The Autism Tribune

Freeing the next generation from neurological harm

The Autism Tribune is a new Substack for sharing experiences and raising awareness about the impact of severe autism. It will advocate for investigation and action, galvanising the community and seizing opportunities for change.

The big goal is to ensure that our children’s children learn how to avoid the experience of severe autism and other neurological damage, before it’s too late. No successful community can stand by and watch the decline of the next generation. Parents have been leading the charge in raising concerns - especially in the USA - but we need a much stronger movement in the UK and to strengthen our global connections.

The crisis is real: My Mum (born 1935 now 89 years old) has two long-standing friends, one going back 60 years and the other 30. All three have grandsons with autism. Two of them are so severe they require life-long full-time care. The other has major problems relating to other people and wider society; they are intellectually able but social life is a challenge.

I am one of three siblings, all of us high achievers in life. Each of us has a child with special needs spanning autism, dyslexia, dyspraxia and depression. In my case, our son demands attention almost every minute of every day and night. He has no ability to converse and is unable to look after himself.

Walk into any primary school in the UK and up to a third of the children now have similar additional health and/or learning needs. What used to be rare in my generation is now ubiquitous; asthma, eczema, life-threatening allergies, autoimmune disease, personality disorders, self-harm, learning difficulties and autism. Indeed, it is likely no coincidence that I was seen as an unusually sick child at school, suffering from asthma, eczema and hay fever, and it is me who went on to have a son with severe autism. We are assaulting our immune systems and compounding the problem with each generation. A bit of sneezing or itching in childhood can indicate a susceptibility to severe neurological impairment in our over-sensitive kids.

It is the ultimate emergency for any species when it can no longer produce a replacement generation that functions as well as the last. Life expectancy, health and well-being are deteriorating in countries like the UK and America. And while conservationists are rightly hopping up and down about the future of lions and tigers and bears, and ecologists are mounting campaigns about the beauty of slugs, we remain silent about the imperilled health and success of our children. Why is this not seen as the biggest emergency challenge facing us all?

Worse, why are we told that autism is a gift and that neurodiversity is a wonderful thing? Why is our medical establishment not leading a mission to find out what is happening and do something about it? Indeed, why, when you ask the experts for an explanation, do they imply the fault is your own lack of acceptance for what is just ‘one of those things’?

The Autism Tribune is written by a mother trying to make sense of what has happened and contribute to building a movement that is powerful enough to get answers, focused on the UK, but connected to the rest of the world. It is written in part for our daughter (born 1998, now 26 years old) and her generation; they need to learn what is happening and what can be done, before it’s too late. The future of our species depends on what happens between now and the end of their generation. The trajectory suggests that our children’s children will be impacted even more than our own and it is hard to imagine how society can continue with the levels of intellectual and health impairment that are coming their way. This newsletter aims to reach a new generation before it’s too late to reverse the decline.

I plan to post about our experiences; to dig into the history of the condition; to feature the links to the immune system that are already identified in research; to expose the latest data on numbers for sober assessment; to highlight the costs of the condition (not least to local government in the UK); to ask why we are being asked to pretend this isn’t happening; and to get answers and ideas for action as soon as we can. I hope to make connections to pioneers already active on Substack, to find new readers, and make a call for action in the UK - connecting us up to what is already happening here and abroad.

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