The microsegmentation of the autism spectrum: research project

8 The Economic Impact Of Autism Spectrum Disorders In Scotland

The cost of autism

8.1 Autism can have multiple economic impacts on the lives of individuals with ASD and their families, including impacts in relation to health and social care needs, education, housing and employment (Knapp & Buescher, 2014). Those impacts should not necessarily be viewed negatively: they include the appropriate societal responses to needs and preferences as well as positive contributions through, for example, particular skills of value in the workplace. However, because autism can have significant effects on the quality of life of individuals with ASD (Baxter et al., 2015; van Heijst & Geurts, 2015), their families and others (Hoefman et al., 2014; Kuhlthan et al., 2014; McGrew & Keyes, 2014;), these economic impacts can be high.

8.2 The overall cost of autism has been previously estimated to be at least £32 billion per year in the United Kingdom, including education, health and social care services, and productivity losses for individuals with autism and their families (Buescher et al., 2014). Fifty-six per cent of the total cost is accounted for by services, 42% by lost employment for the individual with an ASD, and the remaining 2% by caregiver time costs (although the caregiver proportion in that study was almost certainly an underestimate because of the absence of evidence on family time contributions). The cost of supporting an individual with autism during his or her lifespan has been estimated at £1.5 million for someone with intellectual disability and £0.92 million for someone without intellectual disability. Those most recent estimates were based on a range of previous studies, including previous UK-wide cost calculations (Järbrink & Knapp, 2001; Knapp et al., 2009).

8.3 The purpose of this chapter is to consider a number of economic issues in relation to ASD in Scotland. The first section of the chapter presents the methodology of the economic analyses, the second the results, and the third a brief discussion. We describe service use patterns and costs of individuals with ASD by diagnosis; the lifetime cost of individuals with ASD with and without intellectual disabilities; the national cost of ASD in Scotland; and the predictors of service cost for individuals with ASD.

Methods

Unit costs

8.4 We look at both service utilisation and associated costs calculated by weighting each service by its unit cost. The unit costs employed in the study are reported in Table 8.1. Where possible, unit costs for education are taken from the PSSRU unit cost volume (Curtis, 2014). Other costs are taken from other studies (Barron, Molosankwe, Romeo, & Hassiotis, 2013; Clifford, 2011; Clifford & Thobald, 2012; Tanner et al., 2009) or from organization websites (Education Endowment Foundation, 2015). As far as possible we aim to estimate the additional cost of autism spectrum disorders, and hence standard educational provision (e.g. mainstream school or further education college for the neurotypical majority) are assigned a cost of £0.

8.5 It was not possible in the survey to collect data on intensity of use of educational services, and so unit costs for ( ASD-relevant) educational services in mainstream schools, further education colleges and special day schools are estimated using cost figures from the PSSRU volume (Curtis, 2014) and intensity estimates (hours/week) from previous studies (Clifford & Thobald, 2012). These estimated intensities are as follows: educational psychologist (1 hour per week), psychotherapist (1), speech and language therapist (2.2), occupational therapist (2.2), and physiotherapist (0.8). All intensity estimates were available and extracted from previous studies, except for psychotherapist, which was estimated conservatively at the same intensity as an educational psychologist.

8.6 There have not previously been studies that provide estimates of unit costs per individual for classroom assistants or specialist assistants in mainstream schools and further education colleges, and so we estimate these conservatively as half of the cost of a classroom assistant in special day schools (Clifford, 2011). Exclusion from school is not costed because it is assumed (based on expert opinion) that in the event of exclusion there is no alternative provision for children with ASD, and parents are expected to either look after their children at home or arrange alternative care. Moreover, costs resulting from the longer-term implications of exclusion from school (due to impacts on educational achievement and employment status) are not estimated, as these consequences are too difficult to estimate and would require significantly more data.

8.7 Unit costs for health and social care are taken from the PSSRU volume (Curtis, 2013, 2014), NHS reference costs (Department of Health, 2014), and previous research (Cognisant Research, 2012; Knapp et al., 2013). Due to the broad variety of holiday schemes possible and the absence of information on the specific type of scheme attended by the study participants, the unit cost for holiday schemes is differentiated between schemes with a duration of use of less than 24 hours, assumed to be similar to social clubs and day schemes, and schemes where utilisation is for more than 24 hours, assumed to be similar to short-break provisions.

8.8 Costs for carers’ employment are taken from ONS (2014). The human capital method is used to estimate productivity loss as a result of disrupted employment. In order to calculate the productivity loss we use mean hourly earnings for all employees (£15.17) and national mean total weekly paid hours for all employees (33.1) ( ONS, 2014). We then calculate the productivity loss as follows. If the carer works 33.1 hours per week or more (both paid and voluntary), we estimate the productivity loss at £0. If the carer works less than 33.1 hours per week (both paid and voluntary), we estimate the productivity loss using the following formula: (33.1 - number of hours worked per week)*£15.17*26 weeks.

8.9 We estimate the productivity loss at the individual level for carers who are in employment (paid or voluntary) only, excluding those who were unemployed. This was due to the difficulty of adjusting data at the individual level by national unemployment and national inactivity rates. All costs are at 2013-14 price levels. Where unit costs could only be found from earlier years, these are inflated to 2013-14 prices using the Hospital and Community Health Services Pay and Prices Index (Curtis, 2014).

Table 8.1 Unit costs (£, 2013/14)

