NHS managers in south-west England have imposed new rules that could deny autism assessments to thousands of children in a move that parents say “puts children at genuine risk”.
At the start of this month, NHS commissioners in Bristol, North Somerset and South Gloucestershire announced new referral criteria for children’s autism assessments, effective immediately with no notice or consultation.
NHS managers say the new restrictions are needed because of a 350% rise in local children waiting for an autism assessment since the height of the pandemic, with waiting times exceeding two years.
Under the new rules, children and teenagers will only be referred for an autism assessment if they meet one of six criteria, including breakdown of their education placement, risk of family breakdown and having very low levels of communication linked to autism.
The new criteria were introduced by the local NHS Integrated Care Board (ICB) and Sirona, a not-for-profit organisation delivering NHS services in the ICB area. A spokesperson for Sirona said autism referrals were expected to fall due to the changes, but that “any child who was referred prior to 1 March will be assessed under the previous criteria”.
However, Jaime Breitnauer found that her youngest son, Eli, has been deprioritised under the new criteria, despite already having a referral. Eli first waited nine months to see a community paediatrician, who referred him for an autism assessment. By the time the new criteria were imposed, he had been waiting a year just to be triaged on to the autism assessment waiting list.
But this month Breitnauer received a letter saying that, while Eli had been accepted on the waiting list for an assessment using the old criteria, the new criteria would determine his position on the list.
“So even though [some children are] on the waiting list, they will never get to the top,” said Breitnauer.
Eli, who is now 11, has struggled with the transition to secondary school but was turned down for an education, health and care plan, which stipulates the required provision for children with special educational needs. His attendance rate has fallen.
“Part of the announcement that Sirona made is that children don’t need a diagnosis to have their needs met in education. And I know that that is the legal position. But that is not the reality of what is happening in our schools,” said Breitnauer.
There are nearly 4,500 children in the ICB area on the waiting list for either triage or an autism assessment. A letter from Sirona, seen by the Observer, says that “on average 40% of the current referrals” will meet the new criteria, though this may include referrals for community paediatric services as well as autism assessments.
“We believe that the changes to the referral criteria are naive and irresponsible. We believe that it puts children at genuine risk,” said Breitnauer. She is a member of local campaign group Assess for Autism, which is crowdfunding a possible legal challenge to the new rules.
“The risk of death by suicide is actually greater for autistics without intellectual disability. These are the autistic people most likely to mask, mostly likely to seem fine. This is the group of children who would not make it on to Sirona’s priority list because they have developed coping mechanisms that hide the urgent need for diagnosis and support.”
A statement from Sirona said: “We changed our referral criteria so our resources can be directed towards the children that have the highest clinical need or are the most vulnerable. It is important that we do not continue to accept more children and young people than we can see and assess, and our new approach has also brought us more in line with services across the rest of the country.”