Now there’s a question that is very dependent on who you are asking internal/external, and when you are asked the question.
TLDR: It is probably useful to think of at least some of us within our system in those terms. We have a developing understanding of this, and feel that it is a sub-optimal description, and that we may have just developed through environmental pressures to exhibit autistic traits. But we are open to the idea pre-assessment.
Our understanding of autism
Well that has certainly developed dramatically over the decades. From zero awareness, through cliche, to quite a good grasp on what we are talking about.
As a younger person, well we had no idea. Sure, we encountered neurodiverse people, specifically as our now wife did her work experience in what was termed at the time as a “Special Needs School” and had that always as an interest as a part of her teaching career.
But realistically, it wasn’t until we fell into teaching ourselves many years later that this developed. We started teaching high school computing (and other subjects from time to time) which meant we had at least a passing knowledge in our training and professional development. Over the years we kind of developed a knack for teaching certain types of students in alternative ways. Not just autistic, but ADHD, dyslexic, and so on… What we would consider the interesting and fun ones.
Sadly, we ended up leaving teaching after many years when the drive for performance in league tables went off the rails. Essentially, chasing grades was never ideal, but at least most students were served by it as the qualifications, if not the best education, at least opened doors for them. However, when England introduced weighting on some subjects as part of grade reform, it meant that a student who took & failed a subject would receive double points for the school in for the subjects they passed. So a student that took Computing Science and failed would get double points for a less academic subject they passed. So instead of teaching a practical and vocational computer based course to non-option students and Computing Science to those that chose it, we ended up with a class that had no desire, aptitude or use for a Computing qualification forced onto it. They knew they wouldn’t get C grades or above, wouldn’t use it in the future, and would have in the previous year done the vocational option that we would have got them to pass at C or above.
When the school looked to make redundancies due to a reducing cohort, we literally competed with a colleague to be made redundant. So disillusioned were we both.
Another crash and rebuild occurred.
We re-evaluated and relocated. Moved up to Scotland having convinced ourselves that teaching was still a good thing, but we were not playing the grade game anymore. Progress from a student perspective, not external assessors was key.
So we got a job teaching in a residential school for autistic students, many non-verbal, often very remote from their families as the level of support they needed was such that they could only access it in a handful of locations such as this. Which obviously required us doing a lot of research and reading around autism and associated neurodiversity in the lead up.
The following time working with students though was where we really learned about how autism works. Or at least how it manifests and effects interactions, communication and behaviours.
We subsequently taught in mainstream schooling at a primary level, with additional needs students that were mostly autistic, but also ADHD etc…
What we fundamentally came away with is that if you have met one autistic person, you don’t know what autism is. You might just, if you are open to it, understand what autism is to them.
That might sound like some flippant way of saying we do not know. But what it is, is an understanding that an autism diagnosis is a compound diagnosis that is formed through a series of observations around that individual’s interactions with the world, and the history of these interactions.
Sure we can quote DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) or the ICD-11 (International Classification of Diseases) criteria. But, if you go and look at them, they have very wide possibilities as to what is classed as social interaction/communication difficulties and repetitive patterns of behaviour. Sure, there are plenty of tools AQ/DISCO and so on to help refine this. However, they are very much at the mercy of the observer and the situation/evidence they choose to observe. That’s not to say that we have bad faith in these things, just that we are as aware of their limitations as we are of their usefulness.
It was always, determine the need of the student at this time and in this circumstance, that drove us. Their diagnosis, notes, etc… Well that gave us a clue as to what roughly we might start with, but we always felt it was a crude approximation, and one that rigidly sticking with in the face of constant evaluation served nobody well if their needs changed.
The word spectrum is often applied to autism, indeed ASD (autism spectrum disorder) being the current terminology. This is useful, but often people will refer to individuals as being somewhere on the spectrum. As in, this person is here, in relation to this person, and that non-autistic (allistic) person. Which doesn’t reflect some of the nuance.
As autism is reflected in social interaction/communication, for example, it can manifest to a greater or lesser degree depending on the situation. So while you might think of of someone who is autistic as having a baseline position on the spectrum, it is in our experience, better to think of them as having a range on the spectrum that they can move between depending on what is happening and how well prepared they are to deal with it.
So how do we view ourselves?
Well, when it was first mooted that autism might be applicable to us, by our wife who we trust in her judgement of such things having had more than enough experience working with autistic students, we did not reject it.
Although we did get it completely backwards to a certain extent.
I am writing this as our Analyst, though we have mulled these ideas as a group.
Our Engineer is non-verbal. She has those facets of retention/classification and fascination with detail, those things that are often observed in autistic people. So of course I thought, sure we are autistic, but not me…
Which in retrospect is so daft, and didn’t last long once we mulled it over. Probably, there is internalised fear of labelling, as we have witnessed some appalling treatment of neurodiverse people over the years. Not common, but enough to know the stigma and risks that can be attached.
It didn’t last long. The way I as our Analyst model and monitor the world, manage social interactions, classify information, all fit the profile. Many of our behaviours and coping strategies are routine/pattern dependent.
So our current working hypothesis is that 2 or more of our system can be viewed in autistic terms.
We’ve done the online tests, filled out AQ forms and struggled with the ambiguity of them, scribbling as such all over them, which probably says as much about the way we work as the actual answers. Enough to know we have all the signs for someone to consider us autistic.
At a personal level, looking at the fact that we have never had “friends”. Acquaintances, colleagues, friends of the wider family, but personally nobody that fits that category. They are too hard to maintain/develop and we as a system don’t get lonely.
Well, that one, kind of hit home when we reflected on it. It was a classic mask it from the self as well as masking for others.
As a system, we do not have any consistent memory (snippets) before we went to high school at the age of about 11. Our mother, who we are estranged from and lives in another country, claims to have not known us since the age of 10. So, much of the traditional assessment for autism looks at childhood development, which we can neither speak to, or have someone we trust to talk about it. (If one of us has those memories, for whatever reason they are not for sharing, but we trust our system members in that regard. If they don’t know it’s fine, if it’s best kept apart, their judgement we trust.)
Because we are a plural system, we formed into capabilities. It is why we label each other by role and not names. Names make no sense to us whatsoever. When we share stuff internally, we know who we each are and who we are addressing without that need for a linguistic label.
On that basis, each of us is quite specialised, coming to the fore to deal with things according to which of us is best suited to dealing with it. That’s a little imperfect as a description, but that’s the basics.
So, as we have no concrete knowledge of how we formed as a system, born into it or split at some point, we have this niggling thought that we cannot rule out that we developed autistic like behaviours as a function of of roles and the way we interact/view the world.
So, born autistic or made autistic? If indeed that is what we are.
We don’t reject autism, as our initial fleeting compulsion was to do so.
But it is a limited way of framing our interactions. One that overlooks the impact of gaps in each system members memory and how that impacts our social interactions also. (We can share memories to an extent, but it is not the default, something we have coped with for a long time)
Well, hopefully the upcoming assessment will help us develop our understanding of our system. We don’t need external validation to know what we are and how we function. But people asking interesting questions that we can reflect on are always useful when it is done appropriately.
It’s anxiety inducing though. As sadly, we are not sure where we go next if they say we are not.
Much of the troubles we have are because we lack sustainability, not capability, and we cannot get help with that just by asking.
So a lot rides on a diagnosis, and we are desperately trying to not mask and present what they want to see.
So, with 7 days to go… Just a little bit stressed.
Who knows what the next few weeks will bring to light.