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TX: 14.10.04 - SON Rise

PRESENTER:ÌýPETER WHITE
THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.Ìý BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE 91Èȱ¬ CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

WHITE
One of the questions that parents with an autistic child are constantly asking themselves is - What can be done about it? Well this week as part of our month long investigation into the condition we're examining some of the interventions or treatments on offer and today we look at a programme from America called Son Rise. Parents are invited to a preliminary lecture, which is free, and they then pay up to £1300 to take part in a start-up session. Over five days they're taught the Son Rise methods - these involve building a relationship with the child and they centre around what's described as "the playroom" where parent and child are forced to relate to each other. It's a method which divides opinion straight down the middle.
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Tony Attrill and his son tried and rejected it. Dave and Jill Cuthbert have used the method for the past 18 months with their daughter Laura, who's now five.
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DAVE CUTHBERT
Non-distracting - that's the biggest issue for the playroom, not particularly just for your child but for you. Whilst you're in a playroom there's no phones to answer, no ironing to do, nothing to do, you're solely in there just for your child and when your time's up you come out. Your child will stay in there and another volunteer or somebody else will go in there with her. So there's no distractions for her, no distractions for you and you can solely do 100% and everything will be her and you.
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JILL CUTHBERT
Laura would scream lots and lots and would be trying to smash the door down - at one point she tried actually to get underneath the door, she tried to squeeze her hands under the door to try and get out. She would be swinging on the door handle, she'd be kicking it, bumping it and if you actually were nearby her you would obviously get yourself kicked and bumped. And she would run around the room when she's screaming because she wanted to get out - that was horrendous, that was awful. But the more it went on obviously then she began to realise it was a nice place to go and it was a fun place to go because that's what we made it into.
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DAVE CUTHBERT
It's accepting your child where they are and until you accept where your child is and being happy where your child is you're not going to get them any further. So if she's sitting in a shop screaming you've got to be happy that she's sitting there screaming, she's wanting that out of that reception from you, so she will do it even more. So it's really about accepting your child where they are, then you can start actually trying to push her further to where you want her to go.
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JILL CUTHBERT
In the early days in the first sort of 10, 12 weeks we spent our whole time just trying to get eye contact from her because she wouldn't look at us at all. She would do things like lining up her toys, filling her socks, licking mirrors, graffiti-ing walls and it was a repetitive thing that she did consistently. And we used to join in that behaviour and by doing the joining and by sort of working with her and doing her repetitive behaviour what you would then do is try to change that as time moved on. So it was kind of like a confidence and trust thing. So eventually she got to the point where she started to trust us, therefore she would look at us more. So most of our time really in the first part was just loving Laura for where she was and trying to get into her world. So it's kind of like a bridge - we're on one side, she's on the other - and we're crossing that bridge but we need to join her on the other side.
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TONY ATTRILL
It felt very much like it was an attempt at sort of a psychological brainwash, I have to say, it was a very peculiar experience. To give you an example of one of the more memorable mornings - we were sat down and told to write a letter to our autistic child whereupon the soft music came on and the people walking around with tissues came out and passed round the tissues as we were all basically encouraged to break down in tears.
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DAVE CUTHBERT
You don't go to the start-up and the Son Riser's standing there saying - We will cure your children. It's not about that - the start-up isn't about that - we will get these children all cured. The biggest part that they covered on for that week was that if your child stops where they are now how would you feel, if your child - work on your child and your child we guarantee will make some step forward, maybe they're not talking but they're looking at you and they're doing the interactive things. Their sort of option is if your child stops there you have to be happy with where your child is and that's the biggest thing that we found. So we walked away from there saying - we're going to give this our all, 110% we're going to put into this, but if she doesn't move you know what, so what.
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JILL CUTHBERT
If you are feeling and accepting your child where they are and you're happy with where they are, no matter what they're doing, however small that may be - whether she's looking at you for two minutes or looking at your for two seconds you've got to be happy with that - yeah oh that's great, she looked at me for that time. And by doing that and by accepting you then feel that you can make a difference, it's like they make you feel like you can make a difference. Believing in yourself and believing in your child and if you believe that you can make a difference to your child that will make you do anything. When we came away from there we actually believed that there was some chance here, if we gave it everything that we could and we believed in ourselves and her that we could maybe get her to the point where she could integrate and have a pretty much typical quality of life.
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TONY ATTRILL
I would have to say there was a degree of false hope in there. They're not promising they're going to cure your child but they're creating a mindset which allows you to easily believe that your child could be cured by going on this therapy. If you read the books and say you read the advertising literature you're led to believe that your child has a very reasonable chance of recovery, of being cured of autism. You can't cure children of autism, autism is an eminently treatable condition and indeed we've treated our child to the extent where as a layman you wouldn't really notice there was anything different about him, but you cannot cure the condition. We were very fortunate to have a child with the potential which was able to reach that level anyway and there are many, many other people who have done that course who will have got absolutely nowhere near.
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JILL CUTHBERT
