By Catherine Elelman
first published in issue 39 (April/May 2008) Levante Lifestyle magazine

Gill and Dave Cuthbert “cured” their daughter of autism.
Defying the doom and gloom prognosis of doctors, they rejected the idea it would be impossible for Laura to have a normal life, and five years after she was diagnosed as autistic, Laura Cuthbert is a bubbly, gregarious, ‘ordinary’ nine-year old.
The causes of autism are unclear, and the term covers a large “spectrum” of conditions, but the widely accepted thinking on the cure is that there isn’t one. Certainly before I met Gill and Dave I’d assumed having an autistic child simply meant having to ‘learn to live with it’, however complicated and demanding that was.
This month Gill tells the story of how Laura successfully overcame her problems. Much of the credit goes to the Autism Treatment Center of America and its groundbreaking Son-Rise Program, developed over 30 years ago by Barry Neil and Samahria Kaufman when they discovered their son Raun was severely autistic. Just as important was the Cuthberts’ determination and perseverance: a pure illustration of their unconditional love for their child.

What are the main characteristics of autism?
Autistic people effectively shut themselves down from the world.
Most autistic children have lower than typical levels of eye contact, have dietary problems, and tend to be delayed in their language acquisition, or if they have a good level of language they tend to talk about just a couple of things or talk in a monologue, without allowing anyone else to speak. They also tend to have some kind of repetitive behaviour, or in some cases exclusive behaviours, which means they completely withdrawn from people and the outside world.

When were you first aware that Laura could be autistic?
Up until 12 months Laura did everything a normal baby should do. At one year she could say certain words, but then her language started to go. That gave us the first inkling that something wasn’t quite right.

How concerned were you at this stage?
Obviously every child’s different, but we have two older children so we knew roughly where her development should be.
We put her into speech and language therapy because she wasn’t talking. She also began doing strange things, like screaming if a stranger stopped to speak to her. But although we were concerned, we thought we were just being paranoid, that she was just a bit of a late developer and would be fine.
Then at 15 months her behaviour pattern changed dramatically. She’d throw everything, she wouldn’t eat, she wouldn’t put clothes on, she stopped talking completely, she wouldn’t look at me; she didn’t even know who I was. By the age of 18 months it was like she had completely shut herself down.

Did you seek professional help?
We took her to a paediatrician who suggested she might have verbal dyspraxia: that her tongue was twisted and she couldn’t get words out. I said she was totally unruly, but she said it was because she was frustrated because she couldn’t speak.
I also took her to a behaviour clinic, where I was told she just had a few issues because she couldn’t speak, to keep on with the language therapy and she’d come through in the end.
I was still really concerned, and felt no one was really helping. Her behaviour got worse and worse. One of the things she did was empty all the drawers, toy boxes and wardrobe in her bedroom, then put everything back, then empty them again, and so on. She also had this incredible strength and she’d pick up anything in her path, and she was obsessive about everything. The worst one for me was that she refused to put on clothes. It took me two hours to dress her, and then she would undress.
This went on until she was three when it just got ridiculous. She was biting me, she was biting my sons Matthew and Mark, she was hitting, she was harming herself, and didn’t really know who we were. It was horrendous.
It got to the point where I was becoming really depressed and felt I couldn’t carry on as it was. I couldn’t do anything, I couldn’t go anywhere, I couldn’t do any activities with the boys. It was very stressful and we didn’t really know how to help. We felt really useless, and the doctors were giving us nothing; nobody seemed to know what was wrong with her.

When was Laura’s autism diagnosed?
Someone I knew worked for a unit for autistic children, and hinted that could be what was wrong with Laura. I said I didn’t know what to do with my daughter and I needed her tested. She discovered she was on about the middle of the autistic disorder spectrum.