	Unit cost	Source
Accommodation
Private household	£0
Formal foster care	£100/day	Curtis, 2014
Supported living accommodation	£924/week	Curtis, 2014
Residential school	See below	-
Residential care	See below	-
Secure unit (adults)	£537/day	Curtis, 2014
Education
Mainstream school	£0	-
Further education college	£0	-
University	£0	-
Special unit/resource in mainstream school	£140/week	Barron et al., 2013
Special day school	£527/week	Clifford & Thobald, 2012
Special residential school (38 weeks)	£2,087/week	Clifford & Thobald, 2012
Special residential school (52 weeks)	£3,308/week	Clifford & Thobald, 2012
Home education	£0	-
School family worker/education support worker	£0 a	-
Educational psychologist	£138/week b	Curtis, 2014
Classroom assistant	£129/week c	Clifford, 2011
Specialist teacher	£129/week c	Clifford, 2011
Disability service advisor	£0 a	-
School nurse	£0 a	-
School doctor	£0 a	-
After-school club	£0 a	-
Home tuition	£26/hour	Tanner et al., 2009
Individual tuition	£26/hour	Tanner et al., 2009
Tuition in small groups	£10/hour	Education Endowment Foundation, 2015
Exclusion	£0 d
Health and Social Care (received at school)
Individual counselling/therapy	£50/week b	Curtis, 2014
Occupational therapist	£70/week b	Curtis, 2014
Speech and language therapist	£70/week b	Curtis, 2014
Physiotherapist	£26/week b	Curtis, 2014
Health and Social Care
Residential respite care
Residential care-home (children)	£428/day	Curtis, 2014
Residential care-home (adults)	£205/day	Curtis, 2014
Foster care (children)	£100/day	Curtis 2014
Inpatient services
Psychiatric hospital (children)	£614/day	Curtis, 2014
Psychiatric hospital (adults)	£351/day	Curtis, 2014
Psychiatric ward in a general hospital (children)	See Psychiatric hospital	-
Psychiatric ward in a general hospital (adults)	See Psychiatric hospital	-
General medical ward – short stay (e.g. =1 day) (children)	£837/episode	Department of Health, 2014
General medical ward – long stay (e.g. >1 day) (children)	£2,901/episode	Department of Health, 2014
General medical ward – short stay (adults)	£601/episode	Curtis, 2014
General medical ward – long stay (adults)	£2,593/episode	Curtis, 2014
Hospital care in prison/secure/semi-secure unit (children)	£968/day	Department of Health, 2014
Outpatient services
Psychiatric outpatient visit (children)	£271/contact	Curtis, 2014
Psychiatric outpatient visit (adults)	£100/contact	Curtis, 2013
Accident & Emergency	£135/contact	Department of Health, 2014
Other hospital out-patient visits	Specified for each service	Department of Health, 2014
Community care services
Psychiatrist	£262/hour	Curtis, 2013
Psychologist	£138/hour	Curtis, 2014
Individual counselling/therapy	£50/hour	Curtis, 2014
Group counselling/therapy	£50/hour	Curtis, 2014
General Practitioner	£175/hour	Curtis, 2014
Community learning disability nurse (children)	£95/hour	Curtis, 2014
Community learning disability nurse (adults)	£80/hour	Curtis, 2014
Community nurse (other services) (children)	£95/hour	Curtis, 2014
Community nurse (other services) (adults)	£57/hour	Curtis, 2014
Other community learning disability team member	£37/hour	Curtis, 2014
Community challenging behaviour team member	£37/hour	Curtis, 2014
Child development centre/community paediatrics	£310/contact	Curtis, 2014
Occupational therapist	£32/hour	Curtis, 2014
Speech therapist	£32/hour	Curtis, 2014
Physiotherapist	£32/hour	Curtis, 2014
Social worker	£55/hour	Curtis, 2014
Home help/home care worker	£24/hour	Curtis, 2014
Outreach worker/family support	£22/hour	Curtis, 2014
Befriender	£7/hour	Curtis, 2014
Day care centre (children)	£17/hour	Curtis, 2014
Day care centre (adults)	£16/hour	Curtis, 2014
Social club (<=4hours)	£7.5/half-day	Curtis, 2014
Social club (>4hours)	£15/day	Curtis, 2014
Play-schemes (<=4hours)	£7.5/half-day	Curtis, 2014
Play-schemes (>4hours)	£15/day	Curtis, 2014
Sheltered workshop	£54/week	Knapp et al, 2013
Individual placement and support	£72/day	Curtis, 2014
Holiday schemes (<=4hours)	£7.5/half-day	Internet searches
Holiday schemes (>4 & <24hours)	£15/day	Internet searches
Holiday schemes (>=24hours)	£305/day	Curtis, 2014
Child-minder	£19/hour	Curtis 2014
Other community care services	Specified for each service	Curtis, 2014; Cognisant Research, 2012; internet searches
Carers
Health and social care services
Psychiatrist	£262/hour	Curtis, 2013
Psychologist	£138/hour	Curtis, 2014
Individual counselling/therapy	£50/hour	Curtis, 2014
Group counselling/therapy	£50/hour	Curtis, 2014
General Practitioner	£175/hour	Curtis, 2014
Physiotherapist	£32/hour	Curtis, 2014
Social worker	£55/hour	Curtis, 2014
Outreach worker/family support	£22/hour	Curtis, 2014
Other health and social care services	Specified for each service	Curtis, 2014
Employment
Employment (paid and unpaid) e	£15.17/hour	ONS, 2014

Notes: ^a Included in school costs. ^b Mainstream schools, special unit/resource in mainstream schools, further education colleges, and special day schools (hours/week): educational psychologist (1), psychotherapist (1), speech and language therapist (2.2), occupational therapist (2.2), and physiotherapist (0.8). Cost adjustment based on therapy intensity in Clifford & Thobald (2012) for all services but psychotherapist. Psychotherapist is estimated conservatively at the same intensity as educational psychologist. ^c Only for mainstream schools and further education colleges: classroom assistant/specialist assistant. Cost estimated conservatively as half of the cost of classroom assistant in a special day schools (Clifford, 2011). ^d It is assumed that in the event of exclusion there is no alternative provision for children with ASD, and parents are expected either to look after their children at home or to arrange alternative care. ^e The national mean total weekly paid hours for all employees is 33.1 ( ONS, 2014).

Statistical analysis

8.10 Descriptive statistics of service use and cost for users are investigated and are reported, per annum, by category for education (educational facilities, educational support, tuition, exclusion) and health and social care (at school/college, residential respite care, inpatient care, outpatient care, community care). Results are reported separately for children (aged under 16) and adults. Within each group (children and adults), results are presented separately for the three diagnostic groups ( HFA, ASD, and autism).

8.11 We also report descriptive statistics of service use and cost for carers, per annum by category (health and social care, and employment). Carers are defined as parents, family carers, or other non-professional, unpaid carers for someone with ASD. Results are reported separately for carers of children and adults. Within each of these two age groups, results are presented separately for the three diagnostic groups ( HFA, ASD, and autism). Service use and cost for the carers themselves are analysed and presented separately, as these data were collected less comprehensively than were data for users (due to necessary limitations of questionnaire design), and were only available when questionnaires were completed by carers.

Lifetime cost

8.12 We estimate the lifetime costs for individuals with ASD with and without ID. The over-representation in the survey of people with ASD without intellectual disabilities and the under-representation of people with ASD living in residential settings, together with limited data from previous studies make it impossible to calculate robust estimates of lifetime costs for the three diagnostic groups separately.

8.13 We estimate the lifetime costs for individuals with ASD with and without ID by piecing together data on service costs for both people with ASD and their carers, for different age ‘slices’ within the sample (0-1, 2-4, 5-11, 12-15, 16+ years). Life expectancy is assumed to be 67 years (Shavelle & Strauss, 1998). Estimates are obtained by combining annual cost figures for individuals with ASD with and without ID in different types of accommodations with the prevalence in different types of accommodations. The annual costs for these calculations are from the Scottish Autism survey and the PSSRU volume (Curtis, 2014). The numbers of people with ASD living in residential settings are estimated for different age bands using assumptions adopted in previous studies (Buescher et al., 2014; Knapp, Romeo, & Beecham, 2007; Knapp et al., 2009): children with ASD without ID (100% private household), children with ASD and ID (98.75% private household, 1.25% residential or foster care, 0% hospital), adults with ASD without ID (79% private household, 5% supported living accommodation, 16% residential care, 0% hospital), and adults with ASD and ID (48% private household, 27% supported living accommodation, 24% residential care, 1% hospital). The resulting total costs were then discounted back to the present value ( PV) using the conventionally recommended 3.5% discount rate ( HM Treasury, 2011).

8.14 Cost figures are drawn from estimates based upon the Scottish Autism survey, except for employment of people with ASD due to the fact that the majority of the responses were missing. Productivity loss for people with ASD as a result of lost or disrupted employment is estimated using the human capital method and adjusting for the national employment rate by age bands (63.1% at 16-24, 86.2% at 25-49, 75.5% at 50- State Pension Age; ONS, 2015b). We assume that 15% of individuals with ASD and without intellectual disabilities are in full-time employment (National Autistic Society, 2009), 5.4% in part-time employment (reflecting the full-time/part-time employment ratio in the general population; ONS, 2014), and that no individual with ASD and intellectual disabilities is in open employment. We assume mean annual earnings for full-time employees at £32,328 ( ONS, 2014). Due to the lack of prevalence figures for each diagnostic group ( HFA, ASD, and autism), cost figures are based on the average cost across the three groups by age ‘slices’ (0-1, 2-4, 5-11, 12-15, 16+ years) and presence of intellectual disabilities.

