One of the worst aspects of autism is the lack of guidance on being a good parent to youngsters who struggle with things the rest of us take for granted. Expertise does exist, but mostly inside specialist heads. But now, after a successful pilot, the National Autistic Society has plans to spread those skills more widely.

“These are straitened times for local authorities,” says Shona Pinkerton, principal at Daldorch House School, East Ayrshire. “But that gives us an opportunity to create something valuable that parents want. One of the biggest challenges for families is the absence of support or training. Courses on the theory of autism exist, but it’s a quantum leap to turning that into good practice.

“These are families whose time is incredibly pressed. They have youngsters with very challenging behaviour. Autism in its more complex forms can make family life exceptionally difficult.”

Good training and better knowledge will never make parenting an autistic child easy. But it does provide much-needed skills and confidence. A one- year pilot, based on Daldorch research, funded by the Scottish government and run in three local authorities, demonstrated “a huge improvement in the coping skills of families and a massive reduction in their stress,” says Mrs Pinkerton (see case study).

Those benefits will now be made available to families all over Scotland, thanks to a pound;555,000 grant from the Big Lottery.

While autism is a spectrum of developmental disorders, one common feature is sensory problems, says family support facilitator Julie Gorman. “You are holding a pen, listening to us and seeing what’s going on around you. A young person with autism couldn’t process all that at anything like the same pace.”

Removing inputs from some senses can help, says Rachel Sloan, another family support facilitator. “Maybe the room’s too bright or there’s too much on the noticeboard. Taking all that in, plus trying to listen to someone, can be difficult. If you switch off some sensory inputs, it can allow a child to learn.”

While some youngsters with autism don’t speak, those with Asperger Syndrome - which is on the autistic spectrum - give glimpses into their world, says Mrs Pinkerton. “They say that by the time you consciously rid yourself of everything bugging you - the lights above your head, the buzz from the computer - there is little left for what you’re supposed to be doing.”

Whether that’s listening to a teacher or responding to a peer, a child with autism struggles for mental focus while coping with distraction. It’s why classrooms for autistic children look totally different from mainstream primaries, which aim to stimulate.

An autistic classroom is designed to do the opposite. Even a small piece of paper on a wall can cause distress, angry outbursts and inability to learn. “So one of our seminars for parents is on sensory issues,” says Ms Gorman. “There’s so much to say. Their child might be having toileting problems, for example, which are very common. But it might not be a toileting issue, but one caused by too much sensory input.”

The new initiative, managed from Daldorch but extending across Scotland - with facilitators based in Edinburgh, Aberdeen and Inverness - provides three levels of support: a telephone helpline; one-day seminars; and a six-month programme that provides training, access to a facilitator and focused support for the family setting.

Sixty families a year will get the intensive support, but 10 times as many will benefit each year from the project, says Mrs Pinkerton. “The pilot programme was entirely intensive. So the helpline and the seminars are new. The phoneline will be based here at Daldorch. Families can call and ask for advice on a range of subjects.”

As well as chatting to callers, the facilitators will send out NAS leaflets and pdf files, covering topics ranging from anxiety, advocacy and auditory integration to telling a child about their diagnosis.

“It’s not just a receptionist sending leaflets. There is real interaction with experts who know about autism,” says Mrs Pinkerton. “Here, at Daldorch, where we’ll be directing the programme, Rachel has a master’s in autism, Julie is a senior practitioner in care and education, and I have 25 years’ teaching, lecturing and research experience - as well as access to the experience of 400 staff at the school.”

Telephone discussions will also involve a judgement by the facilitator on whether a family needs the next level of support - the one-day seminars. Five are already prepared, rehearsed and ready to go: first steps; managing anger; toileting difficulties; sensory needs and teenage life.

A key feature of these seminars is personalisation, says Mrs Pinkerton. “They give lots of information tied into activities showing what it means to them and their children. If you get a day of theory then go home, the real world hits you and you might never get the chance to turn it into practice. We give people things to do with their own child right away.”

