Christine, Wondering

Random Musings of a Human Becoming

Thursday, May 19, 2016

"Oh well, we're all on a spectrum!"

Spoiler: No, we're bloody well not.

I hear this an awful lot. Any discussion where someone is talking about the traits they have that are 'on the spectrum' (whether it's the spectrum of ADHD, ASD or something else) tends to end with one of the people in the conversation saying "we're all on a spectrum!", usually with a nervous laugh. It always frustrates me, because it has never once come from someone else who I know or suspect actually is experiencing ADHD or ASD. When I hear it from someone who is plainly neurotypical, it suggests that they don't understand the difference between an occasional misstep and a lifelong impairment... which really shouldn't be that hard to figure out.

When people say that we're all on a spectrum, I expect that they're thinking about a spectrum of human behaviours across the whole population. For the 'social communication' spectrum it might look something like this:

And to an extent that's true. However, when we talk about the "autistic spectrum", we're not talking about a whole-population spectrum with an "autistic end". We're talking about the spectrum within autism itself, which is a spectrum of impairment.

Lots of people have worse-than average social skills, but manage to get by without their social awkwardness impacting on their friendships, earning potential or mental health in any particular way. It is only once social communication problems are a burden that an autism diagnosis begins to enter the picture.

A more accurate diagram of the social communication spectrum would look like this:

We can talk about the spectrum of human social communication skills, sure. But when people with ASCs talk about being "on the spectrum", we're not talking about the whole three-colour spread. We're talking about this bit:

The ASD spectrum is a spectrum of impairment. It is the degree to which (for example) poor social communication skills affect the person's ability to function within society.

Claiming that we're "all on a spectrum" ignores the fact that being on the spectrum of impairment is by definition far harder to live with than being placed anywhere else on the whole-population spectrum. "I feel shy sometimes" (red 'no impairment' zone) is not the same as "My voice actually shuts down for hours after a stranger addresses me" (blue 'impairment' zone). The autism spectrum isn't about how good or bad your skills are, it's about the degree to which your functioning is impaired by those gaps in your innate skills.

To give the ADHD version, "everyone loses things sometimes" is not the same as "I frequently upset or inconvenience myself or others by losing important paperwork, even if I've made a conscious effort to keep it safe at some point".

Please, if you hear the words "oh, we're all on a spectrum" hovering on your lips... don't say them. We know we're all on the human spectrum and don't need you to tell us that. We need you to hear us when we try to tell you - who have never experienced it - what it's like to live on an impairment spectrum. It's not the same. We're not the same. If thinking about that makes you uncomfortable, try to imagine how uncomfortable it is to be in the blue bit. Having an impairment is not actually all that much fun.

Friday, May 13, 2016

Adventures in ADHD

A few months ago, a couple of articles on ADHD crossed my Facebook feed. One of them was this one, and it changed my life.

The odd thing is, I already had a diagnosis. I'd just never considered that it might still be relevant.

I was diagnosed with ADD (they made a distinction in those days) when I was about 10, I don't remember the year precisely. It was only picked up because my younger brother was your classic hyperactive white boy, and the diagnosing psychiatrist figured he might as well take a look at the daydreamy big sister as well.

I took ritalin for four years, but as I grew into teenagehood I began to resent it as one of the many things - strong working mum, gyprock kit home, avant garde childrearing, not using the titles Mum and Dad and, as I entered my mid-teens, now-divorced parents - that made me not normal. I wanted to be normal, and I didn't want to see the psychiatrist any more, so I stopped taking ritalin. I can remember that my Dad kind of shrugged; I don't even remember a conversation about it with my Mum.

When my grades collapsed throughout year 10, people blamed my parents' divorce and the disruption of changing homes and schools.

When I had to repeat year 12, people blamed me for not studying, with slight concession to the fact that I was being frequently woken by my baby sister.

When I moved out at 18 and almost immediately descended into housekeeping chaos, people couldn't understand why I was such a slob.

When I pulled high distinction essays out of my hat at 3am on the day before they were due, people asked me again and again why I didn't do things in advance, and it was like they were speaking Klingon.

When I entered the professional workforce and just could not cope with staying on task, I hid what was going on so carefully that everyone except my one archaeology boss and colleagues thought I'd genuinely had a change of heart about my career path, rather than having destroyed my dream career through misuse of work time, disorganisation, and the inability to deal with workplace behaviour.

When I racked up debt in my mid-20s people shook their heads and adjured me to be more careful.

When my housekeeping never got any better, people were embarrassed for me.

