Autistic children and their parents have been neglected by successive Irish governments, which should provide them with appropriate services.
I am not a parent of an autistic child, nor do I have relatives or friends (that I know of) who are autistic.
So I am writing from the comfort of knowing that my children have had an appropriate education; that they were equipped to progress — assuming no major obstacles along the way — to independent living in their community, hopefully with gainful employment; that they have friends and (eventually) will have no further need to rely on their ageing parents.
I take this scenario for granted, and though it may not seem like much to expect, it is a future that it is often not even possible for the parents of autistic children to dream of.
Worldwide, one in 59 children has an autism spectrum disorder. This is a substantial proportion of the population, to say nothing of their families. Why is there not a national Irish organisation whose sole purpose is the care and support of persons with ASDs and their families? It seems to me that parents, post-diagnosis, are expected to figure things out themselves, however difficult that may be.
This organisation should incorporate speech-and-language therapy, occupational therapy, access to medical support, physiotherapy, psychology, counselling, parent support, support groups for children and their families, advice on early/primary/secondary/ college education options, advice on employment and independent living, and the full range of supports needed by persons diagnosed in adulthood.
It should give families access to the best autism advice, including from autistic people, whose voices are so often unheard. I am certain I have left out other essential services required by families. It is just unacceptable that a centre of excellence for autism support has never been on any government agenda.
In the education sector (my own area of work), our government, in setting up ASD classes, may be patting itself on the back, all the while knowing that what they are doing is paying lip service to the provision of appropriate education.
Teachers of ASD classes are not required to have any training in autism, nor are SNAs. It is entirely up to the teacher, SNA, or school management to decide whether or not to participate in autism-specific training, and, even at that, the training chosen by one school may not be the same as that chosen by another, meaning that there is no consistency across schools.
Occupational therapy and speech-and-language therapy support are almost non-existent. Parents who may be delighted to have secured a place in an autism classroom are being shortchanged, as are their children. We, who work in these classes, are doing our best. But it is not good enough.
Our autistic pupils are fully entitled to better, to be educated in a way that suits their learning styles and abilities, to be supported in ways that give them the opportunities other children and parents take for granted.
It is immoral to deny autistic children the supports and services they need. It is immoral to force their families to fight for what they are constitutionally entitled to.
I realise it is hard for governments to balance the books, but, equally, I believe that people would forgo minuscule tax cuts, the extra 5c off a litre of diesel, the extra €2 in the fuel allowance, if they knew that their money would, at last, be spent on excellent public services, especially to improve the lot of those who need the support of a caring society to live a happy and fulfilling life.
It seems like a dream that we should be able to take for granted.