Off the spectrum

New figures published by Dublin City University have provided the first accurate measure of autism rates in Ireland. At 1 per cent, the incidence here is in line with figures reported in the UK and US.

The study, launched to coincide with World Autism Awareness Day, last Tuesday, finally provides the Irish education and health community with a baseline on which to build a plan for services, says its coauthor Dr Mary Rose Sweeney, of the school of mursing and human sciences at Dublin City University.

“There were 9,000 children involved in the study in three counties,” says Sweeney. “Finally we have a figure so that we can monitor whether the incidence of autism is in fact growing, as it is often suggested.”

The new data has obvious implications for the allocation of budgets in the education sector. Government policy is for all children with a diagnosis of autistic-spectrum disorder (ASD) to be mainstreamed where possible, and provided with appropriate support in the classroom, or accommodated in ASD units attached to mainstream schools.

In light of these new figures, a typical school might have one or two children with ASD enrolled at any time. In an ideal manifestation of the policy, the State’s 1 per cent of children with ASD would be evenly dispersed across our school system.

But the reality is that there are bottlenecks and gaps in service throughout the system, from preschool right up to Leaving Cert.

According to Kevin Whelan of Autism Action Ireland, the Department of Education and Skills is facing an "explosion of need" for ASD supports.

Many preschool parents face lengthy waiting lists for places in dedicated early-education centres. Parents seeking primary-school places for their children often encounter schools that are unwilling to take their children and others that have the resources but not the places.

At postprimary level, there’s a capacity disaster waiting to happen, according to those who advocate for the sector.

At preschool level, parents report long waiting lists for services at a critical point in the development of an ASD child. Margaret, the mother of a four-year-old boy diagnosed with autism last year, has been told that she must go on a two-year waiting list for her closest preschool, in Tallaght, in south Dublin. She has also put his name down for units farther afield, but he is far down the list in all cases.

“There are 160 people on the list before me in Tallaght,” she says. “It could be two years before he gets a place, I’ve been told. In the meantime I can’t bring him out of the house because he’s a danger to himself and others. I feel very sorry for him. He doesn’t have a life.”

A number of Dublin parents report similar problems accessing preschool places for their children.

In

debt to the department
Once a diagnosis of ASD has been given, parents can apply for a h

ome-tuition grant to pay for professional support for the child at home. It’s a solution of sorts for parents who, like Margaret, cannot get places for their children in preschools.

Many parents choose to spend that money on applied behavioural analysis (ABA), an intervention favoured by many parents of special-needs children but sidelined by the Department of Education and Skills as a matter of policy. Many parents insist that ABA, which largely employs one-on-one language and skill development between children and a qualified ABA practitioner, offers the best outcomes, especially when children are very young.

Department policy is that ABA should be available only as part of a broader suite of interventions in a mainstream setting.

However, under the eyes of the department, parents have been taking their home-tuition grants and feeding them into ABA preschools, where economies of scale make it more practical to deliver services to greater numbers of students, while offering children the chance to learn in a school-style environment.

It’s an Irish solution to an Irish problem – a tacit blessing for a school type not officially sanctioned by the department but allowed to function using redirected department funds.

However, last month parents of children attending the Pals preschool in Blanchardstown, which provides ABA programmes for children with speech and language delay and diagnosed disorders such as ASD and Down syndrome, were asked by the home-tuition-grant unit to provide details of their children's tuition. Details such as how many hours of one-on-one ABA tuition was provided and how many hours were spent in group work.

The parents returned an honest breakdown of the way their children’s time was spent at Pals, which amounted to 15 hours of one-on-one ABA tuition and five to 15 hours of group work.

The parents received follow-up letters informing them that because they had used home-tuition-grant funding, which is designed for one-on-one tuition, to have their child part-tutored in a group setting, they owed the department money. In some cases the demand was up to €3,000.

Dr Kristin Maglieri is course director of the postgraduate diploma in applied behavioural analysis at Trinity College Dublin and a member of Pals' board of directors. She believes last month's move to hit parents with bills for thousands of euro may be part of a move to close schools like Pals down.

“We can’t keep the school open if it has to be all one-to-one; the financials don’t work,” says Maglieri. “If we close down, 15 students will have to find places, and we have 20 more on a waiting list. They forget that we are actually providing a service to the community.

“For the money the department gives us the children access 30 hours of specialised ASD support, including 15 hours of one-to- one tuition. It’s a good deal for the department, and it follows the eclectic model that that department claims to favour, which is a mix of approaches. To my knowledge, no other schools have yet received this letter, so they may be targeting schools one by one. None of these schools can survive using a one-on-one ratio, and the department knows it.”

Maglieri is particularly disturbed by the approach taken by the home-tuition-grant unit. “The parents were given four days to respond to the original request for information and then hit with these bills. It’s a vicious approach, and I can only assume that they want to close us down. They don’t want these schools to be set up at all, and they are slowly trying to wipe out the home-tuition-grant scheme.”

Officially, there have been no cuts to scheme, which issued €11 million in grants last year. This included 531 early-intervention autistic-spectrum-disorder cases at a cost of €5.3 million.

Despite what has happened to parents in Blanchardstown, the department claims that the grant scheme’s budget has not been cut.

Once a child with an ASD reaches primary-school age, a parent has a choice of seeking a place in an ASD unit attached to a mainstream school or applying for a place in a mainstream school with no unit but with support in the form of a special-needs assistant. Five hundred and forty schools have autism units, but parents report they are not easy to get into, particularly in Dublin.

Yvonne, who is based in Dublin 6, has found a six-month placement for her child in a dedicated ASD preschool that is connected to a primary school. However, she has been told that her son will not have a place there next September when he reaches school age.

“I have no school for him in September,” says Yvonne. “His name is on four waiting lists for schools with ASD units, but I’m number 40 on one, 50 on another and no one will give me answer. I’m starting to learn the truth about this system. As one parent put it to me recently, places in ASD units are like gold dust.”

Explosion of need
The real problem, however, is at post

primary level, where as few as 30 units are dedicated to the education of students on the autistic spectrum, according to Kevin Whelan, CEO of Irish Autism Action. “We are facing an explosion of need at secondary level and we are not prepared for it,” he says.

“A key issue for children with autism is making the transition from primary to secondary school. Without supports we are setting them up for failure. We have made representations to the Department of Education and we have paid for 12 people to travel to the US for specialised training in transition planning for students with an ASD moving to postprimary school. We have had no financial commitment from the department on this. However, they have expressed an interest in talking to us, and that’s a start.”

The National Council for Special Education Implementation report of 2006 adopted 0.56 per cent as the prevalence rate for autism. At that time, there were no reliable studies on the prevalence of autism in Ireland. Given that last week’s figures from DCU represent a 100 per cent increase on the figure the department has used in its planning, it looks as if the policy people may need to go back to the drawing board on ASD.