Re: ‘Autistic children are now seen as a burden’

[Guest guest]

Wow - I would like some of the stuff this guy is smoking! He is

completey nuts!

As the mother of two boys with autism, it gets tiring to hear

blowhards such as this Fitzpatrick guy go on and on about acceptance.

My boys know beyond a shadow of a doubt that they are the most valued

and cherished people on the planet. But that doesn't mean I will ever

stop trying to make them as healthy and happy as I can. Since they

were injured at every pediatric visit, it makes sense to me that

their injuries can heal. Just have to avoid the pediatricians office.

And his guys stupid book.

Sylvia

>

>

>

> 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.

>

>