My son is autistic, I am not, but neither am I neurotypical. I’m not a fan of the term “neurotypical,” I don’t find it meaningful or helpful. I’ve analysed and attacked its use before, so I won’t retread that path. This post is an illustration of sorts, and a very personal one. An illustration of the absurdity of the term neurotypical, but more importantly, an illustration of the simplicity and distortion in this claim: That because I don’t have autism, I can’t understand my autistic son.
Autism, as it’s currently defined, is a cluster of symptoms. Some causes of autism are known, many are not. Diagnosis is symptom based though, and I lack the number and intensity of symptoms to meet the diagnosis. I am not autistic. But…
Water scratches my eyes. The sensation of water running over my eyeballs is painful and distressing. In the shower I put a lot of effort into avoiding the water falling anywhere near my face, if I get water in my eyes the pain will force me out of the shower in desperate search of something to remove it. I can handle water – even heavily chlorinated water – on my eyes, if they are fully immersed before I open them, but water running over them is horrible.
I thought everyone felt this way, it never occurred to me until I was an adult that this might be unusual. I thought everyone else was just braver than me and better at hiding the pain. The ads and movies where people stood in showers with water running over their face always made me cringe and feel uncomfortable.
So when my autistic son complained of it hurting when water got in his eyes, and panics around water on his face because it might get in his eyes, I understood and I empathized and sympathised. I get it. I’m not autistic, but…
I have debilitating anxiety at times, at its worst it forms into a panic attack. Growing up I didn’t know it was a panic attack, I didn’t know what to call it. I thought I was just me being more fearful than other people and that I needed to stop being so “precious.” Nights of nerve-shattering dread and not even knowing what I was afraid of. Terror so forceful that I felt folded in on myself, somehow unconnected and overly-connected to everything around me. As an adult I learnt calming techniques through the experiences, in particular I learnt that seeking intense pressure from someone or something, across my entire body, helped me to calm. The more squashed I was – the more unable to breathe even – the calmer and more even my breathing and heartbeat got, until I felt in control again. I learnt other calming techniques too, relaxation methods that also help.
So Temple Grandin’s squeeze machine for the purposes of calming an anxious body and mind, makes intimate sense to me, as does my own son’s calming response when we pressurize his joints (shoulders and hips especially). So I get and understand that. I’m not autistic, but…
There have been times in my life where I was so obsessed with repetitive actions that they disturbed my daily life and would get me in trouble. I felt compelled to do certain actions over and over, even though I knew they served no function other than to feed an endless loop; doing them didn’t calm me, but not doing them did upset me. I had routines that had to performed in certain orders, I even made up rhymes to say to myself to keep the order right. If the routine went wrong I couldn’t focus on anything else until it was corrected. These behaviours were at their worst as an anxious teenager. As an adult I am more aware of these proclivities and that they emerge when I’m under stress, I’m much better at managing them with sensible strategies (like using meticulous lists, and talking things through with my husband), so they no longer negatively impact my life.
My son too has repetitive and obsessive behaviours, which I try to help him find ways to manage so they don’t negatively impact his life, ways that reflect the meaning and function of the behaviours in his life which are different from the function of my own. I am not autistic, but… (last one!)
I feel like I’m faking this socializing thing. I feel like my childhood was made up of fluked friendships. I was always suitably surprised when I ended up with a best friend, and I always doubted that I deserved it because I wasn’t sure what I’d done to get one in the first place. I even had one best friend who ended up in tears, pleading with me, asking me why I couldn’t just see that we were friends, that I didn’t have to act or feel like I didn’t deserve her. Inevitably all my friendships would fall apart for one reason or another, I found it hard to maintain friendships, they felt un-natural even though I enjoyed having people to talk to and be around. It was like I knew what to do in theory, but the practice never turned out the way I thought it was meant to.
These days, as an adult, I actively and very consciously work to build and maintain friendships. It is still hard, but I do enjoy the encounters that come from friendship, and I feel better equipped to do and say the right things. I am driven particularly by the fact that it is in my son’s best interests that I create friendships with other parents with children. I also have a much better understanding now of how important friendships – and not just acquaintances – are to the work environment.
So I see my son struggling to make and maintain friendships. I see him wondering how to make it work, and wanting it to work, but sometimes just preferring his own company in a way that very few children his age do. He has it much harder than I did, there is no doubt of that at all. But I see traces of myself in his concerns and challenges. In this. In all of these things. He is, after all, my son. Born from my body, there is no closer connection between two humans.
So when someone – some stranger on the internet, and these strangers run numerous highly vocal and popular Facebook sites and blogs – when these strangers tell me I can’t truly know my son like they can, because they have autism and I don’t… When they tell me I can’t understand his challenges because I don’t have a diagnosis… When they tell me I am “neurotypical“…
When they tell me I am “privileged…”
When they say my voice is less important than theirs and they can speak for my son better than I can..? Than the woman who birthed him, raised him, has spent every day of his life watching and learning about and loving him?
They are wrong. And I shouldn’t have to say it, because they should never assume to know someone else’s neurology or life experiences or life challenges. I have tried, in many posts (such as this) to explain when neurology is key to an argument, and when it is not. Because sometimes it matters, and sometimes it just doesn’t.
I am not autistic.
But neither am I neurotypical.