There are currently more than 150,000* people waiting for an autism assessment across England, Scotland and Wales, according to the latest NHS data.
While ADHD waiting times are not routinely published, a survey by the charity ADHD Action revealed that a third of adults awaiting assessment had been waiting for over 13 months in 2021, with some waiting for seven years.
The list has grown extensively since the Covid-19 pandemic which caused a huge backlog of care, and now, more people are turning to private providers for autism and ADHD assessments.
Autism assessments can cost upwards of £2,000
In 2022, Healios, a leading digital provider of specialist mental health, autism and ADHD services for children and young people, reported its busiest year on record, delivering more than 60,000 clinician-led appointments to more than 18,000 children and young people.
While Healios predominantly performs assessments for people who have been referred via their local NHS trust or child and adolescent mental health service (CAMHS), demand for their services has grown exponentially, and the digital provider is now launching a private service, Melios, which allows patients to access assessments without the need for an NHS referral.
Founder and CEO of Healios, Rich Andrews, said: “Nationally, the health care system is under extreme pressure, exacerbated by the Covid pandemic, with some children having to wait for years to receive autism or ADHD assessments. But early diagnoses of autism spectrum disorders can help children, young people and their families receive the vital support they need to successfully navigate life’s challenges and experience a better quality of life.”
He added that while helping thousands children and young people to get vital mental health support was a “fantastic achievement”, the company is aware that there are “thousands more families who are in need of support.”
But paying for an assessment privately comes at no small cost, and Melios charge £2,160 for an autism assessment and £2,850 for a combined autism and ADHD assessment.
The National Autistic Society (NAS) highlights that the cost of a private assessment varies depending on the provider, so it’s a good idea to phone several services to ask about prices, what this pays for and whether any follow-up service is offered.
NAS also points out that some local authorities may not accept the results of private diagnoses and may insist upon an NHS diagnosis before they will provide services to you and your child. For this reason, they suggest that you stay on the waiting list for an NHS assessment even if you also decide to go privately.
There is therefore concern that many autistic people and people with ADHD may be forced to wait months, or even years, for a diagnosis, which can have a profound impact on mental health and wellbeing.
What are the dangers of waiting for an autism diagnosis?
According to NAS, an autism diagnosis is vital to getting the right help and support. Without a diagnosis, children and young people will struggle at school or work and could go onto develop mental health problems like anxiety or depression.
Guidance from the National Institute of Care Excellence (NICE) states that no one should wait longer than three months between a referral and an appointment. However, NHS data from July 2022 shows that 85% of people were waiting longer for than 13 weeks.
The government’s National Autism Strategy, published in July 2021, committed to “making demonstrable progress on reducing diagnosis waiting time”, yet, the waiting list has only grown.
NAS are now calling on the government to “honour this promise and invest in rolling out diagnosis services across the country, as set out in the strategy.”
“Without this, the number of people waiting for an autism assessment will continue to increase and more people will be pushed to crisis point,” the charity says.