Partisan positions in the autism wars

Watching and listening to the ‘debate’ held in the United States Senate when R F Kennedy was up for instalment as the Head of the Department of Health and Human Services back in February was a revelation. Here was a man who had spent his career on the left – as a campaigner and lawyer working to promote human health and environmental protection – being challenged by the most left-wing representatives of the political class. The grandparents of the left, Senators Bernie Sanders and Elizabeth Warren were apoplectic about Kennedy wanting to Make America Healthy Again.

What’s more, since his instalment, Kennedy has had the temerity to make tackling the autism epidemic a major concern. This too has provoked a massive gnashing of teeth all over the world - and the image below is from Australia but we have similar in the UK as well.

As a student my textbooks told me that the left were supposed to stand up for ordinary people in the fight against capitalism. They were all about organising the workers to challenge the boss. They were all about looking after the people who couldn’t look after themselves.

In theory at least.

Back when our son was diagnosed with severe autism in 2008, I wrote an article about our experiences, hoping to get it published in a left-wing magazine with a small circulation in the UK. I knew the editor who had already published articles related to my academic work on the import of Alinsky-style broad based community organising and the launch of a living wage campaign in east London.

My proposed article on autism was a much harder sell. It was discussed and rejected at the editorial board. Even then, the reasoning was that autism was an identity category and my article would upset people who identified as autistic. Furthermore, it would reignite the debate about vaccines and autism, and no-one wanted to go there, there was too much at stake.

In sorting out the piles of paperwork and electronic documents accumulated in the process of being an autism parent, I recently rediscovered the article. It was called Autistic Psychotic Disorder, and I’ve reproduced it below. Alert readers of the Autism Tribune will notice how little has changed in the way that I think!

They will also notice the one thing that has changed: the incidence rate. Back in 2008, the prevalence was thought to be something like 1 in 100 but it is now much higher than this. The latest data from school-aged children in Northern Ireland shows a rate of 1 in 17 (5.9%) and as many as 80% of these children have a special educational need of some kind. This is an increase of more than 400% in just 17 years.

The prevalence rate of autism - and other neurological, immunological and psychiatric problems - always goes up.

Otherwise, the mainstream debate remains as bonkers as ever. Now it is dressed up in the language of ‘neurodiversity’ which makes it sound much more exciting and enticing – and much less of a problem – than it used to. We also suffer the indignity of being told we are ‘misinformed’ by people who clearly have no idea what they are talking about.

The left could have taken a more sensible position back in the 1980s. They could have rejected the kinds of identity politics that have pushed it into the arms of the big corporates (just look at what has happened to Pride and the fallout from trans!) They could have rejected a model of health that pedals the interests of the pharmaceutical companies. They could have supported people who wanted to have a sensible conversation about vaccines and the other environmental toxins that can cause autism. Lots of things could have happened but they didn’t.

I’ve come to realise that our experience is the entirely predictable outcome of the kind of progressive thinking that wilfully overlooks the unintended consequences of pursuing the latest techno-utopian dawn. I’ve written about this before; our children are the collateral damage of the health progressives who focus on the ‘greater good’ by poisoning people. It’s all done for our benefit, administered by very well-intentioned people who really do care, but it can be very bad – if not fatal - for your health and wellbeing.

Thinking about thinking

In the UK, it is only the small-c conservatives – proper conservatives who want to conserve things - who are willing to publish anything sensible about the autism epidemic today. The online news outlet The Conservative Woman has run a few of these Tribune articles and their readers are interested in conserving life and fostering health. They want to know what is causing chronic ill health in our children – and adults – so we can do something about it. The so-called reactionaries are the revolutionaries in today’s crazy world.

I hope you will read the original article below and let me know what you think.

It is truly sobering to reflect that it was written 17 years ago; it could have been yesterday bar the reduction in numbers and waiting times we encountered back then.

***********************************************************************************************************

23 June 2008

Autistic Psychotic Disorder

It’s likely you know someone who is autistic or have a friend of a friend on the ‘spectrum’ (of Autistic Spectrum Disorder or ASD). Numbers have risen exponentially in recent years and are now measured at something like 1 in 100 with a gender dynamic that means boys are much more likely to be affected than girls. Epidemics are intriguing when you read about them in the paper but they are downright scary when they get closer to home.

In the last six months, our family has been plunged into what we are calling Autistic Psychotic Disorder (APD). In addition to having a four year old child whose gut doesn’t work (our son hasn’t had a proper bowel movement for years), who wakes up for several hours a night, has obvious neurological damage (hand flapping and clapping), explosions of self-destructive anger and is already years behind his peers in his learning, we have had to come to terms with the impact of the endemic problem of APD. Quite simply, the state does not and cannot care for children and families like ours.

On the face of it, this might seem like an issue of resources. Hospitals are clearly short of the professionals needed to diagnose and support autistic children and schools don’t have the expertise and extra staff needed to help. However, there is more to it than this. After inserting yourself into the right queues and waiting months to be seen by the paediatricians, the speech therapists and the educational psychologists, you realise the full extent of APD in Britain today. It is one thing to be left in queues not getting the help that you need, it is even worse to find there is nothing on offer once you have arrived at the end of the queue. Queuing to access what are often poor-quality services, and then learning how to complain, are essential skills for all parents of special needs kids. However, ASD parents face the added and critical problem of the profound lack of knowledge about the nature of the condition itself. Without improved understanding of the biochemical problems or disease underlying the symptoms, our children will never get the service they need.

