Functioning Labels: The Relay Race

It's been a little while since I wrote a post here. I had a plan to write about something specific in my life, but then... my circumstances changed, shall we say, and now it doesn't feel right to write about it. Maybe in the future.

But I thought of this idea, and its something that has been on my mind for a very long time. It relates to a common piece of discourse commonly spoken about amongst the autism community (and often argued about within the autism community, against parents of autistic children and those outside the autism community...).

For those who know nothing about autism, it's common for them to refer to autistic people has "high/low functioning", as ways to define these different presentations across the whole spectrum. Of course, many people had a problem with this, because on the one hand it seems rather offensive to point at someone and say "this person can't function", and in the same breath, many people find it dismissive to say "this person can function well despite being autistic".

And thus, the labels of "high/low support needs" were born. A more respectful and accurate way of referring to those across the autism spectrum... right?

Well there came a problem.

The problem being that people often interpreted "low support needs" as "no support needs", and alongside that, many autistic people themselves started to get confused as to how to categorise themselves, because the truth is, most of the time, its not as simple as 'Low/medium/high'. Support needs are complex.

I mean, it's one of the key reasons we push the idea of autism being a spectrum much like the colour wheel, seperate from a linear line from "not autistic" to "the most autistic". Different people will have different levels of support needs and severity within the different aspects of autism. One autistic person might need a lot of support to be able to perform daily tasks, but are quite capable of holding a conversation and aren't affected alot in that area. Meanwhile another autistic person may have great difficulty with communication and rely on alternative forms of communication, but don't struggle in performing daily tasks. So which out of these two people has more or less support needs? Well, neither. But their presentation of autism is so different, and isn't that what these support needs labels are here to help with? To distinguish these different 'types' of autism?

It got to a point where there were a lot of arguments happening, especially on Tiktok. People arguing about what their support needs are, people saying they're higher support needs than they really are, not out of any malicious intent but just because thats the only way they feel they can justify the true extent of their disability. Because to them, saying they're "low support needs", means they have no support needs and can function perfectly well in life, which of course, is not true. They feel like their only option is to class themselves as higher support needs in order to be listened to.

But then the issue came of people trying to trivialise support needs levels, place every autistic person into these three definitive boxes, and worst of all, people trying to tell other people on the internet, who they do not know, what their support needs truly are.

It's something I, myself, have grappled with. When I was diagnosed, the psychiatrist discussed the diagnosis levels with me (these levels being another label to distinguish the 'types' of autism, essentially a more clinical version of the support needs labels), and he said that I seemed to lay somewhere between a level 1 and level 2. In the end, he let me choose, and I went with level 1, because it felt more right to me. But even now i still question it, because I often see other autistic people and from what i see of them, they seem to 'function' much better in life than I can. But then they will talk about their sensory issues, and in that aspect, I definitely 'function' much better than them, because I don't struggle with those things as much. Again, different people could have the same 'level' of support needs, but those support needs could present in completely different areas of autism. So things get confusing when we try and all box ourselves into three distinct levels or labels.

I think as autistic people, for a lot of us it's in our nature to take these things concretely and feel like we have to fit ourselves in these boxes. It often takes me taking a step back, taking a breath, and reminding myself that it just doesn't really matter. Only then can I accept that I don't need to define myself as 'level 1 or 2' or 'low support needs' or whatever. I'm just autistic. If I need to give more details on my specific support needs, I can.

I think more people are learning to accept this too, however there is one group of people who are struggling to accept this (or can't for whatever reason. I'm open to hearing said reasons, but I can't really see any myself). And amongst this group of people, a new label has been created. One which, in my opinion, is just here to seperate the "real" autistic people from the "fake" or "mild" autistic people (in this groups eyes). That label is: "profound autism".

The group mostly pushing for its adoption of course, is parents of autistic children, mostly with higher support needs. I suppose for them, the label of "high support needs" isn't enough, and they need something to further seperate the community that we're still trying hard to keep together.

I personally do not like this label of "profound autism". It's just another way of saying "severe", which continues to push the narrative that autism is some sort of disease. And, again, its just another way of splitting the community into two and saying "you lot are fine, this lot are actually disabled." But of course, there comes a problem in doing this. The same problem that arises with all the other labels i just mentioned: where is the line drawn? Who decides what's "profound autism" and what's not?

You could place an autistic person in front of these parents and people who push for use of this label, and ask them if said person fits the "profound autism" label or not, and they would likely have different answers. Some might say yes, others might say no.

