Pink moon rising: Who’s there for our son?

One of our son’s favourite questions has always been ‘Are you there?’

Some days he’ll ask you over and over again.

I always reply the same way: ‘You know I’m here, right next to you as usual’.

If you stop part way through the answer, he’ll finish it for you. He wants to be sure that you’re next to him, today and everyday. I pray that it will always be that way.

We’re in the phase of the rising moon now - the pink moon is coming - and as ever, our son has been building up to its peak by talking non-stop and sleeping less. He becomes more autistic and at these times he doesn’t ask the existential question so much. His brain is too busy to check whether we’re with him or not. However, it’s at these times when the question becomes more pressing for us.

Having a child regress into severe autism makes you rethink what it means to be human. Our son’s humanity changed course during the second year of his life. He stopped developing into the person he was born to be and became someone else. We don’t know how this happened but it manifested in new anxieties, strange behaviours, eruptions of his skin and blockages in his bowel. There was a profound disruption in the biological processes through which cells reproduce, specialise and adapt, responding to the changing chemical messengers and molecules that attach to or permeate their membranes, directing their development and making a human. In our son’s case, this was subtle yet deadly. He appeared to be the same beautiful boy yet his mind and behaviour were changed. We know his soul is still there. You can feel its presence when he looks into your eyes. You can hear its echo when he asks you ‘are you there?’ But at the same time, he has lost something of the humanity he would otherwise have.

Homo sapiens have become successful through the power of language, story telling, social organisation, the creation of culture and transmission of knowledge. Severe autism takes these super-powers away. Our son can articulate or indicate his need for food, drink, care and affection but he lost the higher-order human capacities that come from language and communication and that underpin our success.

I used to teach a postgraduate course in community organising and we’d go back to Aristotle’s Politics to think about the basic need for human beings to collaborate to make a life together in families, communities and entities as complex as nations. More than a ‘beast’ and never a ‘God’, human beings require social organisation and political deliberation to facilitate the best of our nature. As Aristotle put it:

“Man is by nature a social animal; an individual who is unsocial naturally and not accidentally is either beneath our notice or more than human. Society is something that precedes the individual. Anyone who either cannot lead the common life or is so self-sufficient as not to need to, and therefore does not partake of society, is either a beast or a god.”

It is no coincidence that people with autism are often described as being holy and somehow closer to God or as bestial and worthy of incarceration. Severe autism takes away the things that would ordinarily comprise what it means to be fully human: language, communication, socially-appropriate behaviour, empathy, an ability to collaborate and to learn. Something disrupts the development of this aspect of our humanity.

In the age of autism, we are further suffering from an autistic response to autism. Aristotle’s beloved public realm is being shut down. The spaces for political discussion and deliberation - the Aristotelian polis - are now tiny islands vulnerable to submersion from a rising tide of political certainty. The debate about neurological damage is stymied by the neurological damage that has already been done. If you question what is happening you are either pitied or silenced, but never heard and debated in a more human response. This furthers the collective injury we are already inflicting on ourselves. Rather than saying ‘Yes, we know something has gone wrong, we need to understand it and try to fix it’ we are told to ‘shut up’ (and usually it’s put less politely than that).

It has always amazed me that so many of the so-called ‘experts’ in autism have reinforced this dominant view. They have excelled in appearing to do something useful (describing the behaviours, looking at eye movements or trying to find an autism gene) while reinforcing the status quo. From my son’s perspective, they are not really there. They are there in name and grant only. Mopping up funding, churning out papers and failing to get to grips with the truth and injustice of what has gone wrong.

We desperately need a new cohort of experts to take a more fully human approach. Going back to the early papers in the field, I’m always struck by the humanity of the work. In Heller and Kanner there is a human pathos permeating the texts. We hear stories of children and their families, and efforts to make sense of what has happened to those who are so unlike the ones who came before or after. In Heller’s paper, written more than a hundred years ago, there is a commitment to understanding the children and listening to their parents describe what happened to them. We hear about possible mercury poisoning due to a wet nurse having treatment for syphilis. We hear about a child who had a head injury. We hear Heller pondering the strange grimaces, postures and anxieties that afflicted these children. We recognise his human response to the pain expressed by the parents, many of them doctors, who put their children into his care.

The pink moon is a time of rebirth after winter, named from the colour of the pinks that flower at this time of year. In Cornwall where we live, the coast is carpeted in sea pinks or thrift that sparkle in the sunshine and signal the arrival of the full moon that comes before Easter. This is a time for reflection, revisiting old wounds and finding redemption. As I wrote a few posts ago, it’s the time when Jesus asked God to forgive his people because ‘they know not what they do’. Autism is a reminder of what can go wrong when people put their faith in the false Gods of progress with a certainty that shuts out doubt and censors free speech.

Just yesterday, the White House announced its commitment to funding rigorous research to investigate the causes of autism. This is testament to all the parents who were there for their children. Who never gave up on them, and kept looking for answers. They built a movement and supported a man who is now in a position to act. Easter is the perfect time to reflect on this journey and to pray for success. Doing so means we are there for our children and our children’s children and the future of humanity.

Thanks for reading. Please let me know what you think.