Dopamine: it’s the process, not the product

I have bought a lot of weird stuff from eBay.

A job lot of uncleaned Roman coins, WW2 memorabilia and a roe deer skull complete with antlers, to name a few of my recent purchases.

These were all recent fascinations of my eldest child, who takes a hands-on approach to learning, hence the necessity for tangible resources that he can observe, manipulate and take into school for his class to gag over the smell and then shove in a box in the garage because he’s decided it’s too creepy (the deer skull).

I’ve noticed a pattern in his approach to these objects: for him, the real thrill is firstly in discovering a new topic that excites him, then in researching, comparing, evaluating and selecting the exact item he needs, and the all-consuming anticipation of waiting for it to arrive in the post. He says himself that he can’t think about anything else and I understand where he’s coming from as I do exactly the same, with dog training supplies, or vitamin supplements, or whatever is today’s big ticket item in my mind.

Unfortunately, by the time the post arrives, interest in that topic has often subsided, sometimes to the point where the parcel remains unopened, or the contents are shoved into a drawer to look at ‘later’ (and in our brains, really there is no later, only now/not now), whilst we return to eBay to look for fossilized shark teeth or heritage vegetable seeds.

For us, it is definitely the ‘thrill of the chase’ that provides the biggest rush of dopamine, rather than getting our hands on the prize. Apparently, dopamine has been misunderstood for a long time (like pretty much every late-diagnosed adult) – according to Scott Barry Kaufman and Colin DeYoung, its role is actually:

“to make us want things, not necessarily like things. We get the biggest rush of dopamine coursing through our brains at the possibility of reward” 

This means we get the buzz from the steps that precede the end result, and not necessarily from the end result itself – we might not even like it that much when it arrives (that deer skull again – it stank).

This is evident in my approach to writing these posts. Hours spent excitedly exploring the rabbit holes of research, where every topic links to another, every idea has roots in a different theory, every article has a plethora of references to investigate. I can almost feel my brain fizzing with the energy I’m generating. It’s the possibility of what I might discover. The resulting post generally bears little resemblance to my starting point but I will have gathered a multitude of starting points for next time and learned a lot of cool stuff along the way.

I must have, as Scott Barry Kaufman calls it, a very active ‘nerdy dopamine pathway‘; the rewards of research and learning outweigh the value of other types of rewards.

As with any kind of art, writing can be about the process first and foremost, with fingers crossed that the end product is decent enough to make you want to read it. I am making a deliberate effort to avoid censoring too much, or to edit out my authentic voice or change every third word for something that might sound more academic in case you think I’m underqualified. Which has given me an idea for my next post.

If only I could remember to write these down …

Avoidance: it’s the unknown unkowns

It’s been a while. Not because I don’t have ideas – ADHD means I am practically exploding with ideas in my every waking minute – but because of the phenomenon called demand avoidance.

Whilst everyone experiences this on occasion, by resisting or putting off doing what needs to be done, procrastinating or avoiding activities that might be less than pleasant, demand avoidance of the neurodiverse variety seems to run a deeper and more pervasive course through every aspect of daily life.

Perhaps the term ‘demand’ is a misnomer, as this implies that the thing you are avoiding is mandatory, that you have no choice but to do it, and yet the avoidance frequently occurs around stuff that is actually enjoyable or beneficial, and optional. Ironically, most of the time, the ‘demands’ that I avoid do not even come overtly from other people; nobody has told me I must write this blog or that I must publish a certain number of posts per week, or that I must arrange an appointment to have my hair coloured or any other example from my mental to-do list.

The word ‘expectation’ seems more accurate, applying to both the things I have decided for myself that I should do and the things that society, authority, family, the world at large (might) expect me to do. The brackets are there because, so often, other people’s expectations are unspoken and simply assumed. Therein lies a very big problem.

If I have no concrete evidence of what is expected of me, then how do I know who I should be or what I should be doing?

