7 Sep 2008

Autism: It's just life

Every so often, real life intervenes and blogging is the last thing I feel like doing. My head is too full of thoughts that are beyond the boundaries of what I share here.

Also, I find it easier at times, to write when I have something to complain about. I suppose it's easier to declaim than to extol. I know I write positively about my children and make a point of focusing on the positives of raising a disabled child. As well as being my reality, I think it's important to redress the all too common narrative of "devastation." I'm pleased that even now when I'm almost full of worry, my post about Good Stuff had 9 more entries than my list of Not Good Stuff.

But here's another example of that narrative. Published in Saturday's Daily Telegraph is a story called Autism: A different life featuring the people behind a magazine pushing the unproven biomedical theory of autism and stuffed full of advertisements and articles on supplements, extra enzymes, detoxification and a host of other dodgy quackery.

I was introduced to Polly Tommey by my health visitor when Duncan was diagnosed with autism six years ago. I met her and 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. She asked if Duncan had taken antibiotics and yes, he'd had two courses. She asked if he looked frail and had dark rings below his eyes. Yes, he looked frail as he ate very little and was well below the average weight for a child his age. I remember that I also said that he did have dark rings, even though I hadn't noticed such a trait, because I was caught up in her pitch and wanted to think that she knew how to help me help him. 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. I considered it safer than taking the risk of passing them on to another unsuspecting parent, one without the benefit of an in-house quack-buster.

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 Telegraph article describes the efforts Polly and her husband Jonathon made to treat their son Billy:
Jonathan's response was to do everything he could to improve his son's health by testing and treating the biomedical disorders that contributed to his condition. He put him on a gluten- and casein-free diet, treated various funguses, viruses and bacteria in his leaking gut, and gave him zinc supplements to increase his appetite.
None of these therapies have any basis in evidence. Her son now sounds much like Duncan who has not had any behavioural or biomedical therapy.

Young Billy was also the first child in the UK to be given secretin, ye olde wonder treatmente. It was a nineties thing and was later studied properly and found to have no effect.

But the Tommey parents are unfazed:
Nine years on, Jonathan Tommey has completed training as a clinical nutritionist and, last year, he set up the Autism Clinic where he has tested and treated 500 children. Some of them have done so well that he now calls regressive autism - autism that is not evident at birth but begins during childhood - 'a biomedical disorder with a psychological diagnosis'. 'Some children,' he says, 'have improved so much that you could call them recovered.'
Well you could call them recovered, or you could call them older, more developed. Or has Mr Tommey, like Leo Kanner and Hans Asperger, really discovered a new condition?

The Tommey's magazine is popular and is about to go on sale in Sainsbury's and Tesco. It's also said to sell well in the USA, no surprises there.

The article continues:
'It's important to be international,' Polly says. 'It's only by putting our heads together that we will find answers to the questions I want answered.' These include: why are so many children becoming autistic? Why are parents having such a struggle? Where will all these children go? And why are parents committing suicide with their children?
Apart from that last, it's a set of reasonable queries. But by "parents committing suicide with their children" do they mean parents who murder their children and kill themselves?

The "apparent" growth in autism is discussed, with increasing awareness and diagnostic substitution mentioned as possible explanations, but the Tommey's have their own ideas:
...the Tommeys believe there are more than ever before; the survival of premature babies and an increase in births to older mothers may be partly responsible. Environmental factors may also explain the rise.

These might include vaccines (including MMR, as suggested by the gastroenterologist Andrew Wakefield), pollution, antibiotics and other challenges to immature immune systems. 'Whatever the cause,' Polly says, 'with all these children growing into adulthood, we are sitting on a timebomb.'
Ooh, a timebomb! Look out world. Forget about climate change, global poverty, war and fuel shortages, worry about scary autistic children growing up.
Battling with local authorities for schools and respite care is wearing for parents with autistic children, but fearing for the future is worse. The day will come, they know, when they will no longer have even a quiet few hours while their child is at school. And what will happen when they die? 'People with autism have a normal life expectancy,' Polly says, 'though a fair few die young in accidents: they run across roads, unaware of danger.
I too worry about my son's future but see the best way of supporting him as putting pressure on those in power to change work places to make them more autistic friendly and to arrange workable living support systems. I do not think it's worth mentioning that autistic people have normal life expectancy. If we parents of autistic children all focused our energies on enabling them to live as independently as possible as adults, and ensuring they have a good early education together with opportunities for life-long learning, then our time would be well spent. It has got to beat harping on about the MMR, secretin, chelation and dodgy American mail order labs.

I also think the needs of our children and all autistic people can be met without resorting to using the terrible cases of Ryan Davies and James Wardle as examples of what happens without support. Ryan Davies was murdered and though what exactly happened to James has not been made known yet, it's likely that he died unlawfully too. These deaths can't be excused by saying that their parents were driven to despair.
Some parents find the prospect of a lifetime of such misery so unbearable that they take their own and their children's lives. Two years ago Alison Davies took the heartbreaking step of jumping off the Humber bridge holding her 12-year-old son Ryan, and the discovery this April of the bodies of Heather Wardle and her 22-year-old autistic son James once again drew attention to their plight. But there remains no systematic planning for the estimated 135,000 children with autism in this country, three quarters of whom are boys.
Polly talks about her own son:
'But I don't want Billy hidden away and institutionalised. It's such a waste. I want him to feel useful - and to be able to give something back to society. Often children who appear very severely impaired, and are completely non-verbal, have wonderful abilities that shouldn't be wasted. I know one little girl who is brilliant at weaving, another who does wonderful graphics. Some are good at circus skills because they have no fear; others are very good at maths. They would all be much happier if they could be productive.'
People have innate worth, even when they don't seem to have any useful skills, but it's very important to help people enjoy life and develop their skills and interests.

The article ends by describing the Tommey's latest venture, the Autism Trust, a multi-million pound project to build a village for 50 autistic residents. They foresee the local authorities paying £80,000 per year to care for each resident. On looking through its website, I don't think it demonstrates the best use of resources. There's the Wellness Centre "where in–house experts including nutritionists and therapists will practise alongside behavioural, educational and developmental experts" and "vocational opportunities...ranging from organic and eco-friendly agricultural and horticultural work through to technology and design enabled work stations within the office and administration area."

We'll find another way thanks.

3 comments:

Nick McGivney said...

Erudite and insightful. I learn much from your clearly constructed, constructive and heartfelt writings. Even if the subject matter wasn't so emotionally intense for you, you have the gift of making an unknown subject easy to understand and fascinating. I have to admire your sense of balance while disagreeing with someone, as here, but never making your argument ad hominem. It would, I suspect, be the easy route but you don't take it.

Sharon said...

Thanks Nick, I'm blushing now. Mind me head doesn't swell with comments like that!

Adrian said...

Interesting blog and I agree with most of it. only one quibble, but perhaps it's a big one..."These deaths can't be excused by saying that their parents were driven to despair." I might be wrong but I'm not sure I've ever heard anyone 'excuse' these deaths. However, the despair is real, the depression is real, the lack of support is real. One does not excuse the act by recognising that there is a causal connection.