According to the Sun and Daily Mail today, celebrity Melanie Sykes has won £50,000 on the TV game show The Cube and will be donating the money to the charity International Pre-Autistic Network (IPAN).
In doing so, the reports say she revealed that that her own son was autistic. She wants to raise awareness of autism and hoped the charity, which she is a patron of, would use the money to help other parents.
But the Quackometer’s alarm went off. The claims being made looked very questionable. Just exactly who are IPAN and what do they do?
For a start, IPAN do not appear to be targeting children with a diagnosis of autism. Instead, they claim that they can spot certain behaviours in 3 month old babies that may be a precursor to autism. They claim that if left untreated, autism will develop. They claim that they use a ‘psychodynamic’ method “that deals exclusively with emotions’ to correct these problems. They claim that they want parents to know that ‘autism is preventable’.
These are extraordinary claims and I see no good reason to believe they are true.
Autism is a range of developmental problems characterised by poor development in social interaction, communication and behaviour. In order for a diagnosis to be made, a child needs to get to the stages where a child’s development can be seen to be slower than normal. Three months is well before the age when a doctor would want to consider a diagnosis. Diagnosis is not made until a child is at least 2 or 3 years old. Children do vary in their rate of development, and development can slow down and speed up. Claiming that definitive signs can be spotted at a very early stage is highly questionable.
The treatments offered by IPAN also appear to be away from mainstream thought. IPAN links to another organisation at www.infantmentalhealth.com called the Parent Infant Clinic. Here, babies as young as 2 months, are treated with psychotherapy by practitioners “specializing in the emotional and mental health of infants”. The Parent Infant Clinic says it uses psychoanalytic tools to “gives us the ability to understand emotions and family dynamics”.
Psychotherapy is common in France as a treatment for autism. Sometime it reaches extreme levels which have been criticised by the Lancet as being cruel. Routinely, parents are seen as the cause of autism by providing poor interactions with their children.
Treatment is intensive at the clinic – with commitments required from the parents of many weeks. Parents of ‘pre-autistic’ children can expect “36 hours of therapeutic treatment per week for around three weeks”. They ‘talk’ to the infant using ‘psycho-dynamic skills’ and work with the parents and siblings ‘to understand their inner world’.
A number of references are cited to support the claims, mostly written by Stella Acquarone – who happens to be the Director of the Parent-Infant Clinic.
Indeed, Melanie Sykes is reported to say “It is very expensive so the charity raises money for people who cannot afford to put their children through the therapy.”
So, what are the concerns? If IPAN and the Parent Infant Clinic are not correct then something terrible is happening.
As a parent of a 2 month old baby myself, I can say that of course we are always watching our child’s development and naturally we are concerned that things progress as they should do. For some parents, that worry could get out of hand and then they could easily be sucked into believing their child is suffering from ‘pre-autistic’ symptoms. They could then embark on a course of treatment that would be very time consuming, hugely expensive and disruptive of normal family life.
How would they know that the programme had been effective? Since no accepted diagnosis has been made, then a normal development cannot be seen to be a success. Why could that normal development not have happened anyway? If there are developmental problems with a child and this therapy is not effective, then the parents may be denied the chance to access mainstream advice and help having been drawn into the world of psychotherapy.
Indeed, a closer reading of the Melanie Sykes article reveals that indeed her own child has not yet had an official diagnosis of autism, but that she believes her seven year old has been helped by the clinic. Having been told by the clinic that there were problems, and after some extensive therapy, her child’s speech progressed rapidly. I am sure you can see the problem here.
The newspaper articles in the Sun and Mail are misleading by leading with the headlines about Sykes having a child with Autism when no such diagnosis has been made. They are also being careless by not making clear that the treatments being discussed are not mainstream and would be disputed by experts in the field.
As we saw with the Observer Burzynski fiasco, the media easily falls for stories about charitable giving for children with illnesses with celebrities doing their bit to help. It is an area that needs special care, as those selling unconventional and unproven treatments can easily slip under the petticoats of charity and collect large amounts of money for their own private clinics.
But won’t somebody think of the children? Or, perhaps, how to extract money from their neurotic middle-class parents…
The other thing about this that pisses me off (as an autistic person), is that it plays on the assumption that being autistic is somehow a bad thing, that it’s some kind of barrier to having a healthy, happy life.
There are conditions that do that, but autism isn’t one of them. So why the need for a cure?
Wonderful. Another one to add to the fast-growing list of non-diseases. What about babies, children and people who are suffering from pre-death? After all, let’s be honest about it, there are quite a few of those around, are there not?
Thank you Canard Noir, I was beginning to think that the world of skepticism had completely forgotten about whacky psychology.
It comes as no surprise to learn that Psychoanalysts are offering therapy to infants as young as 3 months because they have alienated just about everyone else who is capable of cognition over that age.
More please!
Dear Readers,
To reply to the above Dr is a title given also when you have a PhD which is a well-earned academic qualification after many years of study.
The treatments have worked of IPAN have worked, are successful. Isn’t it a surprise that autism is preventable and treatable at such an early age. Isn’t it worse to carry on extracting money of the parents giving them a no-hope diagnosis…special schools, special institutions when they can be part of society rather than secluded.
