reported that cost of autism symptoms was cumulative—that is, each additional symptom added approximately $1400 per annum. However, given the limitations of the study, the committee is aware that the actual cost to families may be higher. Indeed, some families provided evidence to the inquiry of significantly higher costs:
Over the three or four years it's probably cost us, I hate to say it, but close to half a million dollars, believe it or not.
The committee is also aware that cost estimates may be low as families are simply not able to access adequate and appropriate support. According to Irabina Autism Services (Irabina), 82.9 per cent of families with an autistic family member reported they did not receive some or all of the help they needed.
In order to pay for supports and services, overseas research found that a number of parents borrowed money, cashed in retirement investments, used equity in their homes, and made other sacrifices (including going without meals). This appears to be reflected in the Australian experience, with one submitter disclosing that, in order to care for her daughter, she had taken out a personal loan to cover a period of leave without pay (after exhausting her paid leave entitlements).
In terms of indirect costs, a 2014 Australian study found that almost 90 per cent of the cost to families was the result of lost income from employment. This was consistent with the Synergies report which found employment factors were the biggest indirect contributor to the cost of autism. This may be due to parents working fewer hours than they would like, working in a less skilled job than they would otherwise, or withdrawing from the workforce completely. The indirect economic costs of caring are well known and were one of the factors that led to the establishment of the National Disability Insurance Scheme (NDIS).
The impact of autism on parental employment was also a recurring theme across submissions to the inquiry. For example, one parent reported being unable to work full time as behavioural issues meant they had to be on call to pick up their child from care when needed. The need to reduce or abandon paid work to care for an autistic child was also reported by a large proportion of respondents to a 2017 survey by Autism Queensland. This included:
68 per cent of parents whose children were yet to start school;
68 per cent of parents with primary school age children;
60 per cent of parents with secondary school age children; and
47 per cent of parents whose children had left school.
In addition to the general impact of financial stress on health and family relationships, reduced income from low employment also affects a family's ability to support their autistic child's development. This is a particular concern in relation to low-income families, who may have to limit their access to services, or may not seek support services at all.
Given the substantial cost estimates associated with informal care provision, the financial stress on parents without significant accumulated savings or superannuation is likely to continue well into retirement as they continue to care for adult children.
This is likely to have a disproportionate impact on mothers, who are more likely to be the primary caregiver for their autistic child. A population-based survey in the United Kingdom (UK) found that while 60–70 percent of mothers returned to the workforce after having a child, only 25 per cent from the sample of mothers with autistic children did the same. The financial impact of being unable to work was described by one respondent to an Autism Queensland survey:
My other children and I find ourselves in financially frightening circumstances. We cannot find another rental property because I am caring for my son, and we are almost destitute. I do not think other people/services realise how frightening this is.
The committee is particularly concerned about the financial impact on women—and subsequently their children—given the gender gap in superannuation balances, the economic impact of marriage breakdown, and emerging evidence that women aged 65 and older are currently the fastest growing cohort among the homeless.
Social and emotional impacts
The committee heard numerous accounts of social isolation, exhaustion and depression among parents and siblings of autistic people. This aligns with research indicating that carers of people with disabilities report higher than normal levels of stress, depression and anxiety, along with reduced access to social activities and low levels of informal social support.
Social isolation was identified as a significant source of stress for families. According to one participant, 51 per cent of autistic people and their families feel socially isolated, while 39 per cent feel unable to leave the house due to concerns about negative behaviours. This was illustrated by another participant, who summarised many parents' feelings of being unwelcome at community events due to their children's behaviours:
In particular they talked a lot about community sport and public transport. Some parents spoke about ... their struggles not being understood. Seventy per cent of respondents told us that they felt they weren't included as a family, not just the child, and that that limited their child's opportunities and that they actually as a family felt isolated from community events.
The challenge of accessing appropriate support services was identified as another source of stress, with one parent describing it as her 'second full-time job'. More than one family described the process of accessing support as a battle that favours those who have the ability and resources to fight. The NDIS was seen as a particular source of anxiety and stress for parents:
The NDIS is a fabulous scheme but … the stress we're putting on parents to navigate through that stream when they're trying to access services, supports and funding packages for their children is enormous…
While the committee is unaware of any attempts to quantify the (likely avoidable) emotional and social costs of insufficient support, the cost is likely to be significant. For example, in 2018-19 the annual cost to the economy of mental ill-health in Australia was estimated to be up to $70 billion.
Severe challenging behaviours
The cost of failing to provide appropriate services is even greater for families of autistic people who show severe challenging behaviours. These are behaviours that can result in injury (to themselves or others) or behaviours that impair functioning and health, and present in 5–10 per cent of autistic people with related neurodevelopmental disorders.
