Both our beautiful boys have autism
How we have coped since discovering that ...
Published 06/02/2008 | 00:00
County Wicklow parents Cian and Yvonne O'Cuanachain had battled for 68 days in the High Court for the State to provide Applied Behavioural Analysis (ABA) education for their son, Sean, who is autistic. Last week they lost their €2m fight. The courts ruled they had produced insufficient evidence to prove their case, and said they must meet their legal costs.
Their's was regarded as a test case, so the verdict spells bad news for thousands of other parents round the country, including Ken and Janice Berry from west Dublin. The Berrys, in common with many parents, believe that ABA is essential for the educational and social development of many autistic children. The ruling also places a new question mark over over the future of their son, Aaron.
Irish Autism Action, which supports parents with autistic children, has said that the costs ruling would deter parents from taking legal action to compel the State to meet their children's needs.
Ken Berry has two tattoos on the back of his neck. The first reads 'Cathal Sep 06', the second 'Aaron Oct 07'. These are not the birth dates of his two sons, they are the dates each was diagnosed with autism.
The tragedy is not just the two diagnoses but the fact both came years later than they should have done, losing valuable time in each case.
"But eventually we had the assessment and we could begin getting the help we needed. That is what the tattoos represent," he says.
Ken, who runs a family electrical contracting business, lives with his wife Janice and their three children, Cathal, age six, Aaron, five, and Sadhbh, aged three, in Blanchardstown. "Around the age of two, Cathal went into regression," he says. "He had been speaking, he had been saying 'Mammy', 'Daddy', 'Mammy, drink', then suddenly silence, he began to cover his ears as if he couldn't bear sounds," says Janice.
Each parent handled the situation in their own way. Ken, who through friends had experience of child autism, felt he knew almost immediately what was happening. Janice could not, or would not, see it.
"I was in denial. I kept saying, 'he's fine, Cathal is shy, he's just a bit quiet,'" she says. They learnt the hard way that parents of children with autism have to wait for everything, including assessment, and the waiting list then was two years plus.
Cathal was finally assessed at Solas, Ireland's first National Diagnostic and Assessment Centre, Dublin 3, which was opened officially last year by the voluntary organisation Irish Autism Action. The assessment was undertaken by educational psychologist Allan Willis, who works solely with Autism Spectrum Disorders.
"We were told that Cathal had mild autism. He could go to mainstream school, and needed six hours of special needs assistance at school, as well as occupational therapy and speech therapy. For me, it was like getting the prescription. It was a great relief, like: 'Thank God, I have the piece of paper; now we can do something, we can get on with it'," says Ken.
"I was floored. It was pure misery and I found it very hard," says Janice.
As Cathal's parents they followed his assessment to the letter. Cathal is in Junior Infants in a mainstream primary school and has a special needs assistant with him in the classroom for five hours a day.
"Cathal is very intelligent. He is doing well at school. If he were not being helped he would be pushed to the bottom of the class, crying. I would be called up to parent teacher meetings all the time," says Janice.
The couple has also converted their attic into a classroom. "We work with him at home, using flash cards to help with vocabulary. We went on the Thinking Toys website (www.thinkingtoys.ie) which sells toys for children with special needs. Cathal understands everything, he hugs us, he looks at us, he tries to talk to us. We pay for a private teacher to come to our home four hours a week to give him life skills," says Ken.
They have been less successful in meeting his other developmental needs. "We have our diagnosis, but when you get on to the HSE, they say they have to do a further assessment, that he has to go on a waiting list for speech and occupational therapy. We're still waiting."
Cathal was reassessed in Solas in December 2007.
"He has made a vast improvement. He is now diagnosed as having high-functioning autism. The diagnosis we got from the Solas Centre was spot-on," says Ken. But meanwhile, the unthinkable had happened. A year after Cathal's assessment, their second son, Aaron, was diagnosed with autism, in a more severe form than Cathal's.
Aaron has little or no verbal communication, he also needs speech and occupational therapy, but educationally, he will not benefit from mainstream education. Many children with autism do much better in an educational system called Applied Behaviour Analysis (ABA), and Aaron's diagnosis pointed in this direction. "I mourned Aaron. You mourn the child you will never have," said Ken, as Janice nodded in agreement.
