I wanted to run home to Ireland when I was told my son was autistic. But we just couldn’t afford to

While the Celtic Tiger was buying up every scrap of wasteland space we played on as children, I followed a man to the United States. It was 1998.

Before I knew it I was a mum to a gorgeous red-headed boy. He didn’t sleep great, but everyone said he’d outgrow his “busy ways”. His diagnosis of autism put paid to that.

After Liam was diagnosed the only thing I wanted to do was run home to Ireland, home to family. What I soon discovered, though, was that the supports Liam would need were not readily available in Ireland. The waiting lists alone would make your head splinter. So we stayed in the US.

By the time Liam was six he was getting specialised instruction in an autism unit, as well as occupational and speech therapy. He had a social worker and a school psychiatrist. The more I looked to move home, the more obvious it became that we couldn’t afford it. I don’t just mean monetarily: we simply couldn’t afford the loss of autism services Liam now received. After my second son, Cian, was diagnosed with autism, it was a no-brainer.

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Liam is now 22, and working and living independently. Those early years of intensive intervention paved the way for Liam’s success. Here in Maryland, where I teach students with autism and intellectual disabilities, I hear stories from Ireland about the fights and struggles families with autistic children have with the system. I hear about waiting lists for assessments, waiting lists for therapies, and the high demand for autism units and special schools.

Ireland’s provisions barely scrape the surface of what our children need to become successful, whatever that success may look like. The Education for Persons with Special Educational Needs Act is now 18 years old and still riddled with loopholes. A prime example is that schools are not obliged to accommodate children if doing so would give rise to anything more than a “nominal cost”. That vagueness is deliberate. A child in a rural area may not have access to an autism unit within 75km or more, but the “nominal cost” factor negates the need for more units.

Here in the US we have a few laws that support and protect children with disabilities, not least the Individuals with Disabilities Education Act, which ensures that students with disabilities receive a free and appropriate education. While it is by no means perfect, it is a kernel of support for children with autism. It allows a child with an intellectual or developmental disability access to educational and therapeutic supports.

Despite the legal and educational disparities between the US and Ireland, I am amazed at the grassroots work being done on behalf of Irish children with autism. AsIAm, ASD Ireland and the Irish Society for Autism are the tip of the spear in terms of advocacy and action. With their guiding hands and the tireless resolve of families and individuals with autism, there is a lot to be proud of. The work must continue, so all our children have the right to a free and appropriate education.

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