It has been a difficult few weeks.
Master J has been struggling. With life. On many levels. And when he struggles, all of our lives become like trying to remain afloat on a rickety boat thundering down water rapids.
Year 11 is such a complex year to get through. And so is being nearly 17.
Anxiety fuels everything, even without the autism thrown into the mix. Those wretched hormones play havoc with our need to belong, our need to fit in, our need to be independent. The internal conflict that rages within the teenage body mixed with a dangerous cocktail of hormones is a recipe for disaster.
As parents we try to help him navigate the landscape. Mostly we succeed. Sometimes we don’t. This is our reality. Much like the reality of any household with a teenager, but perhaps a little more on speed than most because his brain is wired a little differently.
This week saw the advent of Autism Awareness Day. I am a little conflicted with this notion.
What is the purpose of Autism Awareness Day? I have yet to find evidence of it being about including these children, with all of their idiosyncracies, for what they are – humans – fully into society. Instead I read of how we should celebrate children with autism, on this one day a year; or I read a different take on the day by pushing how we should be raising more awareness so that a cure can be found. The autistic community is at loggerheads divided by the notion that autism is a disease that should be eradicated versus a condition that is incurable and should be accepted.
Master J believes that autism is not a condition, and that autistic children are not disabled. He says that the idea that they are disabled is a construct. He should know, he is the autistic one. He believes, with all his heart and all his soul that they are the next step in evolution for the human condition. They are the specialists of the world that will need them when the shit hits the fan. And, he believes, the shit is going to hit the fan. It is humanity’s way of preparing, he says. This is why, he says, autism is on the increase. It isn’t a world gone genetically wrong, it is a world preparing itself. It is natures way of creating specialists that will move this world forward. The generalists’ days are numbered. Frankly, judging by the way the way the world is making a right royal fuck up of things, I am inclined to agree.
So it is with some anxiety that I read article after article that parents are striving to find a cure for their children’s affliction. I can’t imagine wanting to cure my son. I am saddened listening on the radio to the parent of a newly diagnosed autistic three year old who is holding a fund raising benefit so that a cure can be found in order that their child will lead a normal life. What does that even mean? What is normal? Does normal mean that we want them to conform and be like everyone else? Does normal mean that we need to change them so that the world, as fucked up as it is, will accommodate them? I am saddened when in the same interview an adult with autism is urging the parent to not speak in those terms, to accept the autistic child and love them and to find the strengths in them, urging the parent to work to creating a world that will accept them, but the parent struggles to see past the disability. For me, there is no getting away from the fact that autism and my son are one and the same thing. I cannot separate one from the other without losing who my son has become, nor would I want to.
I tire too of the constant rhetoric that we, as parents, but especially as mothers, are meant to celebrate our autistic children all the time. There is a great deal of discourse in the autistic community which says that we should celebrate every waking moment of the autistic child’s life. We don’t do this with neurotypical children – let’s face it, teenagers are prone to be feral little shits at times – so why do we place this pressure on parents to celebrate their children’s every waking moment simply because they have autism? It’s indulgent and it’s insulting. It is also extremely damaging, setting up the parent and the child for catastrophic failure. There are times when I am unable to celebrate my son. In those moments when he is unable to communicate to me his feelings and frustration on the world and lashes out instead verbally abusing anyone who will come within earshot. No, I don’t celebrate him then. I can’t celebrate him when he is crippled by anxiety and fear and is suffering so badly from sensory overload that he has a stinking great big meltdown that is very difficult as a parent to control and deal with, where we are both left reeling in the aftermath, shaking and exhausted.
What I do have is compassion and love. He is flawed as any human is flawed. I accept him for the human that he is. I fight for a world that will accept him as a human being. I don’t fight for a world that will accept him as an Autistic child. To me, he is just Master J. To me he is funny and kind and brave and frustrating and bewildering, as any child is to a parent. To me, he is a child, a teenager, trying very hard to make his way in the world, to find a way of living independently in a world that is not geared to him because he doesn’t fit the worlds’ ever changing definition of normal.
To be honest, as a woman, a stay at home mum no less, I feel exactly the same. I live in a world that does not accommodate women very well. And especially not stay at home women who, you know, choose to stay at home, and not earn an income. How many times in my lifetime have I had to the field the question “so what do you do?” and when I reply “I am a stay at home mum”, I am met with a glazed look of unintelligence. People are so brazen and judgemental that they have had no issue telling me that I am lazy, that I am anti-feminist, that I have give women a bad name, that I am lucky that I married so well, that I should do much more to help the family (I presume they mean financially because that is clearly a marker of a well balanced, well adjusted family). If, however, I reply “I am a full time carer to my autistic son” I am greeted with looks of admiration where I have been told that the government should do much more to help mothers like me. When I tell them that I don’t take government aid (because, you know, I married so well), they treat me like I am a saint and crazy for not taking the available aid (which as a side note, is ridiculously woeful).
In this way, among so many others, Master J and I bond. And we talk about that a lot. How the world doesn’t accept huge cohorts of the population, how it doesn’t cater for them, how it is geared to make life more difficult for them. For he and I, we lament those systemic faults in our society. Together. United. Not separated because his brain is wired differently to mine. We agree that it is Human Awareness not Autism Awareness that is needed.
So, this week, I haven’t been celebrating Autism Awareness Day, nor have I been lamenting the idea that more should be done to cure these children. I have been living life. With a grumpy teenager. Whom I love very much.
Until next time,