April 2014 Asqas

Barriers to employment in autism: Future challenges to implementing the Adult Autism Strategy

Dr Beatriz López & Liz Keenan

AUTISM RESEARCH NETWORK Department of Psychology University of Portsmouth [email protected] www.port.ac.uk/department-of-psychology/community-collaboration/autism-researchnetwork/

Table of Contents 1. Introduction ........................................................................................................................................ 3 2. Evaluation of the Adult Autism strategy ............................................................................................. 4 3. Barriers to employment ...................................................................................................................... 5 4. Aims..................................................................................................................................................... 6 5. Survey: Format and administration .................................................................................................... 7 5.1 Survey format................................................................................................................................ 7 5.2 Survey administration ................................................................................................................... 8 6. Results ................................................................................................................................................. 9 6.1 Respondents ................................................................................................................................. 9 6.2 Work experience ......................................................................................................................... 10 6.3 Barriers to Employment .............................................................................................................. 12 6.4 Impact of the Adult Autism Strategy .......................................................................................... 13 7. Summary of findings ......................................................................................................................... 14 7.1 Implementation of the adult Autism Strategy ............................................................................ 14 7.2 Barriers to employment .............................................................................................................. 14 8. Recommendations ............................................................................................................................ 15 9. Conclusions ....................................................................................................................................... 16 10. References ...................................................................................................................................... 17

© Beatriz López and Liz Keenan This is an open-access report distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original authors and source are credited.

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1. Introduction The number of people diagnosed with Autism Spectrum Disorders (ASD) has risen exponentially in the past few decades from rates of 2 out of 10,000 in the 1970s to up to 1% (Baird et al, 2006) in recent epidemiological studies. Based on prevalence rates in 2012, it has been estimated that there are approximately 700,000 people with autism living in the UK (Brugha et al, 2012).The cost to the UK government was estimated at around £25 billion in 2009 (Knapp et al, 2009) and is likely to have grown to £34 billion in recent years (Prof Knapp Blog, 2012). These are striking figures, not only because they constitute a burden to the UK economy but most importantly because they reflect low levels of financial independence in people with ASD. This is confirmed by studies investigating employment rates in ASD populations. Unemployment rates in adults with autism vary across studies and country but they range from 75% (Engström et al, 2003) to 50% (Jennes-Soussens et al, 2006). Those who find employment however are likely to be in unskilled jobs with low wages (Howlin, 2000; Howlin et al, 2013; Migliore and Zalewska, 2012). This is especially surprising given that 47% of those adults with ASD who do not have learning disabilities attend higher education (Taylor and Seltzer, 2011). The absence of paid work, or regular activities, has been linked to deteriorating mental health and social exclusion (Emerson and Hatton, 2008; Jahoda, 1988) and poor quality of life (Billstedt et al, 2011; Burgess and Gutstein, 2007). Conversely, having a job has been shown to have positive effects in adults with autism in other areas of functioning, such as socialisation and expression skills as well as quality of life (Belcher and Smith, 1994; García-Villasamar et al, 2002; Wehman and Kregel, 1988). Given the high rates of unemployment and its consequences on mental health, lack of independence and the associated economic costs, it is not surprising that the UK government published a new strategy in 2010, the Adult Autism strategy which has as one of its main key targets to support people with autism into employment.

