I’d like to write a post about why I don’t care about the causes of autism. But I fear that it would probably turn into a Sisyphean task. There are too many thoughts in my head, many of them unfinished, and so much I could say. The words may just come pouring out, jumbled, endlessly streaming… There’s a sea of thoughts which I’d like to put in writing, but I can’t see a beginning, nor an end.
Still, I’m going to give this a try. I’ll tip my brains out onto the page and see what happens. Maybe it’ll make sense to someone, lol. It won’t be complete or final in any way (remember Sisyphus), more like a snapshot, or a spillage if you like, of some of my thoughts on this right now.
I say ”right now”, as this changes with time, and may continue to do so. It certainly has changed a lot for my hubby, Penguin’s dad. For a long time, he wanted to know WHY. Why was our boy autistic? Was anyone to blame for this? But with time, his perspective has shifted. He’s not really bothered about what may be the cause, he thinks it might just be an evolutionary variation, but either way it doesn’t really matter. He says the only real problem with autism, is people who see autism as a problem.
I’m very happy that he’s come so far in what could be called his ’journey of acceptance’. I used to feel I was way ahead of him, but now he seems to have caught up with me, and perhaps even run past and ahead.
Sometimes though, there are sides to autism which make him uncomfortable, unhappy, irritaded… and then I occasionally wonder about his level of acceptance. But what about my own acceptance? Could that be questioned, too??
I think you can see now why I worried about writing this post… I’m exploring my thoughts as I write and I don’t quite know where this is leading. And this isn’t really what our blog is about either, is it? I usually share activities, crafts, recipes, days out and other things we get up to in this home educating life of ours. So why do I feel the need to write this rather random post on why I don’t care about the causes of autism?
Actually, before I go on to answer that (if I can?), I’ll put your mind at reast about the length of this post: I won’t allow it to be endless, or even close to. I’m going to set myself a limit of 1500 words. What hasn’t been said when I reach that limit will have to be left for another post (or remain unspoken). And I’m already coming up to just about 500 words now, so you’re almost 1/3 of the way through it already. Basically, if you’ve put up with my ramblings this far, you might as well read the whole post. I think I might even become a bit more coherent along the way…
[Disclosure: The total length of this post is actually 1892 words, including this disclosure. Sorry!]
So, back to the original question: Why do I not care about the causes of autism? Well, the simple answer is that it’s not relevant to me. Penguin is who he is, and I love him for being him, as he is. The difficulties which being autistic causes him are what they are, and we do our best to get around those regardless of whatever caused his neurological differences in the first place. The cause doesn’t matter.
Also, being autistic is not all about difficulties. It’s about having a different neurology, experiencing the world differently, for better and for worse. Some aspects of being autistic can be a gift. In Penguin’s case I can see the pure sensory joy which he gets from a lot of different things as one positive aspect of his autism. His appreciation of the present moment and the way he doesn’t seem to worry about anything outside of his immediate needs are two other traits which make him a happier human being than many others.
However, this is where the question of why I don’t care about the causes of autism becomes more complex for me, ironically. I’m not even sure it’s the right question, actually… Because, maybe I do care in some ways, after all?
Maybe one of the biggest reasons why ’I don’t care about the causes of autism’ is that caring about a possible cause is such a big faux pas? As a parent of an autistic child, I need to accept and embrace my child’s neurodiversity. To wonder about what may have caused it implies that being autistic is something negative (after all, causes of positive personal traits are rarely investigated), a flaw, a less desirable neurological variation, and something that should be prevented. If I show an interest in possible causes of autism, it could seem as if I’m not very accepting after all, and I may even get accused of trying to ’fix’ or ’cure’ my child. Not only would that be untrue, it could also land me in the firing line of some autistic adults, on the wrong side of a divide which sadly often appears between parents of autistic children and actually autistic adults.
For what it’s worth, please let me assure you that I’m not trying to ’cure’ my child, and I’m not trying to ’make him normal’ (whatever that is).
However, I am trying to help him as best as I can to reach his potential. And I’m hoping that eventually he’ll gain an understanding of risks that surround us in daily life and how to avoid them (don’t put batteries in your mouth, don’t jump out into traffic to avoid a dog, etc.). And I wish for him to become relatively independent and able to look after himself, not needing 24 hour support. If improved nutrition or gut health can help him towards achieving some of these things, then I’m interested. And if essential oils can help him relax more and maybe improve his sleep, which in turn could help with brain function (I know how lack of sleep affects my functioning negatively), then I’m interested in that, too. As I see it, this is not about ’curing’ or ’fixing’, it’s about supporting and helping.
And what I said earlier is still true: What caused Penguin’s autism isn’t really relevant to me. But still… if I’m told that there’s research which indicates that, say for example, a severe lack of zinc affects the nervous system in ways which could show up as autistic traits, then I would again be interested. Because although I’m not trying to make him ’less autistic’, I’d love to reduce the difficulties he experiences due to his autism. (By the way, I know that some will argue that his difficulties are due to developmental delays and that they are separate from his autism. But as I see it, Penguin’s developmental differences are intrinsically linked to him being autistic. It’s all part of his beautiful but in some ways also very troublesome neurodivergance.)
