By Adam Postans, local democracy reporter
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).
Three campaigning mums shared their stories at a council meeting on Monday, March 20, 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 drastically on March 1.
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, of Horfield, whose youngest son is autistic, told Bristol City Council health scrutiny committee 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.
Ms 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 local authority’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.”
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,” Ms 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.
“We would not deny any other minority group the right to identify and be part of the community to which they belong. It’s monstrous.”
Jai Breitnauer, of Bedminster, whose 14-year-old is autistic and 11-year-old is on the waiting list to be assessed, told the meeting: “The change to the referral policy is naive, inappropriate and dangerous.
“The change to this policy will cost lives.
“Research shows that autistic people are twice as vulnerable to suicide and in undiagnosed autistics the risk is exponentially higher.”
Jen Smith told councillors the new policy was “one of the worst decisions” in Bristol in recent years.
“With the state of SEND in the city, that’s a big achievement,” she said.
“The mental health damage inflicted on neurodivergent people, who do not understand why they are the way they are, is lifelong and never goes away.
“That children and young people in Bristol, and the other local authorities, must be at crisis point before being able to access an assessment is creating years and years of trauma.
“This is the time where there should be early intervention – a chance to interrupt the predictable path of children thinking there is something wrong with them and adults treating them as if there is something wrong with them.
“Because that’s the reality of it. As a neurodivergent family in Bristol, I have seen the barriers a lack of diagnosis and extremely late diagnosis creates in education.
“There is then no support in social care, children do not achieve levels of education of which they are capable, it impacts on employment, enjoying life and then as an adult you live in the judgement of others who do not understand why you are incapable of playing the Neurotypical Game of Life.
“You do not create fewer autistic people in Bristol by cutting back on assessments and you do not save money in the long run.
“This decision to implement this restrictive criteria blocking access to autism assessments will prove to be a costly and discriminatory decision that proves Bristol never deserves to call itself autism friendly.”
The photo: left Jai Breitnauer and right Fiona Castle