I continue to be troubled by an incident at my workplace yesterday. Not for how it left me feeling, but because from what I knew of the “offenders” historically, they were very fragile people “psychologically” and, in spite of my own distress in the situation, I actually felt compassion for them. Sadly, in their effort to enforce their own boundary in a particular situation, they in fact set up a confrontation with staff and others which of course they then couldn’t cope with and proceeded to behave very badly as a result. I’m sure they went home shaken and angry, believing their own “stand” to be a justifiable “right”, but their unwillingness to comply with a “reasonable” request in particular circumstances had set up the confrontation. They tried to present paperwork claiming “exemption” from what we requested, but there were over-riding factors, policies and issues that required us to require compliance while they were present in our facility which was shared with other physically vulnerable people.

As situations so often do, it triggered my thoughts about ASD in relationships, the subject I frequently write about. A common topic of sharing in our support group meetings and in counselling sessions is the inflexibility of the person on the Spectrum in a range of circumstances, but particularly in the home. This relates to what I’ve written about in my new book “Straight talk for partners” about fixed views, perspectives, opinions, procedures for tasks, etc. I believe I can see that the person with ASD adopts a stance on many things, believing this will actually remove potential for discussion, challenge, confrontation or conflict, when in fact in this crazy challenging world, a fixed stance on anything actually sets up challenge, confrontation and conflict because none of us can navigate our daily exchanges with other people and circumstances without discussion and negotiation. Hopefully, we mostly do this respectfully.

Of course, formal policies and procedures are in place in many situations to reduce hazards and risks in order to keep people safe, meaning there are times when we all have to comply with these “rules” as it were, but so many of life’s situations require comprehension of the bigger picture, the reasonableness to take into account the varying needs of everyone present, the ability to compromise or relinquish one's "perceived" rights in the situation, and awareness of the outcomes that are being aimed at. This is defined as “cooperation” and “collaboration” for the greater good.

Whilst we are aware of and admire many people with ASD who are able to see and take brave stands for “big world” issues that affect the globe, or to show compassion in relation to disadvantaged groups of people or animal welfare, in some situations they can seem strangely unaware that those around them, particularly in their immediate space or household are fragile too, are worthy of care, and need considerate and respectful exchanges, not challenge and confrontation for just trying to negotiate a fair and compassionate outcome for all involved.

This morning a friend shared an article about “Breadcrumbing” (see www.psychologytoday.com/us/blog/communication-success/202202/5-signs-breadcrumbing-in-relationship for original article by Preston Ni)  It is an excellent piece that focuses on how a narcissist, manipulator or other self-absorbed type engages beautifully with their love interest/partner/spouse/friend when they need or want something from them, and then withdraws back to their self-absorbed uncaring self once they’ve had their need met.

It explained how the partner is affected – knowing constantly that there is potential for a wonderful exchange between them, knowing it can happen at any time and knowing that she/he doesn’t want to miss it when it happens next time, and they wait … The next time only ever happens on the terms of the self-absorbed one, never on the terms of the partner, but they wait because it’s so worth it. Except, in time their perception of self and their worth is deteriorating to the point of virtual disablement. In the eyes of the one they love they only have worth when the other deems them to have worth – for something they want. When one is within this type of relationship it is difficult to be objective, and to be strong enough to make a choice to cut ties and get out of reach of the self-absorbed one. This would require validation from someone external to the situation, and a network of support that can’t fail.

Of course, I can see that this is also what happens in relationships where one is ASD, but I believe there is a fundamental difference. Firstly I have to say that there is no difference for the partner – the effect of only having worth when the other needs or wants something will erode the non-AS partner in the same way that it would erode any partner. But, I believe the difference is that an AS person will have developed the basic skills necessary to make transactions – scripts and behaviours to achieve a purpose – to get what they want and need. Then, like the former example they will retreat back to their self-absorbed, “apparently” uncaring state.

With an AS person, however, this happens because their deficits lie in capacity for relationship and social engagement. They cannot sustain consistent relationship reciprocation as one would tend to see in the “typical” population (not that typical people are shining examples of healthy relationships in many cases, sadly).

But the AS person is just doing what they need to do in order to survive – initiating a transaction that will result in the supply of whatever they want or need – then they revert back to their default position of detached and self-absorbed.

The effect on the partner is devastating – feeling needed and loved and effective for specific needs and wants at random times, and then they’re invisible again, or in some cases an irritant. The relationship can feel beautifully reciprocal … but just for a few moments or for a specific purpose. The transaction is made, and is over … until the next need drives the next transactional exchange. Soul destroying for partners because we stay available, always caring and always ready …

Yesterday, a friend of mine shared a funny story with me that further illustrates the natural responses that other human beings compulsively elicit from us.

My friend was at the golf nets practising his shots, when a golfing acquaintance using the next net began to offer some advice. My friend knows that this guy plays well, so is aware that his advice may well be valid, but there are some aspects of this guy’s behaviour that he has observed to be quite odd, so he doesn’t necessarily want to change his style based on this guy’s advice alone.

The guy proceeded to tell my friend what he was doing wrong, and instructing him how to position himself and his golf stick instead. My friend went along with it, not wishing to offend him.