8.15 We adjust estimates based upon the Scottish Autism survey to capture the additional cost of ASD in addition to ‘usual’ provision by subtracting the cost of mainstream schools ( CIPFA, 2009), and by subtracting the cost of health care services in the general population (Anderson et al., 2014; Barber et al., 2015; Buescher et al., 2014; Department of Health, 2010; Petrou et al., 2010) (see Table 8.2). Given the absence of evidence from previous research on social care services cost in the general population, and the expected low use of social care services in the general population, we assume that the observed social care services use and cost in the ASD population is incremental.

8.16 Results are presented separately for those with ASD with and without ID, assuming individuals were diagnosed at birth. These are further subdivided within each group, by sector of provision (education, health, social care) as incremental costs. We include welfare benefit payments using estimates from the PSSRU volume (Curtis, 2014).

Table 8.2 Annual cost in the general population (£, 2013/14)

	Unit cost	Source
Children (0-1)
Education	£0 a	-
Health and Social Care	£0 a	-
Children pre-school (2-4)
Education	£4,074	CIPFA, 2009
Health and Social Care	£801.46 b	Barber et al., 2015
Children primary (5-11)
Education	£4,074	CIPFA, 2009
Health and Social Care	£783.93 c	Petrou et al., 2010
Children secondary (12-15)
Education	£5,267	CIPFA, 2009
Health and Social Care	£309.84 d	Anderson et al., 2014
Adults (16+)
Education	£0 a	-
Health and Social Care	£593.43 e	Department of Health, 2010

Notes: ^a Assumed to be £0. ^b Including: hospital services (overnight hospital stay, day hospital attendance, outpatient visit, accident and emergency department attendance, day-case surgery, dentist, dermatologist, ear nose and throat, consultant for intellectual disabilities) and contact with health professionals (general practitioner, nurse, occupational therapist, speech and language therapist, physiotherapist, psychologist, social worker, health visitor, family support worker, NHS direct, special help teacher) for children aged between 18 months and 4 years. ^c Including: hospital in-patient, hospital out-patient and day care services (accident and emergency care, hospital day unit, other out-patient care), community health and social care services (general practitioner, practice nurse, community nurse, community paediatrician, dentist, orthodontist, optician, chiropodist, physiotherapist, speech therapist, audiologist, social worker, home visitor/volunteer, counsellor, psychologist, psychiatrist, osteopath, home teacher (Portage), home teacher (other), orthoptist, other community healthcare professionals), prescribed medications. The study focusses on children aged between 9 years 9 months and 12 years 3 months. ^d Including: hospital services (overnight hospital stay, outpatient visit, accident and emergency department attendance) and contact with health professionals (general practitioner, nurse, school nurse, counsellor, child mental health service, child psychologist, social worker, other professionals) in children aged between 12 and 16 years. ^e Including: hospital services (inpatient, outpatient, accident and emergency) for adults aged between 16 and 64 years. The figure includes the most common reasons for admissions (toxicity, alcohol or drugs, mental health problems) only. Previous estimations in a psychiatrically well population aged 16 to 64 years resulted in a similar figure of £634.73 per annum (Patel, Knapp, Henderson, & Baldwin, 2002).

National cost

8.17 We estimate the national cost for people with ASD with and without ID by piecing together data on cost of services for both people with ASD and their carers, for different age bands. Due to the over-representation in the survey of people with ASD without intellectual disabilities and the under-representation of people with ASD living in residential settings, we weighted the survey sample to reflect the population of people with ASD in Scotland.

8.18 The number of people with ASD in Scotland is estimated for different age bands using national population estimates ( ONS, 2015a). The prevalence of ASD is assumed to be 1.035% (see Chapter 4), and life expectancy is assumed to be 67 years (Shavelle & Strauss, 1998). The number of people with ASD and intellectual disabilities in Scotland is estimated for different age bands assuming that the prevalence of intellectual disabilities in people with ASD is 32.7% (see Chapter 5). The number of people with ASD living in different types of accommodation is estimated for different age bands using assumptions adopted in previous studies (see section 8.13). The age of diagnosis is assumed to be 3 years for children with ASD with ID and 7 years for those without ID (Brett, Warnell, McConachie, & Parr, 2016). All children are assumed to be diagnosed at those ages, while only 10% of children with ASD with and without ID are assumed to receive a diagnosis before 3 and 7 years respectively.

8.19 Similarly to lifetime cost, cost figures are obtainable through the Scottish Autism survey, the PSSRU volume (Curtis, 2014) and the literature (Buescher et al., 2014). Due to the lack of prevalence figures for each diagnostic group ( HFA, ASD, and autism), cost figures are based on the average cost across the three groups by age ‘slices’ (0-1, 2-4, 5-11, 12-15, 16+ years) and presence of intellectual disabilities.

8.20 Results are presented separately by sector (education, health, social care, employment) as incremental costs. We include welfare benefit payments using estimates from the literature (Curtis, 2014), although noting that these are transfer payments and so not relevant for some calculations. We compare overall and lifetime costs with previous studies in the UK and elsewhere.

Cost variation

8.21 Cost variation analyses examine whether costs are associated with individual characteristics. We look at health care, social care, education and total costs.

Scope of the cost variations analyses

8.22 The primary aim of these analyses is to understand the variations in costs for a group of individuals with a range of characteristics, of which the severity of ASD is likely to be particularly important. Of the 950 individuals included within the analysis, 217 indicated autism, 426 indicated Asperger’s/High Functioning Autism ( HFA), and 307 indicated other ASD or autism of a severity that was difficult to categorise. It was decided that cost variations analyses would not be completed for this final group. The severity of ASD for this third group was not well understood. In particular, it is possible that this is a composite group, including individuals with autism and Asperger’s/ HFA, which would make it hard to interpret findings. We therefore concentrate on the 643 individuals with autism or Asperger’s/ HFA for this part of the economic study.

8.23 People with autism and people with Asperger’s/ HFA were analysed separately. This accounted for the biases that existed within the sample where the number of respondents within each subgroup did not align with the prevalence of each subgroup in the wider Scottish population. This did however mean that sample sizes were reduced for each of the individual models. Children and adults were also analysed separately, since the type of services offered to and received by these two groups are different.

8.24 Four groups were therefore identified and cost variations for these groups were explored separately: children with Asperger’s/ HFA, children with autism, adults with Asperger’s/ HFA, and adults with autism.

8.25 As well as collecting information about service receipt for people with ASD, the survey also allowed carers to indicate which services they themselves received. However, it was not possible to collect comprehensive data on service use by carers, and we do not analyse the associated cost variations here.

8.26 Services and their associated costs are grouped according to funding source: health care, social care, education and total costs (the sum of health, social care, and education costs), and factors associated with these costs are considered in turn. Socio-demographic variables are included for both children and adults: sex, age, ethnicity, living accommodation and co-occurring conditions: ADHD, OCD or Tourette’s, epilepsy, and mood disorders (including depression). Additional data are captured for adults, and further independent variables for these models include employment status, relationship status, and highest educational qualification achieved. Finally, for adults, more detailed information about residence was also collected and the accommodation variable was transformed to better capture independence, being binary to indicate whether the individual is living alone or with a partner/friends as opposed to living in a more assisted setting (including for example with parents).

