Families slam new Bristol autism referral rules 'discriminatory, shocking, and backwards'

• Watch Marina Jenkins' report

Parents of children with autism in Bristol have branded new rules on who can be referred for diagnosis assessments as "discriminatory, naive, and dangerous".

Children must now be in 'crisis' before being placed on a two-year NHS waiting list to be seen by healthcare provider Sirona - which runs services in Bristol, North Somerset and South Gloucestershire.

The company said the changes were needed because of a dramatic increase in demand for assessments. Sirona said it has taken a "clinically-led decision to prioritise access for children whose needs are greatest".

But Jai Breitnauer, a mum of two from Ashton, said this is discriminatory. Her older son Jessie, aged 14, was diagnosed with autism at the age of six, meaning he was able to go to a specialist school.

But her younger son Eli, aged 11, was only recently put on the two-year waiting list for an autism assessment. Now because of the criteria changes, he has dropped to the bottom of that list.

Jai said: "I feel like it is disability discrimination. They are denying a diagnosis and therefore denying that sense of self-understanding. And that ability to access additional support to a whole generation of young people in Bristol.

"It does feel like a U-turn. It feels like help was offered and now it's been taken away.

"When my first child was diagnosed it doesn't immediately open up loads of doors, you still have to fight a bit to get the resources and the support but at least you know there's a pathway that you can start to tread.

"We want that same thing to happen for our younger child as well. For Eli, he is in mainstream school and he's is really really struggling, he's finding it really hard."

What is the new criteria?

• Children and young people whose education placement is breaking down despite appropriate support

• Children and young people whose family unit is at risk of breakdown despite support from appropriate agencies

• Children and young people in care or on a child protection plan for whom an assessment is needed 

• Children and young people who are open to Children and Adolescent Mental Health Services (CAMHS) or children who are not open to CAMHS but are presenting with a serious risk to self or others 

• Children and young people who are involved with youth offending services and/or are engaged in repeated offending behaviours. 

• Children with very low levels of communication where the difficulties are likely to be associated with autism (usually Early Years)

A joint statement from Sirona and Bristol, North Somerset and South Gloucestershire Integrated Care Board (ICB) said: "We recognise that parents and carers have concerns about the referral criteria changes and we're sorry if this has caused additional anxiety for families.

"Our priority is always to ensure the best possible care for our children and young people but faced with a dramatic increase in demand for referrals in recent years, in common with other parts of the country. We have taken a clinically-led decision to prioritise access for children whose needs are greatest.

"Alongside this, over the coming months we will undertake a system-wide review of services, working with partners to ensure neurodiversity is recognised and understood and the needs of children can be met without requiring a medical diagnosis.

"We will continue to work with parents and carers as we carry out this review and will continue to monitor the new criteria and consider what adjustments may be necessary."

Jai said that if it comes to it, she will consider trying to get a private diagnosis for Eli but it could put her into debt. She is hopeful, however, that it will not come to this.

She is part of the campaign Assess for Autism which has started a fundraiser to bring a judicial review against Sirona. The hope is that even just the threat of this will be enough to persuade the company to reverse the criteria changes.

'It goes against the National strategy for autism published in 2021'

Nura Aabe is the founder of Autism Independence, a community organisation which tackles the stigma of autism in the Somali community.

Nura said: "This is all really shocking, despite all of the research this policy has come along without any evidence to support it. I think it would be such a shame to see so many young people taken off that list, who have already waited for so long.

"It goes against the National strategy for autism published in 2021. It specifically talks about the early identification of autism, in order to improve the quality of life in the long term for a young person with autism. I think this is very sad that the system is going backwards.

A few years ago, a judicial review was brought against a health provider in south west London and the new criteria was rapidly reversed.

Commenting on the judicial review against Sirona, Nura said she is hopeful for the outcome: "There is a chance for this to be reversed because there is no evidence to support this policy.

"Families haven't been consulted or informed of this decision. I really hope that those who made this decision think twice. It will only cause more chaos for families."