MY son, as I described in Part 1, regressed into autism after having an MMR and Meningitis C vaccination on the same day at 18 months old. This triggered immune problems which affected his skin, sleep, bowels, behaviour, mood and mental development.
After waiting months to see hospital ‘experts’ we came away with a piece of paper confirming what we already knew – via Google! He had all the symptoms of severe autism. We naively expected the experts to have some insight into why this had happened and to investigate the obvious co-morbidities that were constitutive of his declining health and capacity. How naïve we were! Even now, newly diagnosed children are left without any follow-up investigations or support for their physical health – as outlined by the National Institute for Health and Care Excellence (NICE) and the not-NICE guidelines for children with autism.
Diagnostic overshadowing means that children with autism are less likely to be treated for associated health problems such as immune dysfunction, bowel disorders and sleep deprivation than is the case for neurotypical kids. In the 20 years since our son was diagnosed, a growing body of research has produced clear evidence that backs up our experience, but this has yet to filter into clinical practice.
Indeed, the parent-led charity Thinking Autism has produced a brilliant overview of the research evidence on co-morbidities in children with autism but this is yet to have any impact on the National Health Service experts and the guidelines issued by NICE. Research into the experiences of parents with autistic children undertaken ten years ago indicates that they are diagnosed and dispatched without any attention to the underlying health problems associated with the condition.
There is, however, a parallel universe of self-mobilised parents with special-needs children who are doing their best to buck the pronouncements of the professionals about the prospects facing their kids. Working with nutritionists and private doctors, parents have been achieving significant improvements in the wellbeing of their children with autism and other neurological disorders such as ADHD. Relatively simple changes in diet, bowel management and reduced exposure to toxins have made dramatic changes for us and many thousands of other parents and kids.
So in response to my critics, I would say it is best to assume that the diagnoses are real. They cover a wide range (a spectrum!) of challenges from social anxiety through to life-long disablement. Our key priority should be in finding out why this is happening and what can be done to avert it in future.
We know that the numbers of children with autism – from mild to completely disabled – are going up fast. Indeed, we know that at least a third of these children can be classified as ‘profound’ and are likely to require lifelong support. The Lancet Commission on the future of care and clinical research in autism held in 2021 first advocated using the administrative term ‘profound’ to ‘apply to children and adults with autism who have, or are likely to have as adults, the following functional needs: requiring 24h access to an adult who can care for them if concerns arise, being unable to be left completely alone in a residence, and not being able to take care of basic daily adaptive needs. In most cases, these needs will be associated with a substantial intellectual disability (eg, an intelligence quotient below 50), very limited language (eg, limited ability to communicate to a stranger using comprehensible sentences), or both’.
Based on our experience, autism is a condition rooted in the immune system which impacts on neurological development with parallels to other psycho-neuro-immunological conditions that involve regression of some kind, such as Parkinson’s and Alzheimer’s diseases, schizophrenia and Tourette’s syndrome. I was the most allergic child in my school in the 1970s (with asthma, eczema and allergies). I had antibiotics every year of my early life due to constant bronchitis. I went on to have a child with autism. His disability was triggered by vaccination but the weakness was already there in the dysfunctional immunity he had via my placenta and milk, in the disrupted microbiome he inherited at birth and in the pollutants he inevitably encountered in living today. We need to rethink our understanding of conditions such as autism and go back to first principles, to understand aetiology and triggers of the condition (the ‘why’ and ‘how’) rather than just the ‘what’ as has been done for the past 50 years.
Rather than debating whether the rates are real or imagined, it is much more important to challenge the dominant paradigm that deflects us from understanding what is really going on. It is only by finding out why and how the problems occur that we will be able to treat them and reverse their prevalence. While it is comforting to blame the problems on over-diagnosis, especially if you are responsible for SEN funding for schools, I would assert that the problems are real. We need to address the environmental causes as a top priority, before it’s too late. There is a danger that we spend the next 20 years stuck in the headlights of the diagnosis debate rather than shifting to the question of what is causing the problem. This is the quest of the Autism Tribune and I hope you’ll let me know what you think.
