Parents slam new autism referrals rules as ‘discrimination’

Outraged parents of autistic children have branded strict new rules about who can be referred for diagnosis assessments as “naive and dangerous” and “discrimination”.

Youngsters must now be in “crisis” before being placed on a two-year waiting list to be seen by healthcare provider Sirona, which runs the NHS service on behalf of Bristol, North Somerset and South Gloucestershire (BNSSG) Integrated Care Board (ICB).

Under the six-point criteria, which came into force on March 1, children will only be referred if  they have “severe and enduring” mental health issues, such as being a high risk to themselves or others, are involved with youth offending, have very low levels of communication, are in care or on a child protection plan, or if their education or family is breaking down.

Sirona and the ICB insist it is necessary because families are waiting too long as it is for an initial assessment and that resources can now be focused on those with the “highest clinical need or are the most vulnerable”.

It says the approach is now more in line with services elsewhere and that youngsters do not require a diagnosis to have their needs met – a claim parents dismiss as “nonsense”.

Fiona Castle is campaigning against Sirona’s new autism referral rules – photo: Fiona Castle

Parents shared their stories at a council meeting on Monday, explaining how hard they’d had to battle to get their children an autism diagnosis and support – even before the criteria of who is eligible changed.

They warned that the “monstrous” decision, which was not subject to consultation and came out of the blue even to leading health scrutiny councillors, would create a mental health crisis among young people who would be left without vital support.

Mother-of-two Fiona Castle, from Horfield, whose youngest son is autistic, told the meeting that her 11-year-old was diagnosed aged four and received an education, health and care plan (EHCP) despite a health visitor previously telling her he was just “boisterous”. He had 1:1 support at primary school and now attends a specialist autism secondary school.

Castle said: “The journey for us as a family, post diagnosis, has been long and hard.

“I have had to fight for everything my son was lawfully entitled to and have firsthand experience of Bristol City Council’s ‘fractured relationships with parent carers’,” she said, referring to the judgement of Ofsted at its latest inspection of the council’s SEND services.

“The fight for support has at times cost me my physical health, relationships with friends and family, employment prospects and the mental health of not just me but other family members.

“My son’s autism diagnosis was, for us, just the start of a very long and arduous road, littered with a lack of resources, an unwillingness for professionals to follow the law and years of watching my beautiful boy being failed by the education, health and care systems in Bristol – and yet we had a diagnosis of autism.

“It’s like a buffer and a gatekeeper and, with all the gaslighting that goes on with parents of disabled children, at least we had a diagnosis to fall back on.

“I can only imagine how difficult this journey will be for families without an autism diagnosis, who aren’t even eligible for a diagnosis.

“The idea that they aren’t eligible until they’re effectively broken, and then have to wait two years, is monstrous.”

Fewer children will be eligible to get an autism diagnosis from the NHS – photo: Betty Woolerton

She said early diagnosis, intervention and support allowed autistic people to fulfil their potential.

“Despite what Sirona says in its literature that you don’t need a diagnosis to get support, that’s nonsense – you need a diagnosis,” Castle said.

“Support without a diagnosis is much more difficult to get and this is in a system that already seems to view supporting SEND children as a voluntary concept.

“This change in assessment criteria has happened under the scrutiny of Bristol City, North Somerset and South Gloucestershire councils.

“Under your watch, Sirona has been allowed to close hearts and minds on a huge portion of the next neurodiverse generation, and I fail to see how this is not discrimination.

“You should hang your heads in shame and I urge you to do all you can to force Sirona and the ICB to reverse eligibility criteria for assessment.

“It goes further than just getting a diagnosis, it goes to the identity of an autistic person and being part of a community.

Parents have launched a campaign group called Assess for Autism along with a crowdfunding appeal to challenge the decision in court – which has nearly reached its £3,000 target.

Sirona and BNSSG ICB insist the change is necessary because families are waiting too long. They said resources can now be focused on those with the “highest clinical need or are the most vulnerable”.

They 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.

“Children do not require a diagnosis to have their needs met in schools and other settings, and the wait for the outcome of a diagnostic assessment can delay children receiving appropriate support.

“We are committed to continuing to work together with our partners to identify ways of reducing the overall wait times for all families.

It said any child referred before March 1 would be assessed under the previous criteria and that it had set up a helpdesk which can be contacted by email at sirona.cpasdhelpdesk@nhs.net or phone on 0300 125 5560.

Main photo: Betty Woolerton

Read next:

• SEND failings see year seven pupil stuck in primary school
• ‘Save our schools’ – thousands of teachers march through Bristol
• Cases of parents taking council to court over SEND delays trippled in 2022

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