These are often simple techniques and resources, says Ms Gorman. “So there’s the Incredible Five-point Scale, which is just five wee faces, from smiley to really stressed. Children point to where they are on the scale to show how they’re feeling.”

It’s not about expensive resources, says Ms Sloan. “It’s things that are easily available and often free - wee, tactile objects that calm them down, which you can even make yourself. Worry-dolls, for instance, that the kids tell their worries to, then put under their pillow, so they don’t have to worry about them any more.”

All parents who attend a seminar will be followed up, says Mrs Pinkerton, to check progress and learn who will benefit from the intensive stage of the new programme. “That six months of intensive support comes with a detailed manual that shows how autism affects you and your child at every age,” she says.

“We know from research that manuals you’ve worked on with a facilitator are very effective. You can go back to them year after year, as your child grows and develops, and so do the difficulties.”

The National Autistic Society’s long-term aim is for the new support programme to become self-sustaining, funded by local authorities - which are now looking at cheaper options to putting children with severe autism in a national school like Daldorch, for seven-day-a-week, 24-hour care, away from parents.

One option is five days a week in a school - perhaps a smaller, more local school - with children going home at weekends. That can’t happen now, because not enough parents have the skills to keep severely autistic kids at home. But it could work, once the new support programme has delivered these skills around the country.

“Wouldn’t we all want our children to live in the family home?” says Mrs Pinkerton. “That’s why I said lack of funds in local authorities has given us an opportunity that will work well for children and their families. At the end of the day, it’s about understanding people and their needs and doing the best you can for them.”

- National Autistic Society http:www.autism.org.uk

- Daldorch House School http:www.autism.org.ukdaldorch

- Phone line for NAS Scotland Family Programme: 0808 800 075, available from March 2012

AUTISM IN SCOTLAND

- 1 in 100 people has autism - 50,000 in Scotland.

- 6,800 children in Scottish schools have autism.

- Children with autism are three times more likely to have mental health problems.

- More than 27 per cent of children with autism have been excluded from schools.

- Almost pound;300,000 to support the national autism strategy has just been announced by the Scottish government, which launched its pound;13.4 million autism strategy in November.

http:www.scotland.gov.ukPublications201111011203400

PLAYING DOCTORS HELPED RELIEVE THE SYMPTOMS OF STRESS

Parent Eddie Scott lives in Bo’ness and took part in the pilot programme.

“Our wee boy David is quite severely autistic and has learning difficulties. At that time he couldn’t talk and wouldn’t eat or drink. He had a feeding tube straight into his stomach, which had to be changed regularly in hospital under anaesthetic. Very distressing for anybody, but especially for an autistic child. Screaming, shouting and tantrums were common then.

“What we learned on the programme was to prepare him weeks in advance, so he could be comfortable and relaxed. So instead of saying `Right, David, we’re off to hospital now’ and everyone panicking, we’d talk through what was going to happen when he went into the hospital, the ward, and got his weight and height taken. We learned to rehearse it all with him.

“It maybe sounds silly, but they brought out a toy doctor’s set, with stethoscope, mirrors and a hammer for your knees. We rehearsed David with that, showed him what the doctor would do, let him listen to his own chest.

“With autistic children, it’s all about planning and priming and making them aware how they can cope if something unexpected happens. We learned that the senses are completely different in autistic kids. I’d no idea noise or different colours could be painful. So if David thinks a loud noise might happen now, he sticks his fingers in his ears.

“Our little boy used to chew anything hard and cold. He once ate through our coffee table. We learned it was stress relief. The texture gave him comfort. So we’ve now bought him things he can chew on.”

“As a parent of an autistic child, you can feel isolated and that your situation is worse than anyone else’s. So getting to meet other parents on the programme was really good. You realised they had problems similar to yours, and ways of dealing with them you hadn’t thought of.

“It is never going to be easy when you have a child with autism. But it is easier than it was. Nowadays, we’re kind of experts, but we were hopeless then. The Daldorch programme was the first thing that made a difference. It was a light being switched on.”

Photo: Tanya Tennant, left, leads a drama session at the Daldorch House School and Continuing Education Centre in Catrine, Ayrshire. Credit: Tom Finnie