There are some children that we know of that we would regard as cured because they are a fully functioning adult - met some of them - and some of them are also like you wouldn't know - if you say them you would not have any - well we actually know one child who actually had a re-diagnosis who said they no longer show autistic tendencies. So we've seen that letter in black and white, that's what really pushed us to do it. We're obviously - we're still doing our programme but the doctor's letter was very much she's ready for mainstream school, yes she is doing exceptionally well, she's come a long way to where she was in the early days but yes there's still a slight disorder with her language. So in that way I suppose yes we feel that she's pretty much a miracle based on where she was before and if we hadn't found out about Son Rise then she possibly wouldn't be here today in the position that she's in now, we might still be sitting there trying to get eye contact or she might not be speaking. We know of children that have been doing other things, other programmes or other particular ways of therapy within schools that still are not talking.
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WHITE
Jill and Dave Cuthbert, you also heard the views of Tony Attrill.
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Well Son Rise is being promoted here by Ron Kaufman. Now he describes himself as a recovered autistic. His parents developed the programme when he was a child. His extraordinary recovery is used in the promotional literature.
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KAUFMAN
Yes I am a fully recovered person and I am a person who travels around lecturing about the Son Rise programme. I see that as less of a statement of - look your child will turn out exactly like me - and more of a statement of - you may have gotten a lot of messages about all the things your child would never be able to accomplish, I'm here as a message of hope saying that even though your child's three or four or five and you've been told 20 or 30 things that they're never going to be able to accomplish, I'm here to say that that's not the end all, that it is possible for your child to make progress and to move forward.
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WHITE
This does then depend quite a lot on how well the parents take your message on board and how well they actually implement the programme.
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KAUFMAN
We do, without apology, make parents the centrepiece of the programme - we teach them all the skills that we feel that they need to learn. In addition to teaching them all this we don't expect them to do the whole thing by themselves. Most parents do ongoing work with us where they send in videos that we watch and give them feedback on, where we go to their house and give them feedback, where they take more advanced programmes like the intensive where they come with their child.
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WHITE
It's quite a tough programme, in fact it's a very tough programme, isn't it both for parents and children - seven hours a day work in one room where distractions are removed as much as possible. Are you totally happy with that - first of all from the point of view of the child?
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KAUFMAN
Some parents do do it seven or eight hours a day, a huge proportion of parents do not do it seven or eight hours a day, they fit around their child's school life, the whole programme is child centred, the whole reason why we have the playroom, why we join children in their behaviours instead of forcing them to conform to a world that they don't yet understand, why we don't do any physical coercion with children, the whole reason we do that is out of respect for children and to create a real sense of bonding and trust between us and the children and between parents and their children.
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WHITE
And from the point of view of the parents - I mean you're asking an enormous amount of commitment, I mean even 20 hours a week is a long time, you're asking really parents to turn themselves into teachers.
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KAUFMAN
Without question it is a lot of hard work, we don't pretend that it's easy, we don't pretend that it's not a lot of effort because of course it is but keep in mind that any parent that's coming to us has a child on the autism spectrum or with another developmental difficulty, that's already a lot of work and we believe that a concentrated burst of effort for two or three or four years is actually much more beneficial than having the next 30 years be ongoing effort or having to put your child in a home or something like that.
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WHITE
Do you have ways of measuring your success? I mean clearly you do talk to people who've been to your lectures, who've been on the courses, but I mean do you have statistical evidence to show the results you get?
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KAUFMAN
I tell you that is probably the number one thing for me that I would like to have that we don't yet have. If you say that statistics are important for credibility I would only have to completely agree with you. Do we keep specific track of each child and do we teach parents how to do that? Absolutely, we keep very specific track of each child. But do we have a statistical analysis? That we don't because right now we're a non-profit organisation just devoted to helping parents.
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WHITE
You say you're non-profiting making but there is a cost to this, I think people pay - is it up to £1300 or perhaps in some cases their local authorities pay that where they can persuade them to do so for the course. So is that money simply ploughed back into the schemes?
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KAUFMAN
Look we charge about 80% of what it costs to operate our organisation, so we actually don't even charge what it would really cost us to operate. What ends up happening is that 20% that's left over is filled through donations and then we do have some additional donations that go just for financial aid to parents who don't have the financial means to attend this programme. I've personally never met a parent who simply couldn't do the programme just on financial needs alone.
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WHITE
And parents are very vulnerable aren't they - parents of children in this situation and they will try anything. Are you conscious of the huge responsibility - people will be hooked into this kind of thing and they will try it and they'll want it to work?
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KAUFMAN
Well one of the things I say in my lectures is - go home, this lecture didn't cost you anything, you haven't paid us a dime, go home and try these things with your child, see what happens with your child, if you feel like these are helpful and are making a difference in your life and in your child's life, great, then look more into it, if you don't then try something else.
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WHITE
Ron Kauman. And remember if you've had experience of Son Rise we'd still like to hear your views, you can e-mail us or write to us or phone.

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