‘My child was expelled at six. We’re in 2019... Our children are invisible’

Hundreds of children with autism are being failed by the State education system

April 19th, 2016: 'Just understand that they're different' - viewed over 250,000 times on Facebook, a 13-year-old's video, recorded by his uncle, on what it is like to live with autism has gone viral. Video: James Kavanagh

 

Rian is almost seven. He loves the Avengers, playing with Lego, climbing and messy play.

“He’s the joy of our family,” says his mother, Suzanne Voakes. “He’s the funniest, quirkiest child. He’s a typical boy, boisterous, loves hiding and climbing. He loves learning. He’s like a shining diamond.”

Last September, two years after starting at his local primary school, he was expelled. He was six.

Suzanne says the school did all it could for him but that teaching staff simply weren’t equipped to meet his needs.

Jamie has autism. He is non-verbal and was initially diagnosed with a mild intellectual disability. He can also get highly anxious and very hyperactive.

When he was diagnosed, authorities advised Suzanne that her son needed autism-specific education.

While there were no places in autism-specific schools, she was delighted when he was offered a place in an autism class at her local school.

Rian was placed in a class of six children with autism, all non-verbal and with complex problems.

“There was a teacher and two special-needs assistants (SNAs) ... but it was clear early on that it wasn’t going to work. It was more of a baby-sitting service. The school tried its best, but they were struggling and ill-equipped. It wasn’t their fault.”

Within six months, she says, he lost his speech. His toileting skills disappeared. Soon his anxiety levels were going through the roof, says Voakes.

“He was depressed. He’d lost all skills, he wasn’t sleeping and was getting out of control.”

When the family had him reassessed by health authorities, his diagnosis had worsened: he now had a moderate instead of mild learning disability.

She ended up giving up her job an an intellectual disability nurse.

Last September it all came to a head.

“We realised the school couldn’t meet his needs. He was being excluded on the basis that they couldn’t meet his needs or educate him.

“He was expelled. It was something I was in agreement with. There was no other option.”

Excluded from system

Hundreds of children like Rian find themselves excluded from the education system.

They are children who have been diagnosed as requiring an appropriate education but cannot find a school place.

Many others have found that, despite securing a place, the system hasn’t been able to meet their needs.

In some cases parents have withdrawn their children in the absence of appropriate supports. Some children are on partial school days or have been advised to seek home tuition instead. Others have been suspended or expelled from school.

These children are invisible, for the most part, because they do not show up in official statistics as being out of the education system.

The findings are contained in a survey by the autism charity AsIAm, which polled more than 300 families who are either waiting for school places or have been excluded from schools.

Of those excluded or withdrawn from education, more than half say their child has not been attending school from anything from a few months to three years or more.

Only a minority of these families – about 15 per cent – are in receipt of home tuition.

Some 90 per cent say they have had no contact from Tusla, the Child and Family Agency, which is responsible for ensuring children attend school.

The main reasons families have given for an extended absence from school include anxiety, a lack of knowledge or understanding of autism and inadequate supports available in schools.

It is a cause of huge stress to families where, in many cases, parents say they have been forced to give up their jobs.

Nicole Duggan’s son Riley (5) should be due to start school in September but he has been refused from 37 schools so far. She has given up her work as a beauty therapist to help her son.

Alison Field, whose son James (5) has been turned down by 11 schools, says everything is left at the door of parents. The system, she says, leaves you on your own.

Adam Harris, who founded AsIAm based on his own experiences growing up as a young autistic person in Ireland, says the scale of the problem amounts to a “national scandal”.

“The worst aspect of this is that it is happening under our noses and the State is pretending that it isn’t,” he says. “These are not new issues. But we’ve chosen to ignore them.”

Constitutional right

In theory, all children have a constitutional right to a primary education.

The Education for Persons with Special Educational Needs Act, or Epsen Act, was a ground-breaking piece of legislation that followed legal battles and campaigns by mothers such as Kathy Sinnott and Marie O’Donoghue.

It provided that children with special educational needs would be educated in an inclusive environment.

While the Department of Education policy is to ensure children with special needs are placed in mainstream classes with supports, there are other options for children with more severe levels of disability.

They include autism classes in mainstream schools – where there are usually six pupils to one teacher – or special schools.

There is little doubt that the State has made progress over the past decade and a half by investing record sums in special education.

Since 2011 the number of special classes has jumped from 548 to 1,459 across the country. One-fifth of the State’s entire education budget now goes on special education.

Harris accepts that supports have increased, but says they are simply not enough to meet demand.

“We wouldn’t accept it if there weren’t enough school places for schoolchildren in mainstream schools, yet it seems it is acceptable for children with autism to go without,” he says.

Official denial

A spokesman for the Department of Education said the National Council for Special Education (NCSE) was responsible for planning and advising on education for children with special needs.

“The NCSE has informed the department that, in general, they are satisfied that there are sufficient ASD [autism spectrum disorder] special class placements to meet existing demand nationally.”

However, it added that the council was aware of demand for additional placements in some areas, such as parts of Dublin.

It said the council was actively engaging with schools and parents to ensure “each child has a school placement appropriate to their needs for the 2019-2020 school year”.

However, Harris says it is clear that hundreds of children do not have such places right across the State, but especially in Dublin and Cork.

Home tuition, he says, is no substitute for a child who should have a right to attend school.

For those who do access their local school, he says far more needs to be done to ensure children have the right supports to help them flourish.

There is no obligation, for example, to ensure that a teacher in an autism class has a specific qualification in special education, and the only mandatory qualification for a special-needs assistant is the Junior Cert.

