Analysis

Autism Act revamp on the way in England

Heralded as a sea change in support and treatment England's Autism Act 2009 is to be updated

      Heralded as a sea change in support and treatment England's Autism Act 2009 is to be updated

      • Autism Act 2009 set out requirements for support and treatment in England
      • There is the Autism Act (Northern Ireland) 2011 but Scotland and Wales do not have legislation.
      • Revamped strategy will cover children and young people for the first time

      The NHS Long Term Plan has identified autism as one of its priority areas
      Picture: iStock

      It is ten years since the passing of the Autism Act 2009 in England. The legislation was meant to herald a sea change in the way adults with autism spectrum disorders were supported and treated.

      The act laid out requirements on everything from assessment to ongoing support, requiring the government to publish a dedicated strategy, which was to be reviewed and updated continually.

      Revamped strategy

      To mark a decade since the publication of the act, the government has agreed to the most significant refresh of its approach.

      Ten years

      since the Autism Act 2009 was passed

      Ministers have promised a revamped strategy by the end of this year, covering children and young people for the first time, as well as adults. Meanwhile, the NHS Long Term Plan has identified autism as one of its priority areas.

      The focus is likely to be increasing support in schools, transition arrangements into adult services, ensuring people with autism get physical health checks, and reducing the numbers who end up in inpatient settings.

      The National Autistic Society policy and public affairs manager Anna Bailey-Bearfield says: ‘The act has been good in that it has offered some protection at a time when services have been cut. There are now diagnosis and care pathways nearly everywhere.

      ‘But too many people still face long waits for diagnosis, and far too many people with autism who do not have a learning disability struggle to get help.’

      30

      Number of weeks on average to diagnose people with autism in 2018 – up from 16 weeks in 2016

      Source: Public Health England (2019) 

      Lack of training

      Ms Bailey-Bearfield also cites the lack of training offered to non-specialist staff across the health and care sectors, which can lead to people with autism being excluded from mainstream services.

      ‘Staff were meant to get training, but in many places this has not happened so they are not making the adaptations people with autism may need. Simple things like having a quiet space or dimming lights can make a difference.

      ‘That has a real effect on services and is a factor in the worse health outcomes people experience.’

      The charity is in the middle of its own inquiry with the All-Party Parliamentary Group on Autism, which it hopes to feed into the refreshed strategy. It is looking at everything from health and diagnosis to employment and housing.

      Scale of problem

      However, the scale of the problem can already be seen from the findings of several recent reports. Public Health England’s latest autism self-assessment of councils showed waiting times from referral to diagnosis had nearly doubled since 2016 from 16 weeks to 30 in 2018. It should take 13 weeks.

      And, once a diagnosis is made, there seems to be too little community support with the Transforming Care programme push to move people who have learning disabilities and autism out of hospital well behind schedule.

      ‘Autism is almost the missing branch of nursing’


      Kimberley Ashwin

      Kimberley Ashwin, an interim mental health liaison nurse for learning disability and autism at Oxford Health NHS Foundation Trust, says that often people with autism do not receive the support they need.

      ‘As a nurse you can specialise in learning disabilities at pre-registration, but there is not that career pathway for autism,’ she says. 

      ‘I have ended up doing training with psychologists and speech and language therapists to develop my autism skills.

      ‘It is almost a missing branch of nursing – you either go down the learning disability route or mental health route.

      The work is based around the nationally-recognised Green Light Toolkit, which focuses on making reasonable adjustments.

      System-wide issues

      But she says too often people with autism do not receive the help they need.

      ‘There are system-wide issues with autism being seen as an exclusion criteria for services sometimes.

      ‘Staff do not have the confidence or training to support people with autism.

      ‘For example, you see patients with selective mutism being turned away by speech and language therapists because it is seen as a neuro-related. Usually by highlighting how people have transferable skills you can open people’s minds a little.’

       

      There are also concerns about the use of seclusion and restraint in inpatient settings.

      Whorlton Hall exposé

      A report by the Care Quality Commission found out of 39 cases they had examined of people in long-term segregation, 31 were on the autism spectrum. This report was published around the same time as the BBC Panorama Whorlton Hall exposé, which raised further questions about inpatient care.


      Simon Jones

      RCN learning disability nursing forum chair Simon Jones says the Autism Act has been a ‘huge disappointment’.

      ‘We expected it to transform the support available. It hasn’t.

      ‘People with autism fall into two camps – those with a learning disability and those without one. Those with a learning disability should have access to multidisciplinary teams and ongoing support – although we know services are stretched.

      48%

      of councils in England reporting having a multiagency training plan

      Source: Public Health England (2019)

      ‘But those without a learning disability are perhaps in an even worse position. They don’t have access to the multidisciplinary support.

      ‘As a learning disability nurse it is so sad to hear of cases where people with autism are struggling and yet you cannot help.’

      Sensory overload

      To illustrate the point, he cites a recent case of a man in sheltered housing who was keeping himself in self-imposed confinement.  

      ‘It was simply sensory overload. As a nurse you could use your skills to work on desensitisation techniques to help people in this sort of situation, but that’s not how services are commissioned.’


      Ann Norman

      RCN professional lead for learning disability nursing Ann Norman says the push has undoubtedly been undermined by the ‘neglect’ of the workforce.

      Alongside the large number of vacancies in the NHS, she says there is complete lack of knowledge about what is happening elsewhere in the independent sector, and the police and prison services.

      ‘We only know the whereabouts of the 3,500 nurses in the NHS, but what about the rest of the 17,000 registrants? We need to know this to support staff.’

      ‘Brexit is dominating minds and, I suspect, sadly, the important issues families are coping with under enormous pressure will stay on the bottom of the pile.’

      Why is autism still considered a mental health disorder?

      Jo Minchin has autism and works as an expert by experience for a clinical commissioning group.

      ‘The Autism Act of 2009 in England was an important moment for autistic people, their families and carers because it acknowledged that autism needs to be recognised separately from learning disabilities and mental health,’ she says.

      But Ms Minchin questions whether that has happened in reality, highlighting the fact the 1983 Mental Health Act in England still defines autism as a ‘mental disorder’.

      Sectioned or retained

      ‘It ends up with so many autistic people being sectioned or retained in mental health hospitals, even though they don’t have a treatable mental health condition.

      ‘Many have an accompanying mental health condition, but it’s not one of the same.

      ‘Without properly understanding their autistic patients, it can be difficult for health professionals to make decisions about autistic people who are in distress.’

       

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