What happens when I don’t know precisely, down to the nth degree, what is expected of me? I become anxious. I might make educated guesses about what I need to do, or how I need to behave, or maybe I’ll do my own research or try asking someone (unlikely, unless I know them very well), but regardless, my brain has already decided that the information I receive is not going to inform me accurately enough to quell that anxiety, and could well end up increasing my anxiety, as more variables, tangents and potential errors are introduced. My mind becomes full with the swirling thoughts, possible scenarios and plan Bs, Cs and Ds, all increasing my already-anxious state and taking me further away from the end goal. This intolerance of uncertainty is believed by some to be at the root of demand avoidance in neurodiversity.

As an adult, and a parent, I have had to become reasonably proficient at managing the practical aspects of entering a new situation – say, taking the wrong turn en route to an unfamiliar place, my children’s first parent-teaching meetings or registering with a new dentist – but the expectations that I am still unable to cope with are the silent, unexpressed opinions: other people’s judgement of who I am as a person.

Me and other people’s expectations go a long way back: we have a lot of history. Being unknowingly neurodivergent has meant several decades of being judged against unspoken social rules and norms that I was never even aware of. I would never be able to pass the subtle tests that would face me every day, in every possible situation.

The anxiety resulting from these daily micro-failures probably created the need for my ‘expectation avoidance’ as a protective tool and the battle between avoidance and determination to get on with living life rages on with every encounter, presided over by my brain’s own Secretary of Defense:

As we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns—the ones we don’t know we don’t know. 

Rumsfeld, quoted in Graham, 2014

Routine: a love-hate relationship

Want a clean home? Devise a housekeeping routine and stick to it. Struggle to fall asleep or wake up tired and unrefreshed? Sort out your bedtime routine. Finally decided to complete Couch to 5K? No, me neither, but I bet if you did then the key to progressing from beginner to runner would be that R word again.

Ah, routine. Can’t live with it, struggle to function without it.

Why is it such a big deal? Start reading about the defining characteristics of autism and you’ll soon come across statements such as ‘repetitive or restrictive behaviours and interests’ or ‘struggles to cope with change’. In real terms, this might refer to the child who will only eat sandwiches cut into squares or watch one particular TV programme over and over, or the adult who will panic if they have to take a different route to work or the bus is late.

In a tumultuous, confusing world full of contradictions and surprises, where cause and effect are often illogical from an autistic perspective, the comfort found in the security of a routine makes perfect sense, of course. It may be impossible to control the environment but here is a corner that is dependable, that is safe, because it stays the same. However …

Add ADHD into the mix and you’ve likely got a brain that seesaws continuously between the need for the stability and security of routine and the excitement and unpredictability of the novel and the unknown. Meal planning feels like two angry rams locking horns over a fence. Knowing that routine and schedules could make life easier and yet resisting them at every turn is particularly difficult to deal with.

Why does this happen? Many reasons, probably. Executive function difficulties, like planning and prioritising, make it hard to identify what to work on, and the continual flip-flopping between hyperfocus and no-focus-at-all means that even if I start to create a routine I am likely to either become overwhelmed by the scope of the task and give up, or find that I spend all of my time obsessing over the details and forget the big picture. Or I’m equally likely to become distracted by something else altogether.*

Biologically, an ADHD brain is always seeking stimulation – new experiences, excitement, change – to compensate for inherent deficiencies in specific neurotransmitters, and a predictable, inflexible routine is not going to provide the stimulation my brain needs to avoid feeling bad.

The psychological demands of routines – even, or perhaps especially, those that are self-imposed – should not be underestimated. Knowing that I ‘have’ to do a daily HIIT workout** activates all sorts of demand avoidance schemes and subplots, and before you know it I’ve come up with multiple reasons why I can’t/mustn’t do that exercise today, even thought I am aware of the benefits.

There is also the heavy weight of personal history to carry when a new routine is set up optimistically, only to be abandoned after a couple of days. How many times have friends or family members commented sarcastically when you’ve declared that you’re going to start doing x, y or z, with ‘Oh is that your latest brilliant idea?’ ‘Wonder if it will last longer than the previous ones?’ ‘I don’t know why you’re bothering, you’ll only give up.’

Finally, time seems to operate on a different plane with ADHD. There is not really any objective, imaginable future to plan for but instead time seems to be only the binary now or not now. If I feel the urge to do something now, in this moment, then I can do it, but I cannot say with any certainty whether I will have any desire to do the thing in any future moment, and if the will is lacking then it would be an uphill struggle to convince my brain that there is any merit in completing the activity, especially if the reward is not immediate or sufficient.

