Hello, and welcome back to The Autistic Writer. At last! A week of annual leave from the day job. And I’m really ready for it, feeling absolutely exhausted, and having had a few days of not feeling well and sleeping badly. Hopefully, I’ll get to recharge my spoon reserve over the next few days. But for now, I want to talk about a subject I think is likely to become increasingly important to the autistic community over the coming years: What is the difference between an autistic person and a person who is not autistic? Furthermore, how can we identify, show, or prove the difference?
Recently, in a move of ridiculously unscientific quality, I asked the autistic community on Twitter a question: Do you believe there is a clear dividing line between autism and neurotypicality, or do you think there is a blurred sliding scale? I wasn’t sure what to expect, but a 50-50 split would not have been on the list. Nevertheless, that’s pretty much what I got. Of course, this vote is just a tiny survey of the opinions of autistic people on this issue. And opinions are formed in all kinds of ways. My own opinion was kind of wavering, and I was aware I had framed the issue in a way that could – potentially- have created a false dichotomy. When I’m sure about something – which usually means having done some research and thought things through in a logical way, trying to avoid emotional reasoning – I don’t have a problem voicing my opinion. But this issue is tricky and slippery. I’ve done a fair bit of reading on the subject, but I don’t for one moment believe I’m an expert, or that I have done more than scratch the surface. As with any subject I blog about, I’m happy to receive well-considered feedback, and I enjoy being educated. However, at some point, I need to have a working hypothesis, and that’s what this blog is about: trying to answer the question as best I can. Here goes.
The problem with a question of this deceptive complexity is that much of the passionate debate it can spark is the result of misunderstandings of the question. Often these misunderstandings are because the question isn’t very clear, leaving lots of scope for interpretation. So to come up with a working hypothesis, I first need to sort out what this question damn well means.
Sorting out this question goes right to the heart of what autism actually is. The huge barriers to defining autism include, but are not limited to: The formal study of autism is still an emerging field. Diagnostic criteria are subject to change. The field of autism is rife with conflicts of interest, fraud, dishonesty, and profiteering. The various definitions of autism currently extant are regularly – and with good reason – challenged by autistic people (for example, the definition of autism as a disorder). So can we narrow down what we are asking about in the question of the dividing line or sliding scale?
Let’s start with a basic assumption: Some people are autistic, and some people are not. If we don’t accept this, then we can’t even begin to ask the question. Accepting this premise also means we rule out those assertions guaranteed to piss off almost any autistic person that hears them; “We’re all on the spectrum,” and “We’re all a bit autistic”. But immediately, we hit a problem. The idea of a sliding scale suggests that maybe we are all a bit autistic. Or does it? On a blurred sliding scale it might be impossible to find a clear dividing line between autistic and not autistic, but somewhere on either side of the murky grey area, we might be able to point to “definitely autistic” and “definitely not autistic”. This introduces the idea of borderline cases in the grey areas, though.
Some people might find the idea of borderline autism problematic, some might not. However, we are thus far only talking about borderline as a vague concept. What would it mean in real life? Like it or not, when we get talking about some people being autistic or not, we are automatically making assumptions of diagnostic criteria. And as we know, diagnostic criteria are subject to change. I’ve already discussed the problems with formal diagnosis of autism at length on this blog, so I’ll just say here that thanks to increasing exchange of data among autistic people, we are fast approaching a point where formal diagnoses will become worthless. But for now, let’s go with this; the grey borderline area between autistic and not autistic is a matter of fine-tuning our understanding of the way autism expresses, and the more we understand, the smaller this grey area will become. If we accept this (and I suspect there are arguments against it), we can safely say there are people who are autistic, and people who are not autistic, and therefore there must be a difference between the two. This further indicates there must either be a clear dividing line that we cannot currently identify, or a fuzzy or jagged line between the two, which is not exactly the same as a sliding scale. A sliding scale suggests a gradual scale from autistic to non-autistic, with no kind of divider ever possible, opening up the “We are all a bit autistic,” assertion.
The first part of the hypothesis then appears to be that some people are autistic, some people are not, and thus there is a difference between the two. So, how can we show, define, or prove that difference?
The main way autism is evidenced is through a diagnosis; formal (such as the ADOS method), or self-diagnosed. The process for formal diagnosis is currently behavioural. The diagnostic process usually involves long sessions talking to a specialist, detailed questionnaires about your personal history from yourself and people close to you, and a collation of the specialist’s observations. Self-diagnosis often involves a combination of comparing your own experience to that of other autistic people, long hours of research and soul-searching, and the use of readily available online tests and questionnaires. In all cases, no matter how objective the the person carrying out the diagnostic process, the decision is ultimately subjective; the person makes an informed decision. What we do not currently have is, for example, a blood test that can give you a completely objective yes or no. For many people who wish for such an objective diagnosis, the idea of a brain scan that can identify autism is the Holy Grail of autism research. However, there are problems with that…
I will never put this blog behind a paywall. I want anyone, anywhere, to be able to access this content at any time. There are costs incurred running this website, however. So if you like what I’m trying to do here, please feel free to show your support with a small contribution via buymeacoffee.com.
