Autistic children here should get the education given for free in other countries, argues Adrienne Murphyin the second of a two-part series.
Much of my time over the past year has been spent fighting like an animal for my son who has autism. Getting a severe mental disability diagnosed in your child is devastating. But an even greater source of despair to parents is that our children are being denied access to the most scientifically proven therapy for autism. That therapy is an intensive educational intervention known as Applied Behavioural Analysis, or ABA.
If left untreated, most children with autism not only fail to learn and develop, but they also get steadily worse in terms of behaviours such as destructiveness, tantrum-throwing and self-injury. Can there be anything more frustrating than having to stand by while your child disintegrates before your very eyes, knowing that he or she could actually be helped with the right treatment?
Both the diagnostic and treatment services for autism in Ireland are in chaos. Children's chances for a relatively normal life are being wasted. Their parents are experiencing rage and despair. Here is my own experience of the torment and a description of how, despite an incredibly adversarial system, we have managed to provide our three-year-old son Caoimh with the ABA treatment under which he is currently blossoming.
We were lucky that Caoimh was assessed for autism relatively quickly through the public system, receiving the final diagnosis aged two-and-a-half. Many parents can spend years trying to get a final diagnosis. The delay stems from both a failure to recognise autism by professionals and the massive waiting lists for assessment. The result is that many children are not being diagnosed until they're four or five, or even older. Correct early ABA treatment can make the difference between a person requiring life-long residential care or being able to lead what most of us take for granted: a self-managing and independent life.
While ABA has been used to treat children with autism with varying degrees of success for half a century in the US and other countries, in Ireland ABA was first taken up less than 10 years ago.
ABA was brought into the country by parents and a handful of psychologists, and not via the health or educational authorities, who in my experience - and that of other parents and ABA professionals - have a deeply misinformed view about ABA which flies in the face of international scientific evidence. In the past year I've heard rampant distortion of ABA, even from well-meaning professionals, who unthinkingly repeat what are very harmful myths, such as ABA is like dog-training, or that it turns children into robots - patent nonsense to any parent whose child is receiving ABA treatment from fully-trained experts.
In my view, all this ignorance and misinformation facilitates the Government in getting away with doing virtually nothing about the autism crisis currently unfolding, whereby the massive increase in the incidence of autism is leading to one in 166 children now being diagnosed. If you don't already know a child with autism, you soon will.
Research shows that to fare best under ABA, children need 30 hours a week of one-to-one ABA education for about three years, starting at the age of two or three.
While the large majority of people with autism of any age can be helped - often significantly - through ABA, there is a "window-period" up to the age of five whereby huge amounts can be done to counteract the effects of the neurobiological disorder or abnormal brain structure which many scientists are now saying is at the root of autism. This is because before the age of five, a young child's brain has maximum "neuroplasticity" and most easily re-wires itself through huge amounts of ABA teaching.
The clock was ticking for our two-year-old son. We had to act fast. Education is the key to helping children with autism. Yet the only thing that the Department of Education could offer in the absence of the ABA services it should be providing was a "home tuition grant", which pays for up to 20 hours per week of tutoring.
Using the knowledge we'd acquired through study, we were able to recruit and employ - with great difficulty - several ABA tutors to work in our home with Caoimh. Yet when I went looking for the money that the Government promises to pay for this tuition, I was told that Caoimh did not qualify for the full 20 hours because he was not yet three. It took five months of battling with the Department of Education to get the money that we urgently needed. With one of us having to give up work, we had to borrow at this time roughly €12,000 to pay for Caoimh's tutoring.
Our sittingroom became a one-to-one classroom for 30 hours a week. Unless I could get Caoimh into an appropriate school, he would be stuck at home indefinitely, getting no chance to learn to mix with his peers, which is a crucial element provided by ABA, since extreme difficulty with socialisation is one of the major components of autism.
I swiftly applied to the 12 parent-founded, State-funded ABA schools scattered around the country, but was horrified to learn that Caoimh was so far down on the waiting lists that his precious window of opportunity would be well and truly closed by the time he ever got enrolled.We were left with no choice but to put the word out on the parental grapevine that we were seeking others in a similarly desperate plight to join us in setting up an ABA school.
