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Life after autism
At eighteen months old Raun Kaufman was diagnosed with severe autism.
Today, almost 40 years later, he travels the world teaching parents and
professionals about a unique approach to autism treatment, which, he says,
led to his complete recovery. It is a statement highly charged with controversy.
Parental Eye spoke to him.
Autism and the related Asperger syndrome - together known as autism spectrum
disorders - are lifelong conditions that affect around 500,000 families
in the UK. The characteristic traits include difficulty in social relationships
and communicating, and limitations in imaginative and creative play. Children
with autism, says the National Autism Society (NAS), grow up to be adults
with autism.
'Currently there is no known cure for autism and many therapies have been
developed and many competing claims made for their effectiveness,' said
Carol Povey, NAS Regional coordinator for London. 'The outcome of any approach
will depend on the needs of the individual with autism, which vary greatly,
and the appropriate application of the therapy.
'As the nature of autism is so complex, a therapy that may help one person
may not be effective for another. Few interventions have been independently
or scientifically evaluated, so it would therefore not be appropriate for
the NAS to recommend any one particular practice.'
'A lot of the time someone will ask me aren't I concerned about giving
parents false hope by saying I "recovered from autism",' Raun
told Parental Eye Magazine. 'I don't blame them; it's politically charged
and almost suggests some magic formula. But I am fully recovered; I don't
have anything about me now that is of autism. Also, we have worked with
thousands of other children, some of whom have fully recovered, some who
have shown improvement. Individuals respond differently.
'I write about this a lot. It's a big issue. I don't think there is such
a thing as false hope - the only way parents are able to help children
is if they have hope. It is not a promise but a possibility: I believe
my child could move forward so I make the effort.'
His last three lecture tours attracted around 4,000 parents and professionals
in 15 cities throughout Britain. This autumn Raun is making his fourth
trip to the UK for a series of talks on the Son-Rise Program, the innovative
approach developed by his parents, authors/teachers Samahria and Barry
Neil Kaufman after they refused to accept the diagnosis that their 'severely
retarded' son had little chance of any progress beyond learning to feed
and dress himself.
The programme's home-based, child-centred methodology transformed Raun
from a mute, withdrawn child with a tested I.Q. of less than 30, into an
outgoing, sociable boy with a near-genius I.Q.
Raun went on to graduate from the Ivy League Brown University with a degree
in Biomedical Ethics. Today, he works at the Autism Treatment Center of
America as a writer, teacher and speaker on the Son-Rise Program.
Raun has spoken about his experience in numerous print, radio and television
interviews and has contributed to several journals on the topic. These
include ‘Building the Bridge: Strategies for Reaching Our Children’,
published in the first international edition of Good Autism Practice Journal.
He wrote ‘From Autism to Recovery’ for the British Autism File,
and ‘The Journey Out of Autism’ for Autism/Asperger's Digest.
He has also written about his experience in the essay ‘Unchain Your
Dreams’ in the book Silver Linings: Triumphs of the Chronically Ill
and Physically Challenged, edited by Shaena Engle. Raun's story was recounted
by his father, Barry, in the best-selling book Son-Rise: The Miracle Continues
and was also the subject of an award-winning NBC television movie Son-Rise:
A Miracle of Love.
The Autism Treatment Center of America has been running the Son-Rise Program
since 1983. Its unconventional approach to treatment employs a modality
that includes 'joining children' by entering their world. It also places
parents as key teachers, therapists and directors of their own programmes,
utilising home as the most nurturing environment in which to help their
children.
Raun points out: 'The overall idea of programme comes from the belief
that children show us the way in and we show them the way out. Lots of
traditional modes of helping focus only on the second half of this: getting
them to act normal and controlling behaviour. Autism is not behavioural
disorder but a relational one of which behaviour is a symptom.'
He continues: 'One mother on the Start Up Program was trying to get her
son to use toilet for six months. We discovered his motivation was that
he liked stairs, but his mother could not see how that could be helpful.
We had her go home, get a stool with three steps and for the first day
just to play with him on the stool. The second day she put the stool in
the bathroom, pushed it up against the toilet and had her son climb up
on it. It took her two and half days to train him to use the toilet. The
reason wasn't about magic; he was capable of using the toilet but just
wasn't interested enough to do it.'
However controversial, parents who have taken part in the Son-Rise Program
have reported improvements in many of the symptoms associated with autism
spectrum disorders, such as speech and language development, poor eye contact,
tantrums and repetitive behaviour.
UK Medical research acknowledges a shortfall in research into the causes
and treatment of the condition with the row over possible links to the
MMR jab overshadowing much of this. Earlier this year the Institute of
Child Health, National Autistic Society and the Parents' Autism Campaign
for Education jointly published a study showing that the UK seriously lags
behind other countries when it comes to research into autism.
The UK holds only 16 per cent of the world's active autism researchers
in comparison to America's 53 per cent and Europe's 22 per cent. And whilst
almost 60 per cent of UK autism research looks only at symptoms, just 22
per cent is dedicated to its causes and a measly 8 per cent to possible
interventions.
'Whether parents or professionals, we are systematically taught over and
over to view our children on the autism spectrum as hopeless, tragic and
lost for life,' says Raun. 'When I meet parents I get a range of responses
from disbelief to amazement, to gratitude. I think when I get the action
of "Oh my gosh" - the borderline disbelief, I believe that is
because so many have been told recovery and progress isn't possible for
these children.
'In fact, it was precisely my parents' willingness to see hope where others
saw none that enabled them to develop the Son-Rise Program.'
Further information
Parents can get general advice and support from The National Autistic
Society (NAS) Autism Helpline on 0845 070 4004. Visit their website at
www.nas.org.uk
Breakthrough Strategies for Autism Spectrum Disorders lecture by Raun
K. Kaufman. During his national tour Raun will be talking about his experience
as a person 'recovered' from autism.
Dates:
21 September: Birmingham University, The Great Hall, 7-9:30pm
25 September: Weston Conference Centre, Weston Theatre, Manchester,
1-3:30pm
28 September: Bristol University, Tyndall Theatre, Bristol, 7-9:30pm
1 October: Queen Mary College, Skeel Lecture Hall, London, 7-9:30pm
2 October: Queen Mary College, Skeel Lecture Hall, London, 1-3:30pm
To reserve seats go to: www.son-rise.org or call 001.413.229.2100. Alternatively
email: Glenna Klein at glenna@option.org
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