Overview and key messages
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 PA 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 4,000 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).
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.
Feedback from engagement meetings across the region identified the following:
Gaps and areas for improvement:
- Improve waiting times for diagnosis and diagnosis rates for both children and adults
- Improve access to information and advice for Autistic people and their families, including the autism strategy and the associated support services available in West Wales
- Improve awareness of Autism and the Autistic Spectrum Conditions across health, social care services, education and all public services
- Greater emphasis on user engagement and coproduction in service development
- Improving the transition for Autistic Young people when they leave school
- Increasing opportunities for volunteering, work experience, employment opportunities and networking for autistic people.
The impact of COVID-19:
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.