Some Thoughts On Autism

It’s often been suggested that I am on the autistic spectrum, probably more Asperger’s than “classic” autism. I don’t agree with this assertion for a variety of reasons, but as well as getting into that I want to talk today about various issues surrounding this.

The only official diagnoses I have are ADHD, which I discuss here, and gender incongruence, which I’ve been into in great depth on another blog devoted to this issue. I see both of these as forms of neurodiversity, and in fact I believe that this entire household of four people is entirely neurodiverse. But there’s also the issue of self-diagnosis, which has a number of issues associated with it. On a somewhat different issue, I would be extremely surprised if I wasn’t diagnosable as depressive, but I’ve never pursued this. In fact I’d be so surprised if I couldn’t get that diagnosis that I’d probably end up doubting the competence of the people who hadn’t diagnosed me rather than the fact that that fits. The classic questionnaire for that, used for self-diagnosis but officially approved, whose name currently escapes me, shows me as having mixed generalised anxiety disorder and depression. I simply do not care about those labels: if the world was a less depressing and worrying place, I’d be fine, so that’s how to address that in my case. This isn’t supposed to be dismissive of anyone else’s conditions. I also have a strong family history of diagnosed depression which I won’t go into for confidentiality reasons. I should also point out that whereas I have self-diagnosed in this case, I am actually an experienced clinician although the objectivity goes out of the window when your patient is yourself.

But the case for me being Aspie is different. On going through the process of diagnosis for gender incongruence, then known as gender identity disorder, this did touch on being on the autistic spectrum and there is considerable “comorbidity” there in that sixteen percent of people who are gender dysphoric are also probably on the spectrum as opposed to 0.03% in the general population. However, it needs to be born in mind that ideally, most diagnoses should be to the advantage of the patient, and for me being diagnosed as this would drastically increase my gender dysphoria. I need to make something clear before I go on. When I look at the way people on the spectrum behave and think, it strikes me as “normal”, in the sense that I can often empathise with them. Neurotypical behaviour often comes across to me as if the people exhibiting it know some kind of secret the rest of us haven’t been party to and I often find it baffling. It’s like they’ve got a rule book which wasn’t given to me. Hence it could be said that my first impulse in behaviour is often to do things in such a way as to be labelled as autistic. In a way, autism is my “normal”.

Simon Baron-Cohen is well-known as the successful promoter of the “extreme male brain” theory of autism. That is, he sees being on the spectrum as resulting from a greater response of the central nervous system to the action of androgens. It’s often said that “I am my brain”, and I have some sympathy with that except that in fact I think identity is probably either larger or smaller than the brain rather than the exact size. I am, for example, not my basal ganglia because if I had Parkinson’s I imagine it would feel like an obstacle to me and not something I did naturally, and if someone is brain-dead it’s still the role of their next of kin to give permission to turn off their mother’s life support. In such cases, people obviously can’t be their brains because their brains are hardly functioning at all. And they usually aren’t functioning at their funerals either. Even so, there’s a lot of truth in the idea that I am my brain, and if Baron-Cohen’s theory is correct and I’m on the spectrum, that would make me extremely male. The only reason this thought wouldn’t make me suicidal is self-hatred – I would want to continue living as a punishment to myself. Someone who thinks more straightforwardly probably would consider killing themselves to be the appropriate response at this revelation. Therefore it really wouldn’t be good to get a diagnosis of Asperger’s for me. I find it, incidentally, very strange indeed that other trans women don’t find the idea of being on the spectrum absolutely devastating.

Of course it is also true that Asperger’s is underdiagnosed in women and tends to manifest itself differently because of their different social roles. Incidentally, I’m referring to Asperger’s here out of convenience and recognise the problematic nature of the name and the idea that it’s a useful concept as opposed to the rest of the spectrum. A major difference between the presentation of the “syndrome” in women is that they tend to mask more effectively, or at least are called on by social pressure to do so, than men. Masking is the inauthentic performance of neurotypical behaviour, and the patriarchy coerces women to do this far more strongly than it does men. It can become a habit, but it tends to be very tiring and lead to withdrawal and acting out in apparently safer circumstances. For most people it would be better if this pressure wasn’t exerted. Since it’s a vital survival strategy for women to have to do this, the learning curve is very steep and has to be traversed as an urgent necessity, and it’s claimed that this leads to them being underdiagnosed. This is not my experience as a trans woman because the social role carved out for me is masculine, and probably at least as baffling and hard to fit as not being “autistic” is. Therefore that long list of criteria which you may be familiar with about how women Aspies are not like men doesn’t apply to me, just as, presumably, it doesn’t apply to any other trans women unless they transitioned really young.