When I couldn't stay on top of things as a teacher, I covered it up again and again and loathed my disorganisation and laziness.

When I blurted things out or spoke too loud or babbled too much I thought I was socially awkward, and blamed myself for not being more restrained.

When I dropped and trod on and walked into and wrong-footed and couldn't organise my body in order to get things done, I thought I was clumsy, careless and hasty, and hated my body.

When I couldn't stop the endless desire to eat, I thought I was a glutton and despised my weakness.

That was the litany of who I was: careless, lazy, gauche, greedy, clumsy, hasty, incompetent, slob.

Not once, in all this time, did I ever ask, "Is this ADHD?"

Not once, in all this time, did anyone who knew I'd had the diagnosis ever ask, "Is this ADHD?"

I am angry occasionally, but mostly what I feel is bewilderment. Looking back, it's so obvious; I have no idea why I didn't figure it out. I just can't fathom it. I'm smart. I'm educated. I have access to a world of research at my fingertips and have done for nearly two decades. I knew I'd had the diagnosis as a kid. Why did it never occur to me to ask whether my complete failure to "adult" was simply a logical extension of the 10-year-old daydreamer with the messy desk tray and habit of staring through her classmates?

When I read the article I linked above, something finally clicked.

Then came a ten minute consultation with my GP.

An hour with a mental health nurse in which I sobbed over wounds whose pain I hadn't ever acknowledged.

Half an hour with a sweet, gentle mental health doctor, and a screening test in which my 'impairments' were laid bare in dozens of tick-boxes.

Two ECGs (the first one wasn't plugged in properly).

One blood test.

And then I was in the pharmacy holding a small green piece of paper with my sweet mental health doctor's instructions laid out in neat capital letters.


I've been on it for just over two weeks now. At first, I was taking a dose in the morning and a dose at midday, necessitating the carrying of it in a miniature combi-lock safe during my work day. Now I'm taking the full dose in the morning, and in two weeks the dose will go up again. So far, concentration is a little better at work, housework has become astonishingly trivial, I've actually been to the gym, and I just don't care that much about food. Suddenly I'm cooking dinner every night (or organising one of the others to cook it) and taking lunch every day. Chocolate has sat uneaten in the cupboard and I don't even care. I can cook a whole meal without getting bored and wandering off.

It's weird.


Is this how normal people experience life?

It's, um, pretty cool.

Sunday, May 1, 2016

I'm Not His Mum.

I haven't posted on this blog for over a year and I don't think anyone actually reads it any more, so I guess this is a safe place to put this so that I can link to it when I need to.

Lately, a few friends have referred casually to my stepson's "two mums", or called me a "mum". I know this comes from the best of places - love for me, and genuine recognition of the effort I put in to my stepson's life. But it's really triggering, and also not true.

I can see why people might think it's all but true. I do just about everything that his mother does. I pay, I fetch and carry, I soothe, I feed, I discipline, I cook and prepare and wash and pack and find and entertain. I have been a full-time parent to him for four and a half years - well over half his lifetime and since before he can remember.

The reason why I'm not his mum is one that people don't like to talk about much these days. It's become very unfashionable to talk about a parent's rights over their child, and perhaps rightly so, as the focus has shifted towards the child's rights and the parent's responsibilities. But it remains true that the parents who are on the birth or adoption certificate have certain rights that non-parents don't have. Some of them are encoded in law, such as the right to make medical decisions, but most are simply by convention. The right to choose a child's school, the right to choose how a child is raised, the right to decide what behaviour or language will fly in our house and what won't, the right to decide a child's diet, and so on.

I am a lucky stepmum, in that my wife values my opinion in these things, but there is never any doubt that the decision is hers. Where our ideas and values clash, I have no choice but to give way, as I have no ground on which to negotiate.

I'm not his mum because I don't have the right to be.

If we were both his legal parent, we'd both be required to compromise over these things, but there's no requirement for compromise in this situation. She's his mother, I am not, and the decision is hers.

Thankfully, most of the things I would have vetoed or insisted upon are minor - changing into play clothes after school, or not saying 'bum' and 'telly', for example, Many of them are based in a class-culture clash that occasionally plays out between my wife's upbringing and mine. But they add up to a very glaring and obvious difference between 'mum' and 'not-mum'.

That's why, when people call me his mum, it hurts. Because I want to be someone's mum very badly, but I am not. Because I carry all of the responsibilities a mother has towards this child, but have none of the rights motherhood entails. Because he's not growing up with 'my child' stamped upon his being. He's my wife's son. I'm not his mum.