MY recent article for TCW on the SEN crisis swallowing schools stimulated some vigorous debate. While a good number of readers endorsed my argument that something serious is going on when it comes to the rising demand for Special Educational Needs (SEN) support in our schools, this was not a universal response. Several people challenged my argument that the rising numbers are real. They argued that having special needs was a ‘bandwagon’ giving individual students ‘kudos’ and allowing their parents to secure the advantages of extra time in exams and/or access to the benefit system. Furthermore, they pointed out that schools are given extra payments for the special needs kids and there are advantages in allowing children more time and support to do better when it comes to exams.
I can understand this response. Of course it is reassuring to think that the problem is largely fictitious and more imagined than real. A headline in the Daily Mail gave just that comfort. ‘This is the REAL cause of the explosion of autism and depression: Top psychiatrist Dr Alistair Santhouse delivers his damning verdict . . . and reveals the only answer’, it read. And it was that autism is but another example of diagnosis creep.
A couple of weeks ago Radio 4 had daily readings from a book which makes exactly this point. In The Age of Diagnosis, neurologist Suzanne O’Sullivan argues that we have an epidemic of over-diagnosis rather than a real epidemic of chronic disease. Her book has been widely and positively reviewed and covers the rising incidence of an eclectic mix of conditions including Huntingdon’s and Lyme Disease, cancer and autism. She highlights the remarkable increase in numbers of people being diagnosed with autism in the UK, citing a 787 per cent rise in just 20 years between 1998 and 2018. She suggests that this must be due to ‘over-diagnosis’ as people are more able and willing to attach themselves to the label of Autistic Spectrum Disorder.
Yet in making her case, O’Sullivan reports on the experience of a young adult patient she calls ‘Poppy’ who reported that her diagnosis of autism helped her make sense of her challenging behaviours and negative experiences. The label gave her a better understanding of her struggles to fit in, her challenges in reading social cues and inability to make good relationships. For Poppy, the diagnosis was real and she found peace in explaining her problems as being a result of her Autistic Spectrum Disorder.
I have had similar conversations with people identified with Attention Deficit with or without Hyperactivity Disorder (AD(H)D) which has similarly increased in incidence and impact. Rates in children are now estimated to be as high as one in 20 with queues for assessments that are backlogged for years. Talking to parents, they describe their children’s problems as real. Indeed, it is entirely possible that the rising incidence of special needs in our schools is real while it also incorporates a broader spectrum of individuals with a wider range of challenges. There are growing numbers of children with severe autism and behavioural problems including my son as well as those who appear to function more successfully but struggle with social interaction, communication and relationships. As one of the commentators suggested somewhat flippantly in response to my post: ‘It’s as though every child has special needs of some kind’. Preposterous as it sounds, maybe this person is on the right lines.
If these behavioural issues, however, are a result of changes in our environment and our general health, in ways that reflect our inheritance and exposure, we might expect this kind of differentiated outcome in children. More akin to a mass poisoning event that doesn’t affect everyone in the same way, we have been changing our environment with consequences that we don’t understand. Some of the responses to my post identified the extraordinary range of potential immune assaults that could be involved in our deteriorating physical and neurological health, including: anti-depressants being taken by pregnant women to be passed on in breast milk; pesticides designed to target the nervous system of insects which then enter our bodies; industrialised and poor-quality food that causes inadequate nutrition in mothers and babies; formula-feeding; lack of fresh air, sunshine and exercise; mobile phone use and electro-magnetism; family breakdown and stress; obesity; medicines and vaccination taken by mothers and children with compounded effects over time.
My son regressed into autism after having an MMR and Meningitis C vaccination on the same day when he was 18 months old. This triggered a cascade of immune problems that affected his skin, sleep, bowel, behaviour, mood and mental development. He ended up with the collection of symptoms that we call autism.
It might be that pressures on the immune system are responsible for all the cases of autism and related neurological disorders, albeit at different times of onset, with different triggers and to different degrees of severity. However, this conflicts with the official characterisation of these conditions and their oversight by the disciplines of psychology and psychiatry that focus on the symptoms rather than the underlying pathology.
Since its first identification more than 100 years ago, autism has been understood as a behavioural problem that manifests in early life. It first appeared in the third version of the internationally recognised Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1980 when it was understood to be a very rare developmental condition affecting a small number of infants and children at birth or in the first years of life. Revised again in 1987, the DSM changed the diagnostic criteria for autism and characterised it as a ‘triad of impairments’ comprising deficits in: (1) communication; (2) social interaction; and (3) behaviour, interests and activities that were unusually restrictive and repetitive. A further revision in 1994 (DSM-4) included a differentiation between high functioning Asperger’s and lower functioning autism with inclusion of an additional category for those affected by a late regression in skills. This was further changed in 2013 when the three categories were rolled into one under the label of Autistic Spectrum Disorder (ASD).
This latest reclassification in DSM-5 means that those who used to be diagnosed with Asperger’s syndrome or high functioning autism, some of whom can lead independent lives, are now given the same label as those who have very profound and complex needs. The changes have also occluded regressive autism or what used to be called Childhood Disintegrative Disorder (CDD).
Despite all these changes, however, the medical professionals who are responsible for diagnosing autism and other neuro-developmental conditions are still focusing on behaviour rather than underlying physiology and this is the greatest challenge affecting our children and all the families involved. If we fail to appreciate why neurological development is being disrupted, to whatever degree, we have no chance of preventing it happening in future. If we could reclassify autism as a physical condition rather than a behavioural one, we would focus on the underlying pathology and scope for treatment and prevention. While we battle over the boundaries of diagnosis, we neglect the much bigger question about what is causing the problem in the first place.
This article was first published on The Autism Tribune and is republished here by kind permission
In Part 2 tomorrow Jane looks at the failures of diagnosis and help – how children are routinely diagnosed and dispatched without any attention to the underlying health problems associated with the condition.
