In search of a cure for autism
From Independent- UK, Newspaper at following link:-
http://news.independent.co.uk/uk/health_medical/story.jsp?story=547162
Parents spend thousands on therapies that claim to help autistic children
live normal lives, but most of them are unproven. Now doctors aim to find
out what really works
By Jane Feinmann
02 August 2004
When Tim was diagnosed with autism five years ago, his parents were told he
would be unlikely to speak or make relationships. Now aged seven and doing
well in mainstream primary school, he and his family are moving to a new
town and a fresh start. His mother, Andrea, believes that only other
people's memories of his autistic past will hamper his future as a normally
developing child.
His advances have occurred as a result of working with an intensive
educational intervention programme - paid for by his local educational
authority but unproven as a clinical intervention. And in the field of
autism therapy, it is not unique in this respect.
Of the hundreds of remedies and interventions on offer to the half-million
people with autism, of whom 100,000 are children, virtually none has been
subjected to the stringent scientific evaluation required throughout the
rest of health care.
"Evidence-based practice has passed autism by," says Richard Mills, the
research director at the National Autistic Society (NAS). "Only eight per
cent of the research budget spent on the disorder is spent on interventions.
As a result, there is no reliable guidance available to desperate parents.
Doctors are just as much in the dark as parents and often less wise because
they think they know all the answers."
Inevitably, parents turn to the internet for help and the pressure to make
the right choices can be overwhelming. There are a dozen or more intensive
educational programmes for young children, of the type that have helped Tim.
There are flash cards and behavioural therapies, diets that restrict what
the child eats or add expensive supplements, not to mention opportunities to
swim with dolphins. Drugs are equally under-investigated. Seven out of 10
children with autism are taking prescription drugs, including ritalin,
SSRIs, major tranquillisers and anti-psychotics, none of which has been
tested for people with autism or adequately studied in children. "Most
parents start by believing that the disorder can be cured and throw
themselves into researching therapies," says Andrea Spinks, the mother of
eight-year-old, severely autistic Emily. "The paediatrician who diagnosed
Emily gave us no advice whatsoever. So every time you hear of something new,
you get terrified that you're missing the one therapy that will make all the
difference."
Such pressures can prove expensive. Patrick Armstrong's parents have spent
£45,000 in the two years since he was diagnosed with autism at the age of
two - a substantial amount of which was not money well spent. Beverley
Armstrong paid £3,000 to a "verbal behaviour consultant", who taught Patrick
sign language and then left without giving notice. Another £1,000 went on a
workshop that would have "taught Patrick as though he was a robot". And £250
went on an hour's telephone consultation with a nutritionist "who basically
told me to make sure he ate his vegetables".
At last, however, change is on the way. The Autism Intervention Research
Trust was set up last month to fund research both to "halt the exploitation
and the wasted time and money on inappropriate methods of treatment" and to
find out what works.
"Good advice, based on impartial scientific evaluation, is very hard for
parents and many professionals to find," the Trust's chairman, Geoffrey
Maddell, said at its launch. "Yet without effective and timely intervention,
the consequences for the individual and the family can be devastating" -
implying what many parents believe that, never mind the cause of autism, far
more can be done to improve the life skills of children who have to live
with the disorder.
The Trust, which has the support of leading international academics and will
draw funding from the Government and the research bodies, has already begun
work by drawing up a list of priorities, based on a survey carried out among
the NAS membership. The initial task will be to provide doctors, and
eventually parents, with a website that gives detailed information about the
latest advances and methods of intervention, including claims that are being
made about each therapy and how those claims stand up to scientific
evaluation.
Parents are most keen to get an assessment of biomedical interventions,
particularly diets and vitamin supplements - which are likely to be among
the first candidates for evaluation. More tricky will be an assessment of
the early intervention programmes, which appear to promise the greatest
benefit and, at up to £40,000 a year per child, are by far the most
expensive - not least, says Mills, because the wide autistic spectrum means
that what works for one child will not necessarily help another.
What research there is, and almost none is independent, suggests that at
least some children with autism can make massive strides forward. In 1987,
the University of California Los Angeles psychologist, Ivar Lovaas,
published the results of a (subsequently hugely successful) intensive early
intervention programme, teaching cognitive skills to children under four
years of age - reporting that 47 per cent of the children were successfully
mainstreamed.
