Death-Cure.

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.

By Madison Guy

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.

And yet.

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.

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22 Responses to Death-Cure.

  1. dq74 says:

    Wow, this is incredible. Thank you so much for sharing this on your blog. You write beautifully, as always, about an very emotive topic. I truly love your approach of being honest with your son, as well as encouraging his appreciation of all that life presents, and will present.

  2. Sharon says:

    This is EXACTLY how I feel. I love this harder than hard stuff.

  3. dixieredmond says:

    Good for you, mom! You are having conversations with your son that I wasn’t able to have with my son at that age. It is still hard to discuss in an understandable way now.

    That word cure brings so many implications to the table, doesn’t it? This is where the rubber meets the road about how we view autism and how that may affect how our developing children see themselves.

    Do schools have videos about people with Down’s syndrome, diabetes, cerebral palsy, etc? There are real challenges. We can’t gloss over that. And people who dispute that there are challenges are telling a harmful untruth. But I wish there were a way to approach this that didn’t single those on the spectrum out. Obviously, I’m still thinking all this through.

    • It’s a good point dixieredmond; no I don’t think they show videos on other disabilities (as far as I know anyway), perhaps these issues should be approached in the broader sense of accepting difference in its many forms.

      Thanks for your thoughtful comment.

  4. jimreeve says:

    You’ve touched on two of the hardest things a parent could ever explain to their child. Yours seems to handle the topics very well. My son says that he doesn’t have autism. And when we try to explain death to him, he usually disengages and changes the subject. Great post to get readers thinking.

    • Thank you jimreeve.

      If you don’t mind me asking, I was wondering how old your child is? He must have some appreciation of what autism might mean for him and what death entails, if he’s that resistant. I ask his age because I wonder if my son might change his attitude too as he gets older and has a deeper appreciation of what is at stake in these discussions.

  5. Jessica says:

    This is perfect and so incredibly stated. I have always wrestled with helping my daughter to see only the positive of autism and she has grown into her own understanding of it. Overall she is confident in herself and happy but there are things she wishes were different so that life would be easier. She would never wish her autism away though, which makes me a happy momma.

  6. Hilary says:

    He will make his own way and decide things for himself just as every child growing up into an adult does, and his attitude to his autism and disclosure of that will probably change over time and vary according to circumstance. I would not worry about the fascination with death (if that is what this develops into). In my experience this is a common interest particularly of teenagers and adults with autism, and this includes sudden and violent death – but it is just another special interest topic. Their frank questions and blatant interest can be shocking for adults who are not at all comfortable with the topic.

    • Thanks Hilary. I’m not particularly worried about his interest in death – he’s been interested in it for a very long time and I know he loves life – I was just shocked that he used death in reference to cure. We’ve always been very honest and open about the certainty and finality of death; like all things with my son I aim to be someone he can come to for truth and guidance, rather than someone who blocks his enquiries. I try to balance that with age-appropriateness of course, and with what is in his general best interests. Parenting is never easy is it!

      Thanks for commenting.

  7. Joel P says:

    Thank you for posting this, but with all due respect, I wonder whether your shock and fear was misplaced. Based on the endless conversations I have with my 10-year old Aspie, and my thought process as a child (never diagnosed with anything, but I wonder), I can very easily see your child’s comment as simply being his attempt to figure out a super difficult logic problem (“Nobody has figured out how to cure autism! Can you?!?”).

    It is of course shocking and frightening to hear our kids muse about their own deaths, but I have found very often that the most important thing I can do to be an effective parent and advocate for my son is to recognize when my own thoughts, needs, hopes, desires, fears, etc. prevent me from seeing things from his perspective. I really don’t mean that as criticism, and I’m not glossing over your totally justifiable concerns, because as a fellow special-needs parent I really know how quickly and completely the world can fall out from under your feet. It’s just my advice to help you find some peace on this journey, because that peace in and of itself will benefit you AND your son.

    Your son figured out a “cure” for autism. It sounds pretty clear he know it’s not a cure he or anyone else wants, but he beat the impossible game! Congratulate him on his clever problem solving and keep on doing what you’re doing, because he sounds like a kid who is grounded, secure, and loved, and who you are helping to develop a deep understanding of the world and himself. Kudos, mom.