Even though I am well aware that having a meal plan would free up a significant amount of mental processing time that is otherwise spent deliberating over what to shop for and what to cook, I have accepted that my brain is not wired to thrive on fish pie every Tuesday.

*I left this part-written for three days whilst learning to crochet because I’d come across a pattern for a beaded necklace whilst researching something else (I forget what).

**Clearly fictional.

Driven to do things differently

Several decades ago, I took driving lessons. They did not go well.

I remember crying silent tears at the approach to a roundabout one foggy November evening, when having to contend with the glare of lights and rain as well as mirrors, signals and gears was more than I could cope with. The experience was overwhelming and the young male instructor did not try to hide his irritation when I persisted in repeating the same mistakes and was unable to coordinate my feet, hands and and eyes to travel any distance.

Ten years later, I tried again. I found a older, female instructor this time, who gave lessons in an automatic. That first lesson was transformative. After driving around the business park by my office for a few minutes, she said:

“I can see you’re fine with steering so do you mind if I smoke?”

And off we went, me holding up enormous queues of traffic on the rural back roads, her with a fag on the go (it was still legal then), chatting about nothing in particular, only throwing in the occasional observation if I was too close to the verge or to check my road position when turning right. We would detour into supermarket car parks to practise reverse parking and she’d tell me to grab her hand whilst she hung out of the passenger door to see how far over the line I’d ended up this time.

By simplying the process of driving by removing the clutch and the gear stick, and getting rid of the previous dickhead instructor, my anxiety was lowered and I had enough capacity to concentrate on everything else. I was not worrying about being annoying or judged by my lack of ability, so I actually made fast progress, and as the number of different elements to coordinate and concentrate on had been decreased I was still within the limits of what I could manage.

The hazard perception test was interesting: to me, everything, everywhere is a potential or occurring hazard. Pedestrian on the opposite pavement 50 metres away? They might dash across the street at the last moment having spotted someone they know. A gate on a country lane? Could be a tractor reversing out of there, or maybe a herd of cows about to cross the road.

But I passed the theory test, and I passed the practical test too, on my first attempt. Driving hadn’t suddenly become easy – I was still anxious – but having made those adaptations to the process itself, it became less overwhelmingly complex and stressful, and I now had the capacity to deal with the challenges involved. A crucial difference was also being taught by someone who was on my side, encouraging me to persevere when it felt too hard and building my confidence by being a very astute judge of when to step in and when to let me work things out for myself. I was no longer worrying about whether she was irritated by my mistakes or by social rules, and could concentrate on the road ahead (and the mirrors, and the blind spot, and correct signalling, and the road signs, and braking distances …).

This is an example of a finding from Tan’s study mentioned previously that arises following the recognition of autism in adulthood; that is, the opportunity to reflect on what works well for you and what does not; where your strengths and challenges lie; and to switch things up accordingly. She describes this as:

“Adjusting personal expectations and developing new adaptation strategies”

This is key in releasing those feelings of failure and inadequacy in not measuring up to expectations of what you should be able to do (that’s you, dickhead driving instructor). If you can evaluate your world through this lens, then you are empowered to make some changes that should improve your overall quality of life and, in turn, your self-esteem. This could mean making changes to your environment (too bright? loud? busy?) or using devices to modify sensory input such as noise-cancelling headphones, requesting accommodations at work (a desk away from a thoroughfare, two monitors, transcription software, the option to work from home) or finding an accountability partner, a coach or an advocate to support you.

Tan eloquently sums up the insight which realising you are neurodivergent can throw at you like a lightning bolt (I imagine this in the voice of Morgan Freeman):

“… becoming typical was not a feasible endeavor”

I might get this as a tattoo.

Someone turned the lights on

After wading through a lot of negative stuff constructed from the ‘deficit’ model of neurodiversity, I came across a relatively recent strand of research which takes a very different approach. This branch of research examines the view that diagnosis or identification as autistic as an adult can have a profoundly positive impact on identity and self-concept.

