Thursday, 3 March 2011

Meeting the Billy Graham of Autism*

I'm sitting in a packed, airy lecture theatre, waiting for motivational speaker and erstwhile autistic Raun Kaufman to appear.

The atmosphere is fidgety- it feels like we're waiting for a gig at the Roundhouse, rather than in this large school room in the middle of Regent's Park.

Having forgotten how quick early London traffic is at weekends, I've arrived early and enjoyed a quite cappuccino at the modernist park cafe.

Septuagenarians perform Tai Chi- I like this and a family of five park their bikes outside the window.

Watching them, I ask myself the question often on my mind, usually suppressed 'What if?' What if I had a normal family instead of sitting here waiting to spend my Saturday like this? What if we could go cycling together without somebody going kamikaze straight into the road?

But I stop myself, this is my life. This is our normal.

Cheery banners 'Cure Autism!!!', signpost the way to the lecture theatre and I feel my eyes well up- I, like so many other parents so wish there was a cure.

It's a crisp winter day and the huge, ecclesiastical windows around the room remind me of Larkin's High Windows.

Rather than words comes the thought of high windows:
The sun-comprehending glass,
And beyond it, the deep blue air, that shows
Nothing, and is nowhere, and is endless.


Then I stifle a grin as I think of the rude bits at the beginning of the poem.

For the uninitiated, Raun Kaufmann was diagnosed with autism as a young child and his mother cured him of autism through a self-devised intensive interaction programme that they later named 'Son Rise'.

He is an engaging speaker and far less evangelical than I'd expected.

Son-Rise is essentially a behavioural therapy, where the parent/ therapist tries to enter the child's world and bring the child into their world.

As a therapy, I think it has a lot of things to recommend it. I used the 'mirroring' technique on Lyla when I got home. After looking at my quizzically asking 'why are you copying me' she got into the spirit of it and said it was the best play session ever.

Like many autism treatments, the Son-Rise programme has it's detractors. There's controversy over Kaufman's 'recovery' and what some see as their hard-sell methods.

I have to say that although there were very serious-looking, besuited people hovering around the auditorium with clipboards, Kaufman himself was very likeable and when I met him afterwards and did seem to genuinely want to help people with autism.

One of the before & after videos showed a 'severely autistic' child. To me, the child seemed less autistic than Lyla, who is not severe,  and was in the middle of a tantrum. The after video showed him smiling.

This is very much short of proving that Son-Rise cures autism, but if it led to an improvement in this little boy's mood, then that has to be a good thing.

The Son-Rise programme is eye-wateringly expensive, especially if you want to visit Son-Rise-Ville in Massachussets, USA and certainly out of reach for us and most people.

If you like the Son Rise approach, there's some useful and more importantly, free information that you can access on their website.



*I've just realised that some of you who are not in the same (middle) age-bracket as me might not know who Billy Graham is: he's an American evangelist who was very prolific in the 60's & 70's. Writing that makes me realise that that was actually quite a long time ago!

9 comments:

  1. I've worked on a Son-rise programme (not for BB) and whilst I loved the mirroring, getting into their world, joining their experiences bit of it, it seems to be accompanied by what appeared to me quite a 'hard sell'. The contact I did have with Son Rise staff left me full of doubts about the approach (the staff themselves were excellent, no criticism of them personally).
    My personal feeling is that the good bits of Son Rise can be got at a fraction of the cost by using Intensive Interaction, which also relies on joining, mirroring etc but with a more realistic idea of what might be achieved.
    Having said all that, this is only my personal view. I think Son Rise is one of those things that can't do any harm and may do some good if the child and parent enjoy it. Do check out Intensive Interaction too. I've got a couple of Phoebe Caldwell's books and loved them.

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  2. Dear Rachel,

    sounds like this was almost a bit of key time for yourself too on that day. I like the idea of this programme but wonder at the time it takes, the energy and other costs. It's such a committed dedication. Would love to do more, but wish there was more of me too . . . .

    You are doing so well (as I always say) and learning so much. I often wonder if I had no financial constraints at all, what would I do and try to imagine where my energies would go.

    Looking forward to our photoshoot and I love your pics here :)

    Amelia.x

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  3. @bbsmum- I'm with you about Son-Rise, I do like the gentler approcah of the techniques (we had a nightmare with ABA), but don't like the hardsell.

    Thanks for the recommendation, I've looked at the Phoebe Caldwell books on amazon and it seems like they cover sensory integration too, which is right up our street. :)

    @amelia Hey love- yes, we can overinvest both financially and emotionally in therapies and treatments, if we do too much emotionally we end up washed up and burnt out and financially we end up broke! :)

    x

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  4. A neighbour of mine did the full Son-rise programme with her son with aspergers....and I saw the rapid change from a silent unresponsive 2 year old to a chatty 5 year old in mainstream education. But she literally gave up her life to the programme for 3 years, spent most of it in a special plain room with her son. Not everyone can do that.

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  5. Hi Rachel

    Obviously you know our situation and our on going fight for a cure for cf. It's so hard and overwhelming at times. As parents we would do anything, absolutely anything for our kids. I do think sometimes though that our kids wouldn't be the wonderful people they are without their life experiences no matter how traumatic they may have been at times.

    What's normal anyway eh?

    Sounds like a very interesting talk though, you can take what you choose from it, but in the end as a parent you have to hope, as without that the option is to give up.

    I feel I know you well enough to know that that isn't an option for you :)

    Great post by the way.

    Thank you for your lovely comments over on our blog, I always love to read what you have to say :)

    Take care and don't be a stranger :) xx

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  6. I've tagged you for a meme - pop over to my blog if you have time :)

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  7. There is no cure for autism. Someone who has autism will always have autism. They may learn to cope with it, they may even learn to hide it, but they will never be cured.

    As parents we so wish this weren't the case and that miraculously, a cure could be found. The only way someone will cure my epilepsy is if they remove my head and replace it with another. It isn't going to happen. Nor is it going to happen with my daughter's autism.

    My daughter is autistic. Autism is a part of who she is.

    CJ xx

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  8. As someone who hasn't come into contact with autism much, I didn't even know that these kind of programmes exist. I think I would try everything just to be able to understand my child better. Good luck! xx

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  9. Hello, just come over and found your blog from the Mad Blog awards. Have looked at a few earlier posts already and can't wait to catch up on the rest! Life with autism can be no fun at times... my little girl has been screaming for her dummy for the last 30 minutes - even though we gave them up at Christmas and there are none in the house :(

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