Is autism just a label? Or is there more to it? | Unapologetically Autistic

If you think autism is “just a label” then you might not be thinking at all

Since I got my formal autism diagnosis a couple of weeks ago  I've had a couple of people tell me it's "just a label", and how it doesn't change "who you are".

Quite why they feel the need to share any of this with me this is beyond my understanding, especially when I've not asked them their opinion (and have no interest in it, to boot).

But, for whatever reason, I see a fair bit of this kind of thing in various groups and forums — it seems to go along with the claim autism is being deliberately or lackadaisically and thoughtlessly diagnosed to save parents the hassle of enforcing standards and discipline.

We can't rule this out in every case, of course, but as with any claim, if they want it to be taken seriously, they have to provide evidence to support it.

And so far, I've seen none — it's just opinions being voiced by laymen who typically aren't qualified to give any kind of diagnosis of their own or spot an incorrect one from anyone else (I've already been told by someone utterly unqualified my own diagnosis was "wrong", 'Cuz Reasons). More to the point, even if autism is being over-diagnosed, this kind of attitude won't help anyone with a correct diagnosis.

Anyway, the proponents of this way of thinking, seem to fall into at least three camps.

  1. People who are uncaring how autism affects us.
  2. People who are ignorant about how autism affects us.
  3. People who are (probably) well-meaning but patronising (I suspect they're trying to make us feel better).

The uncaring and ignorant

I won't say much about the uncaring other than to say I can't blame them and don't judge them for it.

Why should they care, after all, especially if autism doesn't touch their lives beyond an irritating colleague or acquaintance? 

Their tune will change if they get close to an autistic person or have an autistic child themselves, but until then, I guess they're indifferent (and I have no problem with that since most of us are pretty much indifferent to most things not affecting us or those we love directly — a harsh but fair observation, I think).

The ignorant?

Well, everyone but an autistic is ignorant of how deeply autism affects us, except on the most superficial level. You might be able to jot down a shopping list of traits and maybe recognise one or two of them on the surface from the outside, but, unless you share them, you'll never understand what it's like to live with them 24/7.

But it seems some people elevate ignorance of our condition to an art-form and go out of their way to dismiss, invalidate, and denigrate our difficulties and challenges at every opportunity. They're typically the same kind of people who are similarly dismissive of mental-health issues and tell you to "try harder" or "pull yourself together" when things become too much (and what an amazing and inspired idea! If only the legions of people suffering with their mental health had read that particular memo).

I don't know why they do this, and it's difficult to see how they can have anything but ill- and spiteful intent (just for the record: none of this offends me; in fact, nothing offends, me, ever. I don't even know what the emotion of "being offended" feels like).

But do it they do.

And I don't care about their ignorance per se, because what they think is none of my business, but when they use that ignorance as a basis for dumb opinions about autism and autistics, then I think their ignorance becomes wilful, and that's shameful to anyone possessing a working brain (and I'm as entitled to that opinion as they are to theirs).

We're all ignorant about most things, to be sure, but being ignorant about a topic and then having opinion on it is sublimely stupid.

And Neurotypicals having an opinion about "labels" when the neither the label nor the underlying condition apply to them is an example of this, erm, less than intelligent thinking.

And the well-meaning and patronising?

Probably the most irritating of them all, because they can't help but want to meddle.

They seem to be mostly do-gooders and bleeding hearts, the kind who talk about us in the third person, ask "does he take sugar?", and wax endlessly lyrical on autism and similar topics without having anything so useful twixt their ears as experience or knowledge.

I wish they were harmless, but they're not, since they seem to worm their way into positions of influence where they can smother us with their draconic altruism. 

Feh. 

But whatever their reasons for trivialising and decrying them...

... sometimes...

Labels are useful (even essential, in my opinion)

Here's a true story for you.

Someone I know has a daughter, and for several years he's been fairly sure she's an Aspie. I don't know her well, but as he's described her, it's certainly not impossible (especially as diagnosis in girls can be tricky).

But he won't get her assessed. 

Not can't

Won't.

Nor will he voice his suspicions to her so she can make her own mind up about whether to get assessed or not (I'm guessing she's now 15 or so,  an age where she can make a decision like that herself).

Why is he keeping this from her?

Because he doesn't want her to be "labelled".

He doesn't want to "feel different".

He wants her to have a "normal life".

A laudable aim, but I'm afraid he's going about it in entirely the wrong way.

My heart goes out to this poor girl, and while I'm sure her father has the best intentions, we all know where a road so paved leads. To be quite frank, I think it's tantamount to a kind of child abuse — knowingly withholding treatment from your child in the belief you know better than professionals. That's the kind of stunt the anti-vaxxers pull with their abhorrent "my child, my choice" rhetoric.

See, if she is on the spectrum then she already knows she's different

But what she almost certainly doesn't know is why; and the chances are she's not even fully aware of how she's different.

All she'll know is she doesn't fit in like her peers do, and she struggles with everyday and mundane things everyone else seems to find easy. And because she's been kept in the dark it's almost certain she assumes everyone faces the same challenges she does, but she's broken because she can't deal with them as well as they do. I can't tell you how exhausting and ultimately damaging that is — especially as it's unnecessary and the result of a misguided view of what living with autism is like.

As an autistic myself and having lived through the experience of growing up undiagnosed and completely unaware, albeit for different reasons, I find it execrable and unconscionable he's deliberately withholding it from her. 

My point?

Let's be clear: no, we are not the label, in the same way those tiresome personal development gurus tell us the map is not the territory.

Autistic is what we are, to be sure, but it's not all and everything we are. I'm not arguing with any of that.

More to the point, the label doesn't even begin to scratch the surface of autism because it's such a rich and varied spectrum.

And we know that, even if neurotypicals don't. We are more aware than they are the label is in many ways superficial and merely a signpost indicating a general direction.

But...

Labels can be useful because they're a simple shorthand to give you — and everyone around you, assuming they're informed at least to some degree — a handy shorthand description of some of the traits they might expect from you. 

Labels can be useful because they can point to a deeper and more thorough pathology of a disorder and help you explain the past and the present, as well as plan for and anticipate the future.

Labels can be useful as starting points for dialogue and discussion when we need to talk about help, support, and intervention (while you might crow about not having your child "labelled", without that shameful lablelly thing you're depriving your child of a huge amount of early-years support which can vastly improve the entire course and quality of their lives). 

Labels can be useful for adults, too. No, we don't tend to get much support once we hit our 18th birthday (a subject for a whole post of its own, methinks), but if an employer is made aware of our autism by applying one of those pesky labels, they will (if they have any decency and sense) make accommodations (alas, this isn't common enough).

I'll end with an observation...

 I'm sure they're out there (and  if they are I suspect they're a tiny minority) but it's not autistic people themselves complaining about these "labels"; rather it's NTs, who, for all kinds of reasons, it seems, are content blithely to tell us what to think and feel, and how we should be dealing with something they can't even begin to understand.

To repeat a common mantra of mine: if you want to know how to help autistic people, figure out what we think and feel, and what kind of support we need...

... ask us.

Autistically,

Jon McCulloch, The Evil Bald Genius

Author, speaker, business owner, and autism advocate

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Jon

I'm Jon. Husband, father, business owner, author, speaker, and outspoken advocate for autism awareness. I struggled my whole life knowing I was different, but not knowing how or why. I was finally diagnosed in 2019, but had informally self-identified as autistic for a couple of years before that. I live on a remote farm in Ireland with my wife and an assortment of cats and dogs.

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