ASD/Asperger's Syndrome/Levels 1, 2 and 3

I don’t know where I read it, but I heard someone say that “the functioning label is how my autism effects you, not how it effects me.” Using myself as an example, to an outside perspective, I am “high functioning”, I have a relationship, a job, a home. But that really doesn’t account for my personal struggles. I battle anxiety everyday, I have non-verbal episodes, I can’t socialise without support, heaven forbid I ever have to talk to someone on the phone, sensory issues can be a constant battle. Many will have it a lot better and many will have it a lot worse, but my support needs don’t invalidate theirs and visa versa. We all deserve to have the support we need!

I think the labels have a place to allow medical professionals to make quick assessments of a persons state and ability, but beyond that, the supports needs of an autistic person are so dynamic, trying to group us together is a pretty impossible task and will mean people don’t actually get the support they need, as people will start trying for 1 size fits all solutions. We are individuals and all have different needs and support requirements that can vary from day to day, situation to situation, and we all deserve to have that support.

I can see that, and I think you’ve put it really well. I have also recently taken on board how each of us has a fluctuating spiky profile that may or may not be well masked in any given moment. 

However, if I may use a personal real life example or two to suggest that ‘levels’ might still be appropriate even on a purely etiquette level…

I grew up next door to a single mother and her three children, approximately my age. Her two boys were non-verbal (language wise) though did make many loud noises, humming, singing, shouting etc. it was clear that it was compulsive, and that they were locked into their own world, relying on others to break into their bubble do to speak if any meaningful exchange of support was to occur Her daughter was different- she communicated in words, she wanted to play with me and my sister, she was able to help out around the house in a way her brothers simply could not. And yet something about her was markedly different from any neurotypical child and was even different enough from me to come across as a little (forgive the term, I was a child) ‘strange’. My sister and I, despite liking her, would occasionally privately acknowledge that we found her a little challenging in some respects. It came over in her cadence, her stimming (we wouldn’t have known that word), her relative lack of co-ordination, her fixed smile and far-off gaze. As we grew older, it was simply very clear - to anyone-at a glance, that she was (by then we knew the word) very noticeably autistic, and that her brothers were profoundly so. 

About a year ago I got talking to their mother over the wall while visiting my parents. She started telling me about how one of her two now middle aged sons - who’s spent much of his adult life in residential care- has made a recent communication breakthrough using letter board tech of some kind. She always knew he was intelligent but even she hadn’t realised just how much he’d learned, he has an encyclopaedic knowledge and near perfect recall of things going back to when he was extremely young. 

I said how great that was, hoped it was a permanent game hanger for them etc. as I did so, it crossed my mind to mention my own diagnosis. But what stopped me was… I was worried that (rightly or wrongly) this woman -who’s had to fight an uphill battle for all three of her kids-.would be insulted by my daring to say ‘oh I’ve got that too you know’. Me, who got through school, university, found a career, lives independently, reflexively masks extremely well 90% of the time. 
 
So, what does that say? It says that I’m very aware that there are three very distinct levels of outward manifestation, innate challenge, etc. Level Three: that lady’s sons. Level Two: Her daughter. Level One: Me. (With the imposter syndrome internal battle that only goes with that level I would argue) 

I know that I will never be mentioning my own autism to this woman as it’s a plain as day to me that she would find that upsetting, like an equating that I don’t deserve. I think, by the way that she herself is level one - I can see traits in both separated parents actually, both of whom have had careers etc. They are of a generation that might not acknowledge autism in themselves when their children are the ones who so prominently are the ones who stand out. 

I hope I’m putting this all sensitively enough, and I’m still on a learning curve. But do you see what I mean about etiquette? In a way I feel like saying I’m Level One (not ‘only’ level one) is the least I can do to respect those with lived experience of these hugely self-evident contrasts. It doesn’t invalidate my own struggles - many invisible to the average observer- in fact, that’s the trade-off. We who mask well because of our level end up exhausted and anxious out s and dispirited for being unseen in our distress. Those who are so much more outwardly discernibly autistic *are* seen, accommodation is unavoidable, inevitable, guaranteed. And not remotely questioned.

So in a sense there is no ‘mild’, it’s true. You either get the outwardly mild but inwardly tortured or the outwardly clear as day but with an uncompromising inner landscape not constantly assailed by the requirement to accomodate NT environments exclusively, or at all. 

I feel I could have been more nuanced and articulate here. I apologise if it’s been heavy handed and caused offence. Very much the opposite of what I intended. 

I can see that, and I think you’ve put it really well. I have also recently taken on board how each of us has a fluctuating spiky profile that may or may not be well masked in any given moment. 

