Our government's indifference to Autistic children

In the past year, myself and fellow Hot Press journalist Tara Brady have had our hearts ripped out.
We each have a three-year-old child – mine’s a boy called Caoimh, Tara’s daughter is Evie – who’s been diagnosed with the neurobiological disorder known as autism.
Discovering that there is something seriously wrong with your child is a brutal shock and causes profound grief. But the despair I feel is made infinitely worse because the Irish government refuses to provide our children with the potentially life-transforming therapy known as Applied Behaviour Analysis (ABA) – the most highly proven intervention for young children with autism.
Not only are the parents of autistic children expected to accept that our children are ‘disabled’ and may never be able to lead ‘normal lives’, we also have to kick, fight, beg, borrow and steal to get our children the 30 one-to-one hours per week of ABA therapy which they urgently need. (Because the brain is still ‘plastic’, ABA therapy is most effective in children up to the age of five.)
If autistic children aren’t helped, their behaviour can become so difficult – with head-banging and other forms of self-injury and destructiveness commonplace – that families can no longer cope, and the child ends up sedated to sent to an institution.
Yet with early ABA intervention, not only can children and their families be spared tragedy on this scale, but many children improve so much that they are able to join mainstream education by the age of six or seven.
Autism is a ‘spectrum disorder’ ranging from mild to severe. Its main characteristics are profound difficulties with language, communication and other forms of social interaction, and the quality of being ‘stuck in one’s own world’, whereby some children are almost completely oblivious to their environment and the people around them.
Because autism creates an internal mental focus, it prevents young children, to a greater or lesser degree, from learning from their natural environment in the way that ‘neurotypical’ children do. In his darkest days, before he received any ABA therapy, my son Caoimh was unable to make eye contact or recognize his name. He would spend much of his time in a zombie-like state that was similar to death even though his body was alive.
It’s easy to see how, unless specifically helped, children with autism quickly fall behind in terms of development, remaining babyish and failing to acquire the many skills that human beings need in order to function eventually as independent, socically connected adults.
This is why autism is known as a ‘developmental disorder’ as well as a ‘mental disability’.
Children with autism also frequently suffer from other learning disabilities, immune system problems and low muscle tone which can produce physical disability (some children, for example, may never develop the ability to feed themselves or go to the toilet independently).
Sometimes autism is obvious in a child from very early on. My son Caoimh has ‘regressive’ or ‘late onset’ autism.
This means that until 18 months he appeared to be developing normally: engaging with people, playing, interacting, using some words. But between 18 and 24 months, he lost many of his play skills, such as kicking a ball; became almost completely oblivious to his surroundings and other people, including his older brother; and stopped using the few words that he had altogether.
It’s been a nightmarish struggle trying to provide Caoimh with intensive ABA education, but it’s been so unbelievably worthwhile.
After a year of ABA, Caoimh is back on the developmental track. He’s calm and happy instead of upset and destructive; he’s engaged with and aware of the world outside his own mind; he’s fully toilet-trained and learning to communicate and talk.
When will the government see sense and start helping instead of hindering children with autism and their families?b

Caoimh goes to an ABA school called Achieve ABA, based in Donaghmede, Dublin, set up and funded by parents themselves through a registered charity. ‘Caoimh’s Gig’ – Saturday third March, upstairs at The Odeon on Harcourt St, Dublin two – is a benefit for Achieve ABA. Bands and DJs include Ropey Karaoke and Jack of Speed. For info on tickets, contact [email protected]. All proceeds go directly to providing crucial early ABA intervention to young children with autism.