My son said something about autism, that shocked and frightened me. After it was said and the incident was dealt with, I tried to decide if it was the sort of thing I could or should share on my blog, knowing full well that it could be twisted and taken the wrong way. Two weeks later, I have decided I’ll share this. I can only ask that you read carefully; there are no demons here, just an innocent seven-year-old boy who thought he found a cure.
After school one day, my son’s teacher gave me a DVD about autism. She said they were going to show all the students the DVD to teach them a little about autism, since the school had a fair few autistic children and they thought this DVD represented a gentle and appropriate way to explain autistic difference. She let me borrow the DVD over a weekend, so that I knew what the children – including my own son – were going to watch, and to make sure I felt comfortable with it, considering it was relevant to my own son’s school experience.
The DVD was alright. It was pitched at about the right level, and it focused on autism as difference rather than as deficit, whilst also highlighting the particular and various challenges autistic children face everyday. There was a sort of FAQ section at the end, where a scripted student asked the presenter common questions about autism and the bubbly presenter answers the questions. One of the questions was why don’t autistic children just get cured, and the presenter replies that there is no cure, then they go to the next question.
My son made me show him the DVD twice. He wanted to know what “ASD” was, I explained it was another word for autism, which is a term he is familiar with already in relation to himself. He is quite settled with the fact he has autism, as far as he understands autism; he sees it as making some things harder, and some things easier, and if anything, is quite proud of this special difference. And I’m settled with him seeing it in that way.
He tried to tell me he wasn’t like the children they were showing on DVD in certain parts, and I said that was right, because there are different types of autism and for some people it affects them more than others, and affects people in different ways. He listened, he learnt, he seemed OK with it all.
I return the DVD to the teacher on a Monday, with my blessing that it seems fine, and with my thanks that they let me share it with my son first so he was aware of what he was going to see at school with his class mates.
Later that week the classes were shown the DVD. Although my son had already seen it twice, there was something he wanted to discuss with me about it.
First, you need to understand that my son is interested in death in an abstract and highly inquisitive way. This is something I’ve written about before; if you haven’t read that previous post, I would encourage you to do so to appreciate the type of interest my son has in death. It is not a morbid interest, nor a “personalised” interest; he doesn’t want to be dead, quite the opposite, he has told us multiple times that he wants to live as long as possible and he is very keen to make the right decisions to that end. He’s decided he will never smoke, he will drive carefully, he will eat and drink the right things, he will stay healthy and take care of his eyes and ears and every other part of himself, inside and out. If anything, his interest in death stems from his love of being alive. Keep that in mind.
My son’s question raised by watching the DVD was about cure. He says to me, autism has no cure. I say, that’s right. He says, there is a cure. I didn’t know where it was going. And then he said it. He said death was a cure. I missed a beat, I think my mouth actually dropped open. I studied his face for any sign of fear or panic or realisation of what he’d just said, but he was just my smiley thoughtful boy, sharing something he’d figured out by himself.
I gathered myself quickly enough to reply that that’s not a cure, because a cure takes something away but leaves the person alive. He did listen to my answer and think about it, but he almost looked cheated by my reply, like he was proud that he’d figured this cure/death thing out, and I was just twisting things around. I told my husband what our son had just said while my son quietly mulled that over, and my husband piped up with the same response I’d had: Death is not cure. My son thought about it awhile more before going back to playing on the couch. My husband quietly assured me that what my son had just said didn’t hold the deeper horror for him, as it did for us as parents; at its core, that our son was not at all thinking about death as a cure for his autism per se, he was just thinking out loud about what he’d heard on the DVD.
My son knows he has autism. He now knows autism can’t be cured. He thought that meant the only “cure” would be death. But he either didn’t think to the next step of linking his own autism with the cure of death, or – and I think this is the real key – he doesn’t see autism as some devastating horrendous condition that he should be trying to remove from himself.
And I thought to myself at that moment, that I would never let him see it that way. I could never let him feel that something he can’t get rid of, is something that must be fixed, and that only death can fix. Whatever the rest of the world might feel, whatever I have felt and do feel, I can’t allow him to see autism in such a light.
The academic part of me wants him to never ever think of autism as central to his identity or as some enormous part of who he is at his core, for just this sort of reason: I don’t want him to give a label that type of power over him. I don’t want others’ opinions of what autism is or is not, to ever have the power to shape how he sees his unique self. I want him to focus on the decisions he makes in his life, as defining who he really is, not to think that he is predetermined or determined by what someone wrote in a Manual that changes every decade or so. He is more than autism; this is not a denial of autism, or of the nature of autism, it’s just an important fact about my son. Just like I am more than female, more than European, more than anything I was born into, though they are part of a more complex and rich whole.
The mother in me knows my son isn’t going to get those refined distinctions, for many years. And he may choose to see autism as some hugely defining part of who he is, and I accept that too; we define ourselves, he is the one living with autism, if he comes to see it as central then that’s his personal truth. So in those intervening years, and in the face of him perhaps choosing one day to see it as defining him, I must work to make sure that he sees autism in mostly a positive light. I know I can show him the harsher realities of autism whilst maintaining the overall positivity of it, because that’s where he currently is in his understanding of how autism affects him; it’s a matter of maintaining and supporting that view.
Not only would doing so protect him from such horrendous thoughts as death as cure, but it can also more generally help – I hope – to protect him from depression and fatalism and giving-in (the same things I wish to protect him from by hoping he will not come to see autism as central to his being).
How I personally see and experience his autism, is of secondary importance here. Everything I learn about autism is aimed at his own good. My interest in autism at all, is solely because of him. He brings me to autism. How I see autism is hugely affected by how severely and horribly it impacted on his early years, I can’t (and won’t) forget that horror. No metaphor gives it justice, but living through it I felt like my son and I were trapped in a black hole with slippery edges, and nothing either of us did to get free of it ever got traction. It was pointless agony, until it wasn’t.
I’m not going to deny that, anymore than I’ll deny the pain of childbirth or the joy of breathing in the scents of my baby boys while they fed. These things are my story too, my reality, the life I lived. Sharing my pain and challenges and triumphs around autism have made me feel a lot better and more positive about my son’s autism; I feel stronger and supported and understood when people read what I write and share that they relate. I think some people read the negative things parents say about living with autism and condemn the parents for saying these cruel truths out loud. But if we don’t say them, they’re still true anyway, and many people like me feel enabled and empowered when we can share. It’s not about being cruel or self-centred, it’s about being human and being heard, and all the positives that come from feeling not so alone anymore; positives that can (and do, for me anyway) flow onto the child.
So how do I reconcile all this with the need that my son see autism as predominantly a positive thing, when that doesn’t match my experiences so far? How do I protect him from my truth?
I think I can only do what all parents must do, I tell him what a boy his age needs to know about the world and about himself. I don’t bury him in adult and parental burdens, he’s not ready, and when he is ready for deeper discussions on the nature of all types of autism, then he’ll be able to handle this. When I became an adult I learnt a lot of things about both my parents that I didn’t previously understand or appreciate, and about the horrors and beauties of life too; being able to deal with truth (and truths) is something an adult can handle better than any seven-year-old. I won’t lie to my son, but I will find the good and safe side to every bad thing he must learn about, and keep that beautiful mind of his open and hopeful.
He doesn’t need to know how hard it was to raise him, yet, and maybe ever. And when he does find out, he will already know that other truth: That I have always loved and wanted him. Always. That I loved him and love him and will love him, until my own death. For if death is the cure of autism, then death is the cure of love too.
Nothing will take away his autism.
Nothing will take away my love.