Riverside thoughts in early 2022, sitting with Janus
So this is my second entry in my series on autism. If you haven’t already read my first instalment entitled ‘autism for me as a teacher’, make sure you have a look at that one as it’ll give better context to this entry I’m currently mulling over. The links are on my page/bio!
I can instantly feel that in writing this entry, I will inevitably strike a few chords from my past, stuff that I used to have trouble talking about or even acknowledging, but I feel that this is all part of a necessary, cathartic process. Make no mistake, as a child, I truly struggled with my autism - I still do at times now! I can honestly say hand on heart that I don’t really remember being ‘self aware’ before my late teens or early 20s; while that period of my life can wait for another blog, I suppose I should start from the beginning. I often used to host workshops and open-classroom events when I was a teacher back in Italy; over time they came to be known as ‘The Story of English with Daniel’, and I would often talk about history in general as well as linguistic history and word etymology. Almost every time we would look at something, I would often come up with a particular favourite quote of mine: ‘if you want to understand the present, sometimes you have to delve into the past and go back to the beginning’. Now, the moment isn’t wasted on me as I apply that very maxim to myself and my journey as a young man ambling along the autism spectrum.
Sometimes I recall a story my mum often tells about me as a young child, it’s a story about how I was visited by some kind of ‘child analyst’ whose job it was to analyse young kids and their social abilities, let’s say, pertaining to certain age groups. She often recounts it as me being ‘very advanced for my age’ (I would have been 2-3 at the time); in fact, so advanced that I ended up doing the next age group’s test and scoring well on that one, too. She says that I was a very expressive, loud baby; I had this ability to make all sorts of different noises that most wee bairns of my age simply couldn’t. It’s an interesting start to the story because perhaps someone without any prior knowledge of autism in children might instantly assume that there would have been difficulties from the onset. Not in this case. Autistic children are, in my view, extremely gifted in many different, unseen ways.
I don’t really remember much about my early years which, of course, is understandable, but I have a vague memory of what it was like when my first sibling Darren was born. When he was born, he was a very quiet, sweet-natured little baby, in many ways a polar opposite to me. Of course, as a toddler that had been used to being an only child since the start, it was an odd scenario when suddenly another little soul came along and Mum and Dad tended to spend more time with him. Hindsight is a wonderful thing, and I can clearly empathise with my younger self at that time: I was obviously jealous and envious of all the attention that my little brother was getting, rather than me. I’m sure this is a story that has been told for countless generations. We were both very different as children, too: Darren was a quiet, lovely little boy, relatively stress free compared to me. There’s no question that I loved him (and still do!), but as an autistic toddler trapped in my little head, I couldn’t understand the world around me. I was often a very naughty little boy doing extremely bad things. I did things like strip the wallpaper off of the walls, pull the curtain rail off the wall, jump through my cot because I was jumping so excitedly on it for hours, even smash things up in a temper tantrum (more on that at a later time). I don’t once remember being aware of myself in these moments, but maybe you’re thinking that that’s normal as you were just a kid…which kid is truly self aware, after all? Well, you may be right there.
