3:47pm August 24, 2014

There is no should in development

Developmental guidelines for parents often say things like this:

“At around two years of age, a child should be able to have enough balance to jump up, with both her feet leaving the ground. She can climb a staircase holding onto the railing, using one foot at a time. She can make scribbles (straight lines) holding a pencil. She may not have a preference for either the right hand or the left hand at this age, or she may start to favor one hand over another. She can feed herself pretty well now, getting most of the food in her mouth, but she is by no means a neat or willing eater. She can stack a tower of blocks pretty high — at least eight to ten blocks.”

This kind of framing is a problem, because it sets families up to see their kids with developmental disabilities or delays as flunking toddlerhood.

You can’t flunk being a toddler. There is no should in development. Kids whose development is atypical are not wrong or broken or failing. They’re doing the best they can, and they need early education to help them to acquire certain skills.

There’s typical, and there’s atypical. There are early signs of disability, and there are indications that a child may need education or support that most children do not need.

(In particular: Kids who aren’t speaking at the age most kids do need help learning to communicate. That shouldn’t just be aimed at getting speech. The goal is communication, not looking normal. I’m not knocking early education for kids with disabilities. I’m saying not to treat them as failing.)

But there is no should. You can’t flunk being a toddler. A kid who has a disability isn’t failing. They’re just disabled.

Children who don’t hit milestones at the typical times have not failed to do what they ought to. They’re ok. Their development is ok. They are not doing anything inappropriate. They just need help and education that typically developing kids don’t need. And the point of teaching them isn’t to cause them to catch up; some kids with atypical early development look more typical later in life, but many more don’t. That’s ok too.

And part of the education they need is learning to be ok with themselves in a world that thinks of them as broken. Talking about atypical development as though it’s a failure undermines that, even if you don’t think your kid understands, even if you don’t think you’re saying it anywhere they can hear. It affects your attitude, and it affects them.

If you think that your kid is constantly failing, they will know. And it will hurt them. They are developing and learning and growing in the way that they can, and there’s nothing wrong with that. They aren’t wrong. Their body isn’t wrong. And they shouldn’t be made to feel like they’re failing before they’re even kindergarten age.

There is no should in development. Atypical is ok. Disabled is ok. Having a disability isn’t a failure.

My parents raised three neurodivergent children. By the time I came around (I was their last kid), I think they’d gotten so used to certain things that they no longer seemed glaringly “abnormal”, although I know they sought help and were rebuffed in various ways for things going on with me. (Like the time I stopped talking and started grunting instead. They were told that was their fault, essentially. After hearing that, they weren’t about to bring that back to a doctor.)

But anyway, I’m pretty sure that all three of us not only didn’t meet certain milestones “on time”, but actually went through the milestones “in the wrong order”. My oldest brother is the one who got the brunt of the “you’re abnormal” stuff because he came first, and he told me that he got sent to this place for “going through the milestones in the wrong order”. But when I look at what the milestones are supposedly supposed to be, it certainly looks as if I went through them in the “wrong” order too, and possibly so did our one nonautistic sibling (who, though nonautistic, is still blatantly neurodivergent and was diagnosed as ‘hyperactive’ as a kid).

And… yeah.

There’s a lot of times I can’t stand to read anything written by parents online about their kids not hitting certain milestones, or not hitting them in the right order, or not hitting them in the right way. Because they go on at great length about what an anguish they feel every time they see a child who has hit whatever the milestone is, and how they are always comparing their own child to the typically developing child and finding them wanting.

Which… among other things, they can’t possibly know that this typically developing child is actually typically developing. For all they know that’s another autistic kid with a different form of autism, or for all they know the kid has some other major disability that they’re just not seeing in those five minutes at the playground.

But aside from that, it seems horribly unfair to both kids, to make comparisons like that. When I was a kid, I was hypersensitive to comparisons with other kids, whether the comparisons made me look good or made me look bad. They felt unfair and I’d get angry. I still get angry when people compare me with other disabled people, again whether or not I “come out on top”. It’s the fact of the comparison that makes me angry, the unfairness, the sense that the person doesn’t even know either one of us but is acting like they know all about us.

