‘All we are told is no, no, no’: Parents of children with autism reveal uphill battles to find schools

At both primary and secondary level, school places for special needs children are at a premium and parents are under huge pressure with the lack of supports, writes Noel Baker

‘All we are told is no, no, no’: Parents of children with autism reveal uphill battles to find schools

At both primary and secondary level, school places for special needs children are at a premium and parents are under huge pressure with the lack of supports, writes Noel Baker

There is a truly terrible book to be written about all the misguided, ill-judged and frankly terrible things said to parents who have children on the autism spectrum, except no one would want to read it — especially not Louise Griffin.

“I think the worst piece of advice we were ever given was that we should go and have a good cry and mourn the loss of our child,” she says, sitting alongside her husband, Gearóid, in their sitting room in the Cork suburb of Ballincollig. She issues a few quiet tears. “That really gets me. I remember that stupid comment, saying ‘I am not crying because he has it, I’m crying because we have to fight everybody now, just to make his life a little bit easier’.”

Some words are like dreadnoughts, stealing in and obliterating everything. The worst, arguably, is ‘no’. No, we can’t offer your child early intervention right now; no, we will not have sufficient resources to provide adequate occupational therapy at this moment; no early diagnosis — no, no, no.

More recently, the Griffins have heard it quite a lot from schools — no, we can’t take your son, Finbarr, next year. No, we don’t have the spaces available.

“Finbarr has never been educated in his local community,” Louise says.

We have always had to commute.

Their assistance dog, Flos, floats around the house and Finbarr, 13, is charm itself in posing for photographs — no mean feat given his Confirmation was the previous day, when plenty of lenses were trained on him.

“Can we please stop now?” he politely asks the photographer.

He has attended St Columba’s ASD centre in Douglas since junior infants and has progressed mightily from the time his parents remember him, aged five, running off during a trip to Dublin Zoo. He had no sense of the danger that was around him, no way of articulating that he wanted to go the toilet.

“I literally ran the length of Dublin Zoo after him,” Gearóid recalls.

Now it is the transition to secondary school that occupies their thoughts. The family has a bumper file, one that has added to recently by all the rejection letters from schools.

“Flat-out refusals from 10, 11 schools,” Gearóid says. In some of the others he was on lengthy waiting lists and the options were dwindling.

It’s the same story in Dublin, where Catherine Andrews, mother of Alex, and Louise Lawlor, mother of Aidan, are trying to ensure their children get a suitable place in primary school.

They are at different stages of a grinding and uncertain process: Alex, who is three and the middle of three children, won’t be starting primary school until September 2020, but Catherine is already concerned. Louise says Aidan, who is six, needs something this coming September.

Louise Lawlor and Barry Ennis, with their son Aidan (six). Picture: Dave Meehan
Louise Lawlor and Barry Ennis, with their son Aidan (six). Picture: Dave Meehan

“I’m running out of time before he gets a school,” Catherine, from Clonsilla in Dublin 15, says.

In January I am really going to be fighting for places.

Louise and her partner, Barry, live in Cherry Orchard. At our meeting, where they join Catherine, “King Aidan” is cooing at his mother, occasionally asking her for a “kiss kiss”, all love and affection.

“You ask people,” Louise says of the early fears that your child might be on the spectrum. “You want people to say no. Then it comes to the point where you say ‘you know, he is’. Put on the big girl pants and deal with it.”

“The fact that Aidan is six means he should be a priority for a school,” she says. “They don’t realise how much pressure and stress parents are under.”

She recalls the time she opened a letter from one school, informing them they would not take Aidan. She burst into tears and had to be comforted in her kitchen by her daughter. She has applied to 11 schools. “And I am not done.”

“You get your hopes up, you pray, you hope.” And then a ‘no’.

Back in Ballincollig, Louise says of her son: “He is well aware that he has no school. And he’ll ask — ‘I have no school. Why have I no school? Does nobody want me? I’m not that bad, Mam. I’ll study, I’ll try my best at my reading, I’ll study my spellings, will they want me then if I can spell proper? I’ll try my writing but I find it hard because I see things backwards.’ And it’s absolutely heartbreaking.”