But I can certainly get on board with the idea that Aspergers is literal testosterone poisoning and that it stops my brain doing what it’s supposed to do. I would like to know more about the research supporting Baron-Cohen’s theory but I avoid finding it out because I fear it will be triggering, so I’m going to move on in my ignorance to touch another issue.

I said before that I am not a textbook case of an Asperger’s person. If I do a questionnaire on the issue, it tends to show that in certain aspects I am indeed strongly typical of an Aspie, but there are always a large number of other answers which show me as the opposite of that. This online test shows me as having “many tendencies of an autism spectrum disorder”, and yes, I know it’s not a good idea to set too much store in such things, but I’m also perceived as being very polite and diplomatic, I choose not to speak in groups rather than avoid it because I think I talk too much and I don’t like the sexual politics of formerly male-assigned people talking more than cis women, I make a point of varying daily tasks out of habit, my ADHD probably contributes to poor planning and I find it hard to imagine fictional characters visually but that’s probably to do with prosopagnosia and I don’t know if that correlates with being on the spectrum or not. I recognise people from context, clothing style and hair rather than faces. This, I think, confirms what I said before: that although I have Aspie tendencies I am probably better described as “neurodiversity not otherwise specified”, if that exists as a diagnosis.

Religiously I also have a number of issues with the very concept of autism. The dominant theory of autism is that it involves the absence of a theory of mind, i.e. impaired ability to empathise. This is deeply problematic from a traditional Christian perspective because it seems to entail that autistic people are incapable of sin, which is essentially selfishness in my view, and if the idea that “all have sinned and fallen short of the glory of God” is correct, it has to mean either that autistic people do have a theory of mind and can empathise and therefore do commit sin, or are capable of doing so, or that sin is something other than selfishness. Now I accept evolution of course as well as a lot of other things which some Christians question or reject, but on this occasion I have allowed my religious beliefs to interfere with my perception of a scientific perspective. Another feature of autism is that there is no filter to input or output, as it were. That is, we (assuming I am Aspie) are unable to filter out distracting sensory stimuli as well as being unable to, for instance, “blurt things out” which are seen as inappropriate. The input side of things could be particularly relevant here as there is also a salience theory of autism, or rather, the “salience network” dysfunction hypothesis of autism. It amounts to this. There is a whole blizzard of sensory impressions presented to the brain, something Kant called the Manifold (actually he presumably didn’t call it that but I don’t know what German word he used). Now imagine trying to spot something like eye contact or a tone of voice out of all that stuff. I think the result of this is that one doesn’t get the opportunity to develop social skills, and it then becomes harder to do so as one matures and the brain becomes more hard-wired – one gets “stuck in one’s ways”. Although this opinion has been foisted upon me because of the fact that I’m Christian, I do think it has its merits.

Another view of the failure of empathy in autism is that it results from the very neurodiversity of our (is it our) brains. When a neurotypical person puts themselves in the position of another, they stand a better chance of anticipating their thoughts, feelings or behaviour because they’re effectively attempting to simulate the inputs and outputs of a brain similar to them. If the person attempting this is on the spectrum, they are imagining an atypical brain in that situation and unless the person concerned is themself on the spectrum, they’re less likely to be able to predict what’s happening for them. Hence it isn’t so much a simple failure of empathy as the inability to understand how someone else’s brain works. Note also that if you turn this round and imagine a neurotypical person putting themself in the position of someone with Aspie, and failing, for example, to recognise clothing sensitivity or aversion to persistent loud noises, this is a similar failure or empathy. It’s just that there are fewer of “us” than there are of “them”.

Lack of a filter has also been evoked to explain apparent failure of empathy in another way. It’s easy to become overwhelmed by sensory inputs as someone on the spectrum and this can lead to shutting down. Bearing in mind that like other diagnoses neurodiversity frequently doesn’t fit into a neat box, ADHD people can also be overwhelmed by stimuli. Therefore they have a coping mechanism, which may not actually be coping by the way so much as descending into a kind of breakdown, of shutting down and not perceptibly responding. If a particular feeling or situation is overwhelming to them, including the impression of emotion, the very fact that they can empathise might lead to this kind of shutdown, and it then looks to a bystander that they’re not responding. The fact is that they may be responding only too strongly.

I’m not an expert on the autistic spectrum by any means, and I’ve already warned about the inappropriateness of self-diagnosis. Nevertheless, I hope I’ve managed to express my perspectives on this issue. I’m also aware that what I’ve said may be controversial. If so, please feel free to put me right in the comments.

