‘We cannot get basic rights for our children’

MAIREAD RYAN was nine months pregnant with her second child when she discovered her firstborn, Emma, was autistic.

Mairead and her husband, Kieran, feared the son she was carrying would be autistic too - and so it proved when Evan was born.

Now, Emma is ten years old and Evan is four-and-a-half. The struggle has been immense.

Emma was sent around the block and given different diagnoses before, at the age of five-and-a-half, being told she was ‘displaying autistic tendencies’.

“The professionals just weren’t diagnosing Emma because they knew if they did that Emma and us as her parents would have rights and furthermore that we’d insist on them. We wanted to know what was up with Emma before Evan was born.

“The fact that he was a boy and that autism is much more prevalent in boys made us even more fearful. And those fears were confirmed. But despite getting him on a waiting list for assessment from when he was nine months old, it wasn’t until just before he was two years of age that he was referred by the paediatrician to a psychologist.

“He wasn’t seen until he was three-and-a-half. He was supposed to be an emergency case.”

The mother-of-three says the system continues to fail our children. “They don’t diagnose children because they know that, if they do, they will have to provide the services they need. They are not learning from the court cases and the suggestion that psychiatrists care for our children is mind-boggling.

“It’s the 60’s all over again. Let’s hide these children away in an institution. An investment at an early age in our children is what is needed. In the long run, it will save the country money. Some children with autism go on to lead a very independent life. Surely that has to be better for the country than locking the children away in an institution-style setting.

“Emma has autism, as has Evan, but that’s a big enough problem for them without making drug addicts out of them too.

“There is an epidemic raging in the Government’s face at the moment and they are doing absolutely nothing to stop it.

“They are choosing to ignore it. It will bring the country to its knees in the future, if something appropriate is not put in place for the children who have been systematically ignored and neglected by successive governments.

“We took Evan to an educational psychologist from London last July. He assessed him as being mild to moderate and recommended Applied Behavioural Analysis (ABA).

“We took Emma to the same gentleman in September of last year. She is no longer mild to moderate but has regressed and is now moderate to severe.

“He recommended that she get 30 hours of ABA a week. The Department funds just a third of this.”

Both of these assessments were paid for by the family.

“We took her out of school on January 14. We have kept her home since. We were gravely concerned as to whether we were making the right decision, but we could not continue to stand by and watch our beloved daughter continue to deteriorate.

“We take on the role of speech and language therapist, occupational therapist, teacher, play therapist because the Government is simply not putting enough resources into providing for our children. We are asking for our children to be given a chance to grow and develop.

“We cannot get basic rights for our children.”

Emma is on an Applied Behavioural Analysis (ABA) programme at home and she’s never been happier. “We have a classroom at our house and Emma continues to make progress on a daily basis.

“She is now saying ‘mammy’. Her behaviours are much improved. ABA is most effective when the child is very young, but Emma is testament to the fact that improvements can be made with older children also.”

The couple get just ten hours home tuition funding from the Department of Education and Science for Emma each week. They fund the other 20 hours themselves.

Evan is also on an ABA programme at home and is making progress. He still attends the day centre three days a week, and playschool the other two.

He gets ten hours of home tuition funding.

The couple’s third child, Chloe, is two today. And it’s just now that she’s getting to really know her brother and sister.