Axia ASD's autism concerns remain despite government headway
In The 2018/19 Parliamentary Review, best practice representative Axia ASD, a provider of diagnostic and post diagnostic services for those with neurodiversity, expressed a hopeful outlook on the plans for NHS England to make autism and learning difficulties a "key priority" in its ten year plan for the future.
However, in an interview with the Guardian in October 2019, world-leading autism expert Simon Baron-Cohen said that despite improved awareness and understanding of the condition, improvements in the lives of those affected have not been forthcoming.
One in every 100 people in the UK are estimated to be on the autism spectrum. This ranges from individuals experiencing severe developmental disabilities which require support, through to much milder traits.
The Autism Act, introduced by the government in 2009, was England's first disability-specific law, a matter which Axia raised in the Review. The Act obliged the government to implement a strategy to improve support for affected individuals, yet Baron-Cohen feels it has fallen short of what was promised.
Baron-Cohen told the Guardian: "Many autistic people and their families will tell you that while the [government's] autism strategy has raised awareness, nothing much has changed on the ground in the last 10 years.
"Despite our research flagging up suicide risk and other kinds of vulnerability, too many autistic people are languishing unsupported because there's no new money in social care for autism. This is unacceptable."
Axia had highlighted the shortcomings of the 2009 Autism Act even earlier.
The Chester based services provider for the neurodiverse wrote in their article that although the Autism Act of 2009 was "viewed very positively" and paved the way for a "clear strategy and statutory guidance" by the year 2010, unfortunately it made no new funds available, mirroring Baron-Cohen's concerns.
Another issue over which Axia and Baron-Cohen cross paths is the long waiting time for diagnosis.
In its article in The Parliamentary Review, Axia outlined that on average, the waiting time for both children's and adults for autism diagnosis was two to three years. It also refers to a campaign which the National Autistic Society launched in response back in 2015, calling on the government and NHS to take action.
As Axia also alluded to in the Review, a firm commitment to record and publish waiting times did not come from the government until 2017.
Yet, even in the face of that response, issues over waiting times still persist.
Baron-Cohen said: "Locally, we've got this [autism] research centre and world-famous university, and all around it people are sitting on waiting lists, unable to be seen, and they're struggling".
Axia's hopeful outlook for the future with regards to more recent government initiatives centred around a piece of government legislation in Wales and a major announcement from NHS England.
In July 2018, the Autism Bill for Wales was published, which Axia said placed "new duties on public services to improve the lives of individuals affected in Wales."
The following month, as Axia wrote, NHS England announced that autism and learning disability would become a "clinical priority in their upcoming ten year plan to improve health services in England".
The director of the National Autistic Society the time called the announcement a "potential game changer" in making autism a "core part" of the NHS, a point which Axia agreed with.
However, the latest edition of the Care Quality Commission's annual state of care report, supports Baron-Cohen's views that there is still much to do.
The report highlighted grave shortcomings into mental health services for those with autism and other learning disabilities.
The report highlighted numerous autistic people being confined to mental health hospitals, often far from their homes and families, simply because there is a lack of services providing any other place to go..
The CQC's report also shed light on falling standards in several specialist inpatient services. In its report from October 2018, one per cent of inpatient services for individuals with autism and/or learning disabilities were found to be inadequate. As of October 2019, the rate of inadequate service providers is now at ten per cent.
That is just the tip of the iceberg. The report also uncovered that seven per cent of child and adolescent mental health inpatient services were inadequate as of October 2019, compared to two per cent the previous year. Eight per cent of acute wards for adults of working age and psychiatric intensive care units were also rated inadequate, an increase of six per cent on the 2018 findings.
Since October 2018, 14 independent mental health hospitals that admit autistic people and/or individuals with learning disabilities have been rated inadequate by the CQC. This is not always with regard to the standard of care being administered, but rather that care has often been found to have been given by staff who have little understanding of autism and indeed of good autism practice.