It also goes back to a thing that happened to me in psych/DD settings where I’d make a friend. And the friend and I would decide we had a lot in common. And the staff would do everything they could to persuade us that we actually had nothing in common, and that we were not really friends, and that we could have nothing in common because our diagnoses were different (or some subtlety of our diagnosis was different, even if our diagnoses were the same), or something else along those lines. And it felt like staff wanted to be able to control everything right down to who identified with who else.

I even remember a psychologist who told me “Ronnie isn’t really your friend. She acts like your friend because you’re both stuck here together. But she’d never take you out clubbing in the real world. Your social skills aren’t developed enough. You’d embarrass her. So you shouldn’t pretend that you two are friends, when you’re really just two people who are stuck together in a residential facility who would never even talk to each other on the outside.”

That was one of the “You’re too low functioning to be her friend” speeches I got. I also got “You’re too high functioning to be her friend” and “She’s too low functioning to be your friend” with other people. I once made a good friend who was said to have an IQ of around 30, and we had a great time hanging out and doing stuff, and she was one of the few people who could interact with me on a level that was comfortable to me. But I was constantly told that she was incapable of true friendship. Even when she held my hand, petted my shoulder and said “Nice, nice, nice” over and over, apparently that was just “learned behavior” and shouldn’t be interpreted as indicating love or friendship. And gods help me if I identified with her, even though she was the first person in my life who had ever looked 'three-dimensional’ (i.e. “like me” and therefore able to be read on all levels instead of on a handful of levels). I was not supposed to identify with her at all, and that was a great offense to the order of things.

(There was this whole Thing where they got to choose who was like who, and none of us got to choose whether we were like each other, and they were greatly offended if we tried. So greatly offended that it came out in great waves of rage directed at any of us who dared to actually voice the idea that one of us was like any other of us, without permission.)

But anyway, I really hate the comparisons that grow up around milestones. I hate reading things where people basically piss and moan about the imagined superiority of other children over their own. Especially when they know next to nothing about the other children, they just fill in the blanks. I can totally picture a parent looking at me as a child and thinking that I’d hit all the milestones ahead of their child, when I actually hadn’t even hit half of their child’s milestones yet.

I actually remember times when not having hit certain milestones was taken as a sign of maturity – and then all hell broke loose when I did hit those milestones… ten years too late and with nobody expecting it. I’m thinking particularly of spontaneous pretend play, here. Didn’t have much of it as a young child – had to be led along by the hand. Suddenly got the ability as a teenager, and suddenly I’m psychotic and twenty other things, even though when I read books on child development I was doing nothing different than a toddler does when they first discover the ability. So at first not having pretend play made me look 'mature’ because it made it look as if I’d 'already grown past that’, and then once I actually grew to that point, it terrified everyone around me because they didn’t know how to take a 15-year-old who insisted on this elaborate fantasy world being absolutely real, in the same way a little kid does when they are first learning to pretend.

And I’ve heard of that scenario – that exact scenario – happening to a lot of autistic people in adolescence.

I honestly think there are a number of developmental trajectories that are as normal for autistic people as the “normal trajectory” is for nondisabled people. As in, certain things happen at certain ages for certain kinds of autistic people, and they do so with such regularity that I think there must be a pattern there. We must have our own sets of milestones, we must have our own specific developmental trajectories that are perfectly normal for us, and there must be quite a large number of different ones for different types of us. (And I’m talking throughout an entire lifespan, not just in early childhood.)

There have been times I’ve heard an autistic child described, and been almost certain I knew the age of the child long before anyone told me, because I knew what age things normally happen at for autistic children.

For instance, age four is a very common age for us to start talking. So common that if a child isn’t talking by the age of three, I am not even concerned yet that they won’t talk ever at all. Not that I think that would necessarily be a horrible thing, but I’m no more worried about a nonverbal autistic 3-year-old being nonverbal forever, than I am about a nonverbal nonautistic 3-month-old.

But parents aren’t given lists of the normal development of autistic people, so they assume if we’re not doing something, we’ll never do it. And some of them get very weirdly invested in believing their child will never do this long list of things, to the point where if you contradict them, they get angry with you and go “What do you know, do you think you know my own child better than I do?” (No, but I think I know more about autism than you do…)

Anyway I totally agree with everything you’ve said here, I just wanted to add a bunch of things that it reminded me of.

Notes: