24 Jun 2009

So Gordon met Polly

The media provides endless stupid when it comes to autism. The latest Daily Mail article has the fantastically asinine headline, "I helped my son beat autism by making him give up Weetabix." But the ignorance of Daily Mail headline writers is to be expected. What though, can explain the decision of the Prime Minister of the UK, with all the difficulties he currently faces, the country in financial chaos, his party suffering near annihilation in the elections and his own precarious position as our beloved leader,to find the time to have a chat with Polly Tommey, a self appointed representative of some entity she's called "Autism Mothers".

How did this woman get the ear of the PM? She and her supporters ran an astute marketing campaign of billboards and posters costing over £500 000 (according to their press release). She and a group of other rich and attractive mothers posed in comely black dresses as the "Autism Mothers: Delivering Where Governments Have Failed." They are supposed to show that these women "aren't downtrodden, ill educated women who somehow deserve to have an autistic child."

Their billboards made out that this woman alone can save the PM £508 million a year, can help cut the divorce rate, can help him get people back to work. She is the messiah mum! She's going to make it all better.

The billboards didn't make it to Northern Ireland, but I've heard that there were loads of them about in England. For some reason, they were common in motorway service station toilets too.

But Gordon Brown for some bizarre reason fell for it and has since met the amazing Polly. I met her too 7 years ago and wrote about it here:
I spent a long afternoon listening to her theories and her detailed regime to rid her son of his autism. Back then I was impressed at her zeal and ostensible knowledge of autism's causes and treatments. Her son had had intensive ABA teaching. He had a host of supplements daily. He was fed only organic food and water from glass bottles, lest any pesky toxins intrude.

She talked about his numerous infections and how she believed the many courses of antibiotics he'd taken as a baby, together with vaccinations, were connected to his autism.
I was caught up in her pitch and wanted to think that she knew how to help me help [Duncan]. She warned me against joining the local NAS group where they refused to believe in cures and whose acceptance she interpreted as negativity.

She was a very kind lady. She welcomed me into her home and really did want to share what she knew in an effort to help. She presented me with a glut of her magazines which I read religiously for the next week or so. I tried to get Gordon to take an interest in it all. I showed him the article by the nutropath, advocating various vitamins and minerals. I showed him the articles about the labs which tested autistic children's hair, blood and stools and found all sorts of non standard levels. He scoffed at the lot of it. He just knew too much about microbiology, statistics, pharmacology etc. to be taken in by any of it. He pointed out a pile of what were (to him) ridiculous assertions contained in the magazines, and since he really knows his stuff, I dumped the lot of them.

But times have changed since then. What could be attributable to ignorance back in 2002, is less excusable today. The science has moved on. Numerous studies have failed to find a link between vaccination and autism, while as many have found more evidence for the genetic basis of the condition. Those who cling to environmental explanations in the face of the evidence are coming from a faith based position.
The Autism File magazine has moved on too. It still backs failed gastroenterologist/autism quack therapist Andrew Wakefield wholeheartedly, and still pushes unproven biomedical treatments as the best option for autistic children, and carries copious advertisements for the providers of such woo, but these days it's more widely available. Sadly, there's a market for such bollocks.

Here's how this dynamo of autism nonsense is introduced in the Daily Mail:
A few weeks ago, a one-woman campaign culminated in Polly Tommey meeting the Prime Minister to improve support for the families of children with autism.

She was fighting for the sake of thousands of other parents around the country, having become an unofficial 'Good Samaritan' for the desperate parents of autistic children.
Oh really? A petition in her favour got only 574 signatures. Where is the evidence that this woman and her company represent "thousands of other parents"? The NAS is much more representative of autistic adults and children and their parents/families.

Polly starts her article by describing the time she counselled a man who felt suicidal because he couldn't cope with his autistic 2 year old son. It's great that she was able to stop him killing himself but why did he have her phone number to call in his time of need? Why has she set herself, as an individual no more qualified than I myself am, to be the authority and source of help and information for parents of autistic children. Wouldn't a well established charity like the NAS be more useful?

Polly then describes "how unrelentingly hard it is looking after autistic children" with an apparently illustrative incident in which her son, then aged just two, pulled his six month old little brother's hair out. While I'm sure that was traumatic for the baby and hard on his mum, it's hardly unusual for toddlers, autistic and not, to inadvertently hurt their baby siblings. Oh I forgot, here's what marks it out as bizzarro autismo stuff; "Toby was screaming and his head was all bloody - but Billy was just laughing." Yes, the two year old laughed instead of recognising the full magnitude of his crime and promising to make reparations.

Polly tells us about her charmed life before the dread autism came to call and she and her husband "cried until we fell asleep" for six weeks. She calls her son's autism "regressive autism" and was "desperate to get my child back. I would have done anything for a smile or a cuddle, or to hear him say: 'I love you, Mum.'"

Polly continues with the myth of the autism gut:
People don't realise that a large proportion of autistic children have terrible gut problems, and for 18 months that was the case with Billy. Any normal child would have been taken to A&E at some point and given a battery of tests, but with autistic children doctors say it's just part of their autism.
Just what is the evidence that autistic children have more gut problems than non autistic? And why would a child go to the A&E department for tests on autism? That's one of the oddest suggestions I've heard yet. I've said it before, if you think your child has gut issues, see a doctor, but not at an accident and emergency department. When a child is sick, it's irrelevant that the child has autism. When Duncan was younger and had a limited diet and wasn't gaining weight fast enough, we were referred to a paediatric gastroenterologist as part of the investigations into his health needs. He had various tests performed, all by proper doctors and all expenses were covered by the NHS. No doctor has ever said to us that any of Duncan's medical issues should be taken as just part of his autism. But maybe we've just been lucky.

The Tommeys discovered the gluten free/casein free diet and like magic, Billy improved. His Dad was so impressed that he sought out more sources of (mis)information on biomedical approaches to autism and he "re-trained as a clinical nutritionist."
Of course he did!

But what's this, in the bit about how they were the first in the UK to try treating their son with the hormone secretin, Polly says that "Billy still suffered terrible constipation, and we thought it would help regulate his gut. It worked and Billy's behaviour improved."

But...I thought the GFCF diet had sorted all that?! Anyway, one of the couple's media mates got them onto the Trevor McDonald Tonight TV show talking about secretin and they found themselves "inundated with people asking us for help." They decided to start a magazine, it's circulation is now an impressive 44,000 and it's on sale nationally for £4.95. It's safe to say, the Tommeys words are read a bit more than my own.

Polly then explains the type of problems people ask for their help with but she admits, "I am not trained to deal with any of this. All I can do is listen and advise where I can."
So why not send them to the NAS, where the phone counsellors are trained?

She comes out with an amazing admission:
There is so much misinformation out there, and so little understanding from health professionals, emergency services and the authorities that it makes caring ten times harder.
The Autism File magazine is one such source of misinformation.

The article proceeds with an anecdote of autism induced difficulties. In this case however, if what she says is true, a terrible miscarriage of justice has been suffered by the man described. He screamed on a bus when he couldn't deal with the sound of a baby crying, was taken away by the police and sectioned. This is all told from the perspective of his mother who, Polly says, "didn't see him for six months and by the time she got him back he was pumped full of drugs and could only sit rocking backwards and forwards in his bedroom. All her hard work had been destroyed."

All her hard work?! Polly continues;
The cost of life care for an autistic person is around £2.9 million, but we think that with the right help that could be massively reduced.
This figure relates to the cost of a person with autism and a learning disability. For people with High Functioning Autism, the same authors estimated the cost at £784 800.

Polly postulates the provision of an autism centre which she reckons would cost £10million to set up and "where we could educate the police, magistrates, teachers and anyone else who comes into contact with autism."

The unsubstantiated claims of biomedical believers are shared;
There are amazing things being done to help autistic kids, particularly with biomedical intervention - detoxifying children through supplements and probiotics, diet, speech therapy and behaviour analysis.

Some children respond so well they are taken off the autistic spectrum and can return to mainstream school.

But very little of this help is available on the NHS, or through the local education authority.
But, why should the state fund this when there is no evidence of its effectiveness?
Polly might learn from an astonishingly good article the Mail ran earlier, the great autism rip-off.

Polly tells that Gordon Brown "loved the billboard campaign and said it was genius."

Money talks.

The article continues;
Gordon wants me to work with his wife Sarah to bring all the autistic organisations together so that we can work for a common cause. He wants there to be more understanding towards autistics, and for them to be more included in society.

For that to happen, the public sector needs educating, so he wants his representatives to attend a conference that our charity, The Autism Trust, is running in October. We want doctors, scientists and the public sector to learn more about dealing with autistic people.
I am all for more understanding of and towards autistic people. I don't see how this can be achieved by attending a conference run by a group of parents whose dearest aim is the removal of their child's autism. The government representatives would be better off meeting actual autistic people to learn from them about their needs for services and respectful, inclusive treatment.


Alan in Belfast said...

Tweet @sarahbrown10 and ask her to read your post ... she seems to write it herself.

Sharon said...

Oh really Alan! Thanks for that tip. I'll do it.

Stephanie Lynn Keil said...

I've never had ABA or any sort of biomedical treatment. I never will either because I have Medicaid.

It seems that the people who do this biomed/ABA stuff usually have a lot of money: they must because I'm sure insurance doesn't cover all of it.

I don't believe that biomed/ABA works well anyway. Perhaps ABA in the short term but I don't see many successful adults with autism who had ABA, so I've read.

Neurodiversity is appealing because it is free.

Zonker Harris said...

"I don't see how this can be achieved by attending a conference run by a group of parents whose dearest aim is the removal of their child's autism"

I think you'll find their second dearest wish is to make money. If not their first.

I hate to say it, but that Mail Quack article was an excellent piece of journalism.

farmwifetwo said...

"No doctor has ever said to us that any of Duncan's medical issues should be taken as just part of his autism. But maybe we've just been lucky."

You were. My eldest had terrible diahhrea. They kept telling us it was teething. At 2.5 the Dev Ped that did his Dx told us "some children with autism are like that"... it was "NORMAL". Excuse me... NORMAL to have a bottom so raw at times it bled. A child that cried everytime he pooped and hated to be cleaned up is NORMAL.

Yes, within 48hrs without dairy it got rid of the nightly/daily (naps too) nightmares/terrors and that terrible diahhrea.

7 days later we put a tiny bit of butter on a freezer pancake at breaky and he screamed in the playpen until noon. There wasn't an object hard enough for him to slam his head off of. All I did was sit with my youngest (infant) and cried.

He calmed, ate lunch, and had a nap (terror). He calmed and stood on the front step while his Dad bbq'd and looked at me through the door... bent down and promptly slammed his head off the concrete step hard enough to bruise and swell. He was 2.5 yrs old.

Cure.. NO.. all his gains are his own and b/c of his hard work.... But something in the dairy caused something to go terribly wrong along the pathways in his brain... YES.

Now at 9.5 we're weaning him back onto dairy. He now eats everything except cheese and liquid milk.

Whatever it was.... is gone. Maybe it was as simple as it gave him a migraine??? And since he head banged until he was about 8... this was his method of attempting to deal with the pain??? I don't know. I have a list of guesses.

But, no matter what... had he been "normal".. a Dr would have said "he's intolerant to something, start pulling foods".

NOTE: my youngest, the severe, non-verbal one... it did nothing to help.. so NO it's not a cure.

Stephanie, they do ABA in Ontario, Canada b/c it's the only "paid for" therapy out there. It's unregulated, each program is as different as the one next to it. There is no qualifications for practioners... and in our case... a disaster. Harold (autism in nb) likes it... but IMO as long as his child cannot live except within his own bubble... it's a failure. ABA does not allow for the transfer of skills or the dealings with sensory/OT/Speech issues. They will not accept help from other REGULATED and TRAINED therapists (OT, SLP).