I think in a lot of cases, especially with the parents, they tend to use their own children as the gatekeepers. Their child is the threshold, so if one's autism isn't as "severe" as their childs, then that means they do not qualify for the "profound" label. This is just unproductive and makes for a muddy, confusing label that no one can seem to agree on.

I have also started to see those within the autism community itself push for this label to, but i'll be honest, I can't stand for it. To me, this seems like some sort of strange relay race of labels. The batton is being passed from one label to another - it started with functioning labels, then the support needs labels and levels, and now the baton is being passed to "profound autism". It's an endless fight to try and find some way of seperating the community. Once they start to realise a certain label doesn't work as clearly as they hoped, they find a new one, and the cycle repeats itself.

My main question is why is this type of label even necessary. Why do we need to always be finding some new way to divide autism up into digestible sections. Personally, I think high/medium/low support needs is perfectly fine to use in instances where you do need to make that distinction, because i'm by all means not trying to say that that spectrum doesn't exist. Support needs exist on its own linear spectrum from high to low, and within that come the more complexities of where these support needs lie, but ultimately, in a broad way, they can be categorised as such when needed, however outside of that, I don't think it's all that necessary.

There may be certain conversations you could be having about autism in which you need to make that kind of distinction, but also, a lot of these conversations are conversations about specific aspects of autism, in which case it would make sense to refer to them as such, e.g. speaking or non speaking, high sensory needs or low sensory needs, sensory seeker or sensory averse, high reliance on routine vs low reliance, high anxiety vs low anxiety, struggles with fine motor skills or gross motor skills. I could go on forever. If talking about something specific like this, it simply makes sense to make such distinctions within these specifications rather than broadly referring to "high or low support needs" and making assumptions like "high support needs = non speaking".

I think maybe some parents feel the need to make the distinction because they feel underrepresented, or not listened to. I think a lot of parents don't get the support they need to care for their children, and are left to do everything on their own, and in their attempt to cry out for help, they unknowingly start to isolate the rest of the autism community, or turn it into a pity competition of "who has it worse". I don't want to point the finger and say all these parents are pushing these labels out of malicious intent just because they hate low support needs autistic people and want them out of the community, or something. I think majority of the time it is simply out of desperation, or perhaps a little jealousy. I don't like to use the word jealousy, because it sounds negative and salty, but I can't think of a better word. They see low support needs autistic people and become jealous that they can seem so "functional", meanwhile they have to work hard to care for their child, and worry about their future, etc. etc.

A lot of us live our lives with only our own experiences as a reference point, so when we see others, we can't really make an accurate distinction of what their life is like, how good or bad it may be. We use our own experiences as a reference, and also, I think often times as people we like to play the pity card a bit. We want people to know we're struggling, and sometimes the way we do so involves "playing up" our struggles to an extent. Sometimes I feel like I make my struggles sound worse than they actually are, but that also may just be the alexithymia coming into play.

Also (I cant think of a smoother segue into this topic...), a common phrase, or ideology, i suppose(?), I'm hearing a lot now in the community is to "centre higher support needs voices", and while in many ways I can agree - of course i believe high support needs people have just as much of a place in the autism community as the rest of us, we're all autistic at the end of the day, and I acknowledge that sometimes higher support needs people are spoken over in this community regularly - I also can't help but question the phrasing sometimes. I don't think anyone's voice necesarilly needs to be "centred", rather we just need to be sure to listen to everyone. Everyone deserves a space at the table in this community, that inculdes high support needs, low support needs, bipoc autistics, lgbtq autistics, autistic people with other comorbid conditions - just everyone. Maybe i'm taking the phrasing of "to centre one's voice" too literally, but I just hope that it doesn't turn into silencing low support needs autistics in favour of "centering high support needs autistics voices", because we all deserve to be heard, especially in this world where its impossible for us to be heard by anyone outside of this community.

Anyway, this was kind of just a lot of ramble, I hope it makes sense. Feel free to ask questions in the comments if you want to clarify anything. (also this is not proof read, apologies for any mistakes)

I'm not sure when I'll post again. Because of the circumstance change I mentioned at the beginning (more on that in another post in the future possibly???) I will be much more busy soon, and probably very tired for a while until things settle, so it may take a while. I mostly just write here when I have thoughts I want to express, so don't expect regular updates or anything.

And with that, I shall say:

see you in the next one!