Access to services for autism and ADHD

This indicator uses routinely published data to understand access to autism services and medications prescribed for ADHD.

Qualitywatch

Indicator

Last updated: 04/02/2025

Background

Long waiting times for autism and attention deficit hyperactivity disorder (ADHD) assessments can prevent people from getting the vital care and medication they need. Health and education support often relies on a formal diagnosis, and delays in assessment and treatment can have long term negative impacts on individuals. For example, a recent report warned that failure to provide children with effective autism support can lead to increased prevalence of mental ill health and a greater risk of school exclusion. Alongside this, a huge rise in demand for autism and ADHD diagnoses has been documented amid increased awareness and understanding of neurodiversity. This indicator explores the data on autism and ADHD to track how access to services has changed over time.

If you or a loved one are struggling with these conditions, visit: Spectrum Live (autism.org.uk)Beyond Autism or ADHD UK


Referrals to autism services

Referrals to autism services are more common among children and young people than older adults. The rate of referrals per 100,000 population has more than doubled for both population groups over this two-and-a-half-year period. For 0-17-year-olds, it has increased from 397 in January 2022 to 1053 in September 2024. Comparatively, for over-18-year-olds it has increased from 69 in January 2022 to 172 in September 2024.

It should be noted that population estimates for 2023 were used to compute the rate for 2024, which may lead to a slight overestimation in rate of referrals as the population has increased over time.

Diagnoses for autism, and other behavioural disorders, tend to be more prevalent among males than females. Both sexes have seen an increase in parallel over this two-and-a-half-year period. The rate of autism referrals per 100,000 population for males has increased from 162 in January 2022 to 373 in September 2024, while the rate for females has increased by a higher margin from 114 in January 2022 to 335 in September 2024.

It should be noted that population estimates for 2023 were used to compute the rate for 2024, which may lead to a slight overestimation in rate of referrals as the population has increased over time.  

Waiting times for a first appointment with autism services 

Guidance states that the process of diagnostic assessment for autism should begin within three months of referral. Waiting times following referral for a first appointment can be extremely lengthy, with some ICBs reporting wait times well over two years. The proportion of individuals who have waited less than 13 weeks (approximately three months) for their first appointment has decreased slightly from 6.2% in April 2023 to 4.9% in September 2024. The proportion of those who waited over 13 weeks has decreased by a greater extent from 34.8% in April 2023 to 15.2% in September 2024. However, the decrease might signal longer waits over time, as the proportion of individuals who have no recorded appointment has increased from 60.7% in April 2023 to 80.9% in September 2024. At least eight in 10 people whose referral had been open for 13 weeks had not had an appointment yet as of September 2024.  

Support for managing autism

In the 2024 GP Patient Survey, patients were asked, “In the last 12 months, have you had enough support from local services or organisations to help you to manage your condition (or conditions)?” 4% of patients (amounting to 12,133 people) who answered this question indicated they had an autism or autism-spectrum condition. Of those people, 52% said they 'definitely' or 'to some extent' had enough support, and 48% reported having no support. This was the highest proportion of people to report not receiving support among the 16 conditions covered by this question. 

Medication for ADHD

The rise in demand for ADHD support can be seen through the lens of national prescribing data. In the absence of publicly available data on diagnoses, this can be considered as a proxy for prevalence. Between 2015/16 and 2018/19, the number of individuals prescribed ADHD medication increased by 8-10% each year. In 2019/20, over 150,000 individuals were prescribed these medications – a jump from 15% from the previous year. The growth in 2020/21 was lower (5%), possibly due to disruptions to health services caused by the Covid-19 pandemic, but in the following three years, the number of individuals with prescriptions grew by at least 20% each year. In 2023/24, over 300,000 people were taking ADHD medication prescriptions. This comes amid a backdrop of reports of national shortages of ADHD medications. Some people are not able to access their medications in the quantity or timescale they need.


About this data

NHS Digital’s Autism Waiting Time Statistics are classified as ‘experimental’ and should be treated with caution. Experimental statistics are new official statistics that are undergoing evaluation.

Autism diagnosis activity also happens in the Community Services Dataset (CSDS), but currently NHS Digital’s publication only includes data from the Mental Health Services Dataset (MHSDS).

Autism assessments for children and adolescents happen in two types of NHS services, child and adolescent mental health services and community paediatric services. Activity in community paediatric services is reported through the CSDS, so is not included. For this reason, we chose not to display the data for adults and children separately.

There have been some changes in methodology over time, including how a referral for suspected autism is counted as open. Other data quality issues include the completeness of the data providers submit. More information can be found on the NHS Digital website.

Rate of referral per 100,000 population were calculated using the mid-year population census estimates released by the Office for National Statistics. Population data for 2023 was used as a proxy for 2024, as 2024 data had not been made available at the time this indicator was being prepared.

Within the BNF Section Name ‘CNS stimulants and drugs used for ADHD’, the following medication, licensed for the treatment of ADHD, were used to specify the total identified patients being prescribed at least one medication for ADHD: methylphenidate, lisdexamfetamine, dexamfetamine, atomoxetime, and guanfacine. Detail on the quality of the NHS Business Services Authority’s prescriptions data can be viewed here.

The GP Patient Survey gives patients the opportunity to provide feedback on their experiences of their GP practice and other local NHS services. Patients are eligible for inclusion in the survey if they had a valid NHS number, had been registered with a GP practice continuously for at least six months at the point of selection, and were 16 years of age or over. For more detailed information, please see the GP Patient Survey - Technical Annex.

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