Functional magnetic resonance imaging, or fMRI scans, are used to measure brain activity. In fact, what actually happens is they measure blood flow in the brain that is reliably correlated with brain function. The idea behind this imaging technology is that whenever a given area of the brain is active, blood flow to that area increases. Neuroscience has long been able to identify which areas of the brain are involved any number of functions, and so it’s relatively straightforward for an fMRI to show what brain functions are engaged at the time of the scan. So far, so straightforward. Except it isn’t straightforward at all, for many reasons. In fact, the way I’ve just described it is exactly the kind of surface-level explanation and oversimplification you’d find in many of the popular media articles that regularly inform us of supposed breakthroughs in fMRI technology, such as being able to identify autism. There have been many, many criticisms of fMRI techniques and the outcomes they claim. Some of this criticism is directed at parameters set up in the software, and some of it is to do with interpretation of statistics. These problems led to the famous Ig Nobel prize-winning research that claimed the brain of a dead salmon reacted when shown images of people.
I do not pretend any expertise in neuroscience, which is one of the most highly specialised and complex fields out there. The points we need to take from this, if not doing a deep-dive into the science, are: fMRI scans are complex and the process from scan to interpretation is not foolproof. Secondly, reports in popular media rarely get the science right. For example, one report in a publication aimed at parents of autistic children claimed “A future where an autism brain scan facilitates accurate, earliest possible diagnoses of autism spectrum disorders (sic) may not only be possible but probable”, and went on to cite a study (Hazlett et al, 2017) of which the authors have stated, “The algorithm described in this paper will require replication before it could be considered a possible clinical tool for predicting ASD in high familial risk infants, as false diagnostic predictions have the potential to adversely affect individuals.” Work in this field continues.
If the science progresses to the extent that the neuroscientists rubber-stamp an fMRI diagnostic procedure for autism, we will still be left with an element of subjectivity, however. As papers on the research openly admit, false positives and negatives are possible. There is a flirtation with circular reasoning in the research, too. If a test takes a group of people diagnosed as autistic via the ADOS process, scans their brains, compares the scan to allegedly neurotypical people, and calls the differences autism, then where lies the difference between fMRI and ADOS processes, really? Furthermore, how can fMRI achieve greater accuracy that ADOS when it takes its starting point from ADOS diagnosis?
In general terms, the research done so far indicates a thickening of the brain’s frontal cortex and thinning of the temporal lobe are linked to autism. But it appears to be unclear how much respective thickening or thinning can be seen as a tipping point from neurotypicality to autism. It would appear that even an accurate reliable fMRI diagnostic scan would only narrow the grey area, or make that fuzzy/jagged line slightly less fuzzy or jagged. Diagnostics in this field are rarely cut and dried yes or no answers; someone has to make a judgement call.
This is, you may agree, a fascinating and important area of autism research, and yet if you are anything like me, you will probably also agree with my feelings on this subject – feelings best summed up as I don’t give a crap. But what of my working hypothesis, you may ask, once you’ve got over the shock of my bluntness.
I’m sure many researchers are getting great careers out of this exploitation of ill-founded public fear of autism. But all it is ever going to do is maintain that fear, and kick the can down the road in terms of answering the question, is there a clear dividing line between autism and neurotypicality, or is it a blurred, sliding scale? For me, this puts the research into the same category as the formal (medicalised) diagnosis of autism; a process that can and probably will eventually be consigned to unfortunate history by the autistic community. It will come as no shock for readers familiar with this blog to hear me say the best people to identify autism in an individual are other autistic people. While we might struggle to find a dividing line between being autistic and being neurotypical, there are so many commonalities in the lived experience of autistic people that we can quickly come to a conclusion over a relatively short conversation. Of course, that isn’t foolproof, which puts it roughly alongside the reliability of fMRI scans. But the thing is, an fMRI scan has nothing to say about the lived experience of autistic people, the things we feel, and the challenges we face. So, what is my working hypothesis? It’s this…
Autism is a real state of being for autistic people. It is characterised by fundamental differences in the experience of life, both sensory, physical and social, than the neurotypical. These differences are centred in the brain. The brain is the most complex object known to humankind, and to attempt to reduce the experience of autism to an algorithmically interpreted fMRI scan is a fool’s errand. The best way of identifying autism in an individual is via a consensus between the said individual and their autistic peers – a consensus that would in no way be formalised as a vote or membership or anything so crass, but by the general method currently emerging naturally from the interactions of autistic people. This leads to understanding that the question of the division between autistic and neurotypicality as posed at the start of this discussion is in fact a false dichotomy: the identification of autism can be, and probably will widely emerge as, a choice of self-identify based on the shared experiences of autistic life. This hypothesis will no doubt infuriate many people – most of whom will not be autistic, of course. They will be simply unable to understand how a person realising they are autistic and choosing to identify as such. – even if only in private – is not a frivolous or fun choice. And that lack of understanding is about as close as we will ever get to seeing a true dividing line between the neurotypes.
That’s all for this week. Until next time, take care.
Darren
You can find The Autistic Writer on all your favourite social media channels
Why Do I Write This Blog?
When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism. I quickly learned that there was a serious shortage of information and resources for adults in my situation. With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery. Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers. I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.
You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.
The Autistic Writer 