Restricting autism assessment? Not on our watch, say Bristol parents, as they launch legal action

with Fiona Castle, Assess for Autism, Bristol

autism aassessment - little girl shouting through megaphone from Assess for Autism

The below quote from a new NHS autism Framework document illustrates everything about the “NHS Utopia” described in today’s article.

For an undiagnosed autistic person, access to personal understanding, healthcare, education, social care, reasonable adjustments in the workplace, statutory protection from discrimination, or benefits may be withheld. For these reasons, it is important that ICBs do not restrict or withhold access to an autism diagnosis, for example, because locally a decision has been taken by health to conduct only a needs-based assessment. Barriers to a diagnosis increase a person’s risk for poor outcomes in life, for example, late diagnosed autistic adults commonly experience multiple forms of abuse (22) and can experience poorer mental health, suicidality or hospital admission (23,24). As a result, autistic people, and especially people without an intellectual disability, represent a significant proportion of the mental health inpatient population in England (25).

A national framework to deliver improved outcomes in all-age autism assessment pathways: guidance for integrated care boards

Whether child or adult, it’s never been easy to get an NHS diagnosis for autism. Waiting lists are extensive, but seeing a private clinician who can diagnose ASD is out of the reach of many, especially during a cost-of-living crisis.

Criteria for mental health support can be so tight that a child has to be actively suicidal before they are accepted by local Child and Adolescent Mental Health Services (CAMHS). Some overwhelmed NHS services have outsourced CAMHS to private companies. This can be beneficial in shortening waiting times, but recently, parents and adults seeking an autism diagnosis in Bristol, and, we are hearing, in York, have found criteria, even for a diagnostic assessment, further restricted.

Is this what we want as a society, to leave children until they are so traumatised through lack of appropriate care, that their parents may end up on suicide watch before they get an appointment? Or worse? Ultimately, this costs the NHS, families, and society in general much more. Without timely help, their life chances may be permanently damaged and they may well require long-term social, medical, and financial support.

In Bristol, tenacious parents of children with SEND — already used to fighting for support — are on the case. Of course, they shouldn't have to be, they already have enough to do supporting their disabled children. Nevertheless, they are taking a legal stand to push back. Fiona Castle of new group, Assess for Autism, has written for SNJ to explain the action they’re taking…

A not very shipshape and Bristol fashion approach to autism assessment. By Fiona Castle, on behalf of Assess for Autism

On the 1st of March 2023, Sirona Care and Health and the Integrated Care Board (ICB) for Bristol, North Somerset and South Gloucestershire imposed new eligibility criteria for children and young people in need of an Autism assessment. Sirona is the body responsible for delivering Autism assessments within our area, on behalf of NHS commissioners.

The new criteria, explained in this video produced by Sirona, mean that only children and young people who meet one of six new criteria will be eligible for assessment. Once on the waiting list, assessment waiting times may be up to two years. Children who were already on the waiting list prior to the March criteria change will remain on the list, but will be dropped to the bottom unless they meet the new eligibility criteria. All other children will be refused access to autism assessment on the NHS.

Crisis criteria for autism assessment

Crucially, the criteria are unarguably strict and essentially require the child and their family to be in crisis, before they are deemed eligible to join the waiting list. The criteria include children at risk of family or school placement breakdown, which cannot be rectified through other avenues of support such as social care, and those at risk of offending or already in the criminal justice system. As in the above introduction, children in Bristol with mental health issues are only considered eligible once they have reached crisis point and are deemed a threat to themselves or others. Children with communication difficulties are eligible, but only if those difficulties amount to very low levels of communication, as would usually be identified in Early Years.

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We’re taking legal action against restricting autism assessment

On the 12th of April, legal firm Rook Irwin Sweeney, acting on behalf of a local family affected by these changes, served a letter before action to both Sirona and the ICB. The letter argues the changes in eligibility are unlawful on several grounds. These include:

  • Failing to consult with parents and carers prior to the change
  • Breaching the Public Sector Equality Duty
  • Failing to consider relevant information on autism assessments contained in both the NICE guidelines and the NHS operational guidance.