Another reason for why caring about possible causes is a faux pas, is that it could put blame on something or someone. As a parent, it can be very reassuring to hear that ’it’s nothing to do with anything you’ve done, there’s nothing that caused this, other than genetics’. We cannot be blamed for our genes. But just to imagine that environmental factors could play a significant role (along side the genetics, as some research indicates) can sow a seed of worry and make feelings of guilt grow. And thoughts of ’what if’ can sneak up on us, and threaten our often already strained mental wellbeing. The possibility of any cause being more than just genetic can be too overwhelming to even consider.
Now, I’ve only got just over 200 words left before I reach the limit I’ve set myself for this post, and I’m trying to keep myself brief. There are a few more reasons why caring about possible causes of autism can be problematic. One major issue is the risk of being bunched together with anti-vaxxers and ’tin foil hattters’ of various sorts. Things can get pretty sinister and dangereous around these people, of which many are parents and most are keen followers of pseudo-science. I like to believe that their misguided ideas of causes and ’cures’ stem from a deep wish to help their children, but when you take a stance against vaccinations you’re putting lives at risk. And when you put your child through ’treatments’ such as chelation therapy, that too can come with high risks, even death. And as for feeding children bleach, well I can’t even begin, it’s just too horrible.
Finally, as many autistic people as well as family members would point out, more resources are needed for supporting people living with autism. To see money being spent on research about causes, while being told there’s not enough money available for much needed support, can be infuriating and heart-breaking. And just as we reach 1500 words in this post, this brings us back again to my initial ’simple’ answer to why ’I don’t care’ about what might cause autism. My focus, my resources, my time and energy, goes into supporting Penguin as the person he is now. You won’t find me searching for causes of autism any more than you’ll find me watching X Factor or Strictly Come Dancing. It plays no part in my daily life. But if someone shares a video clip of an ’absolutely amazing’ performance on X factor, I might watch it. And if I happen to come across a report about research on what possibly causes autism, I may well read it. There is a fair bit of current neuroscientific research looking into how our brains and our behaviour, mental health, stress levels, etc can be affected by what we eat. Some of that research may be looking for causes of autism, but their findings can still be potentially helpful for all of us to understand more about, neurodiverse or not.
I guess my final point (for this time, until Sisyphus reminds me about not ever being finished) is that I’m not interested in playing blame games. I’m not going to blame anyone for wasting their time on watching X Factor, as I can understand it fills some kind of purpose for them even if it seems alien to me. I’m not going to blame people for putting time, money and effort into research which I don’t fully see the point of (this applies to research in all areas, not necessarily autism related at all). I’m not going to blame parents or others for having opinions or making choices which are different to mine (as long as they’re not obviously harmful). And I’m not looking for anyone or anything to blame for my son being autistic. I have no energy for that kind of negativity.
Most importantly, my son seems to be perfectly happy with who he is, and so am I.
Sensational Learning with Penguin 
This is a really interesting post. Like you, I don’t think I am very interested in the causes of autism, just like I’m not overly interested in the route causes of short-sightedness or hair colour.
But, I am very interested in how to support my son to be as content as possible. I don’t believe that wanting to ease our children’s paths in life is about wanting to change them. All parents want their children to grow stronger and to learn – that’s a big part of what life is for.
I understand why there’s a fear of people trying to make their children ‘less autistic’. There is certainly an unpleasant history of people doing just that. But, I don’t think that you’re doing that by wanting to help your child learn.
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Thank you! It’s funny that you make the likeness of hair colour etc, I was considering writing almost exactly that in my post 🙂 And I absolutely agree, helping our children learn and develop is not a bad thing, of course. But what if I change his diet because I think it might help him focus, will it look to others as if I’m trying to ‘cure’ his autism…? I always feel a bit wary of how I express myself and how it can be interpreted by others x
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Wonderful read. I don’t care what caused j’s autism. What I care about is the support that should be available and the understanding that should be embedded into our culture by now. I want to move forwards not worry about the past or give myself reason to feel guilt x
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Thank you so much! Absolutely, my aim is very much on going forwards (and the present) too. If someone finds out that there was something I could have done differently, it’s no longer relevant. But it might affect some aspects of how we do things from there on, possibly. It’s all about what is helpful and supportive, really xx
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I do cringe when I read about ’causes of autism’ or ‘cures for autism’ and both topics seem to be everywhere these days. But then again, I remember when I was first face with autism some 20 odd years ago and I was craving information. We can hope that most people are intelligent enough to work out what is actually useful and what is not, but sadly this is not always the case. I find it easier to just focus on exactly what my children need, not what I could have done, should have done, or not.
