Oct 13, 2024, Times: ‘Crisis’ in autism care as patients wait four years for diagnosis
As awareness of the condition has grown, more children are found to have it, but huge gaps between referral and diagnosis mean some are being left behind.
Autistic pupils are waiting more than four years for a diagnosis, “robbing them of their childhood and potential”, the children’s commissioner has said.
Dame Rachel de Souza has used her statutory powers to gather previously unpublished data, which she said should “sound the alarm on the crisis taking place in the services supporting children with suspected neurodevelopmental disorders”.
She said the delays meant that some non-verbal children were left wearing nappies well into primary school years, and there was a case of parents being told to sedate their distressed three-year-old autistic child in hospital because they could not access help sooner.
According to her research, which will be published on Tuesday, a youngster seeking a diagnosis of autism waited on average 527 days — a year and five months — from the point of referral in children’s mental health services in 2022-23. When referred through community health services, which treat adults as well as children, they waited an average of 791 days — two years and two months. However, almost one in six waited more than four years — the equivalent to a full key stage of education, and nearly a third of their time in compulsory schooling.
These are all waiting times up to the point of diagnosis and do not include the “hidden time” children then have to wait to receive the support they need. Since 2019 there has been a five-fold rise in people, including adults, waiting to see an autism specialist.
Experts claim that the exponential rise in cases is partly because of greater awareness and deeper understanding of the condition, as well as more clinicians who can make the diagnosis. TV stars, including Melanie Sykes, Chris Packham and Christine McGuinness, have all recently shared their autism diagnoses as adults, helping to further raise the profile of the condition.
Dame Rachel de Souza, the children’s commissioner for England, said some autistic children were “spending their childhoods in limbo” as they waited for assessment, diagnosis and support
Speaking before the publication of her report, Waiting times for assessment and support for autism, ADHD and other neurodevelopmental disorders, De Souza said: “At such a critical time developmentally, every day a child waits for support could permanently alter their life course. . . .
Another child in her report, aged 13, waited more than 20 months for an autism assessment, with the referral escalated after 17 months because of a mental health crisis. During this time her anxiety increased, affecting her personal hygiene, diet and ability to attend school or even enter shops.
Another was assessed for autism remotely during the coronavirus pandemic, resulting in no diagnosis, only to be re-referred by her school and diagnosed with autism 22 months later after a face-to-face assessment — two years after her first referral.
Autism exists on a spectrum — some people will be able to lead full lives with no additional help, whereas others may need full-time assistance. Classic signs of autism include trouble communicating, finding certain stimulation or situations overwhelming, and repetitive behaviours. According to a study by Newcastle University published in 2021, about one in 57 children in the UK are autistic. Girls often have autism diagnosed later than boys because they are better at masking their symptoms.
De Souza said: “In 2024, we would never imagine that children in this country are being told they cannot access their education because there is no suitable school for them. We would not expect that some children are non-verbal and wearing nappies well into the primary school years, because they haven’t been able to get the help they needed sooner.
“It is unthinkable for parents to be told the only option for them is to sedate their distressed three-year-old autistic child in hospital. Yet situations like these are happening every day in England. Children with neurodevelopmental disorders like autism are spending years of their precious childhoods in limbo, waiting for assessment, then diagnosis, then support.”
De Souza said that failing to provide timely support for children with autism was “robbing hundreds of thousands of children of their childhood and their potential”. She added: “We are storing up a tidal wave of demand for adult social care services, with neurodivergent children who do not get the right support disproportionately likely to grow up experiencing problems with poor mental health, substance misuse and offending behaviour.”
She is calling on the government to create a system that can intervene, as well as providing improved support in mainstream schools.
“We need better integration between health, care and education services, with families’ experiences at their heart. And we need more appointments available, so that when children do need a diagnosis, they can get one without delay,” she added.

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