This chapter should be read in conjunction with the following chapters: Children and Young People with Complex Needs; Healthy Lifestyles and Long Term Conditions; Physical Disability; Adult Unpaid Carers;
Recommendations
Third sector, Cardiff and Vale University Health Board and Cardiff and the Vale of Glamorgan Local Authorities to:
- Continue to develop opportunities for co-production, and the involvement of autistic
people in decisions around their care and support plans - Improve data collection to better understand the number of autistic people, and
associations with socio-economic deprivation and language needs. - Embed the Code of Practice in the delivery of Autism Services
- Develop inclusive recruitment, for example, through the Disability Confident Scheme
(200) or Positive About Working with Autism Programme (77) - Improve wider societal awareness of autism and develop a supportive culture
Cardiff and the Vale of Glamorgan Local Authorities to: - Develop accessible and flexible respite services
Cardiff and Vale University Health Board to: - Reduce waiting list times for assessment by the Integrated Autism Service
Overview
Autism spectrum disorder describes “the group of complex neurodevelopmental symptoms of variable severity, that are characterised by challenges in social interaction and Communication and by restricted or repetitive patterns of behaviour, thought and sensory feelings”. Language in this chapter will align with the Welsh Government’s Code of Practice on the Delivery of Autism Services, where “autistic people” is used instead of “people with autism”, as preferred by those who contributed to the document (78).
In Cardiff, there are 1,370 autistic children and young people aged 0-17, and 509 in the Vale of Glamorgan. For those aged 18+, there are 3,201 autistic people aged 18+ in Cardiff, and 1,165 in the Vale of Glamorgan (94). Note that not all autistic people will have been diagnosed. The needs of autistic children and young people are considered in chapter 6.
The content of this chapter was developed using existing literature, strategies and reports and triangulating findings with professional leads and engagement work: 27 survey respondents who had learning disability or autism (note that not all respondents answered all questions); 1 autistic person in an interview; and 61 respondents of the provider survey supported people with learning disability or autism). It should be noted that the views of those engaged are not representative of all autistic people in the population of Cardiff and the Vale of Glamorgan, but do provide rich information about their lived experiences.
What has changed since 2017?
Pre-COVID-19
Nationally, the following has been implemented since the 2017 Population Needs Assessment
The Autistic Spectrum Disorder Updated Delivery Plan 2018-2021 was published (77), as well as the Code of Practice on the Delivery of Autism Services 2021 (78). The Code sets out the range of support services for assessment, diagnosis, health and social care and broader work around training and awareness raising.
Within Cardiff and Vale University Health Board:
The Integrated Autism Service (IAS) was formally launched in Cardiff and Vale in September 2017, although it has been operational since September 2016.
COVID-19
Mental health
Across Wales, negative mental health impacts were particularly significant for autistic people during the pandemic, specifically depression and anxiety. This may be linked to social isolation and the financial impacts of COVID-19 restrictions (79). Lack of access to self-help activities further compound isolation (79). The ‘Locked Out’ report intersectionality reference group reported that following cessation of support for young trans people, trans autistic people had particular difficulty (79). The report identified that ambiguity around regulations has been particularly stressful for autistic people, in part due to “vigilantism” by others (79).
An interview conducted for the Population Needs Assessment identified the following concerns: “my office closed because of COVID, I’m worried I might have forgotten how to do some of the things in my job. I was worried about going on the bus or being in busy places”. Prior to COVID-19, 13 of 24 survey respondents who reported that they had learning disability or were autistic, felt lonely some or all of the time, whereas by October 2021, 18 of 24 felt lonely.
Impact on care and support provision
Face to face services were paused in line with government restrictions. For some clients and staff, this was difficult due to a reduction in access to services, or a dislike of alternative provisions of care (for example, virtual appointments). For some carers, this exacerbated stress and fatigue. However, for some service users, the lack of face to face services was beneficial, as the demands on them were reduced. In addition, for those who lacked transport, virtual services are more accessible. The IAS had increased waiting times for new appointments and as at August 2021 it was 18 months (215). The Delivery Plan recommends a 26 week waiting time target from referral to assessment (77). During the 4 months where face to face services were stopped, no new diagnoses were made. However, support for autistic adults, carers, and professionals was provided through non-face to face mechanisms (76).
Providers of care and support for people with learning disability and autism responding to the survey identified that service users were increasingly reliant on family members; had difficulties with isolation, mental health, financial hardship, and increasing behaviours of concern. There was also a lack of respite for carers.
Impact on workforce
Difficulties staffing services was observed during the pandemic, due to staff illness or selfisolation, or due to staff leaving. Respondents of the provider survey had provided more online or telephone services; and some had had to reduce the services that they offered.
What are the care and support needs?
Individual
Independence and person-centred care
Professional leads identified the need to support individuals to develop skills to enable them to live as independently as possible. This was echoed in an interview conducted for this assessment: “I want to be taught how to do things so I will be able to cope after mum and dad are dead, worried I might not be taught enough while they are still alive”. This individual felt autonomous, stating: “I tend to try hard to do things, and when I come to the conclusion that I can’t do things by myself I tend to ask”. A case study from Cardiff and Vale IAS reported in the National Autism Team 2019/20 Supplementary Annual Report states that the case had previously found it difficult to work with mental health professionals as they
did not understand the case; however, the case was able to develop good rapport with the IAS Assistant Psychologist, which helped subsequent therapeutic interventions (216).