The thing is with autism on the whole is that children on the spectrum don’t do things in the way that ‘normal’ children do; a common example of this would be with ‘normal’ kids naturally picking things up through social interactions and/or simply by watching, then copying what they have seen their peers doing. That wasn’t the case for me: I struggled with a lot of these things. It’s also funny when I think about these things because now I am 33 and I am the eldest of five brothers, two of which have both been diagnosed as autistic in some way or another. The third sibling Jay was born in 1994, and I fondly remember what it was like in the mid-to-late 90s having a small, fat-faced baby around the house all of a sudden. I used to love making him smile and giggle (something I’ve never grown out of with any kids, really). I recall that when Jay was diagnosed as being autistic sometime in the late 90s, my mum was in tears in my bedroom the same day after we had just got back from the doctor’s. I didn’t understand at the time, of course, but now, almost 30 years later, I can only imagine what she must have been going through at the time. You see, in the late 90s, autism was a relatively newfound thing; there was nowhere near as much awareness and chat about it as there is now! It was still a blurry area, a bit of an uncomfortable, taboo-like subject. Times must have been hard for our mum because she was a young mother of 3 boys under the age of 6 whilst our dad, bless his grafting heart, was always working 6 days a week, often driving up to London (about a 4-hour commute every day there and back) to work as an electrician and earn what he could to feed his young family. Dad told me once that when we were young boys, he wouldn’t see us in the mornings because it was too early, then he wouldn’t usually see us in the evenings because we had already been put to bed. Now, as an adult, I can only imagine how frustrating that must’ve been for him at times as a young father. The other thing to throw into the mix is that our father is also on the spectrum, although has never been diagnosed. He was born in ’61 and there would certainly have been no concept of ‘autistic’ or ‘in need of special help and understanding’. It would’ve simply been a case of ‘he’s a bit simple at times’ and a smack round the back of the head if he was lucky. Thank God that times have changed and continue to do so, that’s what I think!
With Dad also being on the spectrum, you would have thought that that could have helped, but no one was aware of it at the time, least of all Mum and Dad! For Dad, I guess, he would’ve just been ‘normal-ish’ in his own eyes, and Mum would’ve loved him dearly but not understood his ways and issues. You can imagine the dynamics of the house when we were kids! Somewhere in between a father and two sons on the spectrum, you had Mum and Darren who were the relatively ‘normal’ ones, with all of us jostling for attention and love of some kind in what was at times an angry and confrontational household. Perhaps this is somewhat tangential to the original argument, but I’d like to paint an accurate picture of my childhood for you, the reader, to be able to better understand what I’m building up to.
When I think about my relationship with my mum when I was a child, she was very loving and caring, although, in her own subsequent confessions, she struggled to understand why I was being ‘such a naughty boy’ a lot of the time. She admitted that she struggled to cope with me and, at times, didn’t know what to do with me. Again, as a grown man now, I can only empathise with her and how that must have made her feel; part of me wants to apologise for how I was, but another part of me thinks that I was just a kid, an autistic kid, so I didn’t know any better. Maybe there is no longer any room for this ‘blame culture’ and it’s a case of understanding and appreciating what we learnt from it all and making peace with it. As I mentioned before, my dad was often away from home with work, so it was seemingly almost always down to Mum to parent us, try to guide us, teach us things, and so on - at least, it seemed that way at the time. One of her oft-maligned ways of keeping 3 rowdy boys under control was to rule through fear. Now, I don’t want to give a bad impression of my mum or make out that she was some kind of monster, because she wasn’t, but I can now understand why she may have acted in the way that she did. I wasn’t allowed to use the kettle or toaster by myself until I was a teenager. That might seem like madness when compared to your households, but at the time, that was a reality for us. Why did she do that? Well, I’m fairly sure it was because I was so unpredictable as a child, I might have done something daft like stuck my fingers in there, or, more likely, hurt one of my younger brothers inadvertently, then blamed someone else. You see, autistic children don’t automatically pick things up, as I mentioned before: we aren’t good at naturally ‘getting it’, or reading between the lines, we’re not good at taking hints, or reading body language. It doesn’t come naturally to us, so I guess I must’ve been an around-the-clock nightmare when Mum was trying to run a house, feed us, bathe us, control us, and so on. She is very much a different person now, much calmer and less highly strung, so I imagine she would do things very differently now, but we’ll never know until she has some grandchildren to test her patience! I think it’s also important to consider how much of an impact my behaviour must have had on my two younger brothers: I’ve only ever really seen it from my own suffering viewpoint, but for them it must’ve been so frustrating at times. Above all for Darren who was by and large a ‘normal’ boy that was more often than not inhibited by his mad older brother’s erratic behaviour and the universal restrictions that followed.