#mixitup
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Yes, I agree, it’s what my child needs now and in the future which is my focus, too. It’s only when studies about causes come up with findings which are relevant in that perspective, that they can be of interest to me. I feel that I can be curious about the neuroscience etc while still be accepting and embracing my son (and others) as autistic x
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I would imagine there is value in researching the causes, for future parents of autistic kids, but I hear your central point, that you are more interested in supporting your child, and helping him to reach his potential. A very interesting post. #MixItUp
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Thank you! Well, yes, and I think what I’m also trying to say is that I feel that I can be interested in the research even though I’m focused on the present and the future. As a parent of an autistic child, I feel that it’s not really accepted to take an interest in the research, as that can be seen as I’m wanting to ’cure’ my child. And autism is so intrinsically linked to who a person is, and we shouldn’t be trying to ’cure’ someone for having quirky personality traits (simplistically put as I’m trying to be brief here 🙂). But I can see that some of the research into causes may well come up with findings which could help minimise the difficult and disabling sides of autism (while still allowing for a lot of quirkyness – I mean, who wants to be ’normal’ anyway 😉). Thanks again for taking your time to read and comment x
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No problem. I really enjoyed the post and there was an authenticity about your struggling to express the conflicting thoughts you have around it all
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Thank you x
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This is an excellent post.
I’ve only been using this site since the weekend, but I’m already finding it a wonderful source of inspiration and encouragement, realising that there are MANY parents going through similarly challenging times.
Thumbs up from me 👍
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Thank you so much Rob, that’s so encouraging to hear! I look forward to reading more blog posts from you too, and hope that you’ll find good ways of helping and supporting your Ivy x
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This is an interesting read (including the updates on the word count!) I like that you have your focus, priorities and energies in the direction that you feel comfortable. It’s all about choosing your battles, but that is parenthood for you. Penguin is lucky to have such caring parents. #MMBC
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Thank you so much, Cheryl ❤️ We’re lucky to have such a sweet child, too! xx
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This post is amazing. I love how completely raw and honest you were. Sometimes it is scary to start writing a post when you aren’t sure of where it will end up. I do not have an autistic child, but my degree is in teaching and I taught some children with autism. I think so many times we are caught up in the why, but it usually doesn’t help with the now. Your son is very lucky to have you as a mother. #KCACOLS
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I think I’m lucky for having him 🙂 I’m no supermom, that’s for sure, but I think I’m doing okay by him, so far. Interesting to hear that you have some experience of teaching autistic children. I agree, the why is only of interest when it helps with the now. And yes, you’re absolutely right that it can be a bit nerve-wracking to start writing something when you’re not sure where the thoughts and the words will take you. It can also be very therapeutic though, right? Thanks again for you’re lovely comment xx
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I really love this post and I totally see your perspective. You love him for how he is rather than what he isn’t. Why does the “why” matter? It doesn’t and it wouldn’t change anything anyway.
you have a great attitude and it is obvious that you are a great mom.
#KCACOLS
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Thank you so much for your lovely comment! ❤️xx
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Well said X #mmbc
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Thank you xx
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That last line is absolutely perfect!!!
I think some of the best blog posts are those where we just vent onto the page….or screen. They’re so honest and true. This was one of them!! Thank you so much for sharing #blogcrush
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Aaw thank you so much!! It did feel very therapeutic writing it, as well as a bit frightening. And you’re right, texts written straight from the heart, with raw honesty, often make very good reads xx
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They do even if you do have to just squeeze your eyes shut , squeal and press publish!!!
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Haha yep! XD
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Love this post. You obviously love your son for who he is, rather than the ‘why’. Your last sentence summed it all up. It makes no difference why. #KCACOLS
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Thank you so much! Got something in my eye reading your lovely comment ❤️xx
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Totally get the thoughts behind this. We didn’t really get the idea of causes as the paed said it was currently thought to be genetic (as I was pregnant at the time that was interesting!). But I’m with you – whatever it was/is, I’ve got these gorgeous kids that I love to bits. Thanks for linking it to #kcacols and hope to see you again there!
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Thank you Ann! We too were told that it’s genetic, but having a genetic predisposition for something doesn’t always mean you develop it, as environmental factors play their part too. Either way, I can certainly understand how it must have been ‘interesting’, as you say, to hear this while pregnant. And yes, the love is certainly there just as much regardless, or possibly even greater, as I’m not sure I’d been quite as close to my child if he wasn’t autistic ❤️xx
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I’d say I’m close with all my kids but our neurotypical daughter tends to be far more independent that’s for sure! Thanks again for the great post and for linking it up to #spectrumsunday too! hope to see you posts there again from Sunday onwards 🙂
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Great post. I think we often hold back from the honest posts because we don’t know how they will be received. I’m always worrying about the terms I use and avoiding hot topics. But its really important to share how we really feel. I totally agree that I am not looking to cure my son in any way but if there are ways I can help and support him I am interested.
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Thank you so much, Jade! Yes, I too fear to say the wrong things, upsetting people etc… but at the same time, as you say, we should be able to air our thoughts and experiences. If done from the heart, with no malicious intent, it shouldn’t be met we too much upset, I hope. We can’t all agree on everything in life… And hopefully, these kind of reflective, honest posts can also be of help for others to read, maybe feel less alone..? xx
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Great read. I guess you could waste time wondering and researching why or how but at the end of the day your children are your children and we love our kids for who they are, no matter what that entails. #KCACOLS
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Thank you Becky ❤
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