‘Autistic children are now seen as a burden’

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http://www.spiked-online.com/index.php?/site/reviewofbooks_article/6045/

‘Autistic children are now seen as a burden’

Dr Fitzpatrick, author of Defeating Autism, talks to Helene Guldberg

about how raising a child with autism can be made infinitely harder –

emotionally, financially and practically – by the charlatanic ‘war on

autism’.

By Helene Guldberg

Dr Fitzpatrick’s Defeating Autism: A Damaging Delusion is not only a

moving personal account of the challenges faced by parents of a child with

autism. It is also a powerful exposé of the damaging effects of the numerous

campaigns that promise to ‘defeat autism now’ through various ‘biomedical’

treatments, such as special diets and supplements, detoxification and

medication.

" Parents are fighting the wrong battles against the wrong people at the

wrong time’, Dr Fitzpatrick told me when we met in a café in Hackney, London

near his GP surgery. He believes parents are held back from doing what is

best for their own children by the false promises of biomedical campaigners,

whose ‘rage’ is ‘a divisive and destructive force’.

Not only are many of the so-called ‘cures’ for autism that they promote

worse than useless – causing discomfort and distress to the children, and

even, in very rare cases, death – but the continual drive to ‘defeat autism’

prevents parents from coming to terms with their children’s condition, and

can cause them to have a rather negative view of their own children.

‘The unresolved grief of parents of children with autism is a particular

problem’, writes Fitzpatrick in his book, ‘because they still have a child

though perhaps not the child they anticipated’.

“Acceptance is necessary, not just for the parents’ own peace of mind, but

also for the good of their children”

There has been a similar experience in my own family. The firstborn child of

my youngest brother, was diagnosed with a severe form of epilepsy at

the age of six months. Although there was a possibility that a combination

of anti-epileptic drugs or neurosurgery might cure his epilepsy, in

retrospect it was clear that his neurological disorder would very likely

result in moderate or severe learning difficulties.

Facing up to the fact that your child may never develop normally or lead an

independent life is very hard for any parent, and will inevitably take time.

But at some stage acceptance is necessary, not just for the parents’ own

peace of mind, but also for the good of their children. Otherwise, as

Fitzpatrick asks, ‘what happens to the child, the human being, who is seen

only as a “burden”?’ Of course, raising a child with severe learning

difficulties is difficult, but it is a lot more difficult in the absence of

acceptance.

Parents of children with autism who are bombarded with all kinds of promises

of wonder treatments are prevented from working through their grief and

reaching the stage of acceptance. All of the emphasis on ‘windows of

opportunity’ and the importance of ‘early intervention’ puts an immense

amount of pressure on parents of children with autism and other learning

difficulties, who often end up running around desperately seeking a ‘cure’,

and trying one after another; they can become obsessed with ‘fixing’ their

child.

‘At best, [these “wonder cures”] divert and dissipate already over-stretched

parental energies; at worst they encourage an enduring rage that is likely

to compound family difficulties, to intensify isolation and lead ultimately

to demoralisation’, writes Fitzpatrick in Defeating Autism.

My brother and his wife spent the first years of their son Magnus’ life

trying everything they thought would help; and many of the things they tried

were empirically tested treatments that had some degree of success. But

there was no ‘cure’ for Magnus, and when my brother was forced to face up to

this fact, his grief was intense. Soon afterwards, however, he also felt

that an enormous weight had been lifted off his shoulders. As he recently

told me, it is then that he was able to stop desperately hoping for a

‘recovery’, and concentrate on developing a relationship with Magnus as a

son whom he could love and cherish for who he is.

Fitzpatrick touchingly describes the grief he and his wife went through

while getting to terms with their son ’ autism – a profound grief that

eventually led to acceptance:

“There is no evidence that any of the ‘cures’ work, and worse, some of them

are potentially harmful”

‘We have come to accept that will never lead an independent life and

our efforts are devoted to ensuring that he gets the level of support he

needs to maintain the highest possible quality of life. And we try to look

on the bright side. We relish his enjoyment of simple pleasures, his

infectious laugh, his wonderful smile, his curly red hair. We will never

have to worry about his exam results or over what time he returns home from

a night of clubbing’, he writes.

Having come to terms with the fact that , who now lives away from the

family home in residential care, would not ‘recover’ from autism, ‘we try to

do the best we can to strengthen his engagement with the world… seeking

mutually enjoyable activities that foster social interaction, such as

swimming or trampolining, and trips to restaurants and supermarkets’.

It is understandable that parents will try anything they think may possibly

improve their children’s condition. That is why Defeating Autism: A Damaging

Delusion is such an important book. Fitzpatrick shows clearly that parents

need to channel their energies into strategies that will benefit their

autistic child and their families, not spend all of their time and energy on

trying untested, time-consuming, expensive and potentially harmful

treatments.

‘I decided to write the book after seeing so many parents go down the rabbit

hole, latching on to one idea after another that they believed would offer

some hope of a cure’, Fitzpatrick told me.