When pushed to think about my relationship with my dad, it’s quite a different story. Again, I’m sure there have been countless tales since the dawn of time of sons wanting to gain their fathers’ approval, yearning for their trust and love. My story has a similar theme. My dad and I are in many ways very similar as adults: we like history, sport, a couple of cheeky pints, amongst other things. We also function in a very similar way and observe many similar things that most people would simply overlook. Autistic people seem to be able to remember the most irrelevant pieces of information, or the most insignificant yet whimsical memories of events. For example, Dad has never forgotten one man that we used to occasionally drink with and ended up playing on the same team as us for a Pub Cricket Team match a few years back. The man in question took Dad’s cricket ball with him after practice one evening (who knows whether or not he meant to) and Dad has never forgotten it; every time we mention this man’s name, it’s instantly the ‘man who stole my cricket ball’! Anyway, that is of course an account of how alike we are now as grown men, but it was quite a different situation when I was a young boy. I think, in my dad’s defence, I was a very annoying, loud and needy young child, but….which child isn’t, right? But I was annoying, I know that for a fact. Perhaps, in my defence, there was a distinct lack of understanding of an autistic child fumbling and blundering his way through every single day as though nothing really mattered.
One of the most striking and poignant memories I have of my childhood is the instance in which my dad would be angry with me: I can remember countless times when I would be in my own little world, deep in my head, thinking about something to do with my toys or wherever else my creative imagination took me; suddenly, my dad would come into the room angry with me because he’d been calling me. Because I hadn’t answered him, he had had to come upstairs and fetch me, or get me to do what he wanted me to. He often used to say that I was ignoring him, or that I could hear him and I was just being ignorant, followed by a few choice words. Of course, I know that wasn’t the case, and my pleas of innocence fell upon deaf ears in the end. For all I knew, the world could’ve crashed down around me - I was off with the fairies…!
Another instance of our relationship was when I would crave being around him, I would try to gain his approval and so I would loiter whilst he was working on something in the garden. Dad has never really been able to sit still and watch telly, he’s not built that way; instead, he has always been either out the front or back garden, mending, fixing, building, or cleaning something, come rain or shine, whatever the weather. One recurring memory is of him sending me into the labyrinth that was his garden shed in order to fetch a specific tool. Now, for anyone that is autistic or has an autistic relative, you might be thinking that this is an autistic person’s idea of a nightmare! Often, autistic people have real trouble remembering short-term things, and particularly struggle with being given instructions, especially long-winded ones (makes me think of my brothers Jay and William). It almost always ends up in a mess, or, more accurately, what I like to call a ‘mind-blank moment’. Anyway, he sent me into the shed to find, let’s say, the ‘medium-sized chisel without tape on the handle’ - I actually shudder at the thought of attempting to look for something like this now all these years later!! I walked into the towering shed, looked around, forgot what he had said, panicked because I couldn’t go back to ask him to repeat for fear of his temper, then panicked some more because I realised that I would indeed have to go back to him and confess my failure, then to face his wrath. Everything played out as I had feared it would, then I was shouted out, a few F bombs here and there, then I went off feeling utterly crestfallen with my tail between my legs. What’s more, I then usually went indoors and unconsciously took it out on one of my brothers (usually Darren) and then my mum went nuts and the whole vicious cycle was in full flow again.
This scenario with my dad is one that has played over and over in my head for years; I eventually tried thinking about it in a mature, objective way sometime in my mid 20s and came to the conclusion that this affected me more deeply than I had ever been aware of. Indeed, I developed a kind of ‘I’m not good enough’ complex in myself which would go on to decimate my relationships with many people for years to come. Thankfully, I have made peace with the hurt and pain of a lot of this now, and I feel stronger and wiser for it. It could even be said that without those harrowing experiences as a young boy, I might not be writing this blog now.