There is one study* in particular that I keep returning to, as the themes and the insights are profound and relatable. The author, Catherine Tan, has a term for the shift in perspective that occurs when an adolescent or adult is diagnosed as autistic:

“biographical illumination”

which means:

“a transformed conceptualization of self and identity that is facilitated by but extends beyond medical meaning and context, enriching personal biography and social relationships.”

Basically, finding out later on in life that you are autistic (and this can also apply to ADHD or any other neurodiversity) lets you see yourself, your history and your relationships from a new perspective and can, as a result of doing so, actually improve pretty much every aspect of your life.

Imagine a stadium, left in darkness for years, suddenly lit up by the glare of the floodlights. This is how it feels. All this time, your view has been obscured by a shadowy darkness where shapes and contours were impossible to make out, and you have struggled or judged yourself harshly for your inability to do what seems to come easily to everyone else whilst you are feeling around in the dark.

Finding out that you are fundamentally different shines a bright new spotlight on your history, your relationships and your entire identity and sense of self: it offers a shiny, knowledgeable new perspective, one in which you can view your past self with compassion and re-evaluate your identity.

Remove the neurotypical filters to see yourself in a new light.

Coming next: what Tan’s study has to say about cutting yourself some slack and finding your people.

*The full-text of this article is freely available and I would recommend reading it.

A side of ADHD

Something didn’t add up. I was definitely autistic, yet that on its own didn’t seem to account for everything. I need routine, deadlines and obligations to perform well, yet I detest having to follow that routine or keep to prearranged commitments. I will fixate on one particular topic but that focus will quickly move on to the next thing and I find it very difficult to prioritise what should be done first and where I should be putting my attention. I love organisation but have trouble keeping things organised at home and will be forever implementing new systems for remembering to clean the blinds, post birthday cards in time or take chicken out of the freezer.

Again, it was only once my child had received a diagnosis of ADHD that the penny dropped and I found an explanation for the characteristics that didn’t seem to be covered by what I understood as facets of autism. Why had ADHD also been missed for so long?

Research into neurodiversity in females in general is lacking, which means the guidance used by professionals to recognise ADHD et al. is outdated and unhelpful. Trying to compare the behaviours of a 40-year-old woman to those of a fidgety 8-year-old boy is unlikely to yield much. Even looking back at my own childhood, it is very clear that ADHD in girls can present very differently – I would be the last child you’d describe as hyperactive in a physical way, yet my mind was constantly whirring and I would pick up multiple, changing interests. You would not have seen a child struggling to sit still, to engage with the lesson or shouting out impulsively, because (a) I was intelligent and found the work easy without having to apply effort and (b) every single moment at school was consumed by MASSIVE ANXIETY that I might do or say something wrong, or break a rule, or be laughed at.

If the teachers and the doctors didn’t see anything, then it is not surprising that families didn’t either. I have vague memories of E numbers and additives being blamed for hyperactivity during my early childhood in the 1980s, but an introverted girl who reads a novel a night, plays the piano and likes vegetables is not going to be seen as a ‘problem’.

Why is recognising ADHD in adult women such an issue?

We might have partners, children, friends, mortgages, jobs and qualifications; we get our hair done, we dress ‘appropriately’, we go to social functions; we arrange parties for our children; we drive them to ballet every week; we make sure their PE kits are washed and and ready to wear; we post birthday cards on time* and turn up for our dental appointments.** The list goes on , but the point is that, superficially, doing all this means WE FIT IN.

Consider that all of the above, and the thousands more tasks we do and interactions we have, rely on having the skills that are impacted by ADHD, then how much effort and energy must we be using in the struggle against our own brains all day, every day, just to meet social expectations, and how crushing it feels to be told you have done something wrong, or at least not quite right.

That MASSIVE ANXIETY has followed me out of the gates of primary school, and the anticipation of being shamed and embarrassed is as strong now as it was then.

*Rarely happens.
**Had to reschedule the last one three times, actually.

Small talk: a big deal

“Bit chilly today, isn’t it.”

