Am I Labelling My Son?

A couple of conversations I’ve had recently have made me consider the issue of whether seeking a diagnosis in young children for things like ASD, ADHD, ADD etc. is ‘labelling’ them and should be avoided if possible.

I think parents worry because there’s still such social stigma surrounding autism (I’ll talk about this in terms of ASD just because that’s what Tyger is being assessed for but it could easily apply to other disorders) and they don’t want their kids to be pre-judged.  From my extensive research (by which I mean browsing on parenting forums and reading blogs) I’m guessing there are three types of judgement they’re worried about.

Firstly, there’s the ‘Maybe we won’t invite the autistic kid to little Jimmy’s birthday party in case he flips out and brains one of the other kid’s heads on the slide because that’s the sort of thing they do – even though I know they can’t help it, bless them – and I also hear they multiply when you get them wet so best not to bother’ brand.  Basic ignorance.  Not necessarily malicious but obviously damaging all the same and when it’s your kid not getting invited to parties even though you know fine well he’s never smacked another kid’s head off a slide, I imagine it’s heartbreaking.

Secondly, I’m sure parents are worried about other children and how they might treat a kid diagnosed with autism.  Kids pick on each other because they wear glasses, are overweight, have the wrong clothes etc. so why add a shit load of fuel to that already potential bonfire?

Thirdly, there’s the king of moron who thinks (or if they’re incredibly rude morons – which is a common subset of moron – actually says) something about how diagnoses of autism has risen along with a decline in discipline and nine times out of ten supposed ‘autism’ is just an excuse for bad parenting.  I won’t bother explaining why that’s a really stupid and uneducated viewpoint to have because that’s a blog for another day and if you have that particular opinion: 1) there’s plenty of articles and other people’s blogs on the subject on Google, 2) you’re probably not open to changing your mind because of pesky ‘facts’ anyway and 3) why the hell are you reading my blog?  Frack off.

The thing is: getting a diagnosis doesn’t make your child autistic.  Sometimes it seems like parents of undiagnosed kids think of them as Schrodinger’s Aspie; like until an actual diagnosis they both are and are not autistic.  The truth is if they have ASD, they have it whether or not they actually get diagnosed.  I could decide not to get a diagnosis for Tyger in case it affects the way people see him but he’ll still obsess over hoovers to the point where he cries when a hoover advert comes on TV because he ‘needs’ it (yes, that happened), he’d still give any stranger who walked in the house a hug (whilst naked) and scream when they left because they’re his ‘best friend’, he’d still refuse to eat any food with blemishes, he’d still start up a long wail to drown out other noises he doesn’t like, he’d still want plain spaghetti for every meal every day…and people notice these things.  He doesn’t have a diagnosis but that doesn’t change his behaviour and without an explanation they may write him off as ‘weird’ or ‘naughty’.

And I think the same goes for other children.  Children are not stupid.  They recognise when someone is ‘other’ and, yes, unfortunately that someone is often punished for it.  But children also aren’t necessarily cruel – as much as the saying indicates otherwise – and whilst some will pick on the ‘weak’ they will do that whether a child has a diagnosis or not and a diagnosis might just make some of the kinder kids more understanding and sympathetic.

That covers other people but I’d guess parents also worry about what the kid will make of it and whether it will make them feel ashamed or upset to know they’re autistic.  My sister was a teenager when she was diagnosed with Asperger’s so she fully understood having it made her ‘different’ and may open her up to a load of bigotry and ignorance from other people.  She was – and still is – at an age when social acceptance is a top priority for most people.  But far from being upset by the diagnosis, she was relieved.  She’s a smart girl: she already knew she was different to most other people and she found it baffling.  All the diagnosis did was explain why she was different; why she was obsessive and anxious and struggled in social settings.  It also – importantly – meant she received a whole new level of support at school.

I have experienced something similar, if not as pronounced.  I’m not on the spectrum (at least not far enough along it to be diagnosed) but I do suffer from depression.  It’s not the same thing but it is afflicted with a lot of the same social stigmas and misunderstandings as ASD.  When I was actually diagnosed with depression I was incredibly relieved.  Relieved because it turned out there was a reason for the way I felt other than because I was the human equivalent of Marvin the paranoid android and it wasn’t my fault.  I know one of the big differences between depression and ASD is depression can be treated whereas – as yet – there is no treatment for ASD but there is at least support available (especially for the school years) and simply understanding there is a reason you are the way you are is pretty powerful on its own.

Some people favour the ‘wait and see’ approach to diagnosis.  If the suspected disorder isn’t a current problem or it’s at least being managed at the moment they don’t see the point in going through the – admittedly often long – diagnostic procedure when it won’t actually change anything.  I get that.  And I get that not pursuing a diagnosis isn’t the same as not doing anything to support a child’s needs.  I guess, after watching my sister go through most of her schooling without anyone realising she was autistic, I’d rather be proactive.  Right now a diagnosis would change nothing for Tyger and even once he goes to preschool after the summer it’s unlikely to change anything.  But once he starts at school he may need extra support and that support may only be gotten if he has a diagnosis.  It seems inevitable to me he’ll struggle at some point and I want to have already done as much as I can before then so any help he needs can be accessed as soon as possible rather than having to wait for months – or even years – before we even get to the point of discussing what extra support can be put in place.

And nobody needs to know.  There is no onus on a parent (or the child) to tell other parents or friends or family members or strangers in the supermarket about the ASD.  But if you decide things will be easier for your child if certain people do know, that option is still there.  And it’s certainly nothing to be ashamed of.  I’m not about to write a Disney song all about accepting yourself for who you are or anything but if you suspected your child was short-sighted you wouldn’t avoid getting it looked at just because wearing glasses might get the child teased.  ASD will continue to be viewed as something to be ashamed of if we continue to act like it is.

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