My ADHD

I’m not keen on the idea that a person has internal conditions which are problematic. I prefer the social model of disability, which is that society disables people. For example, most people in the West eat dairy, and lactose intolerance is therefore seen as a disorder, but it wouldn’t exist if there were no sources of lactose in the diet. Also, there’s a strong tendency for disabilities and disorders to become part of one’s identity, and this is not helpful. That said, I have two official disorders which could be shoehorned into a psychiatric diagnosis should one choose to do so. One of them is very obviously gender incongruence, which was diagnosed sometime early last decade by the NHS. But I also have another diagnosis which is much older, from about 1975 if I recall correctly, and that’s what’s now known as ADHD but back then was called “hyperactivity”. Because I was understood to be a boy back then, I got this diagnosis much more easily than I would’ve done otherwise, and I think my ADHD shows itself very clearly in this blog. I haven’t been very closely focussed on it much of the time, and of course that may be part of it.

There’s probably no doubt that I’m neurodiverse and I would frankly be astonished if I couldn’t be diagnosed easily as depressive, but I don’t think there’s any good reason to pursue such a diagnosis as it wouldn’t be useful and I don’t consider my depressiveness to be essentially problematic. There’s a whole plethora of other things going on, some more nebulous than others, including probable dyspraxia, possible Geschwind Syndrome and a weirdly split form of what might be thought of as Asperger’s, which again suffers from being underdiagnosed in women and also as manifesting differently in us. The ASD aspect of my personality is, however, odd, and not officially diagnosed, because in some ways I’m a classic aspie but in others I’m almost the opposite. The way I think of myself is as in a wastebasket diagnosis which may or may not exist, but which I would call “neurodiversity not otherwise specified”. I do not consider myself in any way disabled and I place any problems I might encounter outside myself. This is partly because epistemologically I am more externalist than most people: concepts are not mental but objective entities which exist independently of being conceived of, in spite of the etymological link between those two words.

But none of this so far has been particularly personal, so I shall now remedy that and talk about my so-called “hyperactivity”. My experience of my first primary school was that it was under-stimulating. Nothing on the overt curriculum was new to me, and I used to hope for a while that teachers would introduce something I didn’t already know about, but it never happened. I found this very disappointing, and came to regard school as a distraction from serious academic study. This was okay because I could still pursue my own hobbies in my own time and got fairly far with those. It’s notable that when we later came to ensure that our children were aware that school attendance was optional and they opted not to go, that the other families with whom we participated in education had a strong tendency to perceive school as involving overachievement rather than underachievement, whereas my initial expectation of our children was that they ought to be able to knock off a few IGCSEs by the time they were seven or so. However, I don’t believe in hothousing and that didn’t happen. Bearing in mind the significance of all this for a child at primary school, I would say that a hyperactive child is frequently bored and that almost any child, but not me, needs physical activity to stop them moving around at other times in a way the staff deem problematic. I also think that, like many other pathologised neural differences, hyperactive people are likely to have filled some kind of social niche which is currently not recognised in most post-industrial societies, or for that matter industrial ones, and no, I don’t know what that is. I’ve also deliberately used the inaccurate term “hyperactive” here because one of the D’s in ADD and ADHD stands for disorder and I don’t consider myself disordered in that respect. However, of course not all people who can be fitted into this diagnosis are hyperactive and I definitely wasn’t.

After my diagnosis, I was on medication for two years. I don’t know what it was except that I’m aware that it was neither Ritalin or anything like it. It was a sedative. After a year or so, I began to feel uneasy and tended to get depersonalised a lot, so it was discontinued. It’s been said that sedatives are the opposite of what someone with ADD needs to conform because it sedates the faculty which would dampen down their activity, help them to extend their attention span and the like, and to that end I sometimes wonder if the fact that I find lavender oil stimulating – actually it makes me irritable – and rosemary sedating is linked to this effect. Likewise, and this is of course just anecdotal but also phenomenological, the colour red is a low-energy, downer of a colour to me and blue is high-energy and cheerful, and I strongly suspect this has something to do with this aspect of my neurodiversity.

One of the projections made at the time of my diagnosis and afterward was that food additives worsened the condition. I find this idea rather akin to that other idea, that vaccines cause autism. It isn’t that it’s right or wrong so much as that it frames ADD as problematic and therefore having an aetiology like a disorder. Having said that, my experience as a clinician strongly suggests that the likes of coal tar dyes and in particular aspartame are quite harmful, and the liver failure our son experienced is attributed by the orthodox medical profession to the formation of immune system complexes between self antigens and erythromycin, which is similar to a food dye, hence the word “‘ερυθρος”, meaning “red”, in its name. There’s a very strong tendency for suspicion of aspartame in particular to be stigmatised, but the people who do that cannot have had my experience of many patients whose lifestyles and diets appeared to be flawless apart from the presence of aspartame in their food whose health problems disappeared once they eliminated it and did absolutely nothing else.

