Tyger has been lining things up a lot recently. It’s an ASD thing and something he’s always done but he’s doing it far more right now, especially with his cars. Perhaps it’s a coping mechanism because he knows there’s change coming (he will go to preschool after the summer) or maybe I’m just noticing it more at the moment or it might be he’s already forging a future career as a…parking attendant or something. I don’t know.
This week, at a toddler group, Tyger diligently lined up all the ride-on cars and the toy buggies along the edge of the room. It was pretty conspicuous so I briefly explained to a couple of the other mums about Tyger’s compulsion to line things up. They know he’s being assessed for ASD. One of the mums just smiled and mentioned her own son’s phase of lining things up.
I immediately felt defensive. Defensive and a little…belittled? I thought about Tyger’s concentration as he lined up perhaps 20 or so cars at home and then his distress if anyone tried to move them. I thought about all the different things he lines up (cars obviously, blocks, CDs, toy animals, his Henry Hoover collection, buckets, trains…) and how long he’s been doing it (probably about a year now). I know a lot of toddlers go through a phase of lining up when they’re learning to categorise the world around them but it’s not really on the same level. This is probably where a lot of people would use a sports metaphor and talk about…leagues? But I don’t do sport. I guess it probably felt like someone who’s been out on a pedalo a few time comparing himself to the captain of a ship. Except that makes it sound like I think this little boy was an amateur liner-upper whilst Tyger is an expert and that’s not what I mean.
Anyway, the previous week something similar had happened. After watching another boy who was playing with a doll in a buggy, Tyger found another doll and another buggy and wheeled them over to the other boy so they stood next to each other. I mentioned the fact Tyger often very closely imitates other people to the boy’s mum and she said she thought all kids do that. I know all children copy to some extent. I know if one child decides to play with the train track you’re far more likely to get others suddenly showing an interest in the train track. And children love cleaning ‘just like Mummy and Daddy’ (haha! I avoided the trap of just putting ‘Mummy’ – how many feminism points do I get?); unfortunately, they don’t do it well enough to take over all cleaning duties (I know – I’ve tried). I know kids often pick up phrases they’ve heard from adults (normally either ones that sound massively cute coming from a child or – more likely – hugely inappropriate phrases that you just said that one time and why did they have to pick up on that specific phrase out of all the things you say!).
But Tyger doesn’t just do a little copying here and there. He’ll watch someone intently and imitate everything about them. If they have a backpack on, he’ll get his own (or – if they have a buggy!). If they’re sat with their hands in their lap, he’ll sit with his hands in his lap. If they walk away, he’ll walk along right next to them (think shoulders touching). When they speak, he repeats wheat they’ve said in the same tone of voice. He does this a lot. In fact, it’s a huge problem with his interactions with Baby Bear. Tyger often copies Bear (babbling, chewing on things, maybe crawling) and does it so close to Bear he’s pretty much on top of the poor child. As you can imagine, Bear is less than thrilled to have this limpet stuck to him at all times.
When someone says they think all children are like Tyger, it feels like Tyger’s struggles are being downplayed. I feel like shouting ‘poo you!!’ sometimes (which is something Tyger said to the Wolf the other day when the Wolf was teasing him and it tickled me). But I know nobody’s trying to make me feel bad. I know the other mums almost certainly aren’t trying to insinuate I’m exaggerating or even lying about Tyger’s ASD. I imagine they either don’t even think about it at all or – if they do – are trying to be supportive by suggesting Tyger is still ‘normal’ despite his ASD. I doubt there’s any malice there.
Why do I feel so defensive? Well, I think there are probably a few reasons. For one thing, I always feel a little defensive when it comes to Tyger. When your kid decides he absolutely needs to roll around on the floor when you’re out, or when he has a meltdown and starts kicking as you pick him up and you can feel the eyes on you and hear the thoughts, it can make you defensive. When the first few health care professionals you mentioned ASD to, were completely dismissive because your child ‘makes eye contact’ it can also make you defensive.
I don’t tell anyone to go poo themselves (wow, maybe the ‘poo you’ insult doesn’t work as well as I thought…or maybe it works a little too well and too…disgustingly) but I do feel like it. I don’t think it’s at all unusual for an ASD parent.
I have also read a lot recently from parents of kids with ASD and adults with ASD who say they are offended by so many terms. Some dislike the term ‘on the spectrum’ because there is confusion over whether ‘the spectrum’ refers to just the autistic spectrum or the whole lot ranging from completely neurotypical through to very autistic (it’s the former – I checked!). And then you get people saying ‘everyone’s on the spectrum’, which (as I now know) is certainly not the case. So, the whole concept of a spectrum can be problematic but that’s not all.
Other members on these forums don’t like ‘autistic’ as a term because autism is not something people are but something they have (if it seems like I refer to a disproportionate number of conversations that take place online rather than in real life that’s because most of my conversations in real life are with people I’m related to – I suspect if I worked out which adults I spend the most time actually talking to the postman would easily feature in the top 10 (and that isn’t hyperbole for comic purposes…just the truth for comic purposes)). However, others actually prefer to be called/have their children called ‘autistic’ rather than using the phrase ‘has autism/ASD’ because it is a part of them and not something to be ashamed of.
That doesn’t even touch on the controversy surrounding terms like ‘high functioning’, which some people find useful and others find pretty offensive because the opposite of ‘low functioning’ has such negative connotations. Also, ‘high functioning’ suggests the child is not overly affected by ASD when actually a child who is very capable in terms of language, academic ability etc. can still be hugely negatively impacted by ASD and struggle daily. ‘Asperger’s’ is no longer used as a diagnosis in the US and its use is inconsistent in the UK.
I have even recently learned some people resent the term ‘ASD traits’.
Confused yet? I am and I think I know more about the subject than your average person. I’m afraid of offending when it comes to discussing ASD. I’m afraid these blog posts often have scope to offend…which makes me think I should go easier on those who unwittingly offend me. You know what, don’t poo yourself!