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2. Evaluation of the Adult Autism strategy It is too early to evaluate the impact that this strategy has had on the lives of people with autism and their families. However, anecdotal evidence from Portsmouth City Council and Hampshire County Council, suggests that the publication of the strategy has had a range of positive outcomes already. First, the consultation events organised by local councils have provided a forum where the voices of people with autism and their families have been heard. Second, the development and implementation of the strategy has required communication across different services which has resulted in increased coordination and communication. A particular area of improvement has been seen in the concerted efforts that have been made to integrate adults and children services. Thirdly, specific diagnostic pathways and services have been put in place to facilitate access for practitioners, adults with autism and parents to these services. Finally, requests from both large and small companies for training events focused on ASD have surged nationwide. The effectiveness of the implementation of the strategy in terms of employment is more difficult to assess at this stage, as no research has been conducted to investigate whether employment rates have increased as a result of improved access to employment programmes and Job Centres. However, an indication of the recognition of the importance that employment has on the lives of people with autism and their families can be seen in the amount of research conducted prior and after the publication of the strategy. There has been a steady increase in the number of publications focused on employment in autism since the 1980s. While in the decade spanning from 2000 to 2009, only 29 publications were identified in a Google Scholar search (search terms: Autism and Employment in the title), in the first 4 years since the publication of the strategy the number has risen to 49. In fact, in the last 4 years alone there have been more publications on employment in autism that in the previous 30 years. Despite the positive impact that the strategy has had, in terms of employment, the implementation of the strategy has been difficult. First, resources in Job Centres are stretched and hence providing additional support for people with autism is proving difficult. Second, although Job Centres have specialist programmes for people with

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intellectual disabilities, these programmes are not accessible for adults without intellectual disabilities who do not meet the criteria for Disability Support Allowance (DSA). This poses a significant risk for adults with autism who do not have intellectual disabilities and for the success of the implementation of the strategy. Already Taylor and Seltzer (2011) identified that adults with autism without intellectual disabilities are particularly vulnerable as few services are available to them and, as a result, are more likely to develop mental health problems from lack of regular daily activities (Taylor & Seltzer, 2011). The first aim of this study was to conduct a survey among practitioners to examine their views regarding the implementation of the strategy in terms of local guidelines, training and future needs.

3. Barriers to employment The second aim of the study was to investigate the extent to which people with autism and their carers feel adjustments are made in the workplace. Low rates of employment in autism are explained primarily by two factors; a difficulty in finding employment and a difficulty in retaining employment. There are a variety of employment schemes in place in the UK for people with ASC (e.g., Prospects, National Autistic Society) which offer pre-employment training, and in some cases, disability awareness to employers. Overall, these schemes have been shown to be highly effective in terms of the number of people who achieve full time paid employment and the costs associated to it (Howlin et al, 2005; Mavranezouli et al, 2013; Mawhood and Howlin, 1999). In contrast, there is little research into the factors that contribute to low job retention rates. Despite the many qualities of people with ASD such as attention to detail, honesty, persistence and reliability (Howlin, 1997), people with ASD find it difficult to hold a job (Howlin, 2000), switch jobs often and have difficulties adjusting to job settings (Hurlbutt and Chalmers, 2009). Adults with ASD are also more likely to lose their employment for behavioural and social interaction problems rather than inability to perform the job (Dew and Alan, 2007). According to Hurlbutt and Chalmers (2009)

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the difficulties encountered go way beyond the skills needed to fulfil the job role but relate to social aspects of the job, sensory issues and executive function difficulties. The Autism Act (2009) and Equality Act (2010) specify that employers have the duty to make reasonable, necessary adjustments in the workplace for people with special needs and autism. However, little research has been conducted to assess the extent to which are the precise adjustments needed for people with ASD, or the extent to which employers make these adjustments (Hagner and Cooney, 2005; Hurlbutt and Chalmers, 2009). This study aimed to investigate the views of practitioners, adults with ASD and carers regarding the most common barriers encountered by people with ASD on the road to successful employment.

4. Aims

This study had two main aims: 1. To investigate practitioners’ views on the implementation of the Adult Autism Strategy (2010) regarding training and employment targets 2. To identify the barriers people with Autism Spectrum Disorders (ASD) encounter on the road to successful employment

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5. Survey: Format and administration 5.1 Survey format Practitioners survey The survey comprised of 19 questions divided in three sections. Section 1 (5 questions) asked about demographic information such as gender, age, job title and main duties and responsibilities. Section 2 (8 questions) asked about training. Examples of questions included: -

Has any of the training you have had covered employment issues? (training content)

-

How has this training been delivered? (delivery mode of the training)

-

If you had autism training, do you feel it has been as a result of the Adult Autism strategy? Do you feel the strategy has made a difference to availability and access to autism training (training as a result of the Adult Autism Strategy)

-

In your view, what has been the quality of the training you have received? (quality)

Finally, Section 3 (6 questions) asked about their views on the implementation of the strategy. Examples of questions included: -

Please state below what improvements you have noticed since the strategy was implemented?

