INTRODUCTION
I’ll come straight out with it –
it’s a subject I know little about and what follows are just my thoughts based
on my academic and lifestory background. What I sincerely hope this isn’t, is a journey into the
rabbit warren of ‘trans’ et al., although it may be impossible to avoiding
skirting its edges!
Essentially, all I shall write about is summed up much more
easily in Wikipedia!
What stimulated me to write is a memory of how 'trans' issues became media fodder and how much damage that has done to people identifying as LBGTQ+ and their friends and families. With the lack of commonsense that pervades social media, control of understanding of neurodiversity could become another battleground.
I should also say that my good friend Dee has written about her own experience of neurodivergent conditions on her blog, here. I had already staring writing this before her post appeared and although I was then hesitant about continuing with mine, my approach is as an outsider looking in, not to the detail as much as the interaction with wider society.
This is a very long piece which I have split up and some of the ideas may seem overly wordy, complex, possibly stupid. The wordiness is my attempt to embrace ideas, the complexity is because the subject is complex, the stupidity is all my own.
Pathology and Philosophy
Pathology and Other Words
One thing I should state at the
beginning, having witnessed in my lifetime the [criminality/ pathology >
decriminalising /de-pathologising] of homosexuality, I am very wary about the
simplistic addressing of the human experiences of certain minorities as
pathology. If the history of homosexuality isn’t enough to make one question
how men (for it was always men in the past) have dictated what and what isn’t
pathological, there’s always ‘female hysteria’ and ‘trans’ (in its totality) to
refer to. To that end, in general, I write of neurodiverse ‘experience’ rather
than ‘condition’.
However, I have had exposure in my
wider family and elsewhere of certain experiences (OCD, mute
autism, body dysmorphic disorder etc.) in people that have been so severe that
they needed third party management for the wellbeing of all those involved. In
such cases, the term ‘condition’ is appropriate.
The Origin, Meaning and
Significance of the Neurodiversity
Neurodiversity is a relatively new
term, coined in 1998. It appears to have first been used in respect of the
autistic experience.
The term ‘neurodiversity’ most
often arises in the context of people who have been diagnosed with ASD (autism),
ADHD, OCD, dyspraxia, dyslexia, dyscalculia, or Tourette's. The term
‘diagnosed’ is normally related to a judgment of illness (in these cases belonging to the
Diagnostic and Statistical Manual of Mental Disorders (DSM)). Yet, I
took the above list and term from a site promoting ‘the value of embracing
cognitive diversity’ and, to my mind, it illustrates how, possibly quite
innocently, such diversity can be pathologised. If that seems a rather oversensitive
reaction to the use of the term ‘diagnosis’, consider that homosexuality,
aspects of transvestism and transsexuality, and female hysteria were all until
quite recently to be found in the DSM. I doubt the use of the term ‘diagnosis’
in respect of these latter experiences would be well received today. Consider
also that ASD, as the BUPA (an English health insurance company) website usefully puts
it, “ ... is a spectrum. This means that different people are affected in different
ways and to different degrees. Some people may just have a few minor problems
while others may need more support and care.”
(The concept of a spectrum (not the simplistic one of TV<>TS) is also
found in trans issues. With
trans, the term ‘dysphoria’ is commonly used, and I think that has good
parallels with ASD experiences, whereby the intensity of experience has an large range which may extend to a pathology, but not necessarily.)
Of course, this trend to pathologisation may
simply be a reflection of the evolution of medical thinking. Rightly or wrongly,
however, having ‘neurodiverse’ experiences embraced as a pathology may not only
be unhelpful to an individual who is well assimilated into societal life, but
expose them to future risk.
The division between health matters and politics has
been increasingly blurred over recent years. A prime case is of ‘trans', which
has occupied much print ink over the last decade. The fundamental issue is that
‘diagnosis’ leaves even the most insignificant of neurodivergences open to
political influences and manipulations, particularly by those driven by dogma. There is a
better approach to neurodiversity.
“Neurodiversity describes
differences in brain function from person to person that affect daily mental
functions. It's a philosophy that embraces differences in brain function and
behavior as a natural manifestation of humanity's variety rather than viewing
them as wrong or problematic. It celebrates how these different ways of
thinking, processing, and learning make us unique rather than seeing them as
deficits.” (https://www.verywellmind.com/what-is-neurodiversity-5193463)
By considering it as a natural
manifestation of humanity’s variety, it opens the doors of perception, although
not necessarily in quite the same way as William Blake (The Marriage of
Heaven and Hell, 1793) meant, although he did write: “If the doors of
perception were cleansed every thing would appear to man as it is, Infinite.
For man has closed himself up, till he sees all things thro' narrow chinks of
his cavern.” (Perhaps, Blake's 18th C
interpretation of ‘through a glass darkly’ from 1 Corinthians 13:12 ?)
Evolution
To my simple mind, evolution is the
antithesis of dogma which, for westerners at least, is intimately associated
with the abrahamaic faiths and texts written many years before it was demonstrated that the earth is not flat. However well-meaning people of ‘religion’ may be,
they are either endlessly trying to adapt their dogma to an evolving world (the
via media) or simply refuting multiple factual sources in favour of one
old script, such as on matters of porcine cleanliness. (I know too little of
Eastern faiths to make any comment on those.)