“People are often mainstreamed into school settings, but our measure of a person’s education in terms of assessment or curriculum is often the same as before inclusive education took place … so they are square pegs being put into round holes.”

Lost potential

For Suzanne Voakes, the most upsetting aspect of her son’s experience in the education system is his lost potential.

She says Rian had made great strides through a qualified tutor who worked with him for about nine months before he went to primary school.

“He even starting to make sounds like ‘mama’ or ‘dada’ – it was the first time we heard him say words.”

After two years at primary school – where he rarely completed a full day, she says – she says his tutor was shocked: his words had disappeared and he was no longer toiled-trained.

“It was devastating,” she says.

With no school place available, she says had to find a tutor herself.

With no school place available across the capital, she ended up sourcing a place in a private service for half a day recently, paid for with the home tuition grant.

There is no guarantee the service – which operates out of a single rented room – will last and there is also no entitlement to school transport.

“If it closes tomorrow, there’s nowhere for him. It’s just half a day, while other children his age are in school for longer.

“I have to supply rejection letters from schools each year in order to reapply for the home tuition grant. No other mother should have to do this.

“Sometime I think of the way women or gay people were treated in the past ... I feel we’ll look back in 30 or 40 years and we’ll say, ‘How did we allow this to happen?’ We’re in 2019. Our children are invisible.”


***

James’s story: ‘Once you get a diagnosis, it’s like going to war’

It is a legal requirement for parents to start their children in formal education by the age of six.

Yet Alison Field says she has been refused a place in 11 schools across the north Dublin area for her son James, who turns six in September and has autism.

“The law of the land only seems to apply to some children. There’s another for children with autism or learning disabilities,” she says.

James can’t talk. Alison says he’s a real character.

“He giggles, likes to mess with you. He’s very lovable and loves hugging you ... He can get stressed, though. If we’re [his parents] not around, he can end up crying or vomiting.”

When he was diagnosed, health authorities said James required a place in an autism-specific school or an autism class attached to a mainstream school.

After being refused entry to schools right across the north Dublin area, Alison was advised by her local special education needs organiser that funding would be made available for an autism class in a local mainstream school.

But when she approached the school, she says she was flatly rejected.

“There was no concern, no compassion. I was told they couldn’t do it, that teachers were working out of cupboards or corridors ... So you feel like no one cares. You’re fighting every step of the way.”

Alison has been told that home tuition will be available if he cannot get a school place.

“There’s a push to just get him home-schooled. While the Department [of  Education] will fund it, you have to find a tutor, you have to source the help ... Even if he doesn’t get that, it’s not right. He needs to be in the community, to be mixing, not isolated on his own at home.”

Quiet person

Alison, a mother of two from Raheny, says that prior to having James, she was a quiet person.

“I wouldn’t have said boo to anyone ... but now I’m a fighter. Once you get a diagnosis, it’s like going to war.”

There are delays getting assessments, she says, and waiting lists to access early intervention services.

This is despite expert advice that states children benefit most with the earliest possible therapeutic input.

She’s not alone, Alison says. In the pre-school service James attends, there are four other mothers of children with autism in the same boat: none has a school place for next September.

Another mother who is an acquaintance of hers has had her school-age son at home for the past year due to a lack of autism-specific places.

“It seems like a classic case of a system that lies between a number of different departments ... and no one seems responsible for the children who fall through the cracks.”

***

Riley’s story: ‘He has been rejected by 37 schools’

When Riley was three months old, his mother, Nicole Duggan, began applying for school places.

He’s now 5½. She is still searching for a school that is willing to take him.

“Most parents have the excitement of their children starting primary school in September; attending open days; planning where to pick them up,” says Nicole, who lives in Glanmire, Co Cork. “But due to a diagnosis, this country is letting my child and other autistic children down.”

Riley was diagnosed with autism at two years and nine months. He is non-verbal, has sensory issues and is still not toilet-trained.

A multi-disciplinary HSE team says he needs a placement in an autism class – sometimes called an ASD unit – which is typically attached to a mainstream school.

They offer more specialised intervention in a class of six students with a teacher, supported by special-needs assistants.

Nicole, a single mother, has spent almost two years calling schools, special education support services and TDs in the hope of getting a positive answer.

“Although his name has been put down for units all over Cork, no places are available. I have been in contact with 37 units in our county, who have ASD units. Out of those 37 units, there is not one place available for next year,” she says.

“This is the case for so many children all over the country. We spend our days ringing schools.”

Home tuition

The Department of Education has offered to pay for 20 hours of home tuition a week if she cannot find a school place.

“This country thinks it is acceptable to remove our kids from a school setting and have them schooled at home, due to ‘lack of resources’,” she says.

“Our children, who thrive on routine, are forced to be moved from pillar to post and are not a priority to our Government.

“The Government thinks it is acceptable to deprive our children of the social aspect of school, something they so very much need. They think it is acceptable to deprive our children of being in a school setting, making friends and finding their own bit of independence, by having them home-schooled. This is not acceptable.”

She says it would not be acceptable if neuro-typical children were told they did not have a school place. She says Riley has huge potential.

“He understands everything you say. He’s the funniest person I know. He’s obsessed with Supervalu … He loves music and singing, though he can’t talk … He’s an absolute whizz on computers.

“So, why is my child any different? Autism makes them different, not less. My child, and all other autistic children, have a right to an education. They have a right to go to school. They have a right to be included. Something needs to change.”

© 2019 irishtimes.com