What assistance and treatment was suggested for Laura?
The paediatrician referred me to a programme which was to help me ‘come to terms’ with Laura’s autism. When I asked what we could do to help my daughter she said she couldn’t tell me where Laura would be in the future and advised me to focus on my other children!
I didn’t know how to react: I was in shock. I had a little girl who had a problem and I’d gone to find out what we could do about it, and I was walking out with a little girl who I’d been told would not have a normal life, who would have to be put in care for the rest of her life!
The speech and language therapist mentioned a centre in the US, but she wouldn’t recommend it because it was very expensive and the local authority wouldn’t sponsor it. I didn’t even think to investigate it at that time. She said the only thing we could do was get a Statement of Special Educational Need from our local authority to qualify Laura for a disability allowance.

What effects did Laura’s behaviour at this time have on your life?
I worked for a recruitment agency in quite a demanding job. I used to leave Laura with a friend who’s a child minder, but she couldn’t cope with her. I couldn’t put her with anybody.
Dave had a very high pressure job, so he couldn’t be around all the time, plus we needed his income. I had to give up work because the bigger she grew the more difficult it got.
By the time she got to two and a half I was embarrassed to go out with her because she’d kick and thump me. Or I’d be going round the supermarket and the whole time she’d be lying on the floor or whacking things off the shelves.
I had to keep an eye on her 24/7, and by the time she was three I couldn’t take her anywhere. Dave or my mother-in-law would take turns looking after her at the weekends so I could go out and do things. But looking back I don’t know how I coped. Everything was a challenge. It was very stressful.

You sons are older than Laura. Were they affected by her problems?
When her behaviour first changed the boys were at school a lot of the time, but they would ask why she did certain things and say they were a bit strange.
It was very difficult for me to be able to play with them. We couldn’t do things together and we became a completely disjointed family.

How did you find out about the Autism Treatment Center of America and the Son-Rise Program?
The mother of one of Matthew’s friends has an autistic son. I’d had no idea he was autistic until she told me, although in fact he had Asperger’s Syndrome, which is right at the top of the autism scale. They’d followed the Son-Rise Program, and clearly it had worked.
She explained it didn’t have to cost a lot of money. I read the information and watched the film “A Miracle of Love” based on the story of Raun and Son-Rise, and a BBC documentary about a little autistic boy who’d gone to the US and done Son-Rise, and how they’d made such a difference in his life.
I spoke to parents who’d done the programme and I met their children, and they all looked normal. They didn’t have any of the behaviour that Laura had, and I was thinking we can do something, we can change it.

You and Dave attended a Son-Rise start up course. What were your first impressions?
For the first two days it all sounded a bit strange, and very American. But I realised they were talking a lot of common sense.
They said we, the parents, had to change the way we saw life. They talked about being non-judgmental and not getting angry about situations we couldn’t change, but moving on and sorting out the problems. What they were really doing was teaching us how to respond to difficulties, and how to deal with ourselves before moving the emphasis on to the child.
They told us not to use our energy on worrying about the causes of autism – nobody really knows what does cause it. They said we had to accept our child is autistic, that you can’t separate the child from their autism, and your child is a gift.
The parents are the key, and the key is to understand and use that with your child. The focus should be on trying to make a difference to autistic children by changing certain behaviours and helping them to develop.
Son-Rise teaches you not to have a big reaction every time your child does something we regard as ‘naughty’ or unruly, because a big reaction will make an autistic child do it again. You try to be part of their world rather than try to make them part of yours because they don’t understand our world; they’re in their own place. You encourage and teach them by understanding.

What techniques did you learn from Son-Rise to help Laura?
Laura used to lick mirrors over and over again, so I’d lick mirrors with her and join her. But I would try and catch her eye in the mirror. At first she’d look at me with one eye, and I’d say “Wow, you looked at me!” When she looked away and started licking the mirror again I didn’t say anything. Eventually she would look at me with both eyes, and I’d show her I was really excited.
She looked at me more and more, and this gave me a window of opportunity to teach her things while looking in the mirror, such as smiling means you’re happy and other upbeat expressions. From this I was able to teach her other things, like words. It was like going back to teaching a baby, because she would point at things, and I’d say the word, and eventually she would try to say the word.
We had a space set aside for Laura with no distractions. The room had just a mirror and books and basic toys we thought she was ready for, such as building blocks. But she couldn’t just have them. She had to try and communicate, to begin with just by indicating, and then if she made a sound or eventually tried to say the word, we made a really big fuss of her, and we’d say the word over and over again, and then we’d give her what she wanted.
She learnt the more she communicated the quicker she got things. If she didn’t communicate or just pointed I would take ages to give them to her, asking her over and over what she wanted. When she actually tried to say the word for what she wanted I’d move so fast, and I’d become very excited.

