Wait times for an autism diagnosis ‘unacceptable’

Chris Dunne, CEO of Autism Jersey Picture: ROB CURRIE

Chris Dunne, chief executive of Autism Jersey, said that one of the key aims of the new policy was to reduce the 20-month wait time.

One mother, whose son is autistic, described the waiting list as ‘unacceptable’ and said it was leaving families ‘in the dark’.

Earlier this year it was revealed that the waiting time for an autism assessment was 20 months – having stood at about three and a half months before the start of the Covid-19 pandemic.

Autism Jersey estimates that there are 1,100 autistic people in the Island, although information about the number of people on the waiting list was unavailable at the time of publication.

Mr Dunne said: ‘The 20-month period is too long and it is something the government is looking to take action on, which is a good thing.

‘We are going to be working alongside the government to address this and we have offered help to tackle this. We can provide support through our counselling services to families who have recently had an autism diagnosis or are awaiting a diagnosis and are feeling those initial pressures.’

Mr Dunne has made a final rallying call for Islanders to respond to their survey, which closes tomorrow and which will help shape the priorities of the strategy.

He said the group working on the strategy hoped to publish a summary report of its findings by the end of this month, with a view to releasing the strategy before the end of the year.

He added: ‘It is vitally important to understand the priorities for autistic people and their families, what they want from us and the support they require. Some of the topics we are looking at include access to a diagnosis, education, employment and life in general. However, we don’t want to pre-empt things because autism is a complicated thing and everyone’s individual experience is different. There is a massive range of needs.’

One mother, whose son is autistic, has called on Islanders who are affected by the condition to complete the survey.

She said: ‘Autism is not the same for each person. Every individual’s needs are specific and can be very different from one another. That is why people need to get involved with this survey so that they can let the charity know what they would like to see included in this strategy and detail how it can cater to the needs of their child.’

She added: ‘I would like to see children with autism given a specific tailored support package from a young age. I think that a lot of problems I have experienced with my son as he has grown up could have been avoided if he had a support system, made up of a social worker and various autism specialists, that was tailored directly to his needs.’

Another mother, whose son and daughter were both diagnosed with autism at a young age, added: ‘The problem is that the care received for people with autism is often like putting a square peg in a round hole. There is no one-size-fits-all approach. Education, services and care for autistic children should not be a case of just ticking boxes. Our services need to think outside the box and cater specifically for each individual’s needs.’

She added: ‘The current waiting times for a diagnosis are unacceptable. The reason people go for a diagnosis in the first place is because they know something is up with their child. That is 20 months of being left in the dark, not knowing what is going on, and that puts a lot of pressure on parents.’

To fill out the survey, visit autismjersey.org/news.

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