Language and communication
Welsh Government has published a Welsh language impact assessment on the Code of Practice for the Delivery of Autism services (217). In addition to this need nationally, regionally survey respondents wanted better support and wider understanding of nonverbal communication, with increased access to Makaton.
Community
Integrated Autism Service
The IAS provides diagnostic assessment of autism for adults who do not have a learning disability or meet the criteria for secondary mental health services; and their families, carers and professionals. Data from the IAS from 2020/21 shows that 1,589 people sought support from the IAS, of which 1,186 were new referrals from a range of people: 585 for diagnostic assessment or support for autistic people; 504 from professionals requesting training, advice or consultation; and 97 were carers requesting support. Over the year, 88 diagnostic assessments were provided (mostly in the last quarter, due to COVID-19 restrictions). This figure prior to the pandemic and in the financial year 2021/20 is significantly greater (76).
Access to timely diagnostic assessment is important, as demonstrated by feedback to the IAS. The IAS contributed the development of the Autism Code of Practice due to be published in 2021 and are represented in the National Autism Advisory Group.
Transport
Professional leads identified the need for accessible and affordable transport, especially in the Vale of Glamorgan, which is more rural than Cardiff. This was echoed by the interviewee: “my bus pass is helpful. It means I can get to work”.
Respite
Professional leads identified that carers of autistic people needed respite that was accessible, and flexible.
Wider determinants of health
Culture
The social model of disability has been formally adopted by Welsh Government, which recognises that a person with an impairment can become disabled by societal barriers, such as attitudes, physical and organisational infrastructure. The social model of disability enables people to feel and be more included (78).
The interviewee stated that the most important point they wanted to convey was around a lack of
understanding from people around them.
Professional leads felt that autistic people are increasingly included in terms of public sector
consultations, but there is still improvement to be made in terms of working towards true coproduction.
Deprivation
No local data are available on the socio-economic characteristics of autistic people. Support provided by the IAS includes guidance on benefits and employment. The Code of Practice asks organisations to promote inclusion of autistic people (78). Increasing awareness of inclusive recruitment will enable more autistic people to gain higher quality jobs in Wales (200)
Skills development
Professional leads are working to improve skills development for autistic people, through liaising
with local colleges to provide voluntary work and non-accredited courses. This will enable people to
gain experience of college life, and contribute to promoting independence.
Work-based learning provision in Cardiff for autistic people included 10 apprenticeships and 15 traineeships; fewer than five people were in apprenticeships and traineeships in the Vale of Glamorgan in 2019/20 (218).
Survey respondents with learning disability or autism were mostly in work or education prior to COVID-19 (15/24). In October 2021, 14 remained in work or education. Four did not work due to illness or disability; and three were caring for a family member.
Housing
Professional leads identified the need for supported / sheltered accommodation for some autistic people; currently individuals may have mental health placements but they are not sufficiently tailored in terms of support. Adult placements have been a positive experience, especially where people have been placed in a family home. Stakeholders have identified the need for a specialist autism facility for people in crisis in Wales.
The interviewee raised concerns about maintaining independence at home in the future, suggesting the need for support in advance of possible life changes: “I’m worried about coping in my property when Granny is gone (granny is 97). I’ve had some good starts when granny has gone out”
Unmet needs
Survey respondents wanted more autism-specific support, and age-appropriate inexpensive social groups and activities locally. The interviewee added that social connections were important: “having more opportunities to make friends and meet people my own age would be good.”
Gaps in knowledge and understanding included:
- Lack of data on the number of autistic people in our population (with and without
learning disability) - Lack of data on accommodation needs for autistic people
- Lack of data on the Welsh language profile and deprivation levels amongst autistic
people
What are the range and level of services needed?
Prevention and assets
Advocacy work supporting specific challenges faced by autistic people enables person centred care provision, appropriate signposting to other services, and confidence building (76). Appropriate and early referral to the right sources of support helps prevent further needs arising or escalating.
Assets to support well-being
The interviewee and survey respondents identified a number of sources of support including family, who also help with money and appointments, and support from other autistic people. Within the community, they identified work (paid and voluntary) as a particularly important support, and specialist services such as Ysgol Y Deri. The programme Engage to Change was identified as supportive of employment. Church was also helpful: “going to church helps me to understand other people”, as were opportunities to exercise. The IAS is an asset, identified as such by feedback provided to the service (76), and by the
interviewee. Other sources of support include Autism Wales, who provide support on a range of topics from financial management to dental care. Professional leads identified Dewis Cymru as a helpful resource.
Community services
Pathway approach
The IAS employs a pathway approach, so that autistic people and their carers can receive support throughout their journey. This includes an Autism Post-diagnostic Support Group. (76).
Partnership approach
Multi-sectoral working
The IAS has partnered with a range of agencies including the Welsh Local Government Association, the National Autism Team, third sector, local authority, and mental health services, and is open to autistic over the age of 18. The IAS promotes autism advocates and develops support networks. The Spectrum Star (an outcome measure focussing on the service user) is used to structure support (76). According to Welsh Government, sectors outside of health and social care need to be involved in training and awareness raising to develop a supportive culture (77)
What is likely to happen in the future?
The number of people aged 18-64 with an autism spectrum disorder is expected to increase by about 13% (425 people) between 2017 and 2035, with one third of the increase in the 35-44 year old age group. The biggest increase by proportion is in those aged 75+, with an anticipated 75% increase (230 people) between 2017 and 2035 (92). The Code of Practice for the Delivery of Autism Services plans for Autism to become its own chapter in future Population Needs Assessments (78)