This is Mark's family's story, told by his mother Nicki.

My husband Steve has a physical disability and owns his own business. He trained as a health professional in England as his disability precluded him from studying in New Zealand. He is a very independent person and always wants to do the best he can in any situation. He was the disabled world champion at his chosen sport before he gave it up to spend more time with the family. He is a real "hands on" Dad and family man.

Claire, our daughter, is now 13. She has Asperger's syndrome. Mark is now 11 and he is autistic. From birth Mark was a difficult baby; nothing we did with Claire worked with Mark. By 18 months Mark could not bear for us to stop on walks in the pushchair or in the car and would start screaming. He would bang his head on concrete. A child psychologist who observed Mark indicated that he had an intellectual disability with autistic tendencies. We were stunned! By the time he was three it was obvious he was autistic.

As a family we were prepared to do anything to support Mark. We heard about an applied behaviour analysis programme that was helping autistic children recognise words and concepts like colours and shapes. We paid, in one year, up to $15,000 to have university psychology students come and work with Mark (using this method) in three-hour sessions. It was a system of repeated drills, and certainly showed us that he was capable of learning new skills. It helped him gain some words. By age four Mark could speak about six words. We thought that if he learnt to communicate better we could help him to manage his behaviour. Looking back on this time it helped Mark, but it was a huge financial outlay. But that was all that was available. We now know there are better ways of working with autistic children. We needed to focus more on working on Mark's behaviour and communication.

Our child psychologist went to Australia and learnt about using visual intervention or photographs to communicate with autistic children.

We realised Mark didn't know what was happening around him and by using the photographs we could now indicate time for school, going to the doctor, showering or eating by showing photographs to him. The visual connection allowed him to associate words with pictures and his speaking developed. Now he can use words and can speak in full sentences and loves talking.

When we realised the value of the visual approach I worked with another parent and our psychologist to form a visual support group for families with autistic children, to share how we used photographs to communicate with our children. We were invited to run workshops and speak at conferences overseas. The use of visual intervention strategies really took off.

We are not certain that Mark can fully understand his Dad's disability. He can identify feelings such as anger or disappointment and can relate them to himself.

The learning never stops, and one day a fortnight I work with Mark at home on independent living skills like cooking, cleaning his room, catching a bus, shopping etc. He is at school but we also use work from the Correspondence School to enhance his learning.

Life has not been easy for our daughter Claire. She is academically able and was successful in a normal primary school. She had one particular friend who understood her differences and helped her with social situations.

We have sent her to a local private secondary school so she has the benefits of a smaller school and smaller classes. The school has been wonderful in supporting her in what has been a rough road into teenage years.

For teenagers difference matters, and Claire feels she has been identified as being different. She has been bullied and given a hard time, although the school has been wonderfully supportive and run anti-bullying programmes etc. It is not enough that she can cope well enough academically - the fact that she is not good at sport and thinks differently singles her out.

At times she has taken medication to ease her anxiety and if things don't work out our only option would be homeschooling, but we hope it won't come to this because we want her to learn social skills and learn how to deal with attitudes she may meet later in life. She has friends from school who relate well with her in the holidays or at our place, but they are not strong enough to stick up for her at school and can exclude her from group activities.

Claire and Mark went to a CCS-run preschool for children with special needs. This was great for them and our family, as the school operated a very holistic approach and provided a lot of support for parents.

When it was time for Mark to go to school, myself and a number of parents of autistic students lobbied the Ministry of Education to establish a class for autistic students that used visual strategies. The timing was right and a classroom for (then) seven autistic students was set up in a mainstream primary school. We were lucky in that an experienced teacher of autistic children was able to take the class and the Ministry of Education spent money modifying two classrooms to make them suitable for our children. A number of the children at that time carried a high level of special needs funding. Mark was schooled there until he was nine, then he needed to move schools because there were difficulties.

I investigated a number of special schools and believed that he would be best placed in a special school a 30 - 40 minute drive from us. We enrolled him there and it has proved to be just the school for him - the teachers have transformed him. It was a difficult first year however, as he had to learn new behaviours.

On regular occasions, to begin with, he spent time in a time-out room. He learned not to hurt other children and adults. We so appreciate his teacher and the school that another parent and I nominated her and the principal of the school for the Multi Serve Education Trust awards last year - but sadly they did not make the finals. We have to pay $40 per week to subsidise Mark's taxi fares to school as he does not attend the nearest special needs class or school, but finding the right school placement is well worth this.

"The school has been wonderful in building positive relationships with Mark and with the families of their special needs students. The teachers liked Mark, and saw beyond his behaviours and recognised his frustrations and developed ways to deal with him."