OK, remember: answer in agreement as it’s not an actual question; reply straightaway with a comment that includes the words ‘glad’ and ‘coat’, then follow up with a related statement/invitation such as ‘I know! The forecast said it was supposed to be warm all week!’ with a tone conveying mild irritation mixed with surprise but said whilst smiling to indicate this is not actually that much of an inconvenience.

Do not forget appropriate eye contact; be conscious of what your eyebrows are doing; ensure a relaxed posture and perform a surreptitious clothing check to ensure all buttons are in the correct holes, no labels are visible and nothing has been put on back to front or inside out. Bonus points if face completely clean.

At all times, be sure to scrutinise conversational partner for signs (verbal or otherwise) of misunderstanding, confusion, sarcasm, humour, annoyance, boredom or any other mood – actual or potential – whilst maintaining acceptable yet non-specified physical distance and simultaneously anticipating their responses and planning your replies.

I could go on but I’m already exhausted and this encounter was only hypothetical, and I haven’t even touched on the post-encounter analysis, self-reproach and recriminations for not having performed well enough again.

Whilst small talk does serve a number of real, defined purposes, including bonding and defining the social status and relationship between two people, that is exactly how I would view it: as a performance.

Look into my eyes: part I

Eye contact seems to be a REALLY BIG DEAL for a lot of people, particularly those in positions of authority. Not staring directly at their pupils? Clearly you aren’t paying attention. Avoiding eye contact when they’re talking to you? Makes you look shifty – what are you trying to hide, eh?

The diagnostic criteria, the school reports, the parental questionnaires all include avoidance of, or ‘disordered’, eye contact as an indication of autism. Why is it such a big deal? Lacking data necessary to answer this question satisfactorily, I had to do some research.

Many, many hours later and I’m back with some initial observations. Firstly, searching Google for ‘eye contact and communication’ gave me links to business coaching sites talking about the power of eye contact in persuasion and customer relationships, for communicating confidence in public speaking, for demonstrating attentiveness during a conversation and even in increasing perceived attractiveness …

Undoubtedly, the structure and function of human eyes has evolved over time, and there seems to be a general consensus that human eyes are designed to communicate and to aid cooperation as a species. Whilst most other primates have eyes that are well camouflaged, humans have evolved eyes that stand out visually from the rest of the face and that have bright white and clearly visible sclera, which the ‘cooperative eye hypothesis‘ suggests makes it easier to see and follow another’s gaze when working together, to communicate and to draw attention to something in the environment that you haven’t noticed (stand still and look up to the sky and I guarantee other people will start looking up, too).

However, the underlying message I received from these marketing sites was that good eye contact is a skill and one that can be mastered. This means that it can be taught and learned, and that one can become really good at it. What would be the benefit of a certificate of excellence in eye contact?

This goes beyond the evolutionary uses of communication and cooperation for survival and is related more to social structures, power dynamics, hierarchy and relationships. A gaze can be used to persuade, engage and manipulate or to oppress and hold authority.

Interestingly, for most other primates, direct eye contact is actually seen as a threat and one that may precede a violent challenge, particularly in relation to social status in the group, with lower-status members averting their gaze in response. A very recent study in Nature suggests that the less hierarchical the social structure, the more that eye contact is tolerated, rather than being seen as, in effect, asking for a fight.

The same study also mentions variations in the meaning of eye contact across cultures: in many places it would be considered extremely aggressive, disrespectful or threatening to look directly into another person’s eyes. There may be an association with the social structures inherent in these cultures.

So, what does that mean for autistic people? Going back to the diagnostic criteria and the behavioural observations, it’s often assumed that autistic people can’t or won’t make eye contact, or don’t do it ‘properly’, because of some inherently deficient aspect of their makeup.

Maybe though, the social benefits of eye contact just aren’t that important to an autistic brain?

Perhaps the instinctive reaction to eye gaze as a threat is still active enough to make us proceed with caution in almost every social encounter?

Maybe we prioritise other ways of communicating that are more useful to us?

In fact, the British Psychological Society have (possibly inadvertently) addressed several aspects of eye contact in an article which reinforces this alternative way of thinking. In summary:

(1) They state that “bodily awareness becomes more acute when … subjected to another’s gaze” and we instantly feel more self-conscious. That’s even more self-conscious than we already bloody well do!