Foresam said...
This comment has been removed by a blog administrator.
Sharon said...

@Stephanie, I fully support the provision of high quality specialist education, and of occupational and speech therapy etc.
I think it's a real shame that in some countries the autism schools are all ABA based, but I think that in reality, they use an eclectic mix of approaches which suit the children better.

You are right about the cost. In that article, Polly said that they have spent £45,000 on their son. Ordinary people don't have that kind of money to spare.

@ZH (what are you like!) I agree. The Mail sells so well because they are great at such emotionally engaging (though biased and inaccurate) stories.

@Farmwifetwo, your poor boy.
I don't doubt that some doctors, perhaps many, have picked up on the claims by some that autism comes with all sorts of physical symptoms and expressions of pain and discomfort. That, as we know is bullshit. Autism is defined from behaviour only; language and communication, social engagement, relationship skills and preoccupations in objects and routines. The sooner that all in the medical profession realise that there is no basis for them to suppose that severe pain or gut problems is just part of it, the better. We need to get this message out clearly.

There is no doubt that some children, autistic and not, can't eat dairy products and/or gluten. That's why sick autistic children must be properly treated medically.

Hammie said...

ABA is the most eclectic education available. It is not a Lovaas laboratory of discrete trials, but a science which measures and informs everthing our kids do in our school. That includes academics, life skills, occupational and physical therapy, Verbal Behaviour, communication, Language skills, play skills, social and independence skills. Everything is tailored to the individual child and then data is taken to see if it works, if it doesn't - they change the lesson, method, number of steps or delivery. Every task, every day and every week I get the data to tell me what is working, and what we need to talk about changing.
And if I have a problem at home, they help me come up with solutions.

Anecdotally I can tell you that half of my friends in the state's so-called "eclectic" classes are happy.

I can't give you the data because they don't take it.
They don't record,
they don't measure
and they are not accountable
if the child isn't learning.

I really take exception to evidence based (and I am talking about our hourly, daily, weekly evidence, not the 30+ year old studies) but evidence based education is lumped in with unsubstantiated alternative "therapies" which proport to "help" with autism.

I self funded ABA tuition for my kids for years happily. I now have the benefit of one of the few state funded services, and every day improves our overall quality of life. And our future outlook.


Lovely to meet you at the conference Sharon. I hope SarahBrown has the sense to listen to all sides of the story, to make an informed decision.

jazzygal said...

Excellant post Sharon.

Maybe some of these "therapies" worked for her but it really seems to me to be putting dangerous misinformation out there.

Does she advocate the "vodka therapy" too??!! x J

3laine said...

I think that a lot of Autistic people have nutritional problems because we are such fussy eaters. Most autistic kids like eating very dry foods, like white bread (gluten) and probably drink lots of milk (casein).

Obviously too much of something causes problems. So, I can sort of see the logic of the GFCF diet. But I wouldn't advise it as I don't think it works in the long term. I think it's all about introducing new foods, one food at a time. Trying to get as much variety in the diet as possible. Cutting things out will only cause nutritional deficiencies later on. Kids on GFCF will probably end up with osteoporosis because they aren't getting enough calcium.

@farmwifetwo My choir director used to suffer from migraines. She said that it was so bad that she would end up banging her head off the wall. She would usually have to be sedated. She is not autistic, so maybe it was migraines that your son had. Certain foods like cheese and chocolate are known to trigger migraines even in 'normal' people. Some foods and drinks affect people differently, the fact that he's Autistic seems irrelevant. It's a real shame that not all doctors see it that way.

Club 166 said...

Stupid people with money are dangerous (think Jenny McCarthey and Katie Wright in the US).

When people are either misled or willfully ignorant to the point of holding such unscientific views, and also happen to have money, then they influence the public opinion much more than they logically should.

I feel for you.