ABA, a behaviourist approach to children with autism, was pioneered at the University of California. ABA teaches behaviour modification, speech therapy, social skills training, using short intensive teaching periods, with lots of reinforcement and measurable goals. Such early intervention before the age of five and lasting two years seems to greatly help some children with autism both socially and intellectually.
Last September, Aaron qualified for a home tutor for 20 hours a week. "It is just a matter of luck that she has ABA experience, and because of this, Aaron is coming along well. She has Aaron dressing himself, cleaning his teeth -- she works one-to-one. The bad news is that we will lose her in June and we have no guarantee that her replacement will have the ABA experience. As far as we are concerned, this will make a huge difference to Aaron's progress and development," says Janice.
The parents talk also about their daughter Sadhbh and their need to give her as normal an upbringing as possible.
"Sadhbh runs the house! She has a good relationship with Cathal, no relationship with Aaron and she bosses them both about. She thinks every home has a classroom in the attic and wants to sit in on the learning. Sometimes we allow her up there, and playing with Aaron will help their relationship."
They say they can well understand marriages coming a-cropper where there is an autistic child in the family. "It takes its toll on every single aspect of the relationship. We go out once a week, just the two of us, and we are also very lucky with our extended families," says Ken.
"We got a lot of informal help from the Irish Autism Action and the Solas Centre; otherwise we would be left in the dark. Cathal is doing fine, but Aaron is the heartbreaking one at the moment. You shouldn't have to go to bed crying most nights because you are so worried about your child. Why do we have to wait so long for everything when time is so vital?
"I would say to other parents to be aware. If you suspect something, follow it up -- I was in denial. I told myself 'Cathal is quiet and shy, there's nothing wrong with him'. It's better to find out; it's better to know -- the earlier the better. It won't change the facts anyway. Cathal is doing well. My dream now is that Aaron will get the help he needs in time," says Janice.
Ray of hope for families: Solas Assessment Centre
One in every 166 children has autism, according to Department of Health figures. However, this covers the whole autism spectrum including children with ADHD and Asperger Syndrome, as well as classic autism.
"Nobody knows how many children in Ireland have classic autism because the research has never been done," says Kevin Whelan, CEO of Solas, Ireland's first national diagnostic centre for autism, which opened last year.
The Irish word solas means 'light' and the aim of Solas is to bring light and hope to families affected by autism. The Solas promise is that no family will wait longer than three months for assessment. Since its opening, the centre has already assessed 270 children, and given them a service plan.
Time is of the essence. "It has been proven worldwide that early accurate diagnosis, coupled with early intensive intervention, increases the child's opportunity for positive development and success. Up until recently, families were waiting 18 months or more to receive a full diagnosis from the HSE, and longer for an assessment of educational and medical needs. This represents very valuable time lost, which can never be regained," says Kevin Whelan.
"The Department of Health recently gave a guarantee for children from birth to age five, that once a referral is made, the child will be assessed within six months. There is, as yet, no guarantee for the children over five (of whom there are many) who have not been diagnosed within the autism spectrum. Some of the delay can be due to high staff turnover, which means there may be one vacancy in a multidisciplinary team holding up the whole assessment. Solas has no such problems, and can call in a full multidisciplinary team as needed.
"Parents can self-refer, and we are getting people from all over Ireland. Assessment by a multidisciplinary team usually takes two visits, and parents go away with an action plan, including local contacts to help them follow up whatever recommendations we have made," adds Whelan.
To date Solas has not received a cent from the state. The centre has been set up by the voluntary parents group Irish Autism Action who lease the property. O2 helped with setting up costs and continue to contribute to running costs. The service costs €450,000 a year to run, made up from O2 contribution, assessment fees from parents who can afford to pay, and fundraising activities. Irish Autism Action raises €250,000 each year themselves, a massive undertaking. A huge plus is the involvement of Keith Duffy of Boyzone, whose daughter, Mia, has autism. "There is no way we could have achieved what we have done without Keith," says Kevin Whelan.
"April 2 is World Autism Day. Wouldn't it be wonderful if the state were to mark the day by being willing to recognise the benefits of our service, funding us accordingly so that we could open a similar facility elsewhere in the country?"
Solas Centre, Irish Autism Action, St Gabriel's Road, Dollymount, Dublin 3. Call 01-8531572 for further info or go to www.autismireland.ie