Supply and demand

The Griffins, as well as Catherine and Louise are far from alone when it comes to the scramble to ensure the right educational setting for their children.

The pressure is building and the question is whether the state response, and those of schools around the country, is at all adequate.

Last year, 432 Section 29 appeals were lodged, including 355 in relation to a failure by a school to enrol a child — well above the figures for the previous two years.

Meanwhile, the number of children awaiting assessment for registration for home education almost doubled in a year, from 320 in Feb 2018 to 620 last February. Tusla said there has been an increase in applications for home schooling for children with specialised and specific needs.

However, the Department of Education points out that since 2011, the number of ASD special classes has increased by over 260% from 330 in 2011 to 1,196 now.

Some 124 special schools provide for children with autism and very complex special needs.

The number of special education teachers has increased by 37% from 9,740 in 2011, to over 13,400, special needs assistants by 42%, from 10,575 in 2011 to 15,000, as well as 83 SENOs. A spokesman said funding for special education provision in 2018 amounted to some €1.75bn, up 43% since 2011, and that 160 new special classes opened for the 2018/19 school year.

The National Council for Special Education (NCSE), through its network of local Special Educational Needs Organisers (SENOs), alongside the relevant education partners, is responsible for identifying the need for and sanctioning the resourcing of special classes and special school placements.

According to the department:

The growth in provision in special schools with placements increasing from 6,848 in 2011 to 7,872 this year is a strong indicator of the willingness of schools to voluntarily meet the identified needs of children in their communities.

But it doesn’t seem like this is enough. Graham Manning certainly thinks so. An avuncular, engaging man, he is the coordinator of three ASD special classes in a Cork secondary school and has become a crusader in trying to secure parity of resourcing between primary and secondary level special education funding.

He won’t discuss his own school but has a comprehensive overview of the issue and speaks with authority. He says schools in Dublin may have a point if they say they do not have the space but adds: “Any school in Cork that says that is lying through their teeth.”

He says it is “insane” the lengths to which some families have to go to just to scope out what might be available for their child. Often it is a pencil-and-compass exercise, looking up all the schools within a 50km radius that offer special classes or where one might be established.

New powers were granted to the Minister for Education last December which means he can order a school to facilitate a special class if there is a proven need. That power has yet to be invoked and according to the Department: “It is the minister’s view is that it should only be used as a measure of last resort.”

Graham wonders about the political will to utilise those new powers. He queries the disparity in resourcing of special classes at secondary level compared with primary. He believes investing fairly across the board will prove cost neutral to the exchequer, even leaving aside the moral argument.

As he puts it:

You are putting all this money into early intervention in primary and then you are letting it all fall off a cliff.

A diagnosis of autism will not change and Graham believes there are a number of schools in the Cork area that should have a special class, including cases where people cite the existence of other schools that are offering those classes as a reason not to.

But that does not take into account the growing demand. He believes that in some cases some schools are simply afraid that allowing special classes would impact negatively on overall grades.

It all leads to thoughts, aired by Catherine and Louise in Dublin, that some schools are either nit-picking or offering the cold shoulder.

“The schools don’t want to deal with these children,” Catherine argues. “Every school is making up their own rules, to be honest.”

Louise Lawlor, Catherine Andrews and the Griffins don’t want a plan B of mainstream, where their children might suffer without the right supports, and they don’t want home liaison. They want their children to mix with others.

Catherine Andrews with a photo of her son Alex Andrews during a protest by Enough is Enough Every Voice Counts Campaign at Leinster House, Dublin. Picture: Gareth Chaney Collins
Catherine Andrews with a photo of her son Alex Andrews during a protest by Enough is Enough Every Voice Counts Campaign at Leinster House, Dublin. Picture: Gareth Chaney Collins

It means there is a frustration with schools that decide against even offering the option of ASD supports.

According to Louise Griffin: “The schools that don’t take any child, or don’t even have an ASD unit are doing themselves a disservice because for society to grow and develop and we do have to, for acceptance, we cannot have discrimination in this day and age... they are not allowing their students to get used to different types. The diversity isn’t there.”

