The autism mass observation campaign: parents versus the state
My Dad had a wonderful stock of old-fashioned phrases to capture the everyday activities of family life. We were advised ‘to put a lid on it’ if talking too much, ‘to stop being a lemon’ if being an idiot, and ‘to stop crying over split milk’ if we were making a fuss. When out on trips in the countryside he’d tell us to ‘keep your eyes peeled’ and we grew up spotting wildflowers, insects and mammals. We were encouraged to look and learn; giving names to everything we were able to see.
Since having a child with severe autism I’ve often thought about the need to keep your eyes peeled. It’s the prime task of the autism parent 24/7. We monitor the behaviour of our children and try to keep track of the triggers that worsen the allergies, constipation, sleeplessness, self-harm, anxiety and distress. We are necessarily hyper-vigilant about food, noise, pollutants and environment, and the impact they have on our kids.
This grassroots mass observation campaign conducted by autism parents is oddly detached from the response of the state. While parents report the devastating regression and the links to immune dysfunction, neurological damage and psychological disorder, the official view is ‘it’s just one of those things.’ The organs of the state charge their staff to carry on with business as usual. Forms are filled in, services provided, and payments made. The banality of bureaucracy rolls on and no-one asks any questions.
Having a child with severe autism forces you to engage with the state for the rest of your life. As I have pointed out in previous posts, we have had to deal with 27 different arms of government over the past 20 years, each providing a different kind of support, all paid for from national or local taxation.
On the one hand, this is remarkable. The welfare state really does step up to support the people who can’t look after themselves. Although the calibre of staff and the quality of the services vary enormously, there are now thousands of people involved in a growing ‘industry’ that I’ve called the Autism Service Delivery sector, that costs the taxpayer billions of pounds every year.
On the other hand, this is crazy. Why are we not asking WHY we have so many children suffering from such severe psychological and neurological disability that they require life-long support? What’s more, why is no one asking the same questions about all the other disorders afflicting our children; the dyslexia, dyspraxia, ADHD, ADD, allergies and depression? My husband and I have repeatedly scratched our heads to try and understand why the professionals are so complacent about the existential disaster unfolding in front of them. Why do they behave as if this is normal? Why do they appear to not see what we see? Why are they not jumping up and down to sound the alarm?
When you step back from your own experience and think about society at large, the mystery gets even bigger. The welfare state is being crippled by the cost of autism and no one in authority appears to see what is happening. The health service has ever-lengthening queues of people wanting a diagnosis. Education services are finding it impossible to provide sufficient places to keep up with demand. Universities are struggling to provide the welfare support needed for higher functioning adults with autism to complete their courses. The police, courts and prisons are also severely impacted. And this is on top of the benefit payments that cover the loss of earnings for parents as well as those due to their children, for life.
I often wonder about the people at the top of these institutions. Why do we not hear them sounding the alarm and demanding that something is done? Do they choose not to see? Do they fear upsetting people and appearing uncaring?
And likewise, the politicians that have sanction over the cost of it all. Do they not see this as a disaster? Do they not want to reverse the decline? How can this be?
I used to think it was just us autism parents and our children who suffered from institutional and professional ‘blindness’. I used to think it was something about autism and the link to vaccines that prevented professionals from facing up to what was happening. I assumed they kept quiet in fear of losing their jobs. I thought we were the kind of collateral damage that people suppress; they don’t want to talk about it for fear of having to act. I rationalised it by thinking of autism as the public health equivalent of landmines or cluster bombs in a war.
However, I’ve come to realise that this kind of institutional blindness is endemic. It’s not just autism; professionals are failing to see the bleeding obvious all over the place. Over the past 20 years British society has been rocked by a series of scandals, each of which prompts a public inquiry which reveals systematic institutional failures and publishes a long report which recommends ways to do better next time. Prominent cases that come to mind include the Post Office that imprisoned people for doing their jobs. The police and social services staff who turned a blind eye to thousands of young girls being raped, for fear of stoking racism. The council staff who failed to apply basic health and safety standards in the cladding applied to Grenfell Tower in London. The British Broadcasting Company (BBC) that failed to spot the intolerable crimes of Jimmy Savile that went on for years. The repeated inquiries held into National Health Service (NHS) failures, most notably at Mid-Staffordshire Trust and the Tavistock clinic, but ongoing in every location. And perhaps worst of all, the churches that have failed to safeguard their flocks from systematic sexual abuse.
It is impossible to have confidence in any of our national institutions to do the right thing. People on the ground must be experiencing wrong-doing, and in a minority of cases, they are reporting it, but the institutional leadership prefer to ignore it, brush it under the carpet, or lie about it at length. So how can this be?
