Autism ‘chaos’ as one-third wait over year for diagnosis

Critical chance to intervene early being missed By Fiach Kelly and Edel Kennedy MORE than one in three parents trying to find out if their child is suffering from autism are being forced to wait over a year for a diagnosis. Official HSE figures obtained by the Irish Independent under the Freedom of Information Act also reveal huge regional discrepancies in diagnostic waiting lists across the country. Some children are forced to endure two and three-year delays, while others are seen in less than two months. Health experts last night criticised the “chaotic” system of autism diagnosis. They said delays in diagnosing children who may have autism could result in a crucial “window of opportunity” for early intervention being missed, which may lead to slower and limited development of critical social and behavioural skills. In Cavan/Monaghan, 28 children aged between six and 18 are on a three-year waiting list in one centre — with no medical specialist employed in the region to see them. An Enable Ireland facility in the area, which has nine staff available, has no waiting list for children aged up to six years. There are also two-year delays in Cork and Meath and as much as a three-year delay for some in south Tipperary. Some 79 children in Sligo, Leitrim, west Cavan and Donegal are facing a 14-month wait to see the one consultant child and teenage psychiatrist based in Letterkenny. In contrast, waiting times in the Dublin region are all less than a year, with six-month lists in the majority of areas. Parents waiting on a diagnosis for their child cannot travel outside their catchment area to a different HSE region. However, voluntary organisations such as Irish Autism Action provide diagnostic services to families from all over the country. The figures reveal that more than 1,000 children around the country are currently waiting for a possible autism diagnosis. Of 1,040 children on waiting lists nationally, 35pc will have to wait for up to six months, 23 pc have to wait for six months to a full year, 11pc for one year to two years, 25pc for over two years and almost 6pc — or 60 children — for as long as three years or more. Concerns A possible diagnosis may be given after a child has been assessed by a multi-disciplinary team. They may be referred to the team by a GP or a clinic because of concerns about development delays. The child can be seen by an occupational therapist, a speech and language therapist, a psychiatrist and a psychologist and may be observed both at home and in school before any diagnosis is made — a process that can take up to six months. The previously unreleased figures also show priority is being given to children under five, who must be given an appointment within six months of their first referral, as stipulated in the Disability Act. But in some cases, the six-month timeframe is being breached. Dublin North Central and Dublin North have 10.5 month and eight-month waiting lists respectively. And while priority is given to those under five, older children are put on longer waiting lists. In Meath, seven children up to the age of six are waiting six months. However, 36 children between six and 18 face a wait of two years for diagnosis in the same area. A spokesman for the HSE last night refused to comment on the regional discrepancies — but, despite the figures, insisted all children were being seen to within the specified timeframe. “The information we have is that all children are being seen in the timeframe as set out in the legislation.” “It doesn’t follow that because you’re on a waiting list for one service, you’re not getting attention. There are waiting lists, and we acknowledge that there are areas that have to be addressed, but there is ongoing funding for disability services. We are recruiting 12 consultant child psychiatrists and there are eight additional teams going into place nationally.” Professor Michael Fitzgerald, an expert in child and adolescent psychiatry at Trinity College, said it should be possible for a child to be diagnosed within six months, but said the ideal wait was two months. “There is no good explanation and no good reason for the delays,” he said. Emergency “This is a critical issue and needs to be seen as a medical emergency. It sounds a bit chaotic and it is worrying. Early intervention is absolutely critical because the brain is still ‘plastic’ and it is possible to increase the number of connections between the nerve cells.” Kevin Whelan, CEO of Irish Autism Action, said his organisation would volunteer to go up to poorly served areas and help with waiting lists. “The HSE talk about early intervention and how important it is,” he said. “But how can you have early intervention if you have a three-year waiting list? “We’re making a public offer to the HSE to go up to places like Cavan/Monaghan and help to get it done.” Fine Gael’s health spokesman Dr James Reilly last night described the waiting times and regional discrepancies as “unacceptable” and “completely unsatisfactory”.