What about schools who wanted to set up an ASD class but weren’t allowed do so? A spokesperson for Educate Together confirmed that in the case of the Educate Together Secondary School, now in Griffith College on Wellington Road in Cork but previously in the suburb of Mahon, it had applied to have a special class but the request was turned down on the basis that the school was and still is in a temporary setting.

Management did not quibble with the decision, on the basis that, at the time, the Mahon setting may not have been suitable for students or staff.

But what about the case of Bandon Grammar School? Its headmaster, Ian Coombes, said it had gone all the way into mid-July in 2017 with plans — signed off by the NCSE — for a special class, only for it to be pulled on the basis that it was a fee-paying school.

The proposal to waive the fees for those attending was not entertained.

“It is the policy of the Department of Education and Skills that the National Council for Special Education does not establish special classes in fee-charging schools,” the Department said.

The Department is aware of only one instance in 2017 where the NCSE withdrew sanction for the establishment of a special class. In this instance, the NCSE sanctioned a special class in a fee-charging school in error.

"The NCSE realised the error and withdrew sanction. The NCSE ensured that the other schools in the area provided the required special class placements.”

Policy advice

The NCSE is currently undertaking Policy Advice on Education Provision in special classes and special schools to examine whether placement in specialist settings brings about improved educational outcomes and experiences, relative to their ability, for students with special educational needs.

This advice is to be completed and a report submitted to the minister no later than June 2020. But what about what happens in the meantime?

Catherine says she knows one person in Dublin 15 who was offered a place in Louth.

“You’ve got other kids who have friends in the area and are settled in school, why should you have to uproot them? They already sacrifice enough, like. It’s just heartbreaking — they are forgotten about. Like my eldest is just, he keeps asking for stuff, I can’t with Alex, and even the baby should be getting some attention but, I’m sorry... “ She is crying now. “It’s just so hard.”

“I don’t know where I can take it. I’ve already been on to my local SENO and they’re just saying the usual.”

Louise Lawlor says she might chain herself to one of the schools if she doesn’t get a place for Aidan.

Catherine says: “Special schools are needed but for me, there is a school around the corner from me and my hope is that Alex can walk home. Simple, that people take for granted, walk home with his brother but I am not given that choice, choice is being taken away from parents.

It comes down to money from the Government’s point of view, they say there’s not enough and that’s a lie.

Louise chimes in, wonderfully blunt — “Give it to our fucking kids.

“It makes me feel like I am a bad mother,” she says, breaking down a little. “It’s not one word of a lie. I say to him [Barry], not fishing for compliments, ‘Am I doing enough?’. And I mean that sincerely.”

Latest situation

Last week, Catherine provided an update: “Alex is not due to start school until next September [2020] but there are no places. I’ve gotten one letter from a school stating this, the rest of the schools he’s down for there’s over 40 kids on waiting list also.”

She has other pending issues, such as delays in Assessment of Need for Alex and the associated service statement.

“I’m not gonna hold my breath for it either,” she says, still battling away.

Bandon Grammar School in Co Cork has had its application to open an ASD class turned down once again. Headmaster Ian Coombes confirmed that a letter arrived this week, one which again referenced the fee-paying nature of the school and which also asserted that there was sufficient ASD provision in the wider area. It’s safe to say not everyone agrees, but the tenor of the letter has left the door slightly ajar.

In Ballincollig, there was better news. Numerous Section 29 appeals were drafted and ready to go when the Griffins received a call from a school in Macroom.

According to Gearóid: “Originally this school did not have a junior cycle this coming year but there was an additional request by another student and so as a result the school was able to open a junior cycle class.

So Finbarr has since visited the school and was very happy with it. Realistically the only thing we have to sort out at this stage is transport but that is under review at the present. So the major hurdle is jumped.

It would be nice to think they won’t encounter another one for a while.

As for Louise Lawlor and family, there are still issues over lost paperwork, the undesirable prospect of mainstream school or home tuition. Louise says regarding a place for Aidan it’s a case of no update, nothing available.

No — and there’s that word again.

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