-

In your view, do local guidance documents for the Adult Autism strategy address the targets regarding employment for people with autism?

Survey for adults with autism The survey comprised a total of 30 questions with had mixed formats of multiple choice and open-ended answers. The questionnaire was divided into 4 sections. Sections 1 and 2 contained 8 questions about the respondent’s characteristics such as age, gender, diagnosis, sources of social support and type of education. A third section (19 questions) asked specifically about employment history Examples of questions included:

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-

How many paid jobs have you had in the past? Are you currently in paid employment? (employment history)

-

If you have changed jobs, what are the main reasons for deciding to leave a job? (job retention)

-

What helped you find a job? (sources of support to find employment)

-

What support have you had at your current job? (support provided in the workplace)

-

Which of the following adjustments have been made for you at your work place? (adjustments in the work place)

The last section mirrored the employment section but concerned volunteering. Survey for carers of individuals with autism The survey for parents was the same as for adults with autism except for two changes: firstly, this survey contained questions on demographic information for both the carer and the person with autism for whom they care; secondly, the wording of the questions was changed from second to third person (i.e., ‘Have you ever been in paid employment?’ was changed to ‘Has he/she ever been in paid employment?’).

5.2 Survey administration The survey was submitted for ethic scrutiny to the appropriate ethical board in the University prior to its dissemination. The platform used for online completion was Surveymonkey (www.surveymonkey.com). A link to the survey was then placed on the Autism Research, Policy and Practice Hub (www.autismrpphub.org), which hosted an employment in autism event from December 2013 to March 2014. This event was organised jointly by the Wales Autism Research Centre and the first author. The link was also disseminated via the emailing list of the Autism Research Network, which currently has over 200 contacts including adults with ASD, carers, practitioners and policy makers. The first page of the survey contained information about the survey and asked for consent. The survey opened on the 5th December 2014 and was closed on the 30th January 2014.

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6. Results 6.1 Respondents Adults with ASD: Fifty-four adults within the autistic spectrum completed the survey. Eight respondents were excluded from the final sample; one person that was not based in the UK, 4 people who reported no diagnostic information or not having had a formal diagnosis and 3 people who submitted incomplete surveys. The final sample included 46 respondents (15 female). See Table 1 for respondents’ characteristics. Carers: Fifty-three people submitted responses. The data of 8 respondents were excluded because either they reported on a range of individuals (n=2), were not based in the UK (n=2) or submitted incomplete surveys (n=4). The data from 10 carers of children aged 6-15 years were further removed from the analysis as the children were too young to have ever been employed. The resulting 36 respondents (31 females) had a mean age of 53.33 years (SD= 10.67). The majority of carers were mothers (n=28), the other being fathers (n=4), a grandmother, a wife and 2 support workers. Ten responses concerned young people aged 16-18. These responses came from 9 carers, as one parent reported on two young adults in that age range. There were 27 respondents reporting on young adults aged 19+. Please Table 1 for their characteristics. Practitioners: Forty-one practitioners submitted the survey. Three participants were excluded: two because they were not based in the UK and one respondent submitted an incomplete survey. The resulting 38 participants (30 females) were aged between 2164 years of age (Mean=44, SD=11.26). There was a broad range of job titles including clinicians, therapists, educators, support workers and advisors. Seven respondents (20%) described employment related activities in their main duties, 13 (37%) worked with people with learning disabilities, 8 (22.9%) made specific reference to autism in job title or main duties and 6 (17%) worked with children or young people in education.

