Parents whose children are diagnosed with an autistic spectrum disorder (ASD), often find themselves reeling. They may have been given the news by their GP or a specialist multi-disciplinary team, and most likely left the consulting room with a million questions jostling for answers.
They might have been advised to read a couple of books, or had a leaflet thrust at them as they exited. But if they live in Argyll they would be holding a thick folder stuffed with information on local services, support groups, benefit entitlements, educational resources, parenting courses, the latest research into the condition and how best to help their child and family adapt.
Launched in 2001 by support group Autism Argyll, the information pack has been so well received by parents and professionals in the region that the Scottish executive has earmarked £300,000 to roll it out right across Scotland.
ASDs affect an estimated 520,000 people throughout Britain, and sufferers often have difficulties in empathising with other people or relating to the world around them.
Handing out an information pack may not sound revolutionary, but for parents frantic to help their child in a system that until now has lacked a comprehensive, strategic approach to ASDs, it is a lifeline to vital services that might otherwise take years to discover, let alone access.
As the parent of a child with autism, Alison Leask, who created the pack, found that she spent days searching for and evaluating information on her own, and wanted others to have a different experience.
"The pack had to be up to date, eclectic, unbiased, and it had to be given out at the time of diagnosis," Leask explains. "The minute the packs came out for parents, professionals were clamouring for them too. Packs have gone to health visitors, social services, resource centres and educational psychologists."
Care professionals pay the £15 it costs to make up the pack, but parents receive it for free. "I have no doubt that some of the information in the pack is available on the web," says Leask, who has since completed a postgraduate diploma in autism and is a visiting lecturer at Birmingham University. "But to me it's really important that parents get that information on the day of diagnosis, that they walk out of that room with something in their hand."
Isobel Sutherland, acting chief executive of the Scottish Society for Autism, welcomes the roll out of the pack across Scotland, and notes that better parental and professional awareness of services may help to drive more widespread provision: "I hope it will make policy makers put money into services - there remains a lot to do in terms of delivery."
The Autism Argyll pack is only one element of a £2m funding package for families affected by autism announced by the Scottish executive. There will also be one-stop shops for adults, autism awareness training for care staff, a new ASD unit offering Scottish Vocational Qualifications, and educational resources for GPs and multi-disciplinary teams.
Taking a strategic approach to service provision is what matters, emphasises Eileen Hopkins, development director for the National Austistic Society (NAS). "In England and Wales, there's very little available that is strategic. The only thing the Department of Health and the Home Office have funded so far is the Help Programme - six three-hour sessions for parents - to help them understand what autism is," she says.
"The final slot in the programme identifies the key people and services locally, and that's where you see the disparity in support services."
This is echoed by Pauline Snelson, whose 11-year-old son has Asperger's syndrome, and who acts as the parent representative on the NHS's Eastern Cheshire diagnostic and assessment team for autism.
"The problem for parents is that after diagnosis you need ongoing support. The team here is sensitive to that need but they have no funding to provide it," she explains.
Given that there is no national register of people with ASDs, it is tricky for councils to plan services. But as the diagnosis rate increases, Leask is aware that for more parents in Scotland, the information pack will soon be an invaluable resource.
"It's important that we continue to update it and keep it going so that it doesn't fall apart after the three years it's been funded for," she says.
· Contact the NAS autism helpline on 0845 070 4004 10am-4pm weekdays . The Scottish Society for Autism is at www.autism-in-scotland.org.uk