Rachel tugs at her mother’s arm. Frustrated, she points to a laminated picture of Kermit the Frog, which is attached to a sheet with Velcro, along with other pictures she uses to communicate.
“No, we don’t have ‘Kermy’ with us today,” says Tricia, her mother, meaning that she doesn’t have the Kermit video, one of Rachel’s favourites. I switch on Cartoon Network and this meets Rachel’s needs, for the time being at least.
Rachel Nolan, of Daingean, Co Offaly, is approaching her fourth birthday, and is autistic. She was diagnosed at the age of two, when a nurse who called to attend to her younger sister, who was gravely ill, had reservations about Rachel’s behaviour for a child of her age. She voiced the reservations after the tragic death of Rachel’s sister Chloe at the age of just nine months.
Confirmation of Rachel’s condition came when she was referred to an autism team in Mullingar, where Dr Peadar O’Grady diagnosed her as having moderate to severe autism.
While Rachel has improved gradually over time, she is still well short of the expected rate of progress, as the facilities are not in place to give Rachel the assistance she needs. She is not getting enough speech therapy, as the Midland Health Board does not have the money. It is a widespread problem. Hence the constant fundraising by the likes of Coronation Street star Keith Duffy, who also has an autistic child.
It’s not all doom and gloom though. Rachel does receive 35 hours of home tuition a month, which is funded by the Department of Education. She has graduated through a number of schools and in September will attend a specialist autism school, which is a unit of a mainstream school in Ballinamere, just outside Tullamore in Co Offaly.
It is thought by some that by mixing autistic children with ‘normal’ children, they can pick up on the more conventional habits that they practise. By staying within a circle of autistic children, they only imitate their own ‘bad’ habits.
While most parents take enjoyment from seeing their four-year-old children approaching fluidity of speech and some degree of independence, Rachel’s parents Oliver and Tricia instead take solace from the fact that Rachel has recently begun to utter words on a regular basis. “Go-way” (i.e. “go away”) is the only phrase that Rachel uses without prompting. When prompted she will say “mama” and “dada”.
Despite being behind her peers, she is making progress. She is sleeping better, she looks up when someone enters the room, her eye contact is much better, she points out things, can feed herself a little and is now toilet trained.
There is a five per cent chance that Oliver and Tricia could have another autistic child. Of course there are children and families who are worse off than Rachel, Oliver and Tricia, but the road is long and hard, and the emotional troughs far outnumber the peaks.
There is a great deal of confusion as to what exactly autism is. Degrees of autism vary but a popular misconception is that it means someone stares at the floor and cannot communicate.
In truth, autism is a disability that affects the normal development of the brain in areas of social interaction and communication. The first signs of autism usually appear as development delays before the age of three. It is approximately four times more prevalent in boys than it is in girls.
Autism is not a mental illness and it is not caused by trauma. It is neurobiological and its symptoms can be greatly reduced by early diagnosis and treatment. Although every individual with autism is different, there are common characteristics that can be observed.
In terms of communication, speech and language develop slowly or not at all and/or communication may be made through gestures rather than with words. Autistic children tend to have a shorter attention span. Social interaction is often poor with failure to make friends common. Children are also less responsive to social clues such as eye contact or smiles.
Playing methods are also a tell-tale sign. Autistic children often play with toys in an unusual way, do not imitate the actions of others, and may be very attached to certain objects. Also, they may throw tantrums for no apparent reason, be overactive or very passive and resist changes in routines or environment. They may be very sensitive in areas of sight, sound, touch, feel or taste or can seem unaware of pain, heat or cold. Some parents also suspect their children are deaf before the diagnosis is made.
One per cent of the Irish population suffers from autism. Worryingly, the number of cases is increasing by 100 every year. Thirty years ago, one out of every 10,000 people were autistic, just 0.01 per cent. Theories abound as to why this is but no concrete conclusions have been drawn. Some believe the MMR vaccine is a cause; others put it down to diet while researchers in Canada believe that antenatal ultrasound raises the temperature of the brain, thereby causing autism.
Gerry Loughlin, chairman of the Laois-Offaly Families for Autism (LOFFA), once heard autism described as the “lonely disorder”. “Unless they are helped, they spend the rest of their lives alone and frustrated, incapable of functioning in society,” he says.
He describes the facilities as “dire” and points out how it is widely recognised that autistic children need multiple sessions of speech and language, occupational and behavioural therapy each week and this therapy must be intensive.
Mr Loughlin is frustrated that the government task force report on autism that was carried out four years ago has not been implemented. “I think it’s fair to say that when a child is getting such a level of neglect that you could call it child abuse,” he says. He points to the old adage that ‘you can’t teach an old dog new tricks’ can be applied to autism. The older the child becomes, the harder it is to break the bad habits.
Early intervention gives an autistic child a chance to lead some sort of ‘normal’ life — a chance to beat the lonely disorder.
Autism is a neurological condition in which a child is unable to relate to people and situations. It first emerges in early childhood, when the child is first developing social and interpersonal skills.
It is rare, affecting five people out of every 10,000. Seventy per cent of people with autism are male. Physically there is nothing wrong with people who have autism, and this can make diagnosis difficult. However, most autistic children will have been diagnosed by the age of three.
For more information contact:
The Irish Society for Autism,
Unity Building,
16/17 Lower O’Connell St,
Dublin 1
Tel: (01) 8744684
Web: www.iol.ie/~isa1/