Early diagnosis of autism is essential in mak ing a real difference. Hélène Hofman reports on a new service which aims to diagnose two to three children a week
The State's first dedicated diagnostic and assessment centre for children and families affected by autism is expected to open by Christmas.
The Solas Project, which will be based in Clontarf, Dublin, is being established and managed by Irish Autism Action (IAA), the umbrella body representing parent groups, support services and schools for people affected by autism.
Once the centre opens, IAA hopes to diagnose two to three children a week.
According to the charity, families currently have to wait up to two years for a diagnosis, without which they cannot gain access to services such as speech therapy and home tuition grants from the Department of Education.
"The big problem that kids with autism have is that even though services are patchy at the best of times, if you don't have a piece of paper saying you are autistic, you can't access even basic services.
"And you do need to access them as soon as possible," says Cormac Rennick, chairman of IAA.
Although there are no figures available in Ireland, the National Autistic Society in the UK believes that one in 166 children are affected by autism.
"Without a doubt, any typical school will now have two or three autistic children," says Allan Willis, an educational psychologist from Britain. Willis acts as consultant to IAA on the Solas Project.
"Early diagnosis is essential because autism is a developmental disorder. The earlier you get onto it, the sooner you can help. You've got a better opportunity of making a difference when they're younger," he explains.
IAA estimates the project will cost €450,000 a year to run. Some of this money has been raised through fundraising activities. Negotiations are ongoing with the HSE to secure the rest of the funding, over half of which is still needed.
The assessment and diagnostic centre will have four staff members, including a clinical psychologist to carry out a detailed diagnosis and an administator.
An occupational therapist and a speech therapist will work on an appropriate education programme and help with communication, co-ordination and sensory problems.
The market value of these three assessments is about €2,500, but the Solas Project hopes to provide them free of charge.
In July, to demonstrate how the service would work, Willis diagnosed six children and returned a report on them within two weeks. Four of the children assessed were from Kerry, an area that IAA believes is particularly lacking in diagnostic services.
Emer Patterson's six-and-a-half year old son, Conor, was among those to be assessed. "The difficulty was not just getting an assessment, but getting an assessment of the needs that he had.
"The assessment that we got, to put it mildly, was completely useless and consisted only of vague recommendations.
"Alan Willis's recommendation was specific. It stated where he is academically, what his needs are and what he doesn't need," says Patterson. "Conor is non-verbal and there is a window of opportunity to work on speech when they are young, but early intervention is essential.
"I'm not saying that with this intervention Conor would be able to speak but he certainly would have had a greater chance. It's highly unlikely he will ever speak now," she says.
Patterson and the parents of the three other children from Kerry to be diagnosed by Willis are now working to open a specialised school. They have made a submission to the HSE for funding, but plan to open on an informal basis in the coming weeks.
The school will employ an education supervisor and four applied behaviour analysis (ABA) tutors - one for each of the children.
"The school for four children will cost €200,000 a year to run and we have been fundraising to get that money. Without a specific diagnosis we couldn't have gotten this far," Patterson says.
If the Solas Project succeeds, IAA plans to expand the centre to include social and psychiatric services. It will also look at setting up similar diagnostic centres in other parts of the country.
"An analogy I use is a group of kids standing at the bus stop. There are no buses coming, and even if there were buses, the kids don't have the right ticket to get on. We can't provide buses - that's up to the Government - but we can give tickets and the diagnosis is the ticket," says Rennick.
For donations or more information on autism and the Solas Project contact Sarah on tel: 044 9342576 or visit www.autismireland.ie.