However, if I may use a personal real life example or two to suggest that ‘levels’ might still be appropriate even on a purely etiquette level…

I grew up next door to a single mother and her three children, approximately my age. Her two boys were non-verbal (language wise) though did make many loud noises, humming, singing, shouting etc. it was clear that it was compulsive, and that they were locked into their own world, relying on others to break into their bubble do to speak if any meaningful exchange of support was to occur Her daughter was different- she communicated in words, she wanted to play with me and my sister, she was able to help out around the house in a way her brothers simply could not. And yet something about her was markedly different from any neurotypical child and was even different enough from me to come across as a little (forgive the term, I was a child) ‘strange’. My sister and I, despite liking her, would occasionally privately acknowledge that we found her a little challenging in some respects. It came over in her cadence, her stimming (we wouldn’t have known that word), her relative lack of co-ordination, her fixed smile and far-off gaze. As we grew older, it was simply very clear - to anyone-at a glance, that she was (by then we knew the word) very noticeably autistic, and that her brothers were profoundly so. 

About a year ago I got talking to their mother over the wall while visiting my parents. She started telling me about how one of her two now middle aged sons - who’s spent much of his adult life in residential care- has made a recent communication breakthrough using letter board tech of some kind. She always knew he was intelligent but even she hadn’t realised just how much he’d learned, he has an encyclopaedic knowledge and near perfect recall of things going back to when he was extremely young. 

I said how great that was, hoped it was a permanent game hanger for them etc. as I did so, it crossed my mind to mention my own diagnosis. But what stopped me was… I was worried that (rightly or wrongly) this woman -who’s had to fight an uphill battle for all three of her kids-.would be insulted by my daring to say ‘oh I’ve got that too you know’. Me, who got through school, university, found a career, lives independently, reflexively masks extremely well 90% of the time. 
 
So, what does that say? It says that I’m very aware that there are three very distinct levels of outward manifestation, innate challenge, etc. Level Three: that lady’s sons. Level Two: Her daughter. Level One: Me. (With the imposter syndrome internal battle that only goes with that level I would argue) 

I know that I will never be mentioning my own autism to this woman as it’s a plain as day to me that she would find that upsetting, like an equating that I don’t deserve. I think, by the way that she herself is level one - I can see traits in both separated parents actually, both of whom have had careers etc. They are of a generation that might not acknowledge autism in themselves when their children are the ones who so prominently are the ones who stand out. 

I hope I’m putting this all sensitively enough, and I’m still on a learning curve. But do you see what I mean about etiquette? In a way I feel like saying I’m Level One (not ‘only’ level one) is the least I can do to respect those with lived experience of these hugely self-evident contrasts. It doesn’t invalidate my own struggles - many invisible to the average observer- in fact, that’s the trade-off. We who mask well because of our level end up exhausted and anxious out s and dispirited for being unseen in our distress. Those who are so much more outwardly discernibly autistic *are* seen, accommodation is unavoidable, inevitable, guaranteed. And not remotely questioned.

So in a sense there is no ‘mild’, it’s true. You either get the outwardly mild but inwardly tortured or the outwardly clear as day but with an uncompromising inner landscape not constantly assailed by the requirement to accomodate NT environments exclusively, or at all. 

I feel I could have been more nuanced and articulate here. I apologise if it’s been heavy handed and caused offence. Very much the opposite of what I intended. 

Shardovan said:

I grew up next door to a single mother and her three children, approximately my age. Her two boys were non-verbal (language wise) though did make many loud noises, humming, singing, shouting etc. it was clear that it was compulsive, and that they were locked into their own world, relying on others to break into their bubble do to speak if any meaningful exchange of support was to occur Her daughter was different- she communicated in words, she wanted to play with me and my sister, she was able to help out around the house in a way her brothers simply could not. And yet something about her was markedly different

Shardovan said:

It says that I’m very aware that there are three very distinct levels of outward manifestation, innate challenge, etc. Level Three: that lady’s sons. Level Two: Her daughter. Level One: Me.

Once again, from your own experience, you understand this as I do.

So, when we talk about a 'spectrum' I never think I'm the same as those boys or share any of their dependencies ... I'm just not, and simply put, am much higher 'functioning'.

Shardovan said:

My own mother taught profoundly autistic and disabled children for her whole career as well, so again, having seen/heard so much relating to that (children and young adults so on their own world that they needed sensory rooms to even begin to interface with stuff outside their heads, or the most able kids who could go to the shops, run errands round the school etc. but still with significant societal challenges) I know that I have an additional ‘cringe’ factor, despite knowing its somewhat irrational, about owning without apology my own claim of autistic identity. But saying ‘I’m level one’ does help me do that without feeling I’m stepping on sensitivities. If that makes sense. 

That expresses perfectly how I see things too and why I think the functioning 'levels' matter and why, when answering questions on this forum, I always try to bear in mind that it's not all about people who 'function' as I do.

Thanks for this reply.

My own mother taught profoundly autistic and disabled children for her whole career as well, so again, having seen/heard so much relating to that (children and young adults so on their own world that they needed sensory rooms to even begin to interface with stuff outside their heads, or the most able kids who could go to the shops, run errands round the school etc. but still with significant societal challenges) I know that I have an additional ‘cringe’ factor, despite knowing its somewhat irrational, about owning without apology my own claim of autistic identity. But saying ‘I’m level one’ does help me do that without feeling I’m stepping on sensitivities. If that makes sense.