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AASD

16-18 Yrs

19+ years

n=46

n=10

n=27

Mean

39.7

17.2

25.07

Standard deviation

13.1

0.92

11.44

Asperger Syndrome

35

5

17

High-Functioning ASD

8

2

7

ASD

2

-

1

Low-functioning ASD

-

3

2

Developmental Disorder

12

1

6

Mental Health

4

1

2

Combination of above

4

3

2

Mainstream

40

3

15

Special Need school

5

4

7

Other

1

3

5

Age Diagnosis

Comorbidity

Schooling

Table 1. Characteristics of AASD (self-reported) and young adults with ASD (as reported by carers).

6.2 Work experience Work history:

Forty-three out of 46 (93.5%) AASD respondents had been in

employment. Of these, 26 were currently employed (60.4%). While 40.5% (n=15) of AASD respondents had spent less than a year on average in a job, 59.5% (n=22) had been over a year on average in a job. Not surprisingly, there were only 2 out of 10 (20%) carers of young people with ASD aged 16-18 who reported the person with ASD ever been in employment. Their data for subsequent questions were therefore removed from further analysis. The responses of Carers of people with ASD aged 19 or over, indicate that 59% (n=16) of the people with ASD they cared for had been in employment, of which 37.5% (n=6) were in current employment. See Table 2 for details. Support in finding employment: Of the 26 AASD in current employment 69% (n=18) reported having no help to secure employment, while the remaining 31% (n=8) had had help from various sources, in some cases more than one source was cited. These included friends and family (n=8), Job Centres, Social Services and Career services in college (n=9). Of the 6 young people aged 19+, who were reported to be in current

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employment by their Carers, all had had help from friends and family, social services and employability services. See Table 2 for details. AASD

Carers 19+

Yes No

93.5% (n=43) 6.5% (n=3)

59.2% (n=16) 40.8% (n=11)

< 1 year 1 year +

40.5% (n=15) 59.5% (n=22)

50% (n=6) 50% (n=6)

Family /Friends

22.9% (n=8)

60% (n=3)

Professional help No help

25.7% (n=9) 51.4% (n=18)

40% (n=2) -

Ever been in employment Average stay in a job Support in finding employment*

Support in the work place*

Understanding employer Mentor Employment programme No support

40% (n=14)

62.5% (n=5)

31.4% (n=11) 14.3% (n=5)

25% (n=2) 12.5 (n=1)

14.3% (n=5)

-

Yes

61.5% (n=16)

60% (n=3)

No

38.5% (n=10)

40% (n=2)

Adjustments in the workplace

Table 2. Characteristics of work experience of individuals with autism (self-reported and as reported by carers). * Please note that respondents could identify more than one option. Percentages are calculated on the basis of the total responses given. Support in the work place: Of the 26 AASD in current employment 19.2% (n= 5) reported having no support at work in contrast to only one carer of a person with ASD aged 19+ reporting lack of support. The type of support reported to be provided at work included understanding employers, having a mentor or being part of an employment programme (see Table 2 for details). In terms of adjustments in the work place, 61.5% (n=16) of AASD reported that no adjustments had been conducted by their employer while 60% (n=3) of the carers of young people with ASD aged 19+ reported that adjustments had taken place. The adjustments reported included having a person to talk to, sensory adjustments and adjustments to the timetable and tasks.

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6.3 Barriers to Employment As can be seen in Table 3 the most common barriers identified as preventing people with ASD to either find or retain a job related to External barriers with rates of 74.4% (n=32) of responses from the practitioners group, 77.8% (n=19) from responses in the Carers group and 100% (n=28) in the AASD group. Within this category, lack of support by services and difficulties with interview and application process only accounted for 30.2% (n=8, Practitioners) and 14.2% (n=4, Carers) of responses. The remaining responses referred to two categories: employers’, and staff, lack of understanding of the condition and failure to make reasonable adjustments in the workplace. These responses accounted for 37.2%, 53.6% and 78.5% of responses from practitioners, carers and AASD, respectively. Practitioners (n=43*)

Carers (n=28*)