After a lifetime studying and
researching evolution in a number of biological disciplines, ranging from microbiology
to human behaviour, and following it through other sciences, if I were to adopt
any faith, it would simply be that of ‘Evolution’. I believe in evolution: it appears to be both
universal and without any alphas or omegas, however much we might search for
them. ‘Evolution’ seems to tally with Blake’s Infinite. It also seems,
superficially at least, to tie in with Alfred Whitehead’s ‘Process Philosophy’.
Very crudely, process philosophy focuses on becoming rather than being.
It highlights and promotes the significance of change.
Resetting Foundations using
Process Philosophy
Taking neurodiversity as a
philosophical feature, rather than a pathology, it and its various social
expressions (neurodivergences) do appear to fit within evolution – for all
outcomes to the individual (good and bad).
Assuming everything is evolving,
from the starry nights of the physical universe downwards and inwards,
adaptation is evolution’s expression of diversity - its interplay with environment, both changing. That then heralds a
confrontation with dogmatic social groups and the laws used by such to attempt
to limit the expression of diversity, to provide bonding within such
groups and protection from perceived threats. (Perhaps the use of the term idée
fixe, usually associated with obsession, fetishism etc. is just as
applicable to the rigid dogmas … such as not eating pork because a book says so,
or simply claiming the earth is flat.)
Some Social
Interactions
Neurodiverse Experience,
Condition and Pathology
There can be no denying that in a
society, there are certain behaviours that take an ‘experience’ beyond that of
being part of a person’s character, through to being a condition that needs
managing for the good of all. The compartmentalisation of such as a pathology
enables wider social control of such behaviour. Determining which neurodiverse
behaviour requires control is based on the particular threads that bind any
society.
Within a society, certain
divergences are conceived as ill-fitting to the extent that those in power
decide, for whatever reason, that the divergence is, in its broadest sense,
antisocial. It adversely affects the functioning of society, so historically, people
experiencing or living with such a divergence have historically been contained – prisons,
asylums, hospitals, isolation units and so on.
One positive function of pathologising
a neurodivergence is the development of management protocols and treatments
that lessen any perceived negative impact that an individual’s behaviour may
have on society. This, in turn, can enable a relaxation within society at large
to behaviours that might previously have been considered as posing too great a
risk to stability. A result of this may be societal transformation, whereby a
behaviour becomes acceptable, even celebrated. This is an example of cultural
evolution. (It is not a neurodiverse case, but the change in attitude over a
couple of generations towards people living with Downs syndrome has been
remarkable – they just needed to be heard.)
There is, of course, the other side to this, in that neurodivergences can take on a fashionable label and, if history is anything to go by, that will stimulate a critical reception amongst those who lend themselves to bigotry. Add to that a seeming increase of the use of neurodivergence as mitigation in law cases. My understanding of the above is they come about, in the main, as a result of a recent 'diagnosis', either after someone has reached the pinnacle of success, or have been found guilty of a (usually) minor criminal offence. This seems to follow the same developmental pattern that fostered increasing criticism of the trans experience.
But here I feel I am beginning to get
out of my depth. While I can postulate how society may react to ‘managed
neurodivergence’, I cannot speak to how an individual with a neurodiverse
condition reacts to social and other influencing factors. I am reminded of what
R.D Laing (a 1960’s psychoanalyst) said concerning schizophrenia, that it may be “a
sane reaction to an insane world”. (The anti-psychiatry movement of the 1960’s
et seq., to which Laing belonged, remains highly controversial but his
statement highlights the inequality between individual and society.)
Cultural Evolution and Its Risks
to Neurodiversity (and Trans)
The empirical evidence as based on
current professional knowledge is of an increasing recognition of ASD, including amongst mature and socially successful people.
There does seem to be a parallel in the increasing numbers of people
identifying as trans (or some variant of). Are these responses to a changing
environment, or a more nuanced identification of variation amongst people? Or a mixture of both?
Whichever, a danger here is with
characters like RFK Jr, the US secretary of Health and Human Services, who remains
fixated on linking his extensively debunked idea that vaccination programmes
have caused the rise in autism. He has the power to disrupt impartial research
into the impact of vaccines and has used it. Also, the anti-gay Southern
Baptists in the US, with their own rigid adherence to the bible as they understand
it, are increasing in influence and power, with the result that a challenge to
gay marriage has been submitted to the US Supreme Court. Their Convention also
voted to ban other marginal groups in the LGBT+ constellation and return
women’s social position to that of subordination to men (and no, this is not
Afghanistan, but ... it’s all down to votes within the most powerful country in
the world, with inevitable knock-on effects.)
