A new generation of invisible children

Seán O’Sullivan and his wife Tish Durcan left Ireland in July 2015 bound for their native USA.

A new generation of invisible children

Seán O’Sullivan and his wife Tish Durcan left Ireland in July 2015 bound for their native USA.

They had, for the previous nine years, made their home in Kinsale, Co Cork.

Mr O’Sullivan was a fixture on the RTÉ programme Dragon’s Den.

They left these shores because they could get better treatment for their son who is on the autism spectrum. The couple are very comfortably wealthy.

They could afford the best care in the world for their son. But they couldn’t get even basic care in this country.

Seán O’Sullivan told Marian Finucane in April 2016 that his son has autism and they were trying for several years in Ireland to get the care he required.

“We decided that he really needed to go to a place that was truly expert.”

Even getting a diagnosis in Ireland was a major issue.

In the Irish system that can take more than a year.

Twelve months for a child with autism could be the difference between flailing around in a dark cave of the mind or walking out into some form of light.

Mr O’Sullivan and his family had their priorities spot on.

Ireland is a lovely place and all that, but not if you have an urgent need to acquire treatment or a proper education for a child with autism.

Others who are not as fortunate as Mr O’Sullivan’s family have also moved home out of desperation.

I know of at least two families who left Dublin and moved to the midlands and the north east respectively because statistically their sons had a better chance of being educated in a proper setting.

These families forewent the economic necessity of living in a major conurbation in order to access that to which every citizen is nominally entitled.

Financially, they are most likely worse off. In terms of any personal fulfilment from employment, they are likely to be worse off.

But at least their child has a better — perhaps even marginally better — chance of making the most of what fate has thrust on them.

This week the autism organisation As I Am published research into the difficulties of acquiring a school place for children with autism.

Appropriately, the report is entitled Invisible Children. It details how hundreds of children with autism are being excluded from school and don’t even show up on official statistics.

The struggle of families to get basic treatment and education for children on the autistic spectrum is one of the genuine scandals in modern Ireland.

The Invisible Children report documents how doors are continually closed on the faces of these parents.

There are a number of testimonies in the report, but one of the most illustrative quotes comes from a mother who related that prior to the birth of her son 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.”

Another parent states that her son has been rejected by 37 schools. This is not unusual.

Earlier this year, the Irish Examiner published the story of Dylan Diamond, whose father Ian unsuccessfully applied to 26 different schools for a place for his son.

Ian and Josie Diamond, from Walkinstown, in Dublin, with their son, Dylan, 5, who has autism and is receiving no formal education. Picture: Moya Nolan
Ian and Josie Diamond, from Walkinstown, in Dublin, with their son, Dylan, 5, who has autism and is receiving no formal education. Picture: Moya Nolan

The piece on their story began: “Ian Diamond gets up to fight every morning.”

And that’s daily life for parents attempting to access services in a Republic.

They learn to fight, to hassle, to plead, cajole, repeat, demand, all the way to exhaustion.

A visitor to this country, observing how liberal and inclusive we purport to be, would have a different impression.

On the face of it, the legal protections for children with disabilities are first class.

For instance, the 2005 Disability Act is a fine piece of law. It has provisions that a child presenting with possible special needs must be assessed within 90 days.

A report on the assessment must be furnished within another 90 days.

These time provisions are unusual in legislation, but signal the importance of early diagnosis for conditions like autism.

So much for the law. The reality is far removed. Routinely, assessments take much longer and dozens of court actions have been initiated as a result.

Actually getting a diagnosis is a major struggle for parents.

Another inclusive law, the Education Act, came into force this year.

Section 8 of the act confers powers on the minister of the day to direct a school to make provision for a special class for children with a disability.

Typically, such a class would be an autism spectrum disorder class which might have between four and six pupils.

One of the reasons for this new law is there has been a reluctance by some in education — including patron bodies and boards of management — to provide a dedicated class for special education.

As a result there are large areas in the State’s cities in particular where the demand for special education is not being met.

So far, so inclusive. However, section 8 of the act has 20 subsections, nearly all of which represent a hoop through which the minister must jump before he invokes the new power.

In reality, these subsections combine to neutralise the intention of the law in the first place.

But when any government is challenged on the failure to provide education for children with disabilities, it can point to the law which shows its commitment.

The failure of the State to live up to its responsibilities to all citizens largely comes down to political power or the lack thereof.

There is a long tradition in this country of ignoring the plight of those without a voice.

When women were invisible behind closed doors of domestic dwellings in a Church-dominated state, their rights were abused.

When children were behind the high walls of industrial schools, their rights were abused, often in the most grievous manner.

When carers were too busy with loved ones to make a political case for what they were saving the Sate, their rights to commensurate pay and conditions were abused.

Now we have another invisible constituency whose rights are being abused simply because they are not represented by a co-ordinated, powerful political force.

One of the main reasons for this is that parents are completely preoccupied with their most immediate need for their child — acquiring some form of suitable education.

The rights of these children, their vulnerabilities, are relegated in the list of political priorities simply because they present no threat to government, nor offer anything that could be utilised at the ballot box.

That is a shocking indictment on an alleged enlightened Republic.

One day it may well be acknowledged, but that will be far too late for today’s generation of invisible children.

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