Adults with ASD (n=28*)

11.6% (n=5) 18.6% (n=8)

7.1% (n=2) 7.1% (n=2)

-

20.9% (n=9)

39.3% (n=11)

35.7% (n=10)

16.3% (n=7) 7% (n=3)

14.3% (n=4) -

42.8% (n=12) 21.5% (n=6)

18.6% (n=8) 7% (n=3) -

7.1% (n=2) 10.7% (n=3) 14.3% (n=4)

-

External barriers Services Application and interview process Employer and staff lack of understanding Failure to make adjustments Other Internal barriers Condition related Confidence Lack of coping strategies

Table 3. Barriers to employment identified across groups.* n refers to the number of responses given and not the number of respondents as the survey allowed for more than one answer. Few responses referred to internal variables such as lack of confidence, difficulties inherent to the condition (e.g., social interaction and communication problems) and difficulties coping with the job demands (see Table 3 for details of percentages). It is striking that while practitioners and carers highlight these difficulties in 25% and 32% of cases, none of the AASD viewed these as preventing them from having a job.

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6.4 Impact of the Adult Autism Strategy Responses relating to the impact of the Adult Autism Strategy stem from the practitioner group only. The surveys for carers and AASD did not contain questions on the strategy as it was felt that they would not be able to judge whether the strategy has had any impact as it is too early in its implementation (for a summary see Table 4). Training: 23% (n=8) of the practitioners who had received ASD related training felt that their training had been a direct result of the strategy, while 74% (n=26) of practitioners felt the training had not been a result of the strategy. Of the 29 respondents to the question regarding whether the strategy had made a difference to availability of training, 55% (n=16) felt that the strategy had made a difference while 45% (n=13) had not noticed any difference. Local Guidance documents: Twenty-five practitioners responded to the question relating to whether local guidance documents addressed employment targets. Of these, 52% (n=13) felt that the local guidance documents has addressed employment targets and 48% (n=12) did not feel the documents addressed employment targets. Improvements due to Adult Autism strategy: Only 16 practitioners replied to this question. Of these, 25% (n=4) reported increased awareness and 25% (n=4) reported no or little improvements. The remaining respondents commented on positive outcomes such as funding for support services and good documentation (n=5) or provided critical comments (see below for details). Yes

No

23% (n=8)

74% (n=26)

Increased availability of training

55% (n=16)

45% (n=13)

Local guidance documents address employment targets

52% (n=13)

48% (n=12)

Improvements in services as a result of strategy

25% (n=4)

25%(n=4)

Training resulting from the strategy

Table 4. Practitioners views of the impact of the Adult Autism strategy. Future needs: Practitioners highlighted the need for more training and awareness not just in the public sector but also across all sectors (50%, n=8), the creation of apprenticeships and work experience (12.5%, n=2). Other needs identified included practical guidance on reasonable adjustments, moving on from emphasis on CV and interview skills and the creation of a helpline.

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7. Summary of findings 7.1 Implementation of the Adult Autism Strategy Practitioners’ views regarding the implementation of the Adult Autism strategy are mixed. On the one hand, responses reflect positively on the implementation of the strategy as 55% of practitioners agree that the strategy has increased training availability, 23% report having been trained as a direct result from the strategy and a further 52% agree that local guidelines documents address the employment targets. Qualitative comments highlight as positive outcomes of the strategy improvements to support

services

and

good

documentation.

On

the

other hand, not all practitioners evaluated the implementation positively which suggests that there is still room for improvement. Specifically, 45% have not seen any improvement to availability to training opportunities, 25% perceive that the strategy has made no improvement to services and 48% believe local guidelines documents do not address employment targets. Practitioners identified two main areas in need of further development; increased awareness not only in the public sector but across all sectors (50% of respondents) and the creation of work experience and apprenticeship opportunities (12.5% of respondents).