Without appropriate support, severe challenging behaviours can escalate and further impair quality of life for autistic people. This can include limiting access to community and educational opportunities, with the result that they are denied the chance to fulfil their potential. It was suggested to the committee that the opportunity cost of this lost potential was further magnified by the added cost of services required to keep these autistic individuals (and those around them) safe as they become adults.
While severe challenging behaviours present in a relatively small proportion of people, the impact on families can be severe:
I see mothers present with black eyes or broken limbs, siblings that have been removed from their homes. I've got parents that have built a padded room for their child; a mother and a father that do not sleep at the same time because they are living in fear of the impact of that child on their sibling.
I've got siblings of one young fellow who can't go on play dates because the mother can't get them there and they certainly can't have play dates in the house. The mental health impact to those children is significant.
Without appropriate support, the stress families experience can be extreme. For example, families have reported that the lack of appropriate services creates '"stress, worry, and guilt", "financial burden", and "hopelessness that engulfs all of us and our actions towards [our child], ourselves and each other"'. The committee also heard that a significant number of parents meet the criteria for a provisional diagnosis of Post-Traumatic Stress Disorder, with parents most at risk being those whose children displayed challenging behaviours, including self-harm and physical aggression.
In some cases, the stress and desperation resulting from a lack of access to appropriate support, including respite care, has led families to make the difficult decision to place their children into state care. Media reports suggest that this occurs mainly in cases where children have high care needs, including 24-hour supervision due to severe challenging behaviours. Parents in this situation have spoken of being 'past the edge of physical, mental and financial crisis' and described how they 'sometimes felt suicidal or [like] simply walking away from lives that had become "nightmares"'.
While the extent of this issue is not clear, in 2018, the Australian Institute of Health and Welfare estimated the percentage of children with disability in out of home care was approximately 14 per cent. The committee heard that within this cohort, autistic children were over-represented 'due to a lack of available supports for families that are overwhelmed and unable to continue to cope in their caring role'. Families report not receiving adequate support, therefore additional supports are critical to better prevent out of home care.
While not a cost borne directly by families, the Productivity Commission estimated that in 2019–20 the annual cost of supporting a young person in residential care in 2019–20 ranged from $445 023 to $847 379 per child.
However, many costs related to severe challenging behaviours were considered avoidable. For example, Irabina argued that appropriate services could alter the trajectory for these individuals and provide 'improved quality of life, greater family stability, and participation in educational and community activities'. This view was supported by other participants:
We've got experiences where sibling relationships are massively improved. We have experiences where parents feel more confident taking their kids out in the community ... we can see that development and support in those really important formative years of a child's life, including school, has a greater impact on their ability to engage with the community as a whole.
Despite this, Mansfield Autism Statewide Services noted that state government expenditure on out of home care services (in Victoria) has 'consistently exceeded spending on family support services intended to prevent children and young people from going into care'.
Autistic parents are doubly affected by a failure to provide adequate services and supports. In addition to being at higher risk of poor life outcomes themselves, autistic parents are also contending with the financial, social and emotional impacts of caring for an autistic child.
A number of submissions pointed to evidence showing that autistic mothers are more likely to have difficulties with multitasking, domestic responsibilities, creating social opportunities for their children, and communicating with professionals about their children.
The challenge of accessing appropriate services is particularly magnified for autistic parents. For example, in addition to seeking their own supports, they are also required to navigate access to services for their children. One autistic parent described the constant advocacy as 'debilitating' and explained:
I find myself communicating when I feel my communication is struggling and even wanting to adopt select mutism to recover, trying to build relationships when I want to withdraw and isolate…
Discrimination was seen as another barrier to appropriate service provision. It was reported that autistic parents can meet with 'unsupportive and even hostile responses' from providers, including criticisms of their parenting and accusations that they have caused their children's challenges.
Discrimination can also lead to negative interactions with child and community services. For example, in the UK, around one in five mothers of an autistic child were assessed by social services and, of those, one in six had their child compulsorily placed for adoption. Autistic mothers in Australia have described similar negative experiences:
I went to a reputable psych clinic, for assessment of my oldest. They basically diagnosed me with refrigerator mum, told me I'm not implementing recommendations and the children's developmental delays are a result of my neglect. They called child protection, who've now taken my children. I am a good mother, I just feel let down by a system that is not built to support autistic women—I am still fighting this.
The committee heard that the challenge of accessing services, along with the fear of discrimination, can result in autistic parents being too afraid to seek help, with significant costs for themselves and their children.
Key life transitions
Difficulties with communication and executive function, a tendency toward restricted interests, as well as cognitive and behavioural rigidity can make life transitions complex for autistic people. Not surprisingly, a number of submissions identified key life transitions as critical points at which support is required.
Failing to provide adequate services and supports at one or more transition points was also seen as having a compounding effect on life outcomes. For example, poorly supported education transitions also decrease an individual's chances of employment. Unemployment can contribute to housing insecurity which may, in turn, increase the likelihood of an individual coming into contact with the justice system.