8.27 It is very common to find that large numbers of people do not use services (or do not use particular services), and so costs data are often highly skewed: many individuals with zero costs, and a few people with very high costs. In order to overcome this issue, two-part models were adopted as part of the analyses. This approach has been used in similar studies (e.g. Knapp et al., 2014). These models describe the variation in costs by answering two distinct research questions: ‘What are the characteristics of individuals who use any (i.e. some positive amount of) services?’, and ‘Among those using some services (i.e. with a positive cost), what factors are associated with the level of cost for these individuals?’.

8.28 To address the first question, for each cost category the cost variable is transformed into a binary variable, with a value of one indicating receipt of any service(s) in that area, and zero indicating no such receipt. A logistic regression is then used to assess the associations between individual characteristics and the probability of being in receipt of the services considered. In order to answer the second question, the second part of the model considers only those people in receipt of services (i.e. with a positive cost), eliminating the statistical estimation issues arising due to non-receipt. To determine the most appropriate model to use for the second part, an algorithm developed by Manning & Mullahy (2001) was employed.

Results

Service use and cost: children

8.29 Table 8.3 summarises the cost findings for the 546 children with ASD. Details are reported in Appendix D.1, where Tables 11.28- 11.30 describe the annual service use and cost by service.

8.30 Almost all of the children included in the survey lived in private households. Eighty per cent of children with Asperger’s were in mainstream schools and the rest in special units within mainstream schools (with a minority in special day schools and one individual in residential school). However, only 42% of children with autism were in mainstream schools over the last six months, with one-quarter in special units within mainstream schools, over one-third in special day schools, and a few individuals in residential schools. Across all diagnostic groups, about 45% received extra-educational support from an educational psychologist and just under 20% received this from a school family worker. Only about 20% did not receive any extra-educational support.

8.31 Fifty-eight per cent of children with Asperger’s/ HFA were supported by a classroom assistant, 30% by a special teacher, 24% by speech and language therapists and 14% by occupational therapists at school. These percentages were even higher for children with autism, being 68%, 46%, 55% and 30% respectively. A small percentage of children received tuition.

8.32 While none of the children with Asperger’s/ HFA used residential respite care, 6% of children with autism did use this or foster care, sometimes for long periods of time. Only a few individuals across the diagnostic groups used inpatient care. In terms of community care, on average: 20% of children with Asperger’s/ HFA saw a psychologist twice every three months, 18% saw a general practitioners every three months, 12% attended social clubs almost weekly, 11% had monthly appointments with a psychiatrist, and 10% or fewer had regular contacts with some other specified services (speech and language therapy, occupational therapy, family support, befriender, play schemes, holiday schemes). Few individuals had intensive individual or group therapy.

8.33 When considering children with autism, 25% saw their general practitioner every two months on average, 20% were supported by a speech and language therapist, fewer than 20% had contacts with some other services (psychologist, occupational therapists, social worker, family support, play schemes, holiday schemes), and fewer than 10% visited a psychiatrist or frequented social clubs regularly. Few individuals received regular befriending or intensive home help.

8.34 The overall annual cost of services for children with ASD varies widely from £13,360 for children with Asperger’s/ HFA to £26,321 for children with autism. Across all children, educational costs make the largest contribution: almost three-quarters of total costs. Social care contributes approximately 10% of total costs. Costs for children with autism are higher than for children with Asperger’s/ HFA, especially for educational and social care costs. While few individuals across any of the diagnostic groups were in residential schools, their costs contributed up to on average £172,000 per child. Similarly, residential care for a few children with autism or other ASDs accounted for up to about £22,000 per individual.

8.35 Inpatient care is rare both for children with Asperger’s/ HFA and for children with autism, but when it occurs it is expensive. Children with Asperger’s/ HFA rarely used outpatient services and costs were low; children with autism were more likely to use these services, and more frequently.

8.36 Two-thirds of community care costs for children with Asperger’s/ HFA were accounted for by the use of psychiatry, psychologist, individual/group therapy and family support (with other services including community learning disability nurse, occupational therapist, and child-minder being used by few individuals but associated with sometimes considerable costs). Fifty-four per cent of community care costs for children with Autism were accounted for by the use of individual/group therapy, home help, family support, and holiday schemes. Twenty-three per cent was accounted for by psychiatrist, psychologist, community paediatrics, speech and language therapists and social workers. Overall, services use and costs for children with other ASDs were intermediate between children with Asperger’s/ HFA and children with autism.

Table 8.3 Average annual service cost for children with ASD, by diagnosis and sector (£, 2013/14) (N=546)

	Autism (N=135)						Asperger’s/ HFA (N=190)						Other ASDs (N=221)
	Total sample		Children with at least one contact				Total sample		Children with at least one contact				Total sample		Children with at least one contact
	Mean	SD	N	%	Mean	SD	Mean	SD	N	%	Mean	SD	Mean	SD	N	%	Mean	SD
Education
Sub-total: Education	19,191	1,955	116	85.9%	22,334	2,138	9,502	651	146	76.8%	12,366	689	15,115	1,327	184	83.3%	18,155	20,308
Health Care
Accommodation	0	0	0	0.0%	0	0	0	0	0	0.0%	0	0	0	0	0	0.0%	0	0
Inpatient care	215	95	5	3.7%	5,802	0	784	776	2	1.1%	74,517	72,843	380	281	7	3.2%	12,013	21,871
Outpatient care	445	84	42	31.1%	1,430	201	302	59	51	26.8%	1,124	175	397	58	69	31.2%	1,273	1,144
Community care	3,847	331	107	79.3%	4,854	358	2,337	518	118	62.1%	3,763	807	3,159	268	159	71.9%	4,390	4,074
Sub-total: Health Care	4,507	377	110	81.5%	5,531	404	3,423	1,280	129	67.9%	5,041	1,871	3,936	388	167	75.6%	5,209	6,113
Social Care
Accommodation	553	389	2	1.5%	36,400	0	38	1,181	0	0.1%	7,280	0	58	1,447	0	0.2%	9,100	0
Residential respite care	1,152	544	8	5.9%	19,439	6,685	0	0	0	0.0%	0	0	356	195	6	2.7%	13,125	12,978
Community care	918	249	55	40.7%	2,253	568	397	107	66	34.7%	1,142	289	547	166	70	31.7%	1,726	4,156
Sub-total: Social Care	2,623	706	55	40.8%	6,431	11,862	435	159	66	34.8%	1,247	3,033	961	293	71	32.3%	2,973	6,657
Total	26,321	2,359	123	91.1%	28,877	27,387	13,360	1,450	165	86.9%	15,365	20,679	20,013	1,612	200	90.7%	22,075	24,179

Note: Total costs may not add up due to a difference in the number of observations.

Service use and costs: adults

8.37 Table 8.4 describes the cost findings for the 404 adults with ASD. As for children, details are reported in Appendix D.2, where Tables 11.31- 11.33 describe annual service use and cost by service.

8.38 Ninety per cent of adults with Asperger’s/ HFA were living in private accommodation, while only 66% of adults with autism were living in private accommodation, mainly with parents or relatives. Thirty-five per cent of adults with Asperger’s/ HFA were in education, mainly mainstream schools and university, compared to 45% of adults with autism, who were mainly in special day or residential schools. While adults with autism in education were supported by a classroom assistant or specialist teacher and had contact with other educational professionals (disability services, educational psychologist, speech and language therapist, occupational therapist, school family worker), only one third of adults with Asperger’s/ HFA in education were supported by a classroom assistant or specialist teacher and had contacts with disability services. Sixteen per cent of adults with autism and 9% of adults with Asperger/ HFA received extra tuition.

