OPINION: We are failing our citizens with autism

The majority of autistic children can't access specialist facilities

OPINION: We are failing our citizens with autism

Eight-year-old Kaylum Kenny who has autism and Venie Mullett attending a march against cutbacks in education in 2012 (RollingNews.ie - Mark Stedman)

April is Autism Awareness Month. This means that over the next few weeks you can expect to see plenty of politicians posing for photos, grinning cheerfully, surrounded by a gaggle of children, as they pledge to “do everything possible” to increase the resources needed to people living with the condition.

Then April will turn to May, and they will make new promises at new events organised to highlight other issues.

This may seem like a particularly cynical point of view but the reality for many people living on the spectrum reveals political promises to be little more than lip service.

Two stories on the Breakfast show from earlier in the week prove this to be true.

On Monday, we heard from Judith Clarke and Shane Dunphy. They live in Ballybrack in Co Dublin. Two years ago, they began looking for a local school with a dedicated autism unit in which to enroll their youngest son.

No such school existed. The nearest one to them told them that there was no point even putting his name on a waiting list, such was the demand for places. This experience opened their eyes to the chronic lack of services that exist for young people with autism and they launched a campaign to force the State to open a dedicated unit in every national school in the country.

Judith explained more…

Unfortunately the experience of Judith and Shane is not uncommon. In almost every county in Ireland, there is a chronic lack of capacity for children with autism in our education system.

Lack of school supports

The National Council for Special Education provide details of every school with an autism unit and comparing those figures to the overall number of school in the State is a sobering experience. Take Leitrim as an example. There are 38 national schools in the county. Only one has a unit attached. That unit has room for six children.

Now if you look at demographics there and compare that to the prevalence of autism in the population as a whole, the likelihood is that there are anywhere between 30 and 60 school aged children in Leitrim on the spectrum. Six are catered for.

So parents are left with difficult decisions. Some drive to neighbouring counties, some home school. Most have no other choice but to leave their child in a mainstream class and hope they don’t get swallowed up. All too often, that is a naive hope.

Even children who are lucky enough to have a place in a dedicated unit or special school are not spared the soft discrimination.

Deplorable conditions

On Tuesday on Breakfast, we visited the Saplings School in Graiguecullen, Co Carlow. The school was founded in 2007 and now has 19 pupils, all with autism.

The work that the teachers, SNA’s and therapists are doing with them is fantastic. The same however, can’t be said for the conditions.

The school is located in an old three bedroom bungalow with two portacabins attached. Almost 50 people every day are on a site that was designed for a family of five or six.

This means that every single week, the septic tank needs to be emptied. It’s not uncommon for school to be cancelled when the effluent in the tank backs up into the pipes and drains in the school itself.

These are the conditions in which we expect to educate some of the more vulnerable members of society. Their building is not fit for purpose.

The plumbing, drainage, electricity and water supplies can’t cope with the demand. There is no green space for the children to run around. Nowhere for them to exercise or breath fresh air. The corridors are cramped and space is so tight that teachers have found themselves at risk of injury when older kids lash out.

Of course, they have gone to the Department of Education with these problems but all they have been offered is assistance with renting a new site, not a new building. The priority of the Department is building new schools to cope with population growth. If Saplings need a new building, they have to pay for it themselves.

In other words, if these parents don’t want to send their children into a school where human waste comes back up through the drains, it’ll cost them.

Paying out of their own pockets

It’s worth noting that parents are already funding many of the services that the school provides.

Occupational therapists, speech & language therapists and physical therapists are all paid for through donations from parents. They have to do this because the level of support the State provides in those areas is so little it is as good as non-existent.

Two parents of children in the school shared some of their frustations with Breakfast. This is Paula Nolan, mother to Ivor, but first, Lean Roche, mother to Ryan… 

12 months ago we were drowning in a sea of 1916 commemorations but it is worth dredging back up a line from the Proclamation. The short lived Republic guaranteed to cherish “all of the children of the nation equally”.

101 years on, we are failing miserably in this regard.