And this is the point of me sharing this story. What is it about us that compels us to feel obligated to follow the instructions or guidance of another when it is not what we want to do? I imagine it’s because we are typically polite, and to refuse to follow could be seen to be rude and even causing conflict. Yet, it was actually the other guy who was rude and imposing, correcting, criticising and giving directions rather than asking if my friend minded, or was interested.

I see this situation as illustrating another aspect of what happens in relationships where one partner is on the autism spectrum (ASD) and one is not (Neurotypical). We know from the years of personal stories that many adults on the spectrum can be very controlling in their relationship and home environment. They seem to have a set way they feel things need to be done, and they are never backward in imposing those ways on those around them, frequently correcting and directing in such a way that the partner feels compelled to comply, often out of fear of upsetting the adult on the spectrum. They seem so adamant that there’s only one correct way, and their very survival and well-being seems determined by it being done that way.

To push back, or to refuse or try to reason or argue is seen as disloyalty, as being against them, as causing or creating conflict, and the ordinary “typical” person doesn’t want to be accused of these things because it’s not our nature to be quarrelsome, so we comply.

Funny that. So, once again we note that it’s the person on the spectrum who is actually in control of the home environment. Their position seems unmovable, inflexible … we are adaptable and flexible, so we adjust and compromise … until we’re really just lined up next to them on their terms, a clone as it were, a paper cut-out, with no agency of our own.

The ASD person typically seeks to adjust the environment to meet their needs, whereas those who are “neuro-typical” typically adjust themselves to fit the environment. The perfect partner, responsive and functional, but invisible.  If you'd like to comment please email [email protected] 

These days I find myself often thinking about the characteristics of partners. Those who in good faith have entered a relationship with an adult who is eventually exposed as having significant characteristics of autism. Often the realisation comes quickly after a marriage contract is entered or cohabitation commences, sometimes it comes when the demands of life increase, sometimes the signs were there, but the significance wasn’t appreciated. The “benefit of the doubt” was given, assuming the occurrences were a “one off” … until the occurrences become the norm of everyday life, and we berate ourselves because we saw it, we knew.

But we are highly empathic individuals. Normally neurotypical, but on the high end of the empathy scale. We marvel at how many of us have found ourselves sharing life with an individual at the other end of the empathy scale. A strange selection process that ensures the survival needs of the ASD individual are met by a highly intelligent, empathic, functional partner, but that cruelly denies the survival needs of that partner for connection, for collaboration, communication, care, joy, love …

What is it about us? One of our educators asks this question of us, encouraging us to explore and understand ourselves, our tendencies that led us into these relationships in the first place, and why we stay … long after many others would have abandoned ship. Truly we are beautiful, caring, loyal human beings, but we’re sharing life with one who only throws us the occasional crumb of love. We wait around for the next, never knowing when, but believing the existence of a crumb means a whole loaf and many more could appear if we just hang in there.

It bothers me to realise that the very deficits of the disordered individual elicit empathic responses from the partner, instinctively and compulsively. We are wired to respond. We cannot help it. We cannot go against nature. We see a need, we perceive an inadequacy, we sense a fear, we experience uncovered bases … we meet the need, we function on their behalf, we take care of situations that stress them, we step up and cover more bases … until we realise we are taking responsibility for everything, filling a functional capacity for both of us, but have control of nothing.

Put this alongside the realisation that most of our ASD partners will also have PDA (pathological demand avoidance), meaning they experience demands (or requests or expectations) as a crisis, and we have a dilemma indeed. One partner avoids requests, demands or expectations and one partner compulsively responds to requests, demands, expectations and needs. Perhaps this is the greatest inequality and injustice of these neuro-different relationships. The avoidance of demands by one, and the compulsive responding and over-functioning of the other. Who resources the over-functioning partner? Who meets their needs? Certainly not a demand-avoidant partner, with whom lies control as he/she can’t be influenced to reciprocate the care and function they are benefiting from.

The role of the empathic partner is that of a functional resource, while remaining unresourced themselves from within the relationship.

That cannot go on indefinitely.

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Of recent times, my mind has been playing with the idea of Pathological Demand Avoidance (PDA). It is thought that this plays a part in the autism profile of characteristics. In simpler terms, as explained by one of our educators, an individual with Autism Spectrum Disorder (incl Asperger’s Syndrome) “experiences a demand as a crisis”, to be avoided.

Stop and think about that for a moment … in the context of families and relationships. Relationships rely on an exchange of requests or polite demands in order to stay functional – we ask for help, we respond to requests for help, we ask for favours, we do favours, we ask for tasks to be done and we do tasks for others in order to achieve something important for each other or the family, etc. This is how humans get things done. A collective, working towards collective benefit.

Without a reciprocal exchange between two people in a relationship, or between multiple family members, what do we have? Two or more individuals all living under the same roof as isolated, disconnected, unsupported, independent individuals. This is not a relationship, nor is it a family. This is aloneness. This is ships passing in the night. This is depression. This is loneliness. This is vulnerability.