8.39 Only one adult with Asperger’s/ HFA and three adults with autism used residential respite care, the latter for a longer period of time. Only a few adults used inpatient care, mainly general wards, but when psychiatric hospitals or psychiatric wards in general hospitals were used the duration of stay was longer. About one third of individuals used outpatient care, both psychiatric and non-psychiatric outpatient services for adults with Asperger’s/ HFA but mainly non-psychiatric outpatient services for adults with autism.

8.40 Thirty-two per cent of adults with Asperger’s/ HFA visited their general practitioner every two months on average, fewer than 20% had regular visits with a psychiatrist every three months and with a psychologist and social worker about once a month. Nine per cent had monthly sessions with a counsellor/therapist, 10% received family support twice a week, and a few individuals used some services with similar high intensity (home help more than twice a week, befriender almost once a week, social clubs about every ten days).

8.41 Thirty-three per cent of adults with autism visited (or were visited by) a social worker every two months on average. Twenty-two per cent visited their general practitioner about every two months, whereas less than 20% were in contact regularly with other services (psychiatrist about every four months, psychologist and community learning disability nurse every two months). Twelve per cent visited day centres weekly and social clubs about once per fortnight. Fewer than 10% were in contact regularly with other services (individual counselling/therapy about every two weeks and home help about four days a week). A few individuals used play schemes four times per week.

8.42 The overall annual cost for adults with ASD varies from £8,030 for adults with Asperger’s/ HFA to £25,824 for adults with autism. Across all groups, social care accounts for over half the total cost. One third of the cost for adults with Asperger’s/ HFA is accounted for by health care, mainly driven by accommodation and inpatient care. On the other hand, one third of the costs for adults with autism are accounted for by education, with the remaining amount by health care, particularly driven by inpatient care. As we find for children, while costs are lower for adults with Asperger’s/ HFA compared to adults with autism, the differences are greater for educational and social care costs.

8.43 Accommodation costs were driven particularly by the costs of supported living accommodation. Sixty per cent of the substantial educational costs for adults with autism were due to the high costs of special day schools and residential schools, while 26% was for tuition, both of which were accessed by fewer than 20% of the individuals. While residential care constitutes a small proportion of overall health and social care costs and is only used by a few individuals, its cost can reach up to £10,272 annually. Similarly used by a few individuals only, inpatient care was responsible for about 20% of the overall health and social care costs, and could sometimes be very high (a cost of £126,360 per year for one individual with autism). About 70% of the entire health and social care costs were attributable to community care, of which 73% constituted home help and family support for adults with Asperger’s/ HFA and 84% constituted home help and day care for adults with autism.

8.44 It is worth noting the wide inter-individual variation in health and social care services costs, in particular for high-cost services used by few individuals (e.g. psychiatric hospital), or low-cost services used by few individuals regularly (e.g. home help, family support, day care). Overall, as for children, services use and costs for adults with other ASDs were intermediate between adults with Asperger’s/ HFA and adults with autism.

Table 8.4 Average annual service cost for adults with ASD, by diagnosis and sector (£, 2013/14) (N=404)

	Autism (N=82)						Asperger’s/ HFA (N=236)						Other ASDs (N=86)
	Total sample		Adults with at least one contact				Total sample		Adults with at least one contact				Total sample		Adults with at least one contact
	Mean	SD	N	%	Mean	SD	Mean	SD	N	%	Mean	SD	Mean	SD	N	%	Mean	SD
Education
Sub-total: Education	8,430	2,057	26	31.7%	26,587	24,932	927	183	32	13.6%	6,838	4,240	7,349	1,644	33	38.4%	19,151	19,600
Health Care
Accommodation	0	0	0	0.0%	0	0	828	828	1	0.4%	195,468	0	0	0	0	0.0%	0	0
Inpatient care	1,837	1,542	8	9.8%	18,830	43,491	905	559	10	4.2%	21,364	37,969	74	62	2	2.3%	3,194	2,817
Outpatient care	288	65	24	29.3%	985	712	266	52	57	24.2%	1,102	1,324	148	41	18	20.9%	706	548
Community care	871	236	43	52.4%	1,661	2,730	576	85	115	48.7%	1,182	1,667	830	147	52	60.5%	1,372	1,528
Sub-total: Health Care	2,998	1,554	50	61.0%	4,917	17,821	2,587	1,369	127	53.8%	4,807	28,529	1,052	168	57	66.3%	1,587	1,683
Social Care
Accommodation	7,409	1,975	13	15.9%	46,625	7,049	1,986	653	10	4.2%	47,431	4,549	7,183	1,851	13	15.2%	47,158	3,219
Residential respite care	445	227	4	4.9%	9,128	2,948	30	30	1	0.4%	6,970	0	493	226	7	8.1%	6,055	4,816
Community care	6,541	2,839	42	51.2%	12,770	34,992	2,501	950	70	29.7%	8,433	25,961	4,014	1,538	37	43.0%	9,331	20,716
Sub-total: Social Care	14,395	3,798	51	62.3%	23,119	40,979	4,516	1,285	74	31.3%	14,418	32,898	11,691	2,826	44	51.3%	22,797	33,018
Total	25,824	4,256	66	80.5%	32,059	40,305	8,030	1,869	159	67.3%	11,929	34,164	20,091	3,053	71	82.7%	24,301	29,410

Note: Total costs may not add up due to a difference in the number of observations.

Service use and costs: carers

8.45 Tables 8.5 and 8.6 summarise the cost findings for the 520 carers of children with ASD and the 267 carers of adults with ASD respectively. Full details of annual health and social care service use and employment impacts as a result of caring for the individual with ASD are reported in Appendix D.3, Tables 11.34 to 11.37.

8.46 Across diagnostic groups, over two-thirds of carers of children with ASDs were in employment, averaging 26 working hours per week when in employment. Six per cent of carers of children with Asperger’s/ HFA reported visiting a general practitioner about every two months on average, while a few individuals indicated using some other health and social care services more than once a month (individual or group therapist, outreach worker). A few carers of children with autism had on average monthly visits to their general practitioner and to an individual or group therapist.

8.47 Similarly, across diagnostic groups, about two-thirds of carers of adults with ASDs were in employment, averaging 30 working hours per week when in employment. Five per cent of carers of adults with Asperger’s/ HFA saw a therapist (individual or group), averaging more than one visit a month. A few carers saw their general practitioner, averaging a visit every two months. Fewer than 5% of carers of adults with autism used individual or group therapy, and a few individuals saw a general practitioner, both about every month.

8.48 The overall cost for carers of children with ASD varied from £3,813 for carers of children with other ASD to £4,479 for carers of children with autism. The overall cost of carers of adults with ASD followed the opposite trend, varying from £1,612 for carers of adults with autism to £2,499 for carers of adults with Asperger’s/ HFA. Nearly all costs incurred by carers of individuals with ASDs were accounted for by productivity losses, which respondents attributed to needing to work part-time because of their caring responsibilities. The overall cost is higher for carers of children with ASDs than for carers of adults with ASD, almost double for carers of children with Asperger’s/ HFA and almost triple for carers of children with autism.

8.49 While costs for carers of children with ASDs are similarly high across diagnostic groups, the costs for carers of adults with Asperger’s/ HFA are 55% higher than costs for carers of adults with autism. Across groups, the most important health and social care costs for carers of children and adults with ASD are psychologist and individual or group therapists. While few individuals used those services, the high intensity was associated with high costs for those that did use them. When carers were not able to work full-time, productivity loss was higher for carers of children and adults with Asperger’s/ HFA than for carers of children and adults with autism, more than double for the latter in particular.

