Hope that five-year wait for autism diagnoses could end

Health & Social Care has prioritised its budget to enable the appointment of a community paediatrician, which will allow the committee to fulfil its publicly-stated objective of ensuring the implementation of a fit-for-purpose autism assessment pathway in the new year.

The new post holder is due to start in February, subject to any Covid-19 restrictions, and their key priority will be looking at how best to reopen the diagnostic pathway.

Autism Guernsey does not have any control over whether HSC provides diagnostic services or not. Its role is to provide support for individuals and families with autism who do not qualify for statutory support from the States.

A lot of individuals with autism have learning difficulties and will be picked up and supported by HSC and Education.

But those without learning difficulties are supported by the charity.

‘We have known about the problems waiting for diagnostic assessments for a long time. People have raised issues with us, the National Autism Society locally and GPs,’ said Andrew Warren, chairman of Autism Guernsey.

‘I know there are some families on the island who have been waiting five years for an assessment.’

There are problems in getting a diagnosis for both children and adults, and while there are people on-island who can carry out assessments for adults, there has not been staff to perform assessments on children for much of the last five years.

HSC’s intention to employ someone with these skills is extremely good news, Mr Warren said.

‘Recently, the only realistic option to get an assessment was to do it privately, which generally means going off-island.’

When asked why getting a proper diagnosis was important, Mr Warren said it can be life-changing for the person and their family.

‘Suddenly they can understand the reasons behind things that never made sense before or things that they had been having difficulties with.

‘For many, like TV presenter Chris Packham, who spoke out about his autism diagnosis, it improves the quality of life hugely.’

Recognising that getting specialist skills in Guernsey can be difficult sometimes, as well as the many competing priorities in HSC, Mr Warren said this was a really positive step, but would have liked for it to be prioritised some years ago.

In the autism framework, which formed part of the disability legislation of 2016, the pressing needs for the next few years were outlined, with a reduction in the assessment waiting list a key one.

This was agreed by Autism Guernsey, the local branch of the National Autism Society and HSC.

In terms of recruiting a specialist, Autism Guernsey has not played a role but hopes to be kept informed about HSC’s plans so it can offer advice where appropriate.

Mr Warren said it was important to remember that this specialist was for children’s services only, it does not solve the issues in the adult services.

‘There are people on the island who can do [adult assessments], but they just do not have time because they are being pulled in so many different directions,’ he said.

Generally, diagnosis involves parents providing details of growth for the first few years of a child’s life.

‘As you get older, that becomes more difficult to do accurately,’ he said. ‘Not impossible, but more difficult.’

A spokesman for HSC said the committee was mindful of the real and practical challenges that islanders with autism and their families face and is committed to delivering the autism framework.

‘There are challenges – not least associated with the recruitment and retention of staff in what is a specialism experiencing shortages nationally – but we are working to address these wherever possible and ensuring that individuals can access the support they need irrespective of whether they have a diagnosis,’ they said.