Severe autism and the struggle in facing the truth

This third post for The Autism Tribune can exploit the frontpage headline in today’s Sunday Times (19 January 2025). The reporter that tells us a ‘Third of pupils now get extra time in exams’. The extra time is for students taking GCSEs and A levels at the ages of 16 and 18 respectively, and at least 15 minutes additional time is given to children in English schools who have confirmed special needs of some kind. The exam regulator has compiled the figures, highlighting that the rate has doubled in less than a decade. In 2016, 15% of students were given extra time and now the number is 30%, comprising more than 400,000 young people. It is likely that even higher numbers of students with special needs are to be found in primary schools, and they will be coming through the system in the decade ahead.

Although it isn’t mentioned, many of the children with the most severe disabilities who are educated in special schools will not have been registered to take these exams. As an example, our son was in a special school from the age of 11, and he never mastered writing his name. In his school of about 125 students aged between 11 and 19, there was no-one capable of taking a GSCE or A level and the curriculum was not even covered. Given this, the data are particularly shocking, providing another illustration of the scale of the neurological crisis affecting the next generation; about a third of the pupils who are intellectually and emotionally able to take examinations are affected by special needs in some way.

However, and as ever, the newspaper report equivocates about the basic truth underlying the data. We are told that the data could be real, but it might also be about parents ‘gaming’ the system. Indeed, the journalist points to the higher incidence of extra time being awarded to pupils in private schools, suggesting that this is about the sharp elbowed middle and upper classes securing fake special needs diagnoses to give their kids an advantage over everyone else. The fact that these private schools include specialist provision for children with significant disabilities such as dyslexia or anxiety, often funded by the taxpayer, deserves much greater attention. In addition, however, the fact that the extra time can only be awarded following the presentation of an expert diagnosis, additional meetings and paperwork submitted by the schools is only mentioned in passing. I imagine there are a few sad people who want their kids to be labelled as a way of gaining advantage, and that is likely to include those who understand the benefit system as well, but why would teachers tolerate the additional paperwork if it didn’t need to be done?

So, as ever, what could be a story about the special needs crisis is buried in ambiguity; it could be a problem but more likely it isn’t! In this case, it is to be explained as a product of economic inequality and class conflict, such that richer parents want to secure more advantages for their kids. More often, the dramatic increase in numbers of children with disabilities and chronic health problems is explained as a product of our society being more willing to recognise these conditions than we did in the past. Indeed, whenever I tell anyone that our son is severely autistic, almost all of them will tell me that we are so much better at spotting it than we were in past, even as with the same breath, they list all the friends and relatives they know who also have autistic children as disabled as ours.

Living with severe autism has taught me that human beings can interpret the same thing in diametrically oppositional ways and tomorrow’s inauguration of Donald Trump as President of the United States of America will demonstrate this better than anything. Some will feel joy and others despair.

In relation to the crisis in young people’s health and wellbeing, there are plainly more people affected by severe autism than there used to be - and our professionals in the health and educational systems must know this better than anyone - but most of us also want to believe that we live in a society that is more sophisticated and tolerant than it was in the past. The majority are happy to think that their recognition and inclusion of people with special needs is emblematic of the kind people we are: more knowing and compassionate than ever before. We like to tell ourselves that our society is more enlightened, even as the numbers of people with severe disabilities continues to rise, and the cost to society becomes ever less sustainable. We protect ourselves in progressive thinking, muffling the truth in a cottonwool ball of rose-tinted fluff. While it is hard to face the truth, it is also staring us in the face – as the frontpage of The Sunday Times, and many other news reports continue to do.

It has taken me a long time to appreciate the full importance of this, but the ideology of progressivism is blinding us to our own untimely demise. As Robert Nisbet put it in his famous book called ‘history of the idea of progress’, published in 1980: “no single idea has been more important than … the idea of progress in Western civilization for nearly three thousand years” (page 4). And while this idea used to be firmly anchored in the Christian tradition and the idea of original sin, providing limited space to acknowledge our limitations and failings (at least once a week), the more recent abandonment of Christianity has unleashed the full impact of progressivism. Our politicians and institutions are fully committed to progress, even if there is growing evidence of decline that they don’t want to address.

Before having a son with severe autism and trying to make sense of what has happened to him and so many others, I didn’t fully appreciate how the road to hell really is paved in good intentions. Our faith in science, technology and progress blinds us to what we are doing to our children and the other organisms that share our wonderful world and however hard, we have to start talking about this and finding a new way to think.