Table 8.5 Average annual service cost for carers of children with ASD, by diagnosis and sector (£, 2013/14) (N=520)

	Autism (N=129)						Asperger’s/ HFA (N=183)						Other ASDs (N=208)
	Total sample		Children with at least one contact				Total sample		Children with at least one contact				Total sample		Children with at least one contact
	Mean	SD	N	%	Mean	SD	Mean	SD	N	%	Mean	SD	Mean	SD	N	%	Mean	SD
Health Care	27	11	7	5.4%	504	264	115	34	25	13.7%	845	968	119	41	20	9.6%	1,239	1,519
Social Care	7	5	2	1.6%	477	26	8	5	4	2.2%	356	260	21	18	3	1.4%	1,472	1,905
Employment	4,444	458	72	55.8%	7,963	4,507	4,051	428	86	47.0%	8,621	5,659	3,673	342	97	46.6%	7,876	4,371
Total	4,479	458	75	58.1%	7,704	4,651	4,175	431	97	53.0%	7,876	5,909	3,813	345	108	51.9%	7,344	4,646

Note: Total costs may not add up due to a difference in the number of observations.

Table 8.6 Average annual service cost for carers of adults with ASD, by diagnosis and sector (£, 2013/14) (N=267)

	Autism (N=72)						Asperger’s/ HFA (N=129)						Other ASDs (N=66)
	Total sample		Adults with at least one contact				Total sample		Adults with at least one contact				Total sample		Adults with at least one contact
	Mean	SD	N	%	Mean	SD	Mean	SD	N	%	Mean	SD	Mean	SD	N	%	Mean	SD
Health Care	79	47	5	6.9%	1,136	1,171	138	80	10	7.8%	1,779	2,907	53	46	3	4.5%	1,157	1,596
Social Care	7	7	1	1.4%	495	0	10	7	3	2.3%	438	416	0	0	0	0.0%	0	0
Employment	1,527	241	36	50.0%	3,053	1,913	2,351	386	49	38.0%	6,188	5,186	2,237	542	27	40.9%	5,469	5,481
Total	1,612	244	41	56.9%	2,832	2,019	2,499	390	57	44.2%	5,655	5,155	2,290	540	30	45.5%	5,038	5,370

Note: Total costs may not add up due to a difference in the number of observations.

Lifetime cost

8.50 Table 8.7 reports the discounted average annual and lifetime cost for individuals with ASD with and without ID, and the productivity loss experienced by their carers, assuming individuals were diagnosed at birth. Details of non-discounted average annual costs per capita for people with ASD and their carers by place of residence are given in Appendix D.4, Tables 11.38 to 11.41.

8.51 Lifetime cost amounts to £925,503 (£886,321 incremental cost) for individuals with ASD without intellectual disabilities. The equivalent figure is 56% higher for individuals with ASD with intellectual disabilities: £1,651,453 (£1,587,206 incremental cost). Forty per cent of the lifetime costs for individuals with ASD without intellectual disabilities are accounted for by productivity losses for the individual and 26% by accommodation. Thirty-five per cent of the lifetime costs for individuals with ASD with intellectual disabilities are accounted for by accommodation and 25% by productivity losses for the individual. The productivity loss of parents and carers of individuals with ASD with ID is almost double that for carers of individuals with ASD without intellectual disabilities.

Table 8.7 Average annual and lifetime cost per capita for people with ASD and their carers, by level of ID, disaggregated by sector ( PV, £, 2013/14)

	People with ASD with ID						People with ASD without ID
	0-1	2-4	5-11	12-15	≥16	Lifetime	0-1	2-4	5-11	12-15	≥16	Lifetime
No. years	2	3	7	4	52	67	2	3	7	4	52	67
Accommodation	0	200	243	285	10,658	557,662	0	0	0	0	4,446	231,201
Education	0	9,308	17,417	17,036	1,838	313,565	0	9,426	8,676	5,765	758	151,503
Health and Social Care	276	4,907	6,557	5,599	1,737	173,628	276	4,961	3,842	1,584	1,092	105,157
Productivity loss	0						0
Productivity loss (individual with ASD)	0	0	0	0	7,758	403,397	0	0	0	0	6,857	356,567
Productivity loss (parents)	0	4,028	3,473	2,665	225	58,777	0	4,079	2,738	9,157	649	101,788
Benefits	0	3,799	3,413	2,820	1,882	144,424	0	480	405	335	0	5,613
Total costs	276	22,242	31,101	28,404	24,099	1,651,453	276	18,946	15,661	10,259	13,802	925,503
	0						0
Total costs (incremental) a	276	20,700	27,570	25,103	23,681	1,587,206	276	17,394	13,977	8,829	13,475	886,321

Note: ^a Adjusted by education costs (children only) and health and social care costs in the general population.

National costs

8.52 To calculate the overall national costs we combine data on the numbers of individuals with ASD with and without intellectual disabilities in Scotland ( Table 8.8), their distribution by living accommodation ( Table 8.9) and the average annual costs, disaggregated by sector ( Table 8.10). This generates the national annual cost for people with ASD and their carers, by level of intellectual disabilities, disaggregated by sector reported in Table 8.11. More detailed information on average annual costs per capita for individuals with ASD and their carers, by place of residence are given in Appendix D.4, Tables 8.22 to 8.25. Details on national cost for people with ASD and their carers in Scotland by place of residence are given in Appendix D.5, Tables 8.26 to 8.29.

8.53 The number of individuals with ASD in Scotland is estimated to be 44,133, almost two-thirds of whom do not have intellectual disabilities ( Table 6.1). Eighty-six per cent of them are adults. Almost all children and 69% of adults live in private households with family.

8.54 The national annual cost for individuals with ASD is estimated at over £2,292 million (£2,229 million incremental cost) ( Table 8.11). Ninety-three per cent of the costs are for adults with ASD. Overall, 38% of the national annual costs are due to productivity loss for the individuals with ASD and 35% due to accommodation. When considering the national annual costs for individuals with ASD by level of intellectual disabilities, 53% per cent of the total is attributable to individuals with ASD without intellectual disabilities. The largest cost components are productivity loss and accommodation for individuals with ASD both with intellectual disabilities (29% and 40% respectively) and without (47% and 30% respectively).

Table 8.8 Estimated number of individuals with ASD with and without ID

	ASD population			Mid-year population in Scotland 2014
	with ID	without ID	Total
Children (0-1)	40	81	121	116,880
Children pre-school (2-4)	415	122	537	175,320
Children primary school (5-11)	1,345	2,044	3,389	397,360
Children secondary school (12-15)	763	1,569	2,332	225,320
Adults (16-67)	12,346	25,408	37,754	3,647,720
Total	14,908	29,226	44,133	4,562,600

Note: Prevalence of ASD: 104 per 10,000 persons. Prevalence of ASD with ID: 34 per 10,000 persons. Prevalence of ASD without ID: 70 per 10,000 persons. Age at diagnosis: 3 and 7 for children with ASD with and without ID respectively. Only 10% of the individuals are assumed to receive a diagnosis earlier.