In his book, he painstakingly analyses the available evidence for everything

from the ‘wonder cure’ of secretin and detox and immune system treatments to

special diets and supplements – and exposes the distinct lack of scientific

evidence for their efficacy. There is no evidence that these treatments work

and worse, some of them are potentially harmful.

Fitzpatrick writes: ‘Here is another paradox thrown up by the biomedical

movement. Its supporters are strident in their demands for trials of the

safety of vaccines [but] when it comes to biomedical treatments they reject

any suggestion that these should be subjected to proper evaluation. They are

outraged by the presence of infinitesimal quantities of mercury in vaccines

(which prevent bacterial contamination without ever being associated with

any adverse effect), yet they seem quite happy to inject children with a

product like secretin, a crude extract of pig pancreas that was developed

for the purpose of testing pancreatic function but has never been tested in

any way for therapeutic use.’

“‘My aim with this book is to encourage parents to emphasise the positive in

relation to their autistic children’”

Fitzpatrick warns that ‘plausible theories and their misguided advocates

could deliver desperate parents into the hands of unscrupulous

practitioners’, adding: ‘This was confirmed to me one day in [my surgery]

when the mother of a boy with autism told me that she had spent the

equivalent of his disability living allowance for one year on a course of

secretin injections provided by a Harley street clinic. For a single parent

reliant on benefits, the outcome of this encounter with a biomedical

practitioner was not only disappointment when the miracle cure failed, but

financial hardship for the whole family.’

Some may interpret Fitzpatrick’s message as one of resignation. But his book

is far from pessimistic. Instead – by exposing the charlatans who take

advantage of parents and by trying to help prevent parents from diverting

their energies – it could make a big difference to families with autistic

children. As Fitzpatrick told me: ‘It is not resignation to accept the

current state of science in relation to autism.’ There are no ‘cures’ and

most of those who claim to be able to defeat autism are preying on the grief

of desperate parents.

‘My aim with this book is to encourage parents to emphasise the positive in

relation to their autistic children, to pursue interventions for which there

is good evidence of benefit (and some guarantee of safety) and to avoid the

diversions and dead-ends offered by the perspective of “defeating autism”’,

he writes in the introduction.

As Roy Grinker, professor of anthropology at Washington

University and author of Unstrange Minds, says of Fitzpatrick: ‘He shows us

that our children are indeed being helped tremendously, not by unscientific

autism treatments that falsely promise cure or recovery, but by educators,

scientists, evidence-based therapies, and new understandings of what it

means to be human, and different, in the twenty-first century.’

Fitzpatrick also persuasively and eloquently demolishes the key plank of the

two main vaccination panics: claims in the UK of a link between the measles,

mumps and rubella (MMR) vaccine and autism, and in the USA of a link between

mercury-based vaccines and autism.

When I met with Fitzpatrick back in 2004 to discuss his previous book, MMR

and Autism, he stressed that any risks associated with the MMR vaccine were

virtually non-existent: ‘When 500million doses of a vaccine have been given

in 80 countries over more than 30 years, and serious adverse reactions are

found to be extremely rare, then it is fair to describe it as “safe”’, he

said. And he argued that the case for immunisation is indisputable:

‘Diseases that had caused devastating epidemics in living memory, and had

produced a significant toll of death and disability into the postwar period,

have virtually disappeared.’

Campaigners argue that there has been a growth in autism cases of ‘epidemic’

proportions in the Western world over the past two decades – due to

everything from vaccines and antibiotics to pesticides and diet. But the

increased prevalence of autism is better explained by increased awareness

and improved diagnosis, along with the broadening of the concept of autism,

Fitzpatrick shows.

Instead of trying to fight the ‘environmental toxicity’ of the modern world,

parents should concentrate on fighting for the best possible education and

social care for their children. But above all, they should interact with

them, he says. Fitzpatrick argues: ‘Sometimes it is more difficult simply to

spend time with our children than it is to pursue investigations and

treatments.’ He explains that children with autism may retreat into their

own world. They may pursue obsessional rituals and challenging behaviours.

‘The very fact that it is so difficult to engage with children with autism

underlines the importance of continuing to try’, he writes.

‘[Acceptance] means parents and others accepting and loving the autistic

child as another human being, and it means accepting that the quest for a

miracle cure is not likely to be helpful for their autistic child, for any

other children they might have, or indeed, for themselves.’

This book should be read, not only by parents of autistic children, but by

policymakers, professionals and practitioners working in the field of autism

and by academics and scientists interested in the media and the public

presentation of science and medicine.

Helene Guldberg is the author of Reclaiming Childhood: Freedom and Play in

an Age of Fear, which will be published on 29 January 2009. (Buy this book

from Amazon(UK).) The London launch of her book, organised by spiked and

Routledge, will take place on 29 January in central London. See the spiked

events page for full details.

Defeating Autism: A Damaging Delusion, by Fitzpatrick is published by

Routledge.