Some days, being an autism parent is like living in a hall of mirrors.
On the one hand, there’s the simple fact that your child is disabled. It’s really very simple, as a fact. Hilariously, despite the very apparent presence of disability, many people genuinely try to convince you it’s not disability after all, but some fluffy gift from the benevolent gods of quirk.
On another hand, there’s the future. It’s an oddly cloudy mix of maybes and pleases and probablys and of courses. It’s slammed in front of you all the time – when policies change, when friends celebrate life transitions, when family do what family do, when a child somewhere perishes in the face of life pressures they don’t understand… because they have a disability, or a gift (whichever).
In another hand (we are in a hall of mirrors after all), there’s the ever present question ‘why?’
There isn’t much in life that so confrontingly mixes viscera and emotion like childbirth. Maybe death. Maybe the odd violent hangover where the responsibility for your actions burns as you hurl it into a suitable receptacle.
Parenting is highly emotional and highly practical at the same time. The whole experience is based on hopes and promises, even though the practice is all about ancient wisdom and established routine. There are no guarantees, that’s for sure. You get what you get, no matter how consciously you sign up.
But there are lots of days where I wonder why so many people got autism. What did we do, individually and collectively, to bring on a wave of autism diagnoses?
Yesterday, I listened to a woman on the radio talk about the rise of type 1 diabetes among children in Australia. She said the trends and the analysis of those trends makes it abundantly clear that we (humans generally) are causing this – that a combination of genetic factors are combining with environmental and social factors resulting in the medical condition we call diabetes increasing in children.
And as I was listening, I kept on thinking, why can’t we acknowledge this about autism?
Why is our current autism research (especially in Australia) not focusing anywhere close to this?
Instead, we seem hell bent on pretending it’s either not happening, it’s the trendy choice of over-protective and under-realistic parents or it’s a random fall of some dice that none of us knew we were throwing?
As a parent, as a person who had the great privilege of meeting someone lovely and making a conscious decision to bring another human being into the world, just as a human being… I really want someone to stand up and seriously look at why my child is autistic.
I’m willing to help find an answer. I’ve been working my ring off up until now, with limited success, so I’m thinking smarter heads could prevail.
It’s not identifiably genetic, in our case. The geneticists are very clear on that.
It is heavily medical, in our case. Our bank account will attest to that.
It’s unlikely to be a gypsy curse, as I am not a gypsy, haven’t had my fortune told and have never owned a black cat.
What did I do, in my life?
What did we do?
What did people around us do to contribute?
What did my mother, her mother, my father, his father do?
What could we all have done differently in order to avoid an eventual diagnosis of autism in my son?
It’s a fair question. It’s a fair set of questions. And in my mind, until we all start to answer them, we are never going to make any progress in preventing autism.
It starts with us.
We need the doctors, or the politicians and the academics. But it starts with us. Without acknowledging our responsibility, without understanding our responsibility, it’s almost impossible to know where to go next.
I’m not talking about feeling guilty or blaming ourselves, I’m talking about doing what you would do in any situation where something has gone wrong. And yes, FWIW, I believe having a child with a disability isn’t an ideal outcome. It’s one I accept with everything I have, but not one I would choose if choice were possible.
I’m talking about sharing experiences, asking questions, and expecting reliable advice to find answers.
Every day, ten new studies are publicised that shine a light into some corner of life that may be relevant to autism causation – maternal antibodies, thyroids, epigenetics, vaccines, nutrition, pollution.
Every day, people who do not believe those studies reflect their experience or view of the world, deny the relevance of those studies. Then every next day, people turn on each other, claiming their ideas are bogus and they are variously uneducated, blind to reality, hoodwinked, brainwashed, dangerous (insert your own thoughts).
And in the middle of it all, are our kids. Once well, now not. Treasured and valued. Inexplicably disabled.
Can there ever be a point where this generation of autistic kids cease being a political, ideological, intellectual, virtual football?
Do we even want to fix this?
I do, because it’s not a theory for us, it’s a stark scary reality. I do, because my son’s prognosis is not getting better, it’s getting worse. I do because parenting is a big enough job for anyone, without adding a giant hulking ‘stand by for repeated surprise smacks on the metaphorical head’ to the list of jobs.
I hope there will be a time soon where I can play an active part in de-footballing my son, and many kids like him. I hope in the process of doing that, I can protect future kids from being unnecessarily disabled. I hope that when I do advocates for disability rights and public health and nutrition can put their own agendas aside and listen.
This happened to us. It happened to lots of people we know. We don’t know why it happened.
We have no reason to make up lies. We have every reason to want to know more about what happened. We have every reason to want to know how to make it better. We should care about preventing it happening to other people.
We are at a point in history where the provision of autism related services and the positive portrayal of autism have been promoted as the most important autism related issues. While there’s no doubt those things are crucial to people living with a current diagnosis, it is bizarre to me that they have been actively used to obscure the process of understanding what autism actually is.
We have put the cart so carefully in front of the horse, that it’s hard for the casual observer to know there is, in fact, a horse.
It’s bizarre to me that we are not collecting data from families of currently diagnosed children about their life choices, their families, their medical history. Worse, we are not listening when people try to articulate their experience. Instead, we are telling families that what they think happened, did not (could not) happen.
There are other points in history when similar things have happened in relation to the health of children. To be fair, when a lot is at stake, it probably makes sense to turn a blind eye. An open, analytical, intelligent and compassionate eye would see way too much.
In my mind, we are letting our kids down. We are letting ourselves down. It might be hard to face whatever reality we uncover in terms of autism causation, but where we are now is no bowl of cherries either.
We’ve done awareness. We’re doing acceptance.
Now, let’s do why.
So the next generation can leave the horse and cart behind and get around in one of those flying cars The Jetson’s had.
If you are willing to tell your story to Australian politicians (in person, on video or in writing), PM me at Information About Autism on Facebook and I’ll send you some options. We’ll collect people’s stories and present them after the election. All stories welcome, international perspectives carry a lot of weight at this end of the world.