The potential legal action has been brought following the formation of the campaign group ‘Assess for Autism’. The group set up a crowdfunding page to raise funds for the initial investigation work into the legality of Sirona’s actions and the resulting pre-action paperwork. The initial fundraising target of £3000 was reached in the first 10 days and the stretch target of £5000, within 28 days.

I am a member of Assess for Autism, run by mothers of children with SEND. I have an autistic son, diagnosed at age four. He has an Education, Health and Care Plan (EHCP) and is now, at 11, in specialist autism provision for secondary education. Given our experience with autism assessment and subsequent diagnosis, I felt no option but to be involved in this campaign. Given the outpouring of support we have received locally, I know that many parent carers feel the same.

Bristol’s already a SEND blackspot

For my family, our son’s autism diagnosis was the beginning of a long fight for support and resources. Bristol is renowned for having significant difficulties in providing for the SEND children within its city, with North Somerset and South Gloucestershire not faring much better. In 2018, Bristol lost a court case to prevent the local authority removing £5 million from its High Needs Block funding and, in 2019, Bristol City Council and the CQC were given a written statement of action in response to the OFSTED inspection of SEND services. Indeed, only last year, SNJ’s own Matt Keer referred to SEND provision in Bristol as a “smoking toxic SEND tyre fire”!

Sirona is claiming that autism assessment is not required because autism diagnosis is unnecessary to access support for likely-autistic children and young people. I’m sure this statement has come as a surprise to many parent carers, myself included, who have had to fight tooth and nail to get the support their children are legally entitled to and desperately need, so they can access education. Sirona’s explanation of a utopia where every SEND child is supported regardless of diagnosis is naïve at best, but closer to callous and ignorant gatekeeping.

Furthermore, without assessment, children and their families will be reliant on the diagnostic skills of other professionals, such as SENCOs and Health Visitors to provide insight into the origin of their children’s difficulties. Considering that our son’s health visitor told us our two-year-old, “definitely wasn’t autistic and was just a “Type A” personality, destined to be a future captain of the school Rugby team”, I dread to think what would have happened to him, and our family, had this been the only professional opinion we were able to access.

Accurate diagnosis is a fundamental human right

I also strongly believe that access to a necessary autism assessment is a fundamental human right and is vital for the development of a strong sense of personal identity. The legal team agrees, citing a breach of Article 8 of the Human Rights Act, because “A diagnosis of autism [is] intimately linked to the private life rights … which may help them understand and develop their identity”.

Since my son’s diagnosis, I have learned much about the development of identity and self-advocacy within the current adult autistic community. I’m excited about how much more this will develop for my son’s generation. The concept that he and his peers could, with the right support, be spared from the trauma and gaslighting experienced by previous generations is intoxicating and I will help Assess for Autism do everything they can to protect that future, by ensuring that every child who needs an autism assessment, is eligible for one.

What does Assess for Autism want?

Indeed, reversing the decision to implement eligibility criteria is one of the remedial actions listed in the Letter Before Action sent to Sirona and the ICB. Additionally, Assess for Autism wants to ensure that appropriate provision is made for autism assessment in Bristol, North Somerset and South Gloucestershire by forcing Sirona to invest financially in the service. We want them to review other ways the service may be streamlined that do not involve effectively removing children from the waiting list.

Whether you prescribe to the theory that autism should be diagnosed as a medical condition or not, it is simply nonsensical for Sirona to remove the only method of diagnosis available to most children and their families in the area. There may well, one day, be a better, more enlightened future where support for children in schools is properly funded and staff are fully trained to meet individual needs. A future where local authorities abide fully with their legal obligations without a fight, promptly and fully meeting needs, regardless of diagnosis. A future where seeking specialist/alternative provision will be based on choice, not simply to prevent trauma. But until that mythical future is realised, individual families and campaign groups, like Assess for Autism, will do everything they can to stop children languishing, unsupported, in the no man’s land of the undiagnosed.

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