You did the programme with Laura for three and a half years. This must have required enormous patience, energy and determination?
It was full-time, and it was exhausting. But I looked at the future, and I wanted to do it. If I had to sacrifice or give up a couple of years of my life and go without and put my whole self into giving her what she needed, then I’d do it. If it didn’t work I hadn’t lost anything, but if I could make even a little bit of difference to her life, then it was worth it.
It was time-consuming, but I could see the progress. After six months she knew who I was, and that’s when I knew it was really worth working at the programme.
Son-Rise suggests you get volunteers to help you work with your child. So to begin with it was just me, but I advertised in the local paper and got eight people from all walks of life, such as a hospital receptionist and a trainee teacher, and they gave as many hours a week as they could.
I also involved the boys in Laura’s programme. They sat in her playroom and worked with her, and helped change. To this day the boys are very proud of that, and what’s lovely is that now they have typical brother-sister relationships.

Did you family support you in your decision to try the Son-Rise Program given the sacrifices it involved?
I had a lot of opposition. Lots of people said they thought I was crazy, that it was a waste of time. They had an impression of Son-Rise of being like some kind of American cult, and that all it was doing was teaching me how to play with my child.

How much contact did you have with Son-Rise during the time you did the programme?
The amount of contact is up to you. I had three outreaches, which meant Sean from Son-Rise’s Autism Center of America came to our house and observed Laura, which we paid for, and I did additional training on a follow on programme at the centre.
A lot of parents taken their children to the centre, but I didn’t think Laura needed that. She may have moved quicker, but getting her there and then back home again after she’d got used to all those people didn’t seem the best thing. Also it would have been very expensive.
Son-Rise is of course a big institution to fund. They have to train and pay for the teachers, visit the children, and so on, so they can’t do it free.

Did your local authority offer any financial assistance for doing the Son-Rise Program with Laura?
My local authority had as part of its special needs pack funding for something called “home programmes”, which included two or three programmes for children with autism. One involved using pictures for the child to tell you what they want rather than communicate verbally, which they say there are statistics to prove it works. I thought Son-Rise could be included in that, but there is no statistical evidence to absolutely prove the programme works, so the local authority said no.
We had to go to appeal. I pointed out that using Son-Rise I could make my daughter able to fit into society, and that it would save the authority money because they wouldn’t have to pay for special school care provision and care facilities, and she wouldn’t be a burden on the state all her life.
Fortunately the person we’d dealt with at the local council believed in us, and the authority gave us half the money we needed. Because we were successful, this local authority has now funded other children doing Son-Rise and spoken to other authorities, and I believe some have also funded children in their areas.

Did Son-Rise “cure” Laura?
In my opinion Laura was cured after three and a half years of following the Son-Rise programme. I had her retested in England, and she flew through all the tests.
By that time she was in a mainstream nursery. After three months Sean came over and observed her in the nursery and said it was incredible: she had friends, she listened to the teacher, she took part in the activities – she did all the things she hadn’t been able to do.
So we applied to a mainstream school, who observed her in the nursery. They accepted her, with a support teacher part-time because the authorities were insistent she had somebody, but the school actually gave her an award for being the best behaved student in the class!
She didn’t have problems with social interaction and personal skills, although she was a bit behind academically because we hadn’t focused on that. But they said she asked lots of questions, that she was very inquisitive, and that she was good at talking about things.