Medics and psychologists were once taught that autism was the fault of ‘refrigerator mothers’ who were unable to love their children and unleash their emotive potential. They are now taught that it is a disability affecting behaviour and mind. Autism is understood as being the product of faulty genes that are manifest in social, sensory and communicative difficulties. In what is known as the ‘triad of impairments’ autistic children are recognised as having a set of disabilities that can vary widely across a spectrum from severe learning and behavioural difficulties at one end to the brilliance that is sometimes associated with Asperger’s at the other. Once diagnosed, state-employed professionals will help (to varying degrees) to manage the symptoms of autism. If we are lucky, schools may be given the extra resources to train staff and to employ assistants to help our children access the National Curriculum. The Treasury will even open the collective wallet to give extra money directly to the families concerned (and in our experience, this has sadly been the only straight-forward part of the journey).

While state services are currently responding – often badly – to the symptoms of this new epidemic, there is little serious commitment to look at the cause. Our son regressed over a period of time, losing the skills he once had. Months before the black cloud of autism came to our door, we were trying to deal with his constipation, to tackle his eczema and his food sensitivities. Moreover, the interventions we have since made to his diet and the health of his bowel – both before and after his formal diagnosis - have had a dramatic and positive impact on him. It is clear to us – and to many other parents – that autism has its roots in the malfunctioning biochemistry of the body. Something pushes our children over the edge.

If we can improve the quality of our son’s life by intervening from our own intuition at home, just think what could be done by via a coordinated and concerted effort on the part of the state. Since diagnosis I have joined many other parents of autistic children in scavenging the internet and reading medical textbooks to try and understand the condition. I have discovered a parallel universe created by and for parents involving growing numbers of supportive educational, medical and nutritional practitioners who are engaged in the collective production of knowledge. While the medical establishment still believe there is nothing that can be done for our children, there is an alternative pluriverse of experiments, experiences and stories that point the way to the future.

Parents and their allies are making their own way for the sake of their children. Not content to accept the official prognosis, people have used the internet to create new networks of knowledge exchange. Crafting a new social movement in the face of necessity, parents have set up organisations for sharing information, campaigning for research and demanding our voices are heard. Spend a few hours on Google and you discover the common link to the gut, you read about parents who have implemented gluten and diary-free diets with dramatic effects, and you hear about the gains that are made by detoxification. These things are not part of the lexicon or the prescriptive toolkit of the medical establishment, but ASD parents have been forced to develop an alternative school.

Thus we arrive at Autistic Psychotic Disorder. The medical establishment are in one world and increasing numbers of parents find themselves in another. The gulf between them seems huge. As an informed parent, this can add to your woes. Not only do you have to face up to the demands of parenting a disabled child, but you also carry the burden of being their doctor as well. While there are small numbers of alternative practitioners who are filling this vacuum, often linked to a growing movement of medically-trained doctors in the Defeat Autism Now! (DAN!) network in the USA, this is still in its infancy in the UK. Moreover, much of the paltry amount spent on research in this field in Britain (at least as far as I know) seeks to understand the sensory and behavioural aspects of the condition or is engaged in a quest for the genes. Since the silencing of Andrew Wakefield and his team, there does not appear to be any British-based research into the biochemistry at work in a child like our son.

Our experience would imply that medical research is just as political as any other area of intellectual endeavour. In the wake – and heat - of the MMR controversy, medical researchers and practitioners have been even less likely to look for the cause. At present, the debate about autism is stuck in a political spat about vaccines and our children are paying the price. While vaccines may or may not be part of the story, good science depends on being open-minded enough to put that aside. If a social scientist like me can see the links between families with allergies, autoimmune problems and autism, surely medical researchers can see this as well?

On a more personal note, it has been immensely empowering to find our experience echoed by others who care for autistic children. Since we removed diary and gluten from his diet and administered nightly enemas, our son has stopped waking up screaming at night, he no longer rubs his swollen eyes for hours a day, he has stopped rubbing his tummy on the edge of the table relieving the pain and the number of tantrums has fallen dramatically. While he is still autistic, he is no longer in pain and is starting to make real improvements. One day, I believe we will look back with horror at the way in which autistic children were left without the medical treatment they needed. Until the language game of autism has changed however, the treatment and services on offer will not match the need. While the theory that unemotional mothers caused their children’s autism has been replaced by the more benign theory that autism is a behavioural disorder, both severely limit the services provided. Without dealing with the causes of autism we are only ever able to manage and ameliorate the symptoms of the condition. It is imperative to direct more money into research that genuinely looks at the causes of the autism epidemic without a watchful eye on the ideological perspectives of those funding the work. In so doing, parents will be a key ally, and I hope any would-be researchers will feel inspired to work with us in breaking new ground.