Instead of kicking the hope and criticizing the procedure shame on you for not further investigating what it is all about. Oh and yes autsim is diagnosable in early as two months via MRI scans an article that was published just last week. Those who think that autism cannot be help must be from the prehistoric era…get with it.
Thumbs up to any approach which helps a child, infant and family and saves them a whole life long misery…of coping instead of enjoying their children.
I have had a look at the credentials of this groups proponent (inventor ?) of this stuff, Dr Stella Acquarone. While she uses the title “Dr” it may appear that it isn’t a medical qualification.
It may be instructive to pursue the origins of her qualifications, publications and membership of professional bodies. There appears to be no mention of any membership of the “The Royal College of *********” type of entries, where real medics get accredited
While not a guarantee, such a membership might give some confidence.
Dear Readers,
To reply to the above Dr is a title given also when you have a PhD which is a well-earned academic qualification after many years of study.
Oh, and yes. The treatments have worked of IPAN have worked, are successful. Isn’t it a surprise that autism is preventable and treatable at such an early age. Isn’t it worse to carry on extracting money of the parents giving them a no-hope diagnosis…special schools, special institutions when they can be part of society rather than secluded.
Inside of kicking the hope and criticizing the procedure shame on you for not further investigating what it is all about. Oh and yes autsim is diagnosable in early as two months via MRI scans an article that was published just last week. Those who think that autism cannot be help must be from the prehistoric era…get with it.
Thumbs up to any approach which helps a child, infant and family and saves them a whole life long misery…of coping instead of enjoying their children.
Oops sorry for my enthusiasm…instead of inside… I am passionate about getting the message across and out!
Quack, quack, quack…
I tried a simple web search for the week old article on MRI diagnosis at 2 months and only found a 1998 article on the possibility of diagnosis as early as 4 mos.
I just don’t see how tormenting a 3 mo. old baby can possibly avoid autism. I don’t see epigenetics playing a role.
Are there any studies reported on this? I cannot see an RCT as passing ethical review, but if the disorder can be quantified pre- and post- treatment, there might be support for it.
I believe the best description for this is “dubious”.
http://www.healthjockey.com/2012/01/27/brain-scans-can-predict-signs-of-autism-in-6-month-old-babies-say-experts/# is a news clip about the paper I think Dr J A references. The youngest infant given an MRI was 10 months old. There is nothing about 2 month old babies being given an MRI.
Also the BBC’s coverage: http://www.bbc.co.uk/news/health-16740758
The main method used was “sensors attached to the scalp”, i.e. EEG or similar, associated with facial recognition stimuli. And note the caveat, “There were also babies who did develop autism who had low-risk brainwaves. The test would need to be more accurate before it was used routinely.”
So even the state of the art (as of last week) has not yet reached the point of being able to make a reliable diagnosis of autism at 6 months — what are the chances that behavioural observations of 2 or 3 month old kids are more accurate? Even if there is a correlation, the false positive rate must be huge… which, as mentioned, would also naively lead to a large “success” rate.
I write about this on the FierceBiomarkers website – http://www.fiercebiomarkers.com/story/imaging-biomarker-shows-autism-infancy/2012-02-22 – and yes, it was 6 month old babies, and it’s an study of 92 children over two years. It’s promising and interesting, but not anywhere near usable in the clinic.
Dr J A
“The treatments have worked of IPAN have worked, are successful.”
I’m sure you can cite high-quality research that shows this intervention has a specific therapeutic benefit.
Please supply citations.
Just to add to BSM’s post. In common with most quackery proving IPAN correct would be trivial. That is hasn’t been done leaves open the eternal quack question: Fraud or fantasist?
Two studies required:
1. Demonstrate using a cohort study that your prediction of autistic / normal in babies is highly selective and specific.
Can I suggest a ROC curve for this: http://en.wikipedia.org/wiki/Receiver_operating_characteristic
2. In a separate study, demonstrate that those you predict to be autistic exhibit much reduced symptoms.
I predict IPAN could never progress beyond study 1.
While researching my own blog post on the subject I came across an article in the Daily Telegraph from 2006. http://www.telegraph.co.uk/news/uknews/1532661/Babies-on-the-couch.html.
Back then Stella Acquarone was charging £29,000 for three weeks of intensive family therapy (six hours a day, six days a week with six therapists or 666 for short)
Such intense programming and so much emotional and financial investment by the family reminds me of the methods that cults use to recruit their members.
For me the most frightening thing about IPAN – and something which doesn’t seem to have been picked up on – is their trustees. http://www.ipan-babies-autism.org/index.php?option=com_content&view=article&id=44&Itemid=37 Among whom is NHS Paediatric Neurologist Adelaide Martinez, of the Royal London Hospital. Has she been asked to explain her involvement with the organisation? Has Bart’s and the London made any comment?
One of trustees in 2007 Peter Ivens, who he is?
this is very interesting information my 5yr old was diognosed with autism 2 yrs ago. he is doing really well at school now.Although sperch and socially is still quite delayed.question…does your charity also help to overcome and limit mannerisms in autistic children please getin touch thank you..hanna junaid