Table 8.9 Estimated number of individuals with ASD with and without ID by living accommodation

	Living in private households with family		Living in residential or foster care placement		Supporting people accommodation		Hospital
	with ID	without ID	with ID	without ID	with ID	without ID	with ID	without ID
Preschool (0-1)	39	81	0	0	NA	NA	0	0
Preschool (2-4)	410	122	5	0	NA	NA	0	0
Primary school (5-11)	1,328	2,044	17	0	NA	NA	0	0
Secondary school (12-15)	753	1,569	10	0	NA	NA	0	0
Adults (16-67)	5,926	20,073	2,963	4,065	3,333	1,270	123	0
Total	8,456	23,890	2,995	4,065	3,333	1,270	123	0

Note: Prevalence of ASD: 104 per 10,000 persons. Prevalence of ASD with ID: 34 per 10,000 persons. Prevalence of ASD without ID: 70 per 10,000 persons. Age at diagnosis: 3 and 7 for children with ASD with and without ID respectively. Only 10% of the individuals are assumed to receive a diagnosis earlier. NA- Not Applicable.

Table 8.10 Average annual costs per capita for individuals with ASD and their carers, by level of ID, disaggregated by sector (£, 2013/14)

	People with ASD with ID					People with ASD without ID
	0-1	2-4	5-11	12-15	≥16	0-1	2-4	5-11	12-15	≥16
No. of individuals	40	415	1,345	763	12,346	81	122	2,044	1,569	25,408
Accommodation	0	221	319	453	34,901	0	0	0	0	14,559
Education	0	10,316	22,881	27,085	6,019	0	10,447	11,398	9,165	2,483
Health and Social Care	280	5,438	8,614	8,901	5,689	280	5,499	5,048	2,519	3,575
Productivity loss
Productivity loss (individual with ASD)	0	0	0	0	25,403	0	0	0	0	22,454
Productivity loss (parents)	0	4,465	4,562	4,237	738	0	4,521	3,597	4,095	2,126
Benefits	0	4,211	4,483	4,483	6,162	0	532	532	532	0
Total costs	280	24,651	40,859	45,159	78,913	280	20,999	20,575	16,311	45,197
Total costs (incremental) a	280	22,942	36,219	39,911	77,547	280	19,278	18,362	14,036	44,126

Table 8.11 National annual costs for individuals with ASD and their carers, by level of ID, disaggregated by sector (£, 2013/14)

	People with ASD with ID						People with ASD without ID						Total
	0-1	2-4	5-11	12-15	≥16	Sub-total	0-1	2-4	5-11	12-15	≥16	Sub-total
No. of individuals	40	415	1,345	763	12,346	14,908	81	122	2,044	1,569	25,408	29,226	44,133
Accommodation	0	91,923	428,585	345,413	430,872,066	431,737,986	0	0	0	0	369,928,932	369,928,932	801,666,918
Education	0	4,284,804	30,770,907	20,654,274	74,308,916	130,018,900	0	1,275,743	23,299,659	14,384,709	63,093,587	102,053,698	232,072,599
Health and Social Care	10,950	2,258,863	11,584,259	6,787,897	70,236,025	90,877,995	22,821	671,520	10,317,959	3,953,168	90,833,454	105,798,922	196,676,917
Productivity loss
Productivity loss (individual with ASD)	0	0	0	0	313,613,396	313,613,396	0	0	0	0	570,519,676	570,519,676	884,133,072
Productivity loss (parents)	0	1,854,359	6,135,332	3,231,439	9,113,848	20,334,979	0	552,111	7,352,278	6,427,066	54,010,279	68,341,734	88,676,714
Benefits	0	1,748,928	6,029,277	3,418,856	76,077,946	87,275,006	0	64,968	1,087,482	834,962	0	1,987,412	89,262,418
Total costs	10,950	10,238,877	54,948,360	34,437,879	974,222,196	1,073,858,263	22,821	2,564,341	42,057,378	25,599,905	1,148,385,928	1,218,630,374	2,292,488,636
Total costs (incremental) a	10,950	9,528,962	48,709,392	30,435,287	957,354,538	1,046,039,130	22,821	2,354,212	37,535,305	22,029,730	1,121,163,829	1,183,105,897	2,229,145,027

Note: ^a Adjusted by education costs (children only) and health and social care costs in the general population.

Cost variation

Data for four subgroups were analysed to explore if cost variations were associated with personal characteristics: children with Asperger’s/ HFA, children with autism, adults with Asperger’s/ HFA and adults with autism.

8.55 The findings from our two-part models are reported in Tables 11.46 to 11.53 (Appendix D.6- D.7), the first part of each model for each subgroup identifying characteristics associated with any positive level of service receipt (as opposed to no receipt) and the second part identifying characteristics associated with variation in level of cost for those sample members with non-zero costs. Odds ratios are presented for the first-part models. In some instances, particularly for people with autism (Tables 11.46 and 11.53) where we have a smaller sample size, some independent variables could not be included within the models because there was no variation within sub-categories. For example, all female children with autism within the sample received at least one service (educaation, health and/or social care), and therefore sex could not be included when considering the associations with probability of use of any of these services (‘Total’ column within Table 8.32). Where this issue was prominent (and the sample size of these problematic categories was not negligible), the associations with receipt of services will be described below.

8.56 With respect to the second part of models (tables 11.47, 11.49, 11.51 and 11.53) the Manning & Mullahy (2001) algorithm for model selection suggested one of two different model types, depending on the cost category and subsample: an ordinary least squares model with a log dependent variable, or a non-linear least squares model using a non-transformed dependant variable. In the latter case, the sizes of effects are straightforward to interpret. If the variable is categorical, then the coefficient represents the cost change for this category over the base category entered within the model (e.g. a coefficient of 100 on female sex would mean that the cost for females is £100 greater than the cost for males). If the variable is continuous, then the coefficient represents the cost change per unit change in the variable (e.g. a coefficient of 100 for age would mean a £100 increase per year of age). Where a log-transformed dependent variable was used, the coefficients must be re-transformed to interpret the size of the difference; these are highlighted within the text where this is significant.

Cost variation: children

8.57 Tables 11.46 and 11.47 ( Appendix D.6) show the results of the analyses for children with Asperger’s/ HFA. With respect to the first part of the model ( Table 11.46), the lone significant result indicates that children with Asperger’s/ HFA within secondary school are less likely than those in primary school to be in receipt of health care services (OR<1). With respect to the second part of the model ( Table 11.47), individuals with OCD/Tourette’s utilised significantly more services from a health care perspective, with an additional cost of £43,599. This pattern persisted when considering total costs, where the significant coefficient corresponds to a cost increase to 2.8 (exp(1.03)) times the cost of individuals who do not have OCD/Tourette’s, almost tripling the total cost.

8.58 Tables 11.48 and 11.49 ( Appendix D.6) report the equivalent analyses for children with autism. Of each of the four models, only the one for social care costs proved unaffected by the issue of non-variance within categories and exhibits some significant results: females, older children and in particular children with ADHD were more likely to make use of social care services. Regarding the variables that could not be included, each of the 15 children with autism and ADHD received additional services funded by education. These individuals, along with each of the 30 female children with autism received some form of services (shown in the total column).

8.59 With respect to the second part of the model ( Table 11.49), we see some further significant results. Children with autism in secondary school had higher education costs, but 6% lower health care costs. Those living away from their parents were far more costly than those living with their parents – an increase in £72,852 for education and £33,361 for social care – which results in a total cost which is almost six times (exp(1.74)) the cost of those living with their parents. Children with ADHD had higher social care and total costs.