    • That’s a very thoughtful response to my post Joel, and a really valuable consideration. I understand what you’re saying.

      The “incident” brought important issues to the fore of my mind, and forced me to think further about the importance of how he and I view autism, and I think all those musings are still worthwhile and of import; so even though you may indeed be right about his actual thought-process (and you probably are), I still think the issues raised remain worth considering.

      Thank you for sharing your insights and perspective, and for your kind words about how I’m raising him :)

  8. Alyssa says:

    That death is the only cure- I’m not surprised he came up with that. It’s a phrase that I’ve seen many Autistic people use in relation to a lot of the quack cures that can be fatal. I don’t think that’s what he was actually thinking about, since he probably doesn’t know about those, but it’s a thing that people do say to make the argument that we shouldn’t be trying- the only way it could work is if it killed us.
    So I guess I’m wondering if his thought process might have been something like that? Seems possible, especially if he’s been thinking about autism as a thing that’s a big part of him and that that’s OK. (Big and only are different/We all have multiple defining features and being Autistic is among them, but not the only one.)

  9. Niksmom says:

    I have no insightful commentary to offer except to tell you how fascinating this was to me to read. My son has no concept of death or cure or any sense of permanence at this point in time. Your son’s approach is interesting. I, too, wondered if it was simply a problem-solving approach rather than any kind of emotional response about autism. I think you handled it really well. I suspect I would not have! Once again, your posts give me much to think about.

  10. Akbutler says:

    I am trying to formulate a coherent comment but I can’t because this post was just what I needed to read today and all the thoughts are swirling in my head. We have struggled with how to talk to our son about autism – all the thoughts brought here are why this is such an intricate conversation for us to have. Thank you.

  11. Blogginglily says:

    Good read.

    I remember having a conversation with a buddy of mine when his NT daughter was in her early teens. His biggest fear was suicide…that girls her age were taking their lives over their “problems”…hormonal and emotional, they didn’t see the finality of the decision and it scared the shit out of him.

    Good conversation to have with him.

  12. Ictus75 says:

    Your son is wise beyond his years. He is quite right, that since there is no cure, Autism is for life. We will only be free of it when we die.

    I love the way you handled it, because your son obviously sees this in a matter of fact way. Thanks for sharing this.

  13. Suzanne B. says:

    I offer another way to “cure” autism–when your child is alone, doing what s/he loves, then s/he is for that moment in time “cured.” This concept was presented by Tony Attwood at a conference I attended, emphasizing that autism is a disorder related to social interaction. Of course, he was being intentionally provocative in order to challenge the audience to take another look at their assumptions about what a person with autism is experiencing. But I see his point in many ways–my 9yo son is happiest when he is doing what he loves without criticism, redirection, interruption or intervention from what we NTs would prefer he do at that moment. Obviously, it requires that he’s in an environment that isn’t overstimulating, so in that sense autism is not only about social interaction in my son’s experience. But sometimes my son wants me involved in what he’s doing (assuming I’ll follow his direction exactly), sometimes he’ll include his dog or cat (works best when he just needs an audience!), and other times he is perfectly content doing it without anyone else present. Attwood’s perspective is that in that moment the autistic individual is cured of autism, because we aren’t putting society’s social imperatives, expectations and demands on the individual. Something to think about. I wonder if your son “feels autistic” when he’s alone doing what he loves?

    Our conversations about how my son is feeling usually focus on specific situations or are in relation to his ADHD and stimulant meds. But your post encourages me to check in with my son about autism and how he’s feeling about it these days. He recognized himself as having Asperger’s after watching an Arthur video in which a kid has Asperger’s. (see: http://www.youtube.com/watch?v=iq-VhfVwqp4 but don’t read the horrid comments by people who don’t know anything about ASD!) Thanks for raising this new topic.

  14. Nice site. I recently at 30 found out I have Aspergers. I just “followed” your site, feel free to check mine out! – Great site! Part of my blog is also comedy, but with serious subjects too (latest one is just a review of survey sites, but that’s just a one time post. Also stuff about living with Aspergers). I’m following your site now and check me out at http://laughatmypain.wordpress.com/ (shameless plug!)

  15. furrcats says:

    That is true I will not have autism in eternity that does not make me susidal

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