First, having worked in a university for more than thirty years, I know that the gap between the grassroots and the hierarchy has widened. Most of the managers running our institutions have no connection with day-to-day service delivery and they fail to appreciate how hard it is to do a good job. As the hierarchy gets bigger relative to the shopfloor, managers have less collective insight into what is happening and what needs to be done on the ground.
Second, institutional gaps allow the hierarchy to report up rather than down. Managers and leaders are much more likely to follow the latest requirements of funders and campaigners, be it government ministers, philanthropists or social movement activists, than they are to prioritise the needs of their staff and clients or customers. How else can you explain the obsession with progressive causes such Diversity Equity and Inclusion (DEI) or Net Zero when basic services are poor, failing or even collapsing?
Third, there are very few people who care sufficiently and are brave enough to speak out. It takes great courage to raise the alarm and risk everything at work. What’s more, if you think that the hierarchy are unlikely to respond positively, there is less incentive for challenging them. It’s easy to feel the machine is too big and nothing will change, reinforcing an uneasy compliance with poor institutional standards and lack of free speech in the workplace.
Fourth, we also lack tribunes in the community who are able and willing to call out institutional failure as they might have done in the past. As discussed in relation to the ‘Leicester Method’ adopted for controlling smallpox in the nineteenth century in a previous post, local activists were supported by locally elected councillors to find an alternative method of disease control. The leaders of local institutions – such as churches, trade union branches and councils - were witnessing the negative effects of vaccination on children and families and they acted together to find an alternative. As local civil society organisations have declined in the twentieth century, local leaders are harder to find and less connected to their communities than they were in the past.
The Autism Tribune aims to call out what is happening in our institutions in relation to severe autism, but I don’t expect change to come easy or fast. The organisations comprising the Autism Service Delivery sector are heavily invested in the official narrative that ‘everything’s normal’, that ‘we are better at spotting it’ and are ‘more inclusive than we were in the past.’ Even as they see the number of clients go up, the severity of cases increase, and their ability to deliver diminish, institutional leaders are not incentivised to call anything out. They can leave the problems to the workforce, they report to government and bodies like the Royal Colleges who endorse the official narrative, and they are rarely troubled by tribunes from the shopfloor or the community who try to raise the alarm.
At some point, the institutions will be overwhelmed by the crisis they have failed to recognise and actively endorsed, but in the meantime, we need more parents to speak out about what has happened to them. As I wrote about in an earlier post, autism parents in America have now broken through to the political mainstream, and we are starting to see change that will reach the rest of the world. As the sense of change becomes more tangible, some professionals will start to speak out and they will be able to share their observations of the autism crisis.
In this regard, it is salient to remember that the pioneers of autism research relied upon careful observation in characterising the condition when it first appeared in their clinics. The seminal research papers comprise reports of small numbers of patients who presented with a combination of behaviour that was unlike anything encountered before. This work provided the stimulus for further research and understanding of the condition that we now call Autism Spectrum Disorder (ASD).
Theodore Heller [1869-1938] first identified six children with what he called Dementia Infantilis in the early twentieth century. All of them had what we would now recognise as regressive autism that took hold in their third or fourth year of life. His paper, published 120 years ago, in 1908, described the children’s behaviour and their developmental trajectories, including his thoughts about possible causes of the condition.
Leo Kanner [1894 –1981] first identified 11 cases of children thought to be born with what he later called Infantile Autism. He similarly presented detailed case histories and tried to find common features across the group, making this his life’s work.
Andrew Wakefield [born 1956] and colleagues published their findings into 12 children with autism and a previously undocumented bowel disorder (which they called ileal-lymphoid-nodular hyperplasia and non-specific colitis) in 1998, calling for additional research to be done.
The much-lauded and often abused ‘scientific method’ has always relied on careful observation and documentation, with research findings being written up in relation to the state of knowledge in the world at the time. Although science is increasingly based on complicated statistical analysis of second-hand data, our kids would benefit from a return to old-fashioned observation and analysis of the records that already exist. Community level research would be a relatively easy way to keep track of the onset of neurodevelopment conditions, looking for trends and finding causes across the population over a long period of time. We need to be able to assess the cumulative impact of experiences within and between generations. We could easily incentivise our doctors to keep their eyes peeled, to look for trends and report them openly, rather than making them fearful of speaking out and losing their jobs.
Autism is now affecting everyone. It is present in almost every family in the UK and has major implications for taxpayers and the whole society. While the institutions that should know better are currently obfuscating the scale of the problem, the pressure will inevitably build for them to change their perspective. This pressure will come either from within as their own staff report on their observations and demand action or more likely, from without, as developments in other parts of the world embarrass institutional leaders and politicians, requiring a change in direction. Either way, us parents need to keep peeling peoples’ eyes whenever we can. The health and well-being of the next generation depends on it.