From a Marxist perspective, the presence of colours and preservatives in food and beverages is substantially about the alienation of use and exchange value. Under capitalism, a commodity has two different values. One is its actual value, so for example an apple is nutritious and enjoyable. It also has exchange value, and this often requires it to have, for example, a longer shelf life (preservatives) or appeal more to the senses (food dyes). These often reduce the use value of the commodity and this is a major reason why capitalism is irrational and needs to be superceded. In the case of food, it may become less nutritious due to the presence of additives and the fact that it can be stored for longer. Therefore, whether or not the likes of azo or coal tar dyes are relevant to ADD, they shouldn’t exist. There are plenty of directly biochemical alternatives such as anthocyanins, chlorophyll and carotenoids. Note that I’m not making a distinction between the natural and unnatural here as I consider that dichotomy spurious.

One practically all-pervading experience I had during secondary school might be called “the paradox of effort”. My school had a monthly effort report system where if you were deemed as trying harder than average you got a plus, if you were working about average in their judgement you got a zero and if they considered you were slacking you got a minus. To me this felt like a pit of despair, but apart from that the months when things came easy were when I got good reports and I got poor ones when I felt I was striving. A further problem, connected to dyspraxia I think, was that I got a minus in metalwork the first month, and getting a bad initial report was unknown. It was also true that metalwork seemed too stereotypically masculine to me and I didn’t like it for that reason. That gave me a reputation as lazy. I share this paradoxical experience, though, in case anyone else has had a similar experience. I don’t know if I’m lazy or not. I think I am to some extent but some of that view is internalised from this rather formative period in my life.

It’s a platitude, but it’s probably worth saying that in a way having internet access is a bit like an alcoholic having a kitchen tap which dispenses alcohol, if you want to pathologise ADHD. This form of distraction is so much more common nowadays than it used to be, and I think it’s led to a further shortening of my attention span. You can see some of this in the way this blog so often tends to flit around and ramble off-topic, although that’s probably partly down to my compulsion to write. I also tend to write things down quickly for fear of forgetting them.

ADHD also has comorbidities, one of which is schizophrenia. Others are generalised anxiety disorder, depression, intermittent explosive disorder, dyslexia, dyscalculia, insomnia, restless legs, substance abuse, phobias, psychopathy and oppositional defiant disorder. Looking at that list, I can see some of them as resulting from difficulty in fitting in, making progress or otherwise being successful. Of them as applied to myself, I have not one jot of dyslexia or dyscalculia but used to suffer from insomnia very badly. Although I’m not myself psychopathic (and yes, I do know that’s a deprecated term), my father is and the genetic element that exists in personality disorders has presumably led to me having a disordered personality but the specifics of antisocial personality disorder don’t apply to me at all. My father also has intermittent explosive disorder. I do have restless legs, but I’m practically teetotal and a non-smoker, and I now have two cups of coffee a day and went without for five years once. That, actually, may be a form of self-medication because those five years seemed to involve endless withdrawal which I hoped for a long time would come to an end but just didn’t, and I ultimately decided that even if caffeine did shorten my life it wasn’t worth not being on it, so I just went back to it.

Getting back to gender and neurodiversity, probably the worst gender dysphoria of all I feel by far is in the possibility that I may be on the autistic spectrum. If I think about it too much I would probably feel like ending my life, not because autism is a problem – it absolutely isn’t – but because of Simon Baron-Cohen’s “extreme male brain” theory. This particular line of thought doesn’t really belong here though. The same does not apply to ADHD in my mind. I’ve never perceived ADHD, considered as internal, as having anything to do with gender. However, it’s also true that it’s underdiagnosed in women and presents differently, just as being on the autistic spectrum tends to. ADHD is just as common in women as men, and consequently tends to be misdiagnosed due to the erroneous and probably structurally sexist attitude that it’s less common in girls than boys. Regarding schooling, girls are more likely to do more homework and ask their parents for help to compensate than boys are. In my case all this is complicated by having been misgendered in my childhood. Teachers are less likely to notice girls who are either inattentive or hyperactive (two different ways in which ADHD presents itself in children) than they are boys, and since I was perceived as a boy, it’s likely that this would’ve been picked up more in me. In fact it wasn’t, due to the fact that there were forty-six pupils in my primary school class, and my mother noticed something instead. This also means that women are more likely to proceed through their lives without being able to identify this feature and the disabling influence society may have on “people like them”, and it’s therefore likely to be more of a revelation to them when they realise it applies to them. This doesn’t apply to me because I’ve known about it since I was a child although I don’t often think about it nowadays. It might, though, also help if the stage at which one is diagnosed is at a point in one’s life where one has a certain degree of productive self-reflection. Whether this applied to me as an eight year old, I don’t know. I should probably say here, because it doesn’t fit in anywhere else, that it can be expensive being ADHD because I can never find anything and am very messy (although I also believe that society has got it wrong in where they position optimum tidiness, but that’s another story).