Cost variation: adults

8.60 Tables 11.50 and 11.51 ( Appendix D.7) summarise results for adults with Asperger’s/ HFA. Adults aged 16-17 were far more likely to make use of social care and education services than older adults, which is not surprising. It should be noted that none of the 11 individuals within ethnic minorities or 18 individuals with an ‘other’ highest level of education received additional education services. Furthermore, those from ethnic minorities were far less likely to be in receipt of services, both with respect to health care services and any of the three services, although again the sample size for this group was small. Individuals within a relationship were less likely to receive social care services compared to those who were not in a relationship. Highest education level also appears to be an important factor, with those with ‘no’ education or an access/foundation qualification being far more likely to be in receipt of social care services, or any of the three services (total column). With respect to co-occurring conditions, those with ADHD were more likely to receive social care services, whereas those with mood disorders (for example depression) were much more likely to be in receipt of health services.

8.61 Moving on to the factors associated with the level of receipt (or equivalently cost) for adults with Asperger’s/ HFA in receipt of services, the results indicate that those in a relationship have far lower social care costs (by a factor of 10; the unadjusted difference is five times smaller) compared to those not in a relationship ( Table 11.51). Adult students receiving services exhibited lower costs for both health care and social care compared to those in a different employment status. Those with ‘no’ educational qualification had higher social care costs than those with other qualifications.

8.62 Finally, tables 11.52 and 11.53 ( Appendix D.7) complete the analyses for adults with autism. It should be noted that this was the smallest subgroup, and this may have contributed to the finding of few significant associations. When investigating factors associated with higher probability of service receipt, those with a co-occurring condition related to mood were more likely to make use of health services, with older individuals (unsurprisingly) being less likely to make use of education services (both p-values are 0.05). Those living away from their parents had higher social care costs as well as total costs ( Table 11.53). Individuals with a highest education level of ‘other’ experienced far higher health care costs than those with other highest qualification level (approximately seven times as high), and a higher total cost.

Discussion

8.63 In this chapter we have described the service use and costs for individuals with ASD in Scotland taking part in the national survey, and estimated lifetime and national cost based on both the survey and other UK evidence.

8.64 Overall, the cost of supporting individuals with ASD during childhood was slightly higher than the cost of supporting them during adulthood. The cost of supporting individuals with ASD increased according to a gradient of severity, from individuals with Asperger’s/ HFA to individuals with autism. This suggests that individuals with most severe types of autism have more complex needs, thus requiring more support. A study in the US found that amongst individuals with developmental disabilities, those with higher needs were more likely to receive services and to have higher costs (Kang & Harrington, 2008), and a UK study found higher costs for young children with ASD with more severe impairments and higher needs (Barrett et al., 2012). The largest contributor to costs for children with ASD was education, with some of the services rarely used but associated with substantial costs (e.g. residential schools). The largest contributor to costs for adults with ASD was social care, mainly community care. Again, some of the services that were rarely used generated substantial costs for a few people (e.g. inpatient care).

8.65 Overall, for carers of people with ASD, the cost of caring for children was higher than the cost of caring for adults. The cost of caring for children with ASD increased according to a gradient of severity, from carers of children with Asperger’s/ HFA to carers of children with autism. A recent review of the literature highlighted the financial burden on parents caring for a child with ASD, due to both loss in productivity and high expenses (Bonis, 2016). Often parents need to leave the paid workforce to support their child at home, to solve school-related concerns, and to organise health, social care or other appointments. Also, they may decide to purchase private support when they are unable to access the support they feel they need from public sector services or because waiting times for such services are long. However, the cost of caring for carers of adults with ASD showed the opposite gradient with severity: from carers of adults with autism to carers of adults with Asperger’s/ HFA. This apparently counter-intuitive result may be due to the fact that ‘formal’ support for adults with Asperger’s/ HFA is limited compared to support for adults with autism, thus leaving carers to carry the responsibility.

8.66 The lifetime cost for individuals with ASD with intellectual disabilities was 56% higher than for individuals without intellectual disabilities. The main costs for individuals with ASD over the lifetime were accommodation and productivity loss. A recent study produced similar estimates of the lifetime costs for individuals with ASD, at £1.5 million and £0.92 million for individuals with ASD with and without intellectual disabilities respectively (Buescher et al., 2014).

8.67 The national annual cost in Scotland was almost £2.3 billion (£2.2 billion incremental), with 93% of the cost for adults and 7% for children. This amounts to £429 (£417 incremental) each year for every individual in Scotland. A previous cost-of-illness study using economic modelling estimated the national annual cost of supporting individuals with ASD at least £32.1 billion in the UK and US$ 47.5 billion in the US (Buescher et al., 2014). A similar study estimated the annual cost of ASD in Australia at AUS $9.7 billion (Synergies Economic Consulting, 2011).

8.68 The cost variation analysis showed that among children with Asperger’s/ HFA, those with co-occurring OCD/Tourette’s Syndrome had higher health care and total costs. Among children with autism, those with co-occurring ADHD or living away from their parents had higher social care and total costs.

8.69 Among adults with Asperger’s/ HFA, those from ethnic minorities used fewer services, but it should be noted that there were relatively few individuals within ethnic minority groups in the survey sample. Previous studies found under-representation of ethnic minorities among children referred for autistic assessment in the US and the Netherlands (Begeer, El Bouk, Boussaid, Terwogt, & Koot, 2009; Mandell et al., 2009). Another US study found that children and young people with developmental disabilities from ethnic minorities were less likely to receive support, and when receiving it they had lower levels of use as reflected in lower costs (Harrington & Kang, 2008).

8.70 Among adults with Asperger’s/ HFA, those in a relationship or with educational qualifications had lower social care costs. Among adults with autism, those living away from their parents had higher social care and total costs. These results suggest that either individuals with ASD living with parents or in a relationship are a sub-group of individuals who have on average less complex needs, or that parents and partners provide support through their caring activities which may substitute for formal social care services.

8.71 As previously mentioned there were a number of limitations that should be kept in mind when interpreting the results of the analyses reported in this chapter.

8.72 Firstly, the over-representation of people with ASD without intellectual disabilities and the under-representation of people with ASD living in residential settings in the survey suggest a need for caution in the generalisation of the results of the survey analyses. Secondly, the small number of individuals using some services meant that standard deviations for some service receipt data were high, thus limiting the accuracy of the cost when applying figures to a wider population. Moreover, due to the necessary limitations of questionnaire design the interpretation of outliers was not possible.

8.73 The use of 16 as the cut-off age for adulthood meant that some of the adults in the sample were still in secondary education, although this was controlled for as part of our multivariable analyses.

8.74 The absence of data in the survey on the intensity of educational services required us to use estimates drawn from previous studies, and in these cases we were careful to be conservative in our assumptions (i.e. not to over-estimate costs).

8.75 Information collected on health and social care service use by carers as a result of supporting individuals with ASD may be conservative due to the necessary limitations of questionnaire design. As previously mentioned, the carer data collected is useful in its own right, but because it was not collected exhaustively (unlike the data for individuals with ASD), there may be some services that were not reported.

8.76 Limited data from previous studies on the three diagnostic groups constrained our ability to disaggregate lifetime and national estimates beyond individuals with ASD with and without intellectual disabilities.

8.77 The broad heterogeneity of severity of the condition for individuals diagnosed with other ASDs in the survey led to the exclusion of this group from the cost variation analyses, as results would have been difficult to interpret.

8.78 Finally, cost variation analysis of the entire sample was not possible due to the non-generalisability of the sample and the difficulty in finding suitable data to weight the observations to reproduce a nationally representative sample.