While participants identified multiple transition points where support is required—such as transitions between living arrangements and between detention settings and the community, the majority identified school transitions and post-school transitions (i.e. into further education and work) as key periods where support is currently lacking.
The transition to school can be particularly difficult for autistic students who face challenges that can disrupt their learning and social adjustment, particularly in new environments. These challenges arise primarily from:
student characteristics – such as mental health and sensory, behavioural and adaptive functioning; and
student interactivity – such as peer relations and social skills, communication, physical setting, logistics, and daily structure.
The transition into primary school involves social-emotional, pre-literacy, and attention skills. Parents have reported difficulties with anxiety, communication with peers and teachers, and adapting to new routines. Social-emotional challenges may be especially relevant, given that 'teachers rate social skills as more important than academic skills for successful kindergarten adjustment'.
The subsequent transition between primary and secondary school brings additional challenges, such as increased academic demands and social pressures, as well as a more complex learning environment. This includes having to navigate multiple classroom settings and teachers.
Successful school transitions were seen as having a positive impact on social adjustment and academic performance over the short term. In addition, the peer bonds and sense of belonging engendered by successful school transitions can decrease the likelihood of a young person coming into contact with the justice system. Over the longer term, these benefits also generate cost savings related to improved employability and increased taxable income.
Conversely, poor school transitions can have lifelong consequences for autistic students. According to the National Disability Insurance Agency (NDIA), issues of self-identity, social inclusion and bullying present a serious risk for autistic students, with isolation and negative experiences often leading to 'escalating behaviours of concern through this part of their life'. In some cases, these experiences can result in autistic students disengaging completely from the education system.
The devastating impact of failing to support school transitions was highlighted by one submitter to the inquiry, who described the social and economic cost of this failure as irreversible—and not unique (Box 4.1).
Box 4.1: Case study: failure to support school transitions
We experienced our own broken bridge before our child even got a chance to begin her secondary schooling. The combined experience of significantly rising anxiety with significantly reduced support triggered a rapid deterioration in our daughter’s already fragile mental health. Not only did she experience exclusion because of the high school’s decisions and omissions, she also experienced rejection by her peers. Soon after she communicated that she would no longer be going to this high school as planned, her friends were no longer accepting of her and stopped communicating with her both in person and online. She was not invited to her Grade 6 graduation party. We were officially in crisis.
The insomnia returned, so did worsening panic attacks. Obsessive compulsive disorder took hold. Her aggression escalated which jeopardised the safety of our family and for the first time emergency services were called to our daughter who really wanted to kill herself. She had become a mental health emergency and was taken to hospital in an ambulance with a police escort. Our daughter was seen by CAMHS (Child and Adolescent Health Service) and referred to a Psychiatrist. The wait was 12 weeks. We were unable to leave her side. In a matter of mere months, our daughter had progressed from a diagnosis of mild autism to be known as a complex case.
Our daughter exhibits frequent and intense behaviours of concern (aggression, disruption, inappropriate vocalisation and absconding) and is unable to attend school. As is often the case in Psychiatry, she requires multiple off label medications to function which attract no subsidies. Because I cannot leave her side, my leave entitlements have been exhausted and we took out a personal loan to cover my leave without pay. Our finances at breaking point, we could no longer fund the gaps for therapies using Medicare or Helping Children with Autism (HCWA) funding. We needed the NDIS (National Disability Insurance Agency) and the good news is, the NDIS has been nothing but positive for our child and family.
Transition to further education and work
A number of participants noted that successful post-school transitions can significantly improve an individual’s long-term economic future, social inclusion and wellbeing.
However, post-school transitions were identified as particularly challenging for young autistic people. For example, pursuing further education can involve navigating a new environment, understanding and using new communication channels and adjusting to new teaching formats and expectations around self‑sufficiency. Autistic students may also have limited access to social supports and experience difficulties managing routines and coping with anxiety and social interactions.
In relation to seeking employment, a lack of appropriate support and adjustments place autistic people at a disadvantage, particularly when faced with generally unsuitable recruitment processes. Once in the workplace, autistic people can struggle as a result of executive functioning challenges, sensory issues, as well as difficulties with, social interactions, communication, and self-regulation during stressful periods.
As noted by the Cooperative Research Centre for Living with Autism (Autism CRC), those who fail to transition are 'at a significantly greater risk of long-term exclusion from the labour force as well as social isolation and physical and mental health issues'. Despite this, it was observed by many participants that the post-school transition is the point when services for autistic people 'fall off a cliff'. The resulting impact of was described by one survey respondent:
Lack of support means Autistic people may leave education early or stay in education for many additional years. Either way, this means we don't get jobs, develop financial independence or move out of home at the same rates as the general population. The cost to us is lack of independence, self-determination, financial stability.