Parents and a leading charity are pinning hopes on Stormont moving to bring NI up to speed with the rest of the world, writes Mark Bain
Almost one in every 20 school-age children in Northern Ireland has been diagnosed with autism.
It is a startling figure — possibly the highest in the world — and means that if you take every classroom, at least one child will have been diagnosed on average.
The Department of Health’s latest figures show more than 13,000 children between the ages of four and 15 have a diagnosis of autism. That is an estimated 4.5% of the school-aged population — one in 15 boys and one in 50 girls.
The proportion of children with autism in schools in Northern Ireland has more than trebled in a decade.
In one way that can be looked at as good news. Northern Ireland is amongst the best countries in the world at spotting the signs. The Autism NI Act of 2011 has proved successful in that respect, but that is where the good news ends.
That act has been a victim of its own success. Once autism, such a wide-ranging, multi-faceted behavioural, communication, speech and social skills disorder, is diagnosed, what happens next? We’re amongst the worst in the world at getting the support to those who need it.
Over a decade, thousands of children have been failed. Waiting lists for a diagnosis remain lengthy, often robbing children of years of specialist care.
As late as the 1990s, children with suspected autism in Northern Ireland were still being sent to London for a diagnosis.
It could all change in the blink of an eye, if Stormont moves quickly on a Private Members’ Bill introduced by DUP MLA Pam Cameron. Leading charity Autism NI is pinning its hopes on it. Parents are too.
Alana Patterson is mum of two autistic children, Isla (8) and Lincoln aged three.
Fearing her children would be left behind, she made the decision to pay privately for a diagnosis. It has cost thousands of pounds from her family budget and it is something that could have been made so much easier had action been taken sooner at Stormont to put measures in place.
“I’m constantly battling to secure services for my two children,” she said.
“The lengthy waiting lists for diagnosis and support are completely unacceptable. I was forced to pay privately for my youngest child to receive a diagnosis so we could access support for him.
“So far, I’ve had to spend thousands on my children. I’m lucky. I have had help from my family to pay for private appointments, but I know many parents who are at breaking point because they cannot afford to do the same, and it is just heartbreaking.
“This Private Members’ Bill will be the start of real change for so many families, change the autism community so badly needs.”
For Pam Cameron, the DUP MLA and chair of the All-Party Group on Autism who is leading the way through the passage towards change at Stormont, the answer is simple. It will make lives better.
The bill received its first reading in the Assembly earlier this month. It is aimed at strengthening the current Autism Act 2011 — crucially, two of three actions promised by an autism strategy over 10 years ago are not yet fulfilled.
“The Autism Strategy from 2013-2020 and resulting action plans failed to deliver what was promised, as only one out of three action plans were ever completed. There has been no choice but to introduce this Bill, with the full support of the All-Party Group.
“The aim of the legislation is to strengthen the current Autism Act (NI) by introducing an independent scrutiny mechanism to drive forward the regional implementation of autism services.”
With autism, there is no one-size-fits-all approach as families and the charities supporting them are quick to stress.
There have been verbal commitments from previous Education Ministers to progress towards making training for teachers mandatory. Again, little has happened.
For Kerry Boyd, chief executive of Autism NI, a charity set up over 30 years ago which now has 22 support groups across Northern Ireland, the growth in rates has not been matched by government investment in services.
The charity received over 5,000 calls to its helpline over the course of the Covid-19 pandemic from parents “at the end of their tether”.
Ms Boyd also raised concerns about the major disparities in diagnoses and waiting lists across health trusts, with many families forced down the private route.
“Every year the prevalence rates keep getting higher. Ten years ago, the rate was one in 100, now it’s one in 24 with 4.2% of the school population diagnosed last year.
"We’ve got possibly the highest rate in the world. Hong Kong was supposed to be highest at 3.2%,” Ms Boyd said.
“Support and provision is few and far between and in some cases the level of services depends on where you live.
"This should never be the case.”
The Department of Health recently published an interim autism strategy for the next two years, with Health Minister Robin Swann pledging that services must be improved as a “priority”.
It has come late in the day for too many, with already stressed families battling the system to get the support their children need.
At Queen’s University, where the expertise in autism intervention is renowned around the world, the feeling is that the experts on the doorstep have been simply ignored.
Professor Karola Dillenburger, from the School of Social Sciences, Education and Social Work at the university, has been researching the disorder for 20 years.
“Ten years ago we suddenly got better at the diagnosis,” she said. “But that created a huge backlog.”
Prof Dillenburger said countries from across the world are tapping in to the expertise in Belfast, with Ulster University also having a world leading research centre, but the response locally has failed to materialise.
“We deliver online courses around the world. While we have presented at Stormont, we have had no further input into any strategy. We’ve been knocking at the door to get involved,” she said.
Prof Dillenburger said the universities could still offer a key role if progress was to be made in training teachers.
“We have been able to pinpoint signs of autism in children as young as six months old,” she said. “And that early intervention is critical.
“We’ve shown that teaching children to imitate at that age can set them off on a completely different trajectory through life.”
If more children are not to be failed, the new legislation needs to be passed urgently.
Already years behind the curve, thousands more are awaiting a diagnosis.
When it comes, families need to know the right support is there, waiting and readily available.
That means teachers who are trained in dealing with autism, experts who can help and a special education needs system that is fit to deal with a problem that is out of control, but can be tamed easily with the right strategy and implementation.
Only 22% of adults with autism are in any type of employment — and the onus is on the Assembly to do better.
A Department of Health spokesperson said: “The Health Minister, Robin Swann, has publicly expressed his concern in relation to current waiting lists for autism assessments and the impact that this can have on the emotional health and wellbeing and personal development of individuals.
“The Minister has stated, whilst it is abundantly clear that access to services and support for individuals and families must improve significantly, given the prevalence of autism today we should no longer expect autistic people and their families to adapt to society.”
They added: “In March 2021, the Minister published an interim Autism Strategy which will set the course of direction for improvement in the years 2021 and 2022; this will include health and education working more closely together, improved provision of early intervention and standardised regional services, and a greater awareness and understanding of the needs of autistic people within our workforce, our services and our communities.”
The Department of Education said: “The Education Authority (EA) is committed to continuing to develop and provide services for children with autism and young people requiring more specialist services and support.
“These services are based on a model of inclusion and include: teacher training; pupil interventions; and support and referral when required to the EA’s Autism Advisory and Intervention Service and Middletown Centre of Autism.
“The EA has put in place a range of autism specific classes attached to mainstream schools at both primary and post-primary level and is considering any additional requirements for September 2021.
"These classes are based on the assessed need for this provision.”