There is, currently, a highly
complex issue in the UK with gender and sex, whereby a basic (and increasingly
recognised as simplistic) concept in biology – sex – is being used to undermine
the protection for and social freedoms recently gained by trans people. As with
research on autism, research into biological sex is becoming ever more complex
as science tries to answer more and more intricate questions regarding the development of the foetus, its interaction with its mother, and influences from the exterior crossing
the placental boundary. Instead, the law relies on an acknowledged imperfect
definition of man and woman. As someone with a biological background I find myself agreeing with the basic definition but uncomfortable that by becoming fixed in law the presence and value of diversity (genetic/developmental/social) is forgotten. There are vested interests all over the place
demanding … what? I have no answer.
Neurodivergence and Masking - A More Personal Story
Someone with a neurodivergence may,
or may not, be aware that their relationship with wider society is unusual. My
lifelong partner had OCD dominated by hoarding. I was aware of a predilection she
had for handwashing which she seemed to manage well – it was simply an expression of a
neurodivergence, no more. At some point in her life, however, she began
hoarding. The detail really belongs to a separate blog entry, if at all –
suffice to say that it was of far greater consequence than the handwashing and it developed into an untreated pathological state. Living conditions (having her
own apartment) were such that no one in wider society was aware of the
consequences of her hoarding – she was very good at masking it, even to me, until
she needed other day-to-day medical care and with covid, we formed a ‘bubble’
at my house, where her hoarding continued. She had been aware of her hoarding behaviour for over twenty years, but I only found this out while clearing her apartment and coming across correspondence with health and research organisations reaching back that far.
The mask, for her, was not simply a
coping adaptation, but part of the hoarding. An example: she had an overnight
bag which she told me had been packed so that it contained everything in it that she might need for an overnight
stay in hospital. On the first occasion it was needed (only some weeks later, when she had been hospitalised with a TIA), I picked the bag up to take it to the hospital and, realising
how light it was, opened it only to reveal a large, hoarded collection of empty prescription drug boxes - nothing else! By this time, I was in tune with secreting behaviour, so just made a
light joke of it when I visited her. What really struck me was that she hardly reacted, her expression didn't change and she barely
acknowledged what I had said (nothing to do with the TIA, I must add). There was no communication, no joke for her, and it was then clear to
me that the mask was not acting as a
‘gatekeeper’ managing her communications with the exterior world, but was a guard, protecting a deeply private,
possibly subconscious world – her mask was an integral part of her
neurodivergence. I never tested, even in fun, her mask from then on.
Trans
So where does ‘trans’ fit into all
this waffling? Does it fit at all? (I regard myself as transgender, a particular subset of ‘trans’
but will use trans for convenience).
The empirical evidence as based on
current professional knowledge is of an increasing recognition of autistic
spectrum disorders, including amongst mature and successful people. There does
seem to be a parallel in the increasing numbers of people, both young and old,
identifying as trans (or some variant of).
Is this a response to a changing
environment, or a more nuanced identification of variations amongst people? Or is
it a mixture of both? As far as these experiences go, we are still in the dark ages. One significant difference is that being trans is primarily self-identifying. But, perhaps this is due to the ease of such self-identification. Of course, there is the further problem with trans - because of its nature, for some it does find expression through sexual activity, if not sexual indentity: a double whammy as far as the Old Testament is concerned. But this piece is about neurodiversity, so, for now, I'll just leave any correlation with trans as an open question.
... And Postscripts
When I decided to publish this piece, just a few day ago (24/08), it was partly to avoid getting sidetracked into 'trans' and partly to avoid writing about experiences I am not familiar with. Since then, however, I've come across things which, I think, add to the above:
1.'Phobias: I have acrophobia (irrational fear of heights). Using coping mechanisms I am quite able to walk along precipices etc, but if the coping mechanism is removed, I freeze. This seems due to confusion between the optical input to my brain and how the relevant part of my brain responds - I find myself, literally, 'wanting' to edge towards the danger, even while feeling terror. This is NOTHING to do with neurodiversity, but I just wonder whether this phobic response bears any resemblance to the stresses that can arise in ASD. If so, it could aid understanding. Maybe ...
2. How does the anti-psychiatry of RD Laing re-appear after all these years? I was reading a report in The Guardian (27/08) about the winner of the Edinburgh comedy award winner, Sam Nicoresti, who happens to be trans. I'll simply quote from the article:
"... being transgender may be, for Nicoresti at least, as much a journey as a
destination – and not one without its bumps in the road. Happy to
report, after the quasi-spiritual experience described in the show, when
she passed nine times through the Mên-an-Tol stones in Cornwall,
famed for their healing properties, “I’ve felt fine since. Absolutely
fine! I mean, life is hard at the moment, but it’s hard for everyone. I
take the RD Laing approach of, it’s perfectly rational for us to feel
insane.” But generally, she says, “I’m feeling good right now.”" Hmm...
3. More on RFK Jr - a news feature in Nature (26/08). It's an article asking what is really driving the rise in autism? RFK Jr is blaming an environmental toxin, but years of research have indicated that autism diagnoses have changed as diagnostic methodology has evolved. The predisposing causes appear to be genetic (possibly de novo mutations in the parents germ cells) with environmental factors being secondary. (This does appear, on first reading, to tie autism into a form of evolutionary process, rather a poisoned population).
I have a feeling that these postscripts may be continuing ...