It is, of course, only fair of me to both empathise and thus show how much my dad has changed since the late 90s: he’s quite a different man now in many ways, much more mellow, much less angry (due in great part to his fabulous wife, Claire), he’s a very different father with the two young boys he has had with Claire, too. He is very patient with them, more understanding with them than he likely ever was with the first three, more laid back, and, most importantly, has seemingly allowed love to enter his heart, rather than hate and anger. The way he is stems a lot from his rough childhood with his disciplinarian and brutal father, but that’s not my story to tell.
Anyway, I think it’s also important to say that Dad has become much more self aware when it comes to autism, and he often wears it as a badge of honour like I do. Through his growing awareness and self acceptance, this surely has helped him to be a good father to our two youngest brothers, William and Edward the Younger. Another thing I’d like to say is that Dad is very much a doer and not a talker, he’s not one to sit down and have deep chats about things, per se (although he’ll certainly ‘talk’ at length about the decline in refereeing standards in English football!). What’s more, he has always inspired his boys by being a man’s man, by being a grafter, by being a salt-of-the earth type; a fountain of knowledge when it comes to DIY, gardening, or keeping animals, we boys ought to tap into that as much we can, while we can.
When I think about my own experiences as a young, autistic boy, it leads me to think about my younger brothers and their experiences of it. Jay is 6 years younger than me and, as I noted before, was diagnosed when he was still very young. He might argue that the diagnosis never really helped him, that’s for him to say, not me. What I will say though is that we, as a family, have struggled a lot with him over the years, no one more so than me, perhaps. For many, many years, Jay and I didn’t get on at all because I would spend most of my time getting wound up with him about his ways, his behaviour and his inevitable defensive mindset. I never understood it at the time, I wasn’t so aware of myself, but something suddenly clicked back in my late 20s; I had started to make peace with my own past and my own previously confusing nature, which meant that I didn’t look to constantly pick on people or embarrass people due to my own shortcomings. That’s something that I did with Jay for a long time, and, naturally, he simply didn’t want to be around me.
Regardless, as I made peace with myself, I realised that one of the biggest reasons why Jay irked me so much was because he was so similar to me in so many ways, so it was like a metaphorical mirror being held up to my face anytime he was in the room. It dawned upon me that I could and should actually be more empathic and compassionate with him, that I should try to help him if I could. I still often crack the same joke whenever I introduce him to someone when I say that he’s a ‘younger, hairier, more autistic version of me’, to which he usually retorts ‘…and better looking’! We are incredibly alike in our manner, and we share so many mutual interests, so it felt natural to me to try and help him understand why he is the way he is. We’re quite lucky in the sense that we have a unique relationship where I can tell him in a tactful, constructive way of how he comes across at times. Sometimes I’ll text him because I haven’t heard from him in a while (I’ve often been abroad somewhere over the last 11 years), and I’ll ask after him, and so on; most commonly, I’ll get a short message back with him directly answering the one or two questions I’ve asked, and nothing else. The thing is, an autistic person will see it like this: “I’ve been asked how I am, so I’ll tell them how I am; I’ve been asked what I’m up to, so I’ll tell them what I’ve been up to”. They will see things in a very ‘black or white’ manner, and they won’t read between the lines and naturally understand that someone is messaging them because they miss them and want to spend some ‘time’ with them; rather, the response is usually: “They didn’t say they wanted to chat, how am I supposed to know?”, and thus this is where frustration can be born. It’s something that he still struggles with at times, and perhaps always will do until he becomes a bit more self aware. Anyway, I’ll endeavour to support him as best as I can, make no mistake.
There are so many more things I could write about here, but they’ll have to wait for another time and another entry. My hope is that in sharing my story of my experiences and struggles with autism as a child, we in turn might become more aware of it as it is very much an invisible way of being that gets overlooked as ‘daft behaviour’, or such like. To all the people that have given me such wonderful feedback so far, I’m truly thankful to you; I’m also grateful to those that have reached out either privately or publicly and shared their own accounts of their struggles with autism, either with themselves or through a relative/child of their own. It’s easy to sit back and listen, but it takes courage to sit forward and speak, so thank you….
D
x
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