Functioning labels

This is something that I’ve been thinking about lately. Partly because it’s something I’m still learning about but also after a recent conversation.

As I’ve said before, I instinctively dislike the High/Low functioning labels because who wants to be labelled low functioning? – it’s not appropriate or fair or respectful but some people still use them. I’m not sure what descriptors I would use but I guess levels of support needs are better. However, high functioning (HF) definitely isn’t helpful as it seems to conjure up – for non autistic people – someone who has no support needs and can be left to get on with things: I can speak, can hold down a job, have my own home and am married so what support could someone like me possibly need?! Fair enough, I’ve survived 53 years without any obvious or formal support but there are times I definitely wasn’t doing OK.

I was only diagnosed a year ago and have had plenty of practice to become highly skilled at hiding what’s going on in my head. I’m still learning how my differences present but it’s become clear to me that I internalise nearly everything rather than having meltdowns. I’m more likely to go quiet but pretend everything is ok than express my distress in any visible way. That doesn’t make me ‘high functioning’ all of the time, in all situations and in no need of help. That just makes me good at hiding stuff until it reaches breaking point.

Problems, uncertainties, difficulties that I encounter – big or small, significant or not – will play endlessly in my head but I will almost certainly never tell anyone what’s going on. Why? Not sure, maybe it’s fear of feeling stupid or being laughed at, scared of being vulnerable, sure that I’m making something out of nothing and should be able to deal with it or, often, simply that I don’t know how to start or have that conversation. When I’m struggling to deal with something it’s likely that no-one else will know.

This was brought home to me by someone during a recent conversation about functioning labels. I don’t work for the autism service but in an adjacent department and I was trying to explain that I hadn’t felt vey high functioning at work the previous week when I was really struggling for a couple of days. The response was that it made sense of me not being around one lunchtime and that I hide my struggles very well! It sounded as if they were impressed by how well I covered my struggles (which could of course be my misinterpretation and this isn’t about judging that person).

Reflecting on that has been confusing. I just don’t know what to do with hearing a professional who supports autistic people imply that being skilled at hiding things is a good thing. I surely misinterpreted it because hiding my struggles is definitely not a good thing long term!

The journey since diagnosis has been very up and down in terms of my mental health. It’s quite scary how things can change so quickly in response to a situation, a conversation, an argument or simply being unsure of what’s expected of me. The response can range from frustration, being low for a while to just not wanting to be here because it’s too hard. When the latter feeling has passed it feels as though I was overreacting but in the moment it’s very real.

I think the fact that I internalise everything and, as I have also learnt about myself, I find it almost impossible to ask for help makes it inevitable that I will always have those highs and lows. It’s not like it’s only happened since diagnosis, but it doesn’t make it any easier or pleasant to deal with though.

It feels as though it’s expected that autistic people in distress or difficulty will make it obvious through their behaviour. But what about those of us who internalise everything, who’ve had a lifetime to perfect hiding those struggles?

I sometimes have scenarios play out in my head where I am able to ask for, and receive, help. However, the reality is that I won’t. I just don’t seem to know how to have that conversation. I don’t believe that anyone will be interested and it’s too embarrassing to admit that I am not coping or don’t know how to do something.

Having started a new job recently there are inevitably issues which arise around wanting to do the job perfectly from the start, the nightmare of small talk with people I don’t yet know, having no written process or procedures and relying on verbal instructions over hours at a time, trying to scribble notes as best I can.

Starting a new job whilst still dealing with my diagnosis means I can now relate to why some autistic people change jobs often, even from a job they like. I’ve always worked alongside my team and co-workers in shared offices, even when offered my own space (except for one occasion when I had my own office but always kept the door open into the team office). I know a lot of autistic people need quiet space but that’s generally not me. After 30+ years of working and only actively having changed jobs 4 times (ignoring all the public sector reorganisations that led to changes plus, back in the day, promotions), it’s strange to think that it’s something other than simply the job itself that could make me leave – it’s the layout of the place and how that impacts on my ability to get to know the people I work with, it’s ridiculous things like not understanding the lunchtime routine which means I have skipped lunch sometimes or sat at my desk or disappeared by myself to the canteen. How frustrating to be confused by things that no-one else seems to find difficult and which therefore make you feel stupid and seems to amplify your difference!

When I was diagnosed it was acknowledged that a key issue was communication issues at home and we are now receiving help with this. This kind of illustrates my point in that it was picked up in a full day assessment with questions and conversation between the professionals and me and my wife – it’s not something I’ve gone and actively sought help with by myself.

However, that support has now provided an opportunity for me. At our session this week I was feeling pretty low and this was picked up (yeah, so much for my excellent mask!) and the conversation took a different turn. I’m now waiting to hear what happens next.

I guess my point about labels and peoples perception of what an autistic person who is struggling looks like (i.e that you will see it), is that it’s not always that simple. You need to know the person in front of you and find out how they express themselves, don’t make assumptions based on a stereotype or something written in a book. Labels are not helpful for any facet of life but we humans do seem to be attached to them – I would just like people to take the time to get to know autistic people as individuals and don’t assume you know how we work based on stereotypes.

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