Autism is a term used to describe people with a group of complex neuro developmental symptoms, of variable severity which affects how people communicate and interact with the world. Autism is generally described as a spectrum and can cover a wide range of behaviours and needs. Autism was covered under the Learning Disability chapter in the 2017 Population Assessment. However, in response to the introduction of the Autism Code of Practice in 2021, a separate Autism chapter is being developed.

The term ‘autistic people’ rather than ‘people with autism’, reflects the language preferences expressed by autistic people. The term ‘people’ refers to children, young people and adults.

Estimates of the prevalence of autism spectrum disorders suggest rates of around 1% in the general population. This would suggest there are about 4000 autistic people living in West Wales. However, there is much debate and the suggestion that not all individuals are identified (Brugha et al., 2011, 2016; Chiarotti & Venerosi, 2020; Fombonne et al., 2021; Lyall et al., 2017) [1][2][3][4][5]

New services for adult diagnosis have been set up across Wales at a time of rising awareness of the spectrum of autism experiences; however, until recently no studies have examined adult autism prevalence in Wales.

Increased rates of diagnosis and more prevalence of autism will require more specialist support in the community.

Autistic Spectrum Disorder is thought to affect 1 in 100 people in the population (Baird et al, 2006). The research shows that there is a high rate of co-morbidity between Neuro-developmental disorders (ND) e.g. Autistic Spectrum Disorders (ASD)/Attention Deficit Hyperactivity Disorder (ADHD), and also of other mental health conditions. The National Autistic Society reports that males are three times more likely than females to be diagnosed as autistic.

Since the 2017 Population Needs Assessment, the needs of Autistic people have been recognised as a separate requirement to Learning Disabilities. This recognition of the needs of Autistic people, be they children or adults, is also reflected within the Welsh Government’s Autism Code of Practice.

The Code of Practice sets out what autistic people, their parents and carers can expect from public services in Wales and how Welsh Government intend to adapt the way we organise society to be more aware and more attuned to neurodiversity.

The Code of Practice recognises that whilst some autistic people may have a co-morbid learning disability or mental illness, many will not, yet will still at times require specific advice, help and support.

In March 2016, as part of the refreshed Autistic Spectrum Disorder Strategic Action Plan the Welsh Government announced that it would be funding a new national Integrated Autism Service (IAS), information on which can be found here:

The service was developed across Wales following consultation with autistic people, carers and professionals which highlighted the lack of support available for autistic people who did not meet the criteria for mental health and learning disability services.

The West Wales Integrated Autism Service (WWIAS) established in 2019 and is a joint service delivered by Hywel Dda University Health Board in partnership with the local authorities of West Wales.

It offers diagnostic assessment for adults who do not have a significant learning disability or mental health problem and a range of support for autistic people, their families, including unpaid carers and advice for professionals. Further information can be found here:

To provide an assessment of the current services to determine the gaps and areas for improvement, engagements have been completed with autistic people, parents, carers and professionals.

In West Wales a regional strategic group of all key partners meets to oversee the implementation of services for Autistic people, including the Integrated Autism Service (IAS). This strategic group is chaired by the Head of Service within Hywel Dda University Health Board with the responsibility for Autism.

In each local authority there is an ‘Autism Lead’ a named contact responsible for overseeing and coordinating the activity in their area. This includes the coordination of local steering and stakeholder groups (with autistic people and their families) as well as training and awareness raising for staff.

Our engagement activities have been limited during the COVID 19 pandemic. However, our agreed approach for the future is set out below.

A flowchart-style diagram showing Welsh Government at the top, with the Regional Partnership Board and Autism Champion sitting below. Below this sits the Strategic Autism Group, including LHB Senior representatives, LA senior representatives, a Thirs Sector Senior representative and the Autism Champion. Below this in the chart, at the bottom, sit Autistic People, families and carers. Information is ahred between the layers via Annual reports, population assessments, area plans and engagement groups.
Diagram illustrating the role of the Autism Champion in collating and sharing information to inform the Regional Partnership Board (Welsh Government, 2021)


Engagement through the strategic groups has allowed us to reflect what matters to autistic people in West Wales including the impact of the COVID-19 Pandemic on their wellbeing and care and support needs.

In addition, a virtual meeting was held with 10 parents of children and young people with complex needs, including autism.

The pandemic has impacted on the care and support available for autistic people as many support services were paused. In addition, the uncertainty and frequent changes to routines and rules will, in some cases have had a significant impact upon people’s mental-health and wellbeing. This has placed increased pressure on family members and carers.

For Autistic People the resumption of and reintegration to activities such as education following prolonged periods of lock down has also presented significant challenges.


  1. [1] Brugha, T. S., McManus, S., Bankart, J., Scott, F., Purdon, S., Smith, J., Bebbington, P., Jenkins, R., & Meltzer, G. C. W. (2011). Epidemiology of autism spectrum disorders in adults in the community in England. Archives of General Psychiatry, 68(5), 459–465.
  2. [2] Brugha, T. S., Spiers, N., Bankart, J., Cooper, S. A., McManus, S., Scott, F. J., Smith, J., & Tyrer, F. (2016). Epidemiology of autism in adults across age groups and ability levels. British Journal of Psychiatry, 209(6), 498–503. https://doi. org/10.1192/bjp.bp.115.174649
  3. [3] Chiarotti, F., & Venerosi, A. (2020). Epidemiology of autism spectrum disorders: A review of worldwide prevalence estimates since 2014. Brain Sciences, 10(5), 274. https://doi. org/10.3390/brainsci10050274
  4. [4] Fombonne, E., MacFarlane, H., & Salem, A. C. (2021). Epidemiological surveys of ASD: Advances and remaining challenges. Journal of Autism and Developmental Disorders, 51, 4271–4290. 021-05005-9
  5. [5] Lyall, K., Croen, L., Daniels, J., Fallin, M. D., Ladd-Acosta, C., Lee, B. K., Park, B. Y., Snyder, N. W., Schendel, D., Volk, H., Windham, G. C., & Newschaffer, C. (2017). The changing epidemiology of autism spectrum disorders. Annual Review of Public Health, 38, 81–102. https://