Autism

Autism

The National Autistic Society describe autism as a lifelong neurodivergence and disability which influences the way people with autism interact and experience the world. Individuals with an autism diagnostic share characteristic differences from non-autistic people in the way that they think, feel and communicate.

Find out more information here on what autism means on the link here:  What is autism.

The National Institute for Health and Care Excellence (2020) indicates that autism is present in 1.1% of individuals in the UK.

The number of autism diagnoses in the UK surged dramatically by 787% between 1998 and 2018, with adults experiencing the most significant increase across all age groups (Russell et al., 2021).

Following the introduction of the Autism Act (2009) and the first Autism Strategy in 2010 in England, increased awareness and improved diagnostic services likely account for this observed increase (National Autistic Society, 2020).

Hywel Dda health board have seen a 12-fold increase in the number of children waiting more than a year for an autism assessment - from 194 children in 2019 to 2,391 in 2024. Hywel Dda have also seen more than a 400% increase in the number of autism referrals received - 614 in 2019 compared with 3,326 in 2024.

Hywel Dda Health Board Stats:

2022: 2593

2023: 3158

2024: 4030

Longest wait in days: 1705

Current estimates suggest that around 1 in every 100 people in the UK are diagnosed with autism, or approximately 700,000 individuals.

However, recent research from Cardiff University strongly implies that the true number is much higher, as evidenced by significant increases in diagnostic rates among previously under-identified groups.

Specifically:

• Diagnosis rates saw a substantial 150% increase between 2008 and 2016.

• There is a growing trend of diagnoses in adults over the age of 35.

• Diagnoses for women saw a dramatic eightfold increase between 2000 and 2016.

These findings suggest that while the current official prevalence stands at 1 in 100, this figure likely significantly underestimates the total autistic population because a large portion remains unidentified by healthcare systems.

Read more on the study by clicking here. 

There is currently no waiting time policy or target for adults. Those seeking an autism diagnosis through the Integrated Autism Services (IAS) in the last quarter of 2022-23 faced a national average wait of 95.1 weeks.

ADHD

The NHS refer to ADHD (attention deficit hyperactivity disorder) as a condition where the brain works differently to most people, individuals with ADHD may have difficulties concentrating and sitting still.

Find out more information by clicking here on what ADHD means for children and young people. 

Find out more information by clicking here on what ADHD means for adults. 

The Welsh Government as of 2025, exploring all-age support services for ADHD and Tourette syndrome and developing specifications for a national approach for service reform.

As of March 2023, Hywel Dda Health Board has 2,028 adults waiting for an ADHD assessment, with an average wait time of 58 weeks. The longest wait time for an adult ADHD assessment is 443 weeks. 

As of March 2023, there were 387 children waiting for an ADHD assessment, a decrease from 433 the year prior. The longest waiting time for a CYP ADHD assessment is three hundred and forty-seven (347) weeks. 

There have been a national increase in waits for neurodevelopmental assessments, with a rise of under 17s in Wales waiting more than a year for ADHD assessments.

Tourette’s

Tourette Syndrome (TS), as defined by Tourettes Action UK, is a neurological condition characterised primarily by tics – involuntary and uncontrollable sounds and movements. It's often accompanied by other co-occurring conditions and features, making it a complex condtion.

Around 60% of people living with tourettes, also have ADHD. Typical symptoms include eye blinking, face grimacing and nose twitching, top lip pouting and head nodding. Those living with tourettes may also suffer from insomnia, self-harming and OCD as the result of their Tourette’s.

A large study in 2014, followed up over 6000 pregnant mothers and their children over time. It found the strongest risk factor was inadequate weight gain during pregnancy, use of cannabis and alcohol and whether the child was the first born.

Read the study by clicking here. 

Neurodivergence Improvement Programme (NDIP)

The Welsh Government aims to support the development of the neurodivergence improvement programme, first published in 2022, now extended to March 2027. This is aimed at transforming services and improving support for neurodivergent individuals of all ages, as well as their families and carers.

Neurodivergence Improvement Board

In West Wales a regional strategic group of all key partners meets to oversee the implementation of services for neurodivergent individuals, including the Integrated Autism Service (IAS). The board oversees the re-design of Children’s Neuro-developmental services in line with the Neuro-Divergence improvement programme

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.

Below is the West Wales reporting process to implementing the neurodivergence improvement programme: 

Integrated Autism Service (IAS)

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 with or without a mild learning disability and who do not meet eligibility criteria for statutory services such as mental health and learning disability services. The service offers support for autistic people, their families, including unpaid carers and advice for professionals.   

ASD Statutory Code of Practice

The statutory code of practice on the delivery of autism services came into effect on 1 September 2021. However, feedback during the consultation for the code indicated there was a need to widen the code to include other neurodevelopmental conditions which are often co-occurring with autism. An updated code of practice to be completed by March 2026.

To ensure Welsh Government investments make a difference, Welsh Government are developing new outcome measures, which will initially focus on children's services. This data will provide a comprehensive view of service improvements and outcomes, including user experiences, to identify areas for future focus.

Read more on the investment from Welsh Government by clicking here. 

Tourette’s Specialists

As of 2021, there are no Tourette’s children’s specialists in Wales, and only one part time adult Tourette’s specialist in Wales.

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: https://autismwales.org/en/integrated-autism-service/.

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: https://fis.carmarthenshire.gov.wales/disability-autism/autism/.

The COVID-19 pandemic had a psychological and emotional impact on autistic people, far more than on the general population. A UK-wide survey in mid-2020 by the National Autistic Society found that:

• 9 in 10 autistic people worried about their mental health during lockdown; 85% said their anxiety levels got worse
• Autistic people were 7 times more likely to be chronically lonely than the general population*; and 6 times more likely to have low life satisfaction** (comparisons using ONS data)
• 1 in 5 family members responding to the survey had to reduce work due to caring responsibilities
• 7 in 10 parents say their child has had difficulty understanding or completing schoolwork and around half said their child’s academic progress was suffering.

Read more about the impact of Covid-19 by clicking here.