Living day to day with our son is hugely demanding. There have been times when I have been willing to drop him off at Group Special Education or the nearest hospital and leave him there. A year or so ago we went away for a holiday, but it was awful really - Mark hitting Claire for no reason and being distressed much of the time - but there were some good moments. Mark couldn't cope with the changes to his routine. We desperately needed time out from managing his behaviour.

There was one time when I had to call the Police. Mark is a big boy now and very strong. I could not stop him from running out into the street and maybe lying on the road or going into a neighbour's house and being destructive. I had Claire behind a locked door for her safety. The Police came and helped me get Mark into a locked room but told me that if I called them again they would have to report it to CYFS and we were so afraid of losing custody of him.

We were worried about the time we had for Claire. Mark was kicking her and hitting her without provocation. She was facing her own problems at a new school. In our worst moments we joked about buying two houses and living alternately with each of the children so we could have some time that was not focused around Mark's behaviour. Steve's and my relationship has always been strong but it was under stress.

Several years earlier, Sue, a teacher aide at Mark's original school, agreed to take him for respite care, and this built up to alternate weekends in mid 2004. From the beginning Mark behaved well at Sue's and developed positive relationships with her, her teenage children and her one child who is younger than Mark. Sue suggested shared care, with Mark spending week about with her and with us, and that's what has worked wonderfully well for us.

"CCS recently sent me and another parent to a 'One Person at a Time' conference in Melbourne. It was an important time for me and Steve as, after the conference, I began to expand my vision of the kids' futures, and began to dream big dreams for Mark. We were worried about what would happen when he was adult, or when we passed on. We had been thinking perhaps of him living in a flat attached to our house."

We approached our local service provider who worked with the Ministry of Health to establish a shared care contract for Mark.

Since shared care began there has been a big change in Mark's behaviour. This year he has only been in time-out at school three times - and not for violent behaviour. Right from the start, Mark has fitted into Sue's family's routines. There he has his own room, he is trying different foods, shares space and interacts positively with her children - like letting them choose the TV channel to watch. He is still quite controlling about routines at home, but he is developing the capacity to handle more flexible routines in a new place and is more relaxed at home too. His anxiety levels when routines are broken have gone down considerably. The week when Mark is not home means we can have time for Claire and focus on her, and on fun things that we cannot do as a family when Mark is there. There is much more space for spontaneous, noisy, different things.

The conference expanded my thinking to establishing circles of support now that lead him to an independent adult life - perhaps, with the right support, flatting with a non-disabled friend and in suitable work, earning an income independent of any benefits.

The conference focused on establishing new friendships, relationships and circles of support that encouraged young people to extend their contacts and slowly develop their independence. I wouldn't have believed it possible, but I have seen how Mark can progress through guided new experiences with Sue in his shared care. Mark has a non-disabled friend and I'm about to take him to some mainstreamed after-school classes.

He can travel on public transport now and is much more comfortable out in the community. Big first steps, and maybe the dream is too big, but I can see significant steps being made to reaching it.

We belong to a parents' support group through Mark's school and I am in contact with other parents of autistic children. I'm in a support network of about 20 families. We support each other, including in times of crises, and we share information. It can be frustrating for us to find out what services and support are available for us. It would be wonderful if we just had one good case manager to deal with all our issues as recommended in Professor Werry's report into Casey Albury Thompson's death.

"Shared care benefits us all, and it has made such a difference to our family that I will do all I can to lobby for shared care for families who have a child with very high needs."

CCS are marvellous but a number of us deal with another funded agency and are often reduced to tears and to feeling frustrated and incompetent as we try to work through the systems and bureaucracy. When each day is hard with your child this can just be too much and we all need support.

Shared care is wonderful for us. However, this arrangement has been in place for nearly nine months and Sue is still not being paid from Ministry of Health contract money. She is currently being paid using carer support days. A contract is nearly settled but we are very concerned that it is being funded by a discretionary grant. This gives us no stability or security that it will continue. I know that shared care will provide so much support for other families. The trouble is too many things are left until there is a crisis, when the support could be more useful and cost less if organisations can recognise when things are snowballing and put support in place so families don't reach crisis point.

If our family was offered residential respite care for Mark as an alternative, this would be much more expensive than shared care. It is important that Mark has the opportunity to live in a family environment rather than an institutional home with constantly changing, low-paid staff who often don't have the skills to work with these special children.

Unless you live our lives it may be hard to understand what a difference it has made to our family to have some time to function without Mark at home, for Steve and I to grow and re-establish the strengths of our relationship, for Claire to have quality time with us. Plus a time for Mark to try new things and begin to understand flexibility in an environment, other than home, where he feels safe and secure.