Autism: Stalled plans for NI autism job 'hugely frustrating'

Getty/Nora Carol Photography Autism word and alphabet letter beads - stock photoGetty/Nora Carol Photography

The head of an autism charity has said it is "hugely frustrating" that plans to introduce an autism reviewer in Northern Ireland have stalled.

Legislation passed last year places a duty on the Department of Health to strengthen autism support and appoint a reviewer to scrutinise services.

The Northern Ireland Office (NIO) said that, in the absence of an executive, the position can not be filled.

Kerry Boyd, Chief Executive of Autism NI, said families were being let down.

The bill amended the 2011 Autism Act and also required the development of a cross-departmental training strategy and the creation of an autism information service.

"It is for someone to take the reigns and ensure the autism strategy is delivered in the way it should be and should have been over the past number of years," she told BBC Radio Ulster's Good Morning Ulster programme.

Ms Boyd said some children in Northern Ireland were waiting up to five years for a diagnosis.

An interim strategy has been extended.

However, she added that in the previous strategy only one out of three action plans was accomplished.

"That is why we felt the need for an independent autism reviewer to ensure the action plans get done," she said.

Funding issues

The new strategy should have been released and the role filled on 1 April.

"Due to that and issues we are facing in Northern Ireland neither of these have been done.

"The biggest crisis we are facing is that there is no funding for these services," said Ms Boyd.

"There is no consistency across NI and waiting times for a diagnosis is not consistent - some areas children are waiting up to five years and adults up to six years," she added.

Pam Cameron and Kerry Boyd stand with a young girl
Pam Cameron, who introduced the Autism Bill, and Kerry Boyd pictured last year when the bill passed

She added that Autism NI gets 6,500 calls a year to its helpline and calls continue to increase.

"A lot of families and adults are paying privately to get diagnosis and having to pay up to £1,400 to get any kind of support.

"The stress that it causes the family is terrible," she told the programme.

The NIO said in a statement that the fact that the role had not been filed was "an example of some of the necessary strategic decisions and actions not being taken in Northern Ireland".

"The UK government remains of the view that restoration of the devolved government, in line with the vision of the Belfast (Good Friday) Agreement, offers the most immediate way of delivering public services," it added.

Reacting to the statement Ms Boyd said: "I think there is no funding for it. I have been told that there's no funding for it.

"I think we need a functioning government, and someone to make decision and a minister of health in place," she added.

She said that it should be "launched anyway," despite the lack of executive.

"The longer they leave it the worse this crisis is getting," she added.

The Democratic Unionist Party (DUP) is currently involved in a boycott of the Stormont Assembly because of objections to post-Brexit trade rules agreed between the EU and UK.

Ms Boyd said that the DUP's Pam Cameron, who brought in the bill to the assembly was "a fantastic MLA for autistic people and their families".

But, she added, that "some sort of agreement needs to be reached and Stormont needs to be up and running."