So, if a partner in a relationship, or a member of a family is on the autism spectrum and has this PDA as part of their profile of characteristics, what are we looking at? One person who is disconnected from the other and who experiences the panic that accompanies a crisis whenever a request or demand is made of them. Many of us who’ve lived with an adult partner on the spectrum know very well what happens when a crisis is encountered by the ASD adult – we’re either confronted by complete shut-down and avoidance behaviours, or a melt-down and rage with torrents of sharp and hurtful word-spears designed to shut us down and send us back to our corners, where we try to figure out what just happened. It was just a request. And nothing out of the ordinary.

So how does a couple or family continue to function when this could potentially occur multiple times every day? I know for a fact, because it happened to me, that eventually partners avoid asking for help or participation. The reaction and aftermath is just not worth the emotional distress and trauma it creates for us. It does help to finally understand the traumatic effect a request or demand can have on the ASD adult, but once again the NT finds herself/himself relinquishing needs and adapting again to the vacuum of non-participation and non-support that pervades these “relationship” situations.

This may offer more sense to the ASD adult’s apparent tendency to assign and implement roles, tasks and routines to couple and family life – this would, in their minds, eliminate the need for daily negotiation, spontaneity and discussion of course – those wretched demands and requests that create a crisis. It’s been declared by them, or manoeuvred (if the passive type), and the right of reply is denied. Were we to open our mouth we risk creating another crisis, that of unpredictability, preventing time for preparation of an answer. Silent, I stand.

As I contemplate the crisis of a request or demand, I wonder if it even extends to the presence of expectations – one cannot avoid having expectations in relationship – social and cultural norms establish reasonable expectations to have in relationship, which we naturally have of our partners. But does the avoidance extend even to these? If it exists, if it is “out there”, expressed or not – a request, a demand or an expectation – then it is to be avoided. One puzzles as to why.

Perhaps the terms are not their own and the initiation is not from them? Perhaps they don’t know what actions are required, they feel exposed or at risk of making a mistake. So we wait, and hope for a move on their part – of care, of tasks attended to, arrangement of affairs or events to benefit not just themselves, a favour, a benevolent gesture, a gift, a celebration or symbol of love, protection, shared experiences, a warm and genuine smile, affection, of reciprocation of all the nurture we’ve invested into the institution we believed we were creating with them.

And then it’s a decade or two later. It’s no longer ok.

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While on my journey today I encountered fog. There were warning signs, suggestions to turn on hazard lights, but perhaps the density had lifted a little by the time I got there. It was still thick enough in patches. Enough for me to slow down so I wasn’t hurtling into the unseen too quickly.

This reminded me of life. The unknowns, the fog, the challenges and traumas that come upon us without warning. Life. Every day is an unknown. Every moment. Like we’re hurtling into the fog of the future. Every day I just face the front and set out on my way, not knowing what I’ll encounter from one moment to the next. I trust my ability to handle ordinary stuff, and my past experiences and accomplishments reassure me that I have some useful tools in my toolkit to help me handle a wide range of happenings. But the truth remains, we never know what is just around the next corner, or what will suddenly appear out of the fog to challenge our expertise and skills.

On the road I turn on my headlights. Other motorists will be able to see me from behind or in front. I trust that others will also have their headlights on, but suddenly out of the grey fuzz one appears with no lights, silver in colour, and barely visible. I’m reminded to slow down even more, that all I can do is manage my own vehicle, my own speed, my own visibility. I watch the painted lines along both edges of my lane. I stay within, while I move cautiously forward in faith, not too fast, not too slow.

I’m reminded of what I’ve learned about those who are affected by the characteristics of autism. The anxiety they feel even when there’s no fog, or perhaps everything is fog to them. The fear of not knowing what’s next, the fear of not being able to recognise or read a situation, of not knowing which tool or strategy to use, not knowing which words are correct, not knowing how to negotiate something unfamiliar, not knowing what’s expected or not knowing that something is expected at all.

I appreciate afresh how distressing that must feel, and how lucky I am to be able to remember my past experiences and how I negotiated them, what worked, what failed and what to try next time. My tool kit is well stocked because of these experiences and the knowledge I have gained along the way. I feel confident that I will be able to manage a wide range of unexpected situations, even when other people are involved. For this I am thankful.

On the road, just having membership of a Motoring Association eases much anxiety if my vehicle were to fail or be damaged in some way. I can call them.

In life, I know I can reach out to a friend, a family member, a neighbour, a doctor, a therapist, a helpline or other service provider if I am facing a situation that stretches me beyond my repertoire of skills and resources.

A comforting thought as I remember the fog.

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Always in the car is when I have my best thoughts. I chat with myself all the way to wherever I’m going, wishing I could jot down the gems that seem to love to light up my neurons while I can’t reach the pen and paper. Same happens in the shower.

Today I was hurtling along a motorway in very hilly bushy terrain, weaving back and forth between lanes as I passed trucks and other laden vehicles on the uphill, only to have them pass me on the downhill once the crest was conquered. Repeat. Patchy rain and fog too.

I caught myself not only focusing on my own motoring moves, but on the moves of the motorists around me, anticipating what they might need too, feeling anxious should I inconvenience or block them in some way, being considerate of ways I can make it easier for them