Autism in the UK: prevalence, assessment and the impact of the Covid-19 pandemic

By Hogrefe Ltd's Principal Psychologist, Liz Hey (MSc, MBPsS)

The prevalence of autism in the UK

Over the course of several years, diagnoses of autism have been on the increase in the UK – with a recent report revealing a sharp increase in the prevalence rates of autism in UK schools between 2010 and 2019[1]. Autism currently affects 1–2% of the UK population – that is 1 per 100 children and 2 per 100 adults[2]. Therefore, based on the number of referrals in the system, there are around 100,000 children and 1,000,000 adults in the UK with autism.

According to figures reported by the NHS, in November 2020 there were around 150,000 individuals in contact with learning disabilities and autism services. The NHS aims to assess an autism referral within 13 weeks but as of 2019, only 1 in 10 suspected cases of autism had resulted in an intervention or treatment.[3] The potential impacts of a delayed diagnosis can be wide-ranging, causing undue stress to individuals and families, identifying other mental health conditions and increased financial costs.

There is the option of a private assessment but at costs of around £800 to £2000, this is not accessible to all individuals or families.

The impact of the Covid-19 pandemic

The number of referrals requested either through the NHS or privately may have increased since the beginning of the Covid-19 pandemic. The UK Government’s State of the Nation report (Oct 2020)[4] showed that the number of mental health referral services, including those for autism, were higher than pre-pandemic numbers. NHS England also highlight in their November 2020 report[5] the increased risk of mental health conditions as a result of the pandemic.

The reason for this may be due to the increased contact between parents and children and their growing concern about challenging behaviours they have observed. It could also be because behaviour has changed due to the stresses and strains which have likely resulted from lockdown restrictions, the closure of schools and the subsequent lack of social interaction for children, in particular.

Research is highlighting the challenges which arise from the Covid-19 pandemic for those with conditions such as autism. Young individuals on the autism spectrum are particularly at risk of psychological distress due to their vulnerability to unpredictable and complex changes (Colizzi et al, 2020)[6]. A study carried out in Italy in 2020 found that the majority of those in a group of children and young adults had problems understanding what Covid-19 is, in implementing social distance and hygiene-related rules, and had stopped receiving special education during this period. PTSD-type behaviours were also observed, demonstrated as aggression, hypersensitivity, behavioural problems, and disturbances in sleep and appetite (Tuba, Ceymi & Herdem, 2020)[7]. This study also drew attention to the burden on parents and carers and increased anxiety of caregivers.

The easing of the lockdown

The pandemic and lockdown have been difficult for everyone, but the resultant uncertainty and change, as well as the impact of stay-at-home rules, social distancing requirements and the closures of many education, health and support services have created disproportionate challenges for autistic people and their families. 

Here in the UK, World Autism Awareness Week coincides with the easing of the lockdown. Not only is there much work for practitioners to help and support individuals and their families in that transition, perhaps this is a rare opportunity for practitioners to play a part in rebuilding society in a way that works better for autistic people.

Our range of autism assessments

Hogrefe Ltd offers a range of widely-used autism assessments as well as a breakthrough communication therapy, Paediatric Autism Communicaion Therapy (PACT)


[1] McConkey R. (2020). The rise in the numbers of pupils identified by schools with autism spectrum disorder (ASD): a comparison of the four countries in the United Kingdom. Support for Learning, 35: 132–143.

[2] NHS Digital: https://digital.nhs.uk/data-and-information/publications/statistical/autism-statistics/q1-april-to-june-2020-21/data-quality-copy

[3] NHS Digital: https://digital.nhs.uk/data-and-information/publications/statistical/mental-health-services-monthly-statistics/performance-november-provisional-december-2020 /

[4] State of the Nation report (Oct, 2020): https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/925329/State_of_the_nation_2020_children_and_young_people_s_wellbeing.pdf

[5] NHS England report (Nov, 2020): https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/C0841-managing-demand-and-capacity-across-mh-and-ld-v2.pdf

[6] Colizzi, M., Sironi, E., Antonini, F., Ciceri, M. L., Bovo, C., & Zoccante, L. (2020). Psychosocial and Behavioral Impact of COVID-19 in Autism Spectrum Disorder: An Online Parent Survey. Brain sciences, 10(6), 341. https://doi.org/10.3390/brainsci10060341

[7] Tuba, M., Ceymi, D. & Herdem, A. G (2020). Behavioral Implications of the Covid-19 Process for Autism Spectrum Disorder, and Individuals' Comprehension of and Reactions to the Pandemic Conditions, Frontiers in Psychiatry, 11, p.1263 https://www.frontiersin.org/article/10.3389/fpsyt.2020.561882