'Heartbreaking': Autism diagnosis delays forcing families to find money for private assessments warn Derry & Strabane reps

Elected representatives have now backed a motion proposing that the Council write to the Minister for Health Robin Swann, Minister for Education Paul Givan, and Minister for Finance Caoimhe Archibald, to “urgently develop and present a business case” with clear reduction targets for assessment wait times.

The motion was tabled by SDLP councillor Lilian Seenoi-Barr at the Full Council Meeting on Wednesday, and Derry & Strabane Council will seek collaboration from all other Councils across the north to support the business case and action plan.

Councillor Seenoi-Barr warned that “unacceptable waiting times for autism assessments” were “causing significant hardship and developmental delays”, as she urged the Council to recognise that “early intervention is critical for developing key skills in children with autism, yet the backlog hinders timely support, impacting individual potential and straining educational and healthcare services.”

Over 11,000 children in Northern Ireland were on the paediatric Autism Spectrum Disorder (ASD) diagnosis and assessment waiting list at the start of this year, with the longest waits standing at a “remarkable” four-and-a-half years, the Foyleside representative said, adding:

“Over 3,000 adults were also waiting for an assessment with 62% waiting longer than a year. In the Western Trust alone, 2,238 adults and children are waiting for assessment.

“The mental health toll on families is profound and, given how important early intervention is, these waits are unsustainable and threatening the opportunities of so many people across the North.”

DUP Alderman Julie Middleton said waiting times were “simply unacceptable”, and it was “heartbreaking” that families were resorting to costly private assessments.

Alderman Middleton added: “The Department of Health has spoken publicly about the cross-departmental autism strategy for 2023-2028, an action plan for its implementation, and a new standardised pathway for referrals and assessments.

“We must see the Health Minister take decisive steps when it comes to reviewing and implementing action, as this would greatly improve the chances of early intervention, access to services, family support, and confidence for the autistic person.”

Councillor Seenoi-Barr concluded: “As a mother of a son with autism, I know first hand the challenges families are facing without an assessment.

“I had to fight for my son for over four years to get services, so I hope that the Ministers will recognise the urgency of taking action on this issue.”

It was confirmed recently by Health Minister Robin Swann that the number of children and adults waiting for an autism assessment in the Western Trust more than doubled over the past five years, in answer to a question tabled by Colr. Seenoi-Barr’s party colleague Mark H Durkan MLA.

At the end of December 2019, there were 998 patients waiting on an assessment. By the start of this year, this figure had risen to 2,238 – an increase of 1,240 patients.

The year before in 2018 the Journal had reported that there were 493 children and 81 adults across Derry, Limavady, Strabane and the wider western region, waiting to begin assessment to detect if they are on the Autism spectrum.