7.2 Barriers to employment The views of practitioners regarding the need to increase awareness across all sectors mirrors the views of Carers and AASD who report lack of understanding from employers and staff as one of the main barriers to employment (39.3% and 35.7% of respondents, respectively). The second main barrier to employment reported was failure to make adjustments in the work place with rates ranging from 14.3% (Carers) to 42.8% (AASD).

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8. Recommendations 1. Employers and staff awareness training The findings from this study suggest that more needs to be done in terms of addressing employers and staff awareness training. Specifically, the findings suggest a need to increase awareness across all sectors and not just public services. Research investigating interventions to promote employment (Howlin et al, 2005; Mavranezouli et al, 2013; Mawhood and Howlin, 1999), and local support services have a major focus on the development of CV writing, jobs searching, interviewing and communication skills. More research needs to investigate the factors that influence engagement of employers across sectors. 2. Individual needs assessment The findings suggest that employers fail to make reasonable adjustments in the workplace and that this is a major barrier to successful employment. The unique ways in which each individual both interacts with and processes information about their environments are particularly complex and not readily understood by their neurotypical employers, colleagues and supporters. Many difficulties will present in subtle ways which are neither easy to detect by others nor to communicate to others by the person with ASD, given their communication difficulties (Tager-Flusber et al, 2005). In the absence of appropriate and reasonable adjustments, this may have a major impact on performance and behavior in the workplace and a negative impact on the employee experience, leading to potentially harmful effects of work related stress. It is crucial that future research focuses on the development of assessment tools that allow for the effective evaluation of reasonable adjustments needs for a specific individual with ASD, rather than relying solely on generic advice to employers. 3. Generic advice Some general recommendations may be put forward. According to one study, acoustics were ranked as the most influential architectural factor when it comes to autism (Mostafa, 2007) and therefore efforts to minimize acoustic disruption should be made. While sound proofing of a work place can be too costly, background noises, such as electrical noise or conversational noise, can be controlled or removed quite cheaply. A careful assessment of the individual needs of the person with ASD needs to be made as although it has been proposed that it may be beneficial to have private, quiet areas were the person with autism may go when feeling overwhelmed (Herbert, 2003), segregating

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people with autism by assigning them separate rooms can lead to them feeling different to the majority (Madriaga, 2010). Davidson (2009) suggests that lighting can make a big difference for people on the autistic spectrum. If possible, he argues, it is best to avoid fluorescent lighting as it cycles on and off 60 times per second, and for someone with hypersensitivity to visual stimulation this can feel like a strobe light. Hence the use of lights and lamps that reflect upwards rather than downwards is recommended (Davidson, 2009). Alternatively, it is recommended to focus on natural lighting as transparency of windows and doors would not only make the room brighter, but also help to create an easier transition between the work spaces (Vogel, 2008). Other difficulties people with ASD encounter at work related to executive function impairments (see Hill, 2004; Ozonoff et al, 1991). These difficulties can be ameliorated by having an understanding person willing to help or, alternative, by having organizer aids (Hagner and Cooney, 2005). These can take the form of visual individual work systems (Hume et al, 2009) or Personal Digital Assistants (PDAs; Burke et al, 2010).

9. Conclusions The findings from this study indicate that while the strategy has had some positive impact there are still areas in need of development. Practitioners’ views regarding the success of the implementation of the strategy in relation to training and employment are mixed. As many practitioners report improvements to services as they report no improvements. Views in relation to how local guidance documents address employment targets are also split. In terms of barriers to employment, lack of understanding from employers and staff and failure to make adjustments in the work place were identified as the two main barriers people with ASD encounter. We suggest that the failure to make reasonable adjustments in the work place is partly explained by a lack of understanding on the employers’ part but also due to the complexity of the condition. There is evidence of heterogeneity of symptoms in ASD (Valla and Belmonte, 2013) and therefore wide variability in individual needs. Hence, general awareness training packages may increase employers understanding of the general needs of individuals with ASD; however they are unlikely to succeed in increasing understanding in respect of the needs of a specific individual. Future research should focus on the development of assessment tools for evaluating individual needs in the work environment.

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