Since then, other early intervention programmes such as the Son-Rise
programme, TEACCH and Growing Minds (which helped Tim) have become widely
used on both sides of Atlantic. Beverley Armstrong has also found Growing
Minds transformational - though she acknowledges that it takes up
considerable time and money. "It's all about joining with the child to
encourage him to relate to other people. You follow their lead, so that when
he flaps his arms, you flap your arms."
Patrick is taught at home with a rota of up to four tutors at a time, with
Beverley planning the programme, video taping lesson and regularly visiting
the headquarters in the USA, "something I find essential to keep motivated".
But it's worthwhile, she says - Patrick attends a mainstream playgroup, uses
single words and has near-normal eye contact with people he meets. "He is
still delayed developmentally but his progress has been astounding. He is as
bright as a button and ready for mainstream primary school next year," she
says. She is also trying to raise £7,000 to pay for a week's intensive
training for Patrick in the US.
Another successful programme, PECS (Picture Exchange Communication System),
which encourages children with autism to exploit their often highly
developed visual senses, has helped Emily Spinks. Three months ago, she
started producing animated stories that are already provoking interest in
the art world. "Suddenly, there's this feeling: Em's got something. After
all the work for such little reward, suddenly a door has opened," says her
mother.
Yet there is also deep concern about the "umpteen complaints" that the NAS
receives from parents who have invested heavily in their children's future
and been disappointed. There's also recognition that the programmes are both
very expensive and under-assessed, not least as regards their long-term
impact.
"Take, for instance, the fact that at two weeks, a normally developing baby
is aware of its mother's emotions. Yet that is something that will always
remain a problem for someone with autism," says Ofer Golan, a research
coordinator at Cambridge University's Autism Research Centre who uses the
centre's Mind Reading programme (Jessica Kingsley Publishers) to help eight-
to 14-year-old Asperger's children to develop an emotional language. "At a
basic level, where children are learning about different emotions by rote,
reinforced by rewards, the programme works quite well. But even with a group
of high-achieving autistic children, the difficulty comes when they're
encouraged to generalise what they've learnt to other situations.
One of them asked me: "Well, now I can tell when someone is angry with me.
So what do I do now?"
There is concern, says Richard Mills, that while children lose the symptoms
of autism, and behave in ways that are more acceptable, enabling them to
progress at school more easily, they remain autistic. "When they get to
secondary school or university, where social skills are needed for survival,
there can be problems."
Meanwhile, at Reading University, microbiologists have just got the go-ahead
for new research, focusing - for the first time since the MMR débâcle - on
the high incidence of gastro-intestinal problems in children with autism,
with the possibility that probiotics, live microbiological food supplements
that have been shown to prevent toxic bacteria from colonising the gut, may
have a role in therapy.
In a previous study, professor Glenn Gibson at Reading's department of
microbiology, has already shown that that, compared to normally developing
children, those with autism are more likely to have a poisonous type of
bacteria, clostridia, in their gut, as well as having a higher risk of
suffering chronic constipation or diarrhoea. "It is a particularly nasty bug
that can cause a dangerous gut disease in newborns," explains professor
Gibson. "It also produces neurotoxins, which can affect the brain - which
may explain the link with autism."
In the new study, a group of autistic children with high levels of the
clostridia, will be given a probiotic drink that contains Lactobacillus
plantarum, "good" bacteria that the team has already shown are able to keep
the clostridia under control. At the same time, psychologists will monitor
the children's use of language and social skills and compare them with
another group of autistic children who will receive a placebo.
What's certain to emerge from this and the other new research programmes, is
that there is no cure for autism. The new research programmes, however,
represent a welcome change in clinical attitude to autism - that the
existence of a wide autistic spectrum and the lack of understanding of its
cause, doesn't mean parents should be left alone to decide how to provide
support. As Geoffrey Maddell says: "Research into autism needs to be based
on a wholehearted belief in the value of those on the spectrum and the
hidden benefits they can bring to those around them. It must help them
realise their potential."
The National Autistic Society helpline: 0845 0704004; Autism Intervention
Research Trust: 0117 974 8400 3 August 2004 12:34
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