I haven’t really mentioned the criteria for diagnosis yet because this is more about my personal experience. It’s also the case that what I can attribute clearly to ADHD in my life and experience may be obfuscated by other stuff going on in my head such as the weird split aspie/”Williamsoid” state of my emotional life and empathy. As I said, it’s neurodiversity not otherwise specified which includes ADHD-like features which are striking enough to be noticed and fit into that diagnosis rather than just simple ADHD. Then again, textbook cases of most conditions are more an exception than a rule and the real mystery is how any condition at all resembles that of other people, so maybe I’m not unusual in that respect. But for the sake of completeness, this is ADHD according to the medics:

ADHD has two main aspects, and “sufferers” tend to fall into one or the other (who’s inflicting the suffering though?): inattention and hyperactivity along with impulsivity. To be diagnosed, one must have at least six of the following signs as a child, or five as an adolescent (because it’s said to “improve” with age): forgetfulness, distractability, losing important items for daily activity (in my case this tended to be my glasses or PE kit), trouble organising things, often failing to pay attention to school work (I once answered the question “which is the biggest whale?” with “the blue whale is the blue whale” and said that Elizabeth of England wasn’t a very good “king” (although I tend to mix gendered nouns and pronouns up anyway, so this may not be a sign)), difficulty in maintaining attention on tasks (not a problem so much as a child as it is now), failure to finish tasks (this drives Sarada round the bend actually because this extends as far as not finishing jars of peanut butter and the like). But in my defence, at no time during my childhood did I ever mislay my mobile phone!

On the impulsiveness/hyperactivity side, which influenced me less but was there to some extent, again there need to be at least six as a child or five as an adolescent: acting as if driven by a motor (this happens when I’m tired but not otherwise – I’m pretty torpid a lot of the time to be honest), excessive talking (definitely, and more so as a child – I used to be separated from the class for talking too much), answering before a question is completed (yes – sounds useful for ‘University Challenge’), trouble with turn taking (no), unable to participate in leisure activities quietly (not quite, more unable to be inactive but fine with being quiet), fidgeting (yes – apparently I have a genetic propensity to move around a lot when I sleep as well), runs about or climbs a lot (no, although I did walk a lot – I don’t think this is significant), tends to interrupt a lot (no, but this is also part of a typically masculine use of language so it probably bears closer examination). As an aside, it’s notable that although these are supposed to be present in different settings, such as at home as well as school, a lot of these seem to be very firmly to do with how a child behaves in a traditional school setting, which although it strikes me as potentially irrelevant and more a problem with schooling than anything else, does at least mean that problems encountered as an ADHD adult might be detected early because of the kind of educational system this society has been saddled with. There are several criteria outside the specific signs. The child must have exhibited these before the age of twelve, they must be explained better by this diagnosis rather than another (this is boilerplate – it’s in practically every set of criteria for psychiatric conditions), they must, as I’ve said, be present in more than one setting (this takes some of the issue of schooling being a dysfunctional environment out of the picture), and the symptoms must interfere with school, work or social function.

As I’ve already said, there are two poles here and a grey area in the middle, between hyperactivity/impulsivity on the one side and inattentiveness on the other, and I’m more inattentive than impulsive. I could probably do with being more impulsive in fact.

As an adult, the NHS observes that it can be difficult to maintain friendships or romantic relationships, lead to poor driving (I’m actually the opposite although I have never had enough money to take a driving test) and one tends to underachieve at paid work or in education (which explains never having had a driving test!). I have in fact underachieved at education, partly because I spread myself too thinly, which is indeed to do with ADHD, and partly just anyway, although it may not be obvious because I have postgraduate qualifications. This is, however, also substantially due to internalised transphobia and toxic masculinity on the part of others at my university department in my case.

That, then, is a rough sketch of my take on my ADHD, and I hope it helps. In keeping with the poor planning involved, this post will now end rather abruptly.