You and Dave became‘ambassadors’ for Son-Rise, speaking about the programme and how it’s worked for Laura on in the British national media. How did that come about?
Every year Raun, who is now CEO of the Autism Treatment Center of America, goes to the UK and gives free lectures to explain what Son-Rise is and how it works, giving interviews to raise awareness. Son-Rise would ask us to do interviews as a family which had successfully followed the programme, and between that we did lots of interviews with magazines.
We did the Richard & Judy Show. They spent a day at our house interviewing Dave and I, and then we did a live interview on the show along with Raun. We also did Sky News, for which they used a piece of footage showing the difference between a child who has shut down and Laura who could attend a mainstream school. And Radio 4 did an interview with us in 2004

The family has been living in Spain for the last two years, and Laura will be nine in September. How did Laura cope with moving to a different country, and what is she like now?
I was worried the transition from England to Spain would put her back, but she’s adapted well.
She goes to a Spanish school, and has private Spanish lessons to help her. It was hard coping with another language to begin with, and she gets a bit uncomfortable speaking Spanish, but then she didn’t speak English until three and a half years ago.
As far as fitting in and making friends, she’s been fine. People who meet her now can’t believe she was autistic. Laura now has her own personality. She’s bright, she’s funny, she’s very sociable, and she’s got the most amazing imagination, so she can also be happily self-contained.

Is there the possibility Laura will ‘relapse’ into autistic behaviour?
A lot of people have asked me that question, and they ask Son-Rise. Son-Rise will always say we don’t know.

Does the Son-Rise Progam work for all autism cases?
Each child progresses at different rates. I know some families have really struggled to get there very quickly, or due to their circumstances they can’t dedicate all their time to the programme.
But lots of children who do Son-Rise are walking miracles. Raun became a typical teenager, went to university and ran his own film promotion business, before devoting himself full-time to Son-Rise and the Autism Treatment Center of America.
Also Son-Rise works for any age group. Obviously they have different strategies for adults, and they may not be able to ‘cure’ adults, but they can make a difference and make their lives more fulfilling.

You are organising an opportunity in this area to find out about Son-Rise first-hand through seminars aimed at parents with autistic children and teachers or health professionals who work with autism cases.
Sean Fitzgerald, a Certified Son-Rise Progam Teacher from the US centre, is coming to the Levante area on the 6th, 7th and 8th of June to explain all about Son-Rise and how it works. He’s also going to do sessions focusing on activities like role-play to act out situations with children so participants can learn how to use the techniques.
The seminars will be in English, with Spanish translations via headphones.

You are also planning to get businesses involved in giving autistic children in this area the chance to benefit from Son-Rise.
I aim to encourage a company or a group of companies to sponsor a child, which means parents can attend the June seminars for free. The company could then use updates on the child’s progression in their marketing material.
Our own company, DCGC Options, is going to sponsor five children, which means we are giving 1,500 euros.

How would you sum up what Son-Rise has meant for Laura and for your family?
Apart from helping Laura, we are an entirely different family from what we would have been. We are a real family, but not only that, people have commented on how well behaved the children are.
Son-Rise has sincerely changed me and Dave. We were both very career minded, rather selfish, and when this happened with Laura it made us think there was more to life than earning lots of money and material things. It changed our concept of life, and what makes you really happy.
Yes I worked hard, but it was worth every second to see Laura now. Considering where she’s come from, she is the most loving, confident, happy, caring child. Whatever she achieves with her life is going to be amazing, and I believe because we’ve invested so much time in her she is going to be the most successful person.
Because of the incredible things Son-Rise did for Laura, the fact she’s a walking miracle, I’ve always wanted to give something back, and that’s why we’re organising the seminars and sponsoring five children. We want to provide another family with the chance to take that journey and arrive where we are now.

For more information about the seminars or sponsoring a child contract Gill at DCGC Options: 950 472 837, info@dcgcoptions.com, or mobile: 669 563 981.
For more information about the Autism Center of America and the Son-Rise Progam: www.autismtreatmentcenter.org or www.son-rise.org or www.autismtreatment.org
For more on Laura’s story, search “Laura Cuthbert” on the Internet.