(2) Eye contact is “such an intense experience” that it uses extra brain processing power, which affirms what I have always felt: if I’m looking at you then I can’t hear what you’re saying. A friend joked recently that it is as though we have a valve between our eyes and ears, so if the eyes are open the ears are closed and vice versa. This feels absolutely accurate and explains why I can’t watch TV without subtitles. An older study is cited in the BPS article recommending that children are taught to look away whilst thinking about a problem rather than continuing to gaze at the speaker, because it made thinking easier and more effective! How is that for irony.

(3) Apparently, humans automatically detect changes in pupil dilation when gazing at another person’s eyes and judge the other more positively if their pupils are nice and wide. Given that pupils can change size in response to fear, stress (i.e. almost any social interaction ever) or, obviously, brightness – a common sensitivity among the autistic humans I know – and we have no control over our autonomic systems, it seems harsh to judge me on something I don’t even know is occurring and I can do nothing about.

This is only the very tip of the iceberg as far as eye contact and autism are concerned …

Let’s play Bingo

The appointment had started well enough. There I was, sat opposite the GP, explaining how my eldest had recently received an autism diagnosis and the assessment process had led me to realise that I, too, was very likely autistic and had therefore been assessed by the same privately funded centre (and this was all extraneous detail because I’m fairly sure I was there for a completely unrelated minor medical complaint) when it started: the head tilt, the subtle raising of eyebrows. The unbroken eye contact. I could tell what was coming.

“Really?”

Let’s play Bingo! (Or Lotto! if you were in my French lessons.)

“Who ‘diagnosed’ you then?”

She made no attempt to conceal the disbelief in her voice or her expression, which I initially thought might be a weird spot-check to test whether I could read body language. I tell her it was the private assessment clinic that saw my son and her eyebrows raised further.

“I haven’t heard of them, was it a counsellor or someone like that who told you? Did you do the proper … tests and things?

It was the ‘and things’ that made me realise what was going on. The usual GP-patient dynamic had been disrupted and I was now the expert in this interaction: I knew a lot more about autism than she did, by virtue of my own lived experience and a significant amount of research, and she was probably trying to redress the imbalance by asserting her authority as an expert in her domain.

Unfortunately for my GP, with knowledge comes confidence, so I explained that, actually, the clinic who diagnosed me hold the contract for NHS assessments in our local area and use the ‘gold standard’ diagnostic and assessment tools, and that my scores were all documented in a 70-page report that I could provide if necessary.

She said it wasn’t necessary.

”You must be very high-functioning.”

I had started, so I thought I may as well carry on, and earnestly explained that labelling autistic people on the basis of their ability to live in a neurotypical way is not helpful and denies the variability in ability to cope whilst dismissing the challenges involved in being compelled to do so.

At this point, she attempted what I think was meant as a conciliatory comment but, unfortunately for her, this too backfired, as she said brightly:

”Well we’re all on the spectrum somewhere, aren’t we.”

In retrospect, I don’t think this was meant as a question, but I cannot leave inaccuracies uncorrected and was on a roll, so I told her that the ‘spectrum’ was not linear; this is another unhelpful misconception and we are not ‘all on it’.

I left her with a cheerful offer of coming back to the surgery to provide further information and education for all of their employees, but haven’t heard back yet …

Are you sure?

… One of the stranger responses I’ve received when mentioning that I am autistic.

At that point I had actually received an official diagnosis (more on that and dismissive GPs another time) so yes, I was sure, but still. What are they implying by asking that question?

“You don’t look autistic.”

Probably this, or something similar. They are implying that because I don’t fit their stereotype of how an autistic person should look or behave, I can’t possibly be autistic.

How does this stereotype present autism? Non-verbal? Maths prodigy? Male?

I am none of those, just like thousands of other autistic people, yet this outdated view prevails, and all the while it continues to dominate, we are left unheard and unsupported.

As one of the lucky few to have received a diagnosis ‘validating’ my neurodiversity, I’m in a position to challenge this view and to advocate for change, but in the meantime, how many autistic people have been missed growing up, had to struggle and suffer knowing they feel different – and are treated differently – but without knowing why?