Ann Marie Ferguson said her son’s case was now critical
About 1,300 children in Northern Ireland are waiting to be assessed to find out if they have autism, the BBC has learned.
In the Belfast Health and Social Care Trust alone, there are 500 cases waiting to be seen.
A local charity described these figures as conservative.
Autism NI accused the executive of moving backwards rather than forwards in attempting to address the problem.
According to a 2014 health department report, the rate of Autism Spectrum Disorder (ASD) among school age children has increased by 67% since 2010.
Despite the increase, the BBC can reveal there is just one full-time ASD coordinator in place across all the five health trusts.
While on paper the average waiting time for an initial assessment is 13 weeks – in practice a growing number of families are having to wait up to 12 months before their child is assessed and diagnosed.
As some of these children require a “statement” from their health trust to receive extra help in school, families say their child’s health and education are suffering.
Ann Marie Ferguson, from Antrim, says her son Cormac’s case is now critical.
She accused the Northern Health Trust of letting her nine-year-old son down.
Cormac has been seen by the Northern Health Trust, but is waiting on an assessment from their ASD specialist team
“This time last year Cormac walked out in front of a moving car,” she said.
“He had had a bad day in school. There had been an outburst and sometimes the school doesn’t know how to react. Leaving the school he walked out in front of a car. Understandably everyone was upset and concerned. It was dreadful.”
Cormac Ferguson has been seen by the Northern Health Trust, but is waiting on an assessment from their ASD specialist team. That first meeting took place eight months ago.
According to his mother, the incident involving the car proved he needs to be seen urgently.
“What he told me was the worst fear any mother can hear. Basically Cormac said ‘Mummy, I just want to be happy.’ He said I had told him that when people die they go to heaven and are happy. So in his mind if he died he’d go to heaven where he would be happy. That is a scary thought process for a nine-year-old. Basically, he just threw the head up and said this is it.”
After an initial assessment eight months ago, Cormac was referred to the ASD team at the Northern Health Trust. They are still waiting to hear when that appointment is taking place.
In a statement, the Northern Health Trust said that since its autism service had been established, there had been a significant increase in referrals year-on-year.
“Since 2010/2011, there has been an increase of 80% in referrals,” the trust said.
The trust said the majority of children referred had already been assessed by a health professional, such a consultant paediatrician.
“The outcome of this initial review may result in a referral to the specialist autism team,” the statement added.
“Once a referral is received by this team, the information is reviewed and data collected to support the assessment process.
“Assessment for an ASD is a process rather than a single event which can occur over a series of appointments, and take a number of months to complete.”
The trust said “service pressures”, an increase in referrals and staff vacancies, meant there was a waiting time for appointments.
It said it was trying to address these issues.
In a separate development, the family learned that their request for an assessment with an educational psychologist has been turned down.
By law a child must be assessed and diagnosed before receiving a statement.
A statement of special educational needs (‘a statement’) is a document issued by your Education and Library Board (ELB). It describes your child’s special educational needs and how these needs will be supported. A statement is a legal document: your child must receive the help that is detailed in it.
A statement can only be issued once a statutory assessment has been carried out by your ELB.
Autism NI’s chief executive Arlene Cassidy said the executive was moving backwards instead of forwards
Autism NI said it was disappointed that the Autism NI bill passed in 2011 had made little impact.
The act was designed to ensure those affected are afforded the same entitlements as those with other disabilities.
According to the charity, compared to Scotland, health and education sectors in Northern Ireland are failing those struggling with the condition.
Autism NI’s chief executive Arlene Cassidy said the executive was moving backwards instead of forwards.
“There has been a significant increase each year in calls to our family support team. So far this year the organisation has dealt with over 2,000 calls. In 2010 that figure was 816,” she said.
“These families require help and advice often involving follow-up calls and meetings. They turn to us because either the trust or the board can’t help them or help them quickly enough.”
Julia Irvine’s son Nathan is one of the 500 cases in the Belfast Health Trust.
According to Julia, she wrestled with the system for almost a year.
However, 24 hours after her local MP got involved, the Belfast Health Trust called to offer her an appointment within six weeks.
“I was disgusted that my voice was ignored, but they felt threatened after being called by a politician.”
Julia told the BBC: “There is no system in place. You try and get a medical referral for your child, but that means nothing really in an educational context because then you have to start fighting for a statement. That’s a separate process.
“There is no joined-up thinking. No-one talks to each other. Your educational psychologist may send in a report but that is about the length of it. Everything is a fight.”
Autism – Google News