Thankfully, I was contacted by a group of parents from the northside of Dublin whose ABA school was about to open. There were five young children enrolled so far; Caoimh was to be the sixth. This school is called Achieve ABA and is based in St Colmcille's School in Donaghmede, Dublin 13. The parents had managed to contract Dr Jennifer O'Connor, one of Ireland's few ABA consultants, to oversee the school and employ and train six tutors - one for each of the children - along proven and effective ABA lines. To fund the school, the parents of each child had to find €10,000 and then pool their monthly home tuition grants. We applied to the Department of Education for funding and began, through our official charity, our own fundraising in earnest, to which people have been remarkably generous.
The relief I feel now that Caoimh is in a top-quality ABA school is immense. My heart goes out to the thousands of parents in Ireland who suffer daily the sadness and frustration of knowing that their child is not getting what they need.
ABA does not claim to be a cure for autism, as children react to it with varying degrees of success. Caoimh, thank God, is responding well. I now have a different child to the little boy who a year ago was so lost and confused.
Before ABA, he would spend hours in his own world, learning nothing, non-compliant, often angry, upset, frightened, destructive and ready to lash out at people.
Now, aged three and five months, he's calm, much more aware, communicating well non-verbally and making excellent eye-contact, learning play skills, engaging with his brother, smiling and laughing, becoming toilet-trained, losing many of his challenging behaviours, and - praise be - on the cusp of learning to talk, a huge relief considering the fact that 30 per cent of children with autism, despite receiving ABA, remain non-verbal for the rest of their lives.
Going by research results for the effectiveness of intense early ABA intervention, we can expect several of the boys in Achieve ABA to begin to overcome their autism through learning how to learn, to the extent that they will be able to join mainstream schooling by the age of six or seven. While the others may require ongoing ABA education, they will have learnt valuable skills such as communication and understanding (through visual aids and sign language if they can't speak), play, toileting and self-care. Many of the difficult behaviours that can become so entrenched as the child gets older will never get the chance to establish themselves.
The school is a success story, yet it's crazy that parents have to go to these lengths to get what in enlightened countries is provided to children with autism for free soon after diagnosis. Meanwhile, hundreds and soon thousands of families will continue to suffer because children with autism are being denied their right of access to an appropriate education.
As is the experience of other parents trying to get Government sanction for self-created ABA schools - either through the lobby group known as Irish Autism Action (IAA) or independently - our group has been consistently fobbed off by the current Minister for Education.
During Mary Hanafin's stint as Minister, no new ABA school application has been approved by her department, while the waiting lists at the existing schools continue to grow. Not only is the Government failing to provide services to help children with autism, it is spending millions from the State's coffers in court, fighting parents who have turned to the legal system in their struggle to get what their children need.
The Department of Education seems to think it's a good idea to mainstream children with autism into national school without giving them ABA intervention. Unless specifically taught, most children with autism don't know that they're even supposed to be learning from the environment by communicating with others, following instructions, imitating or even making eye contact.
The Government has said it no longer wants to use the ABA model of education for our children, and is instead pushing what it calls the "eclectic" model, despite the fact that there is no scientific evidence to show that this model works. Confusingly, the "eclectic" model is said to contain elements of ABA - a technical absurdity to anyone who actually knows how rigorously scientific ABA must be in its application. Teaching a child "a bit of ABA" is like giving someone falling through the sky a small portion of a parachute with which to try to land.
Meanwhile, those of us trying to get vital early intervention services for our loved ones with autism find State departments throw obstacles in our way of accessing even the paltry services that are supposed to be available. People's lives are being ruined.
Series concludes
Irish Autism Action (IAA): www.autismireland.ie, 044-9331609. Saplings School for Children with Autism: 045-878760. Vital reading:Behavioural Intervention For Young Children With Autism , ed Catherine Maurice et al;Applied Behaviour Analysis and Autism: Building A Future Together , ed Mickey Keenan et al;How To Help Your Autistic Spectrum Child by Jackie Brealy and Beverly Davies
