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Over 2,000 children waiting for an autism diagnosis in Northern Ireland

By Victoria O'Hara

Published 02/02/2016

More than 2,000 children in Northern Ireland are waiting for an autism diagnosis - sometimes for more than two years - leaving desperate families calling for urgent action to reform the service
More than 2,000 children in Northern Ireland are waiting for an autism diagnosis - sometimes for more than two years - leaving desperate families calling for urgent action to reform the service

More than 2,000 children in Northern Ireland are waiting for an autism diagnosis - sometimes for more than two years - leaving desperate families calling for urgent action to reform the service.

Stressed parents facing a long wait for a vital assessment and have described the current system as a "shambles".

The shocking figures show that the Belfast Trust has the longest waiting time, with children facing a 20-month delay for a diagnosis.

The Health and Social Care Board (HSCB) said it doesn't have the resources to cope with the growing demand which has seen 3,000 annual referrals for assessment.

But parents and autism experts have spoken of the importance of early intervention and the need for a major financial boost.

A further breakdown of figures show how there is a postcode lottery of waiting times across each Trust.

In Belfast there is a waiting time of up to 94 weeks, while in the Northern Trust families face a wait of up to 65 weeks.

In the Southern Trust, meanwhile, there is an average 12 week wait.

The HSCB said it is aware of the "frustration" felt by families and there will be a bid for a further £2.8m recurrent funding in 2016/17 to be aimed at autism services.

There has also been a short term funding boost of £250,000 made available to address the waiting list pressures in each Trust. But calls have been made for a long-term plan to address the spiralling problem.

Autism is a developmental disorder that impacts how a person relates to the world and others around them. It can affect language skills, social skills and understanding other people's behaviours.

Nicola Booth, a consultant behavioural analyst with the charity PEAT NI (Parents Education as Autism Therapists) said the families she meets on waiting lists are under "phenomenal pressure".

"Parents are stuck in that they can't access statutory services until they get that diagnosis. So they are sitting there lingering," she said.

"Think about the parent who is sitting there with a child who is involved in self injury and they have no clue about how to deal with that behaviour. The stress of that and then trying to go to work on maybe two hours or no sleep because the child has been up all night.

"There are other family members, too, but life goes on. We are seeing them at their lowest ebb and they are crying for support," she explained.

Ms Booth added: "I think parents of children with autism are dealing with a phenomenal amount of stress and have no physical marker to their condition.

"Parents, too, can end up restricting their own social life because they don't want people staring and judging their child in public.

"They need early intervention - it is the key. These young people have so much to give society."

A HSCB spokeswoman said a regional review of the development and delivery of autism services was being carried out.

"As part of this review, the Board has engaged a panel of national experts on autism who will work with Trust staff and the families' of children with autism to redesign services to create a regionally equitable model, with access to early intervention services, and significantly improved waiting times," the spokeswoman said.

  • For more help visit www.peatni.org/ or www.autism.org.uk/

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