Parents feel ‘abandoned’ by long waiting times for autism diagnosis

Tara McIntyre with her son Matthew, who she said has been on the autism diagnosis waiting list for more than a year
Tara McIntyre with her son Matthew, who she said has been on the autism diagnosis waiting list for more than a year

Parents of children with autism say they feel “abandoned” by long waiting times for diagnosis that can sometimes stretch for more than a full year.

The News Letter can reveal today that nearly 2,000 children across Northern Ireland are awaiting an autism diagnosis, with dozens of children waiting more than a year.

A leading autism charity has described the situation in Northern Ireland as “an absolute disgrace”, while a health trust has admitted its services can’t keep up with demand.

The number of children diagnosed with the condition has more than doubled in the past five years - from 1,047 in the 2013-14 financial year to 2,345 in 2017-18.

Early intervention in autism is key and parents have told the News Letter they feel let down and “disheartened” by the long waiting times.

Tara McIntyre is a mother-of-two from Londonderry whose four-year-old son, Matthew, has been awaiting diagnosis for over a year.

“All these children, like Matthew, are being consistently failed by an underfunded and under resourced service,” she said.

Kerry Boyd, chief executive of charity Autism NI, said it is an “absolute disgrace” that so little is being done for children with autism.

She added: “Waiting times have spiked in Northern Ireland particularly over the past five years. This inevitably causes parents great stress, as this time is often filled with worry and uncertainty.”

The most up-to-date figures available show that almost 2,000 children are awaiting assessment, with 52 waiting for more than a year.

The figures vary significantly across the five trust areas and parents living in the Western trust area, where the number of referrals is highest, can expect to wait longer than elsewhere.

Jaclyn Harron, a mother-of-three who lives in the Western trust area whose daughter Aoife was recently diagnosed with autism, said: “From the first time we went to the health visitor it took around six months to see the paediatrician.

“After we met the doctor, we got an appointment fairly quickly actually for physiotherapy. But then seven months went by and we didn’t hear anything. “We were left for a year, panicking, in limbo, with no word whatsoever. If we had waited for them, she (Aoife) would have been nearly five years old by the time they got back to us.

“She got her diagnosis in December. We went away in December still not really any wiser. We were sent off and told you’ll get your post-diagnostic appointment some time around Easter — if you’re lucky — and that was it.

“We had to organise to see an occupational therapist privately. Everything you read tells you how important early intervention is, so we couldn’t really wait. We shouldn’t have to be paying for those things.”

Tara McIntyre’s son, Matthew, is four years old and has been on the waiting list in the Western trust area for over a year.

She said there is a “real issue” with autism services that needs to be addressed.

“It was just before his second birthday and I was aware that things weren’t really the way they were with my other child — I have a 14-year-old as well you see and I have brother with Asperger’s so I would have noticed little traits

“Despite the daily stress and worry for Matthew, he is an adorable, unique child with individual, specific needs,” she said.

“As a family we feel that all these children, like Matthew, are being consistently failed by an underfunded and under resourced service.

“I am a sister in cancer services in Altnagelvin Hospital so I know the pressures of providing a service to the public.

“However this is a real issue that needs more recognition. It needs to be highlighted.”

David Campbell, who works with the support group Circle of Support, said: “It’s very disheartening waiting all that time. Parents feel abandoned and frustrated.”

The charity Autism NI say “great stress” and “uncertainty” is being faced by parents due to waiting times that have “spiked” in recent years.

Chief Executive Kerry Boyd told the News Letter the situation in Northern Ireland is “an absolute disgrace”.

“Waiting times have spiked in Northern Ireland particularly over the past five years,” she said. “This inevitably causes parents great stress, as this time is often filled with worry and uncertainty.

“Many parents or carers are waiting up to two years to receive a diagnosis of autism for their child. This is in direct contradiction to the children’s care pathway which states that all children should be assessed within a 13 week period.”

She continued: “After intense lobbying from Autism NI and the All Party Group on Autism, Minister Hamilton invested £2m in diagnostic services in 2016. We now know that this was nowhere near enough, as waiting times are still as lengthy as ever for many families.

“Early intervention is key to a child having the best outcomes in life, yet so many of our children are not able to access this vital service.

“Autism NI therefore calls on the Department of Health to ensure that the autism strategy created in 2013 following on from the Autism (NI) Act 2011 is implemented fully and the subsequent action plans are fulfilled as promised. To date the first action plan hasn’t even been completed, yet all three action plans should be completed by 2020.” She added: “This is an absolute disgrace.”

A spokesperson for the WesternTrust said: “The Western Trust Children’s Autism Service is committed to seeing children for assessment and intervention in a timely manner. Unfortunately given the significant increase in referrals for both diagnostic Autism assessment and intervention the waiting time for assessment has increased. The service does not have the capacity to meet the current demand. Significant efforts have been made by the our Children’s Autism Service to reduce the waiting times and also to ensure that children receive a high quality clinical assessment that meets clinical guidelines. There has been increased efficiency in gathering information from schools and other professionals prior to a child’s assessment and additional collaborative working with other services that are involved with children. Staff have also provided overtime clinics at the weekend. These efforts have resulted in an increase in the number of assessments concluded.

The spokesperson continued: “The Western Trust is working closely with the Health and Social Care Board (HSCB) and the Department of Health (DOH) to highlight these issues. We have received some additional investment to support the recruitment of new staff both within diagnostic assessment and intervention and recruitment is currently ongoing. It is anticipated that this will result in a reduction in waiting times and the case for additional resources for children with Autism will continue to be highlighted. The Western Trust apologies for the length of time waiting for both assessment and intervention and is committed in its efforts to reduce waiting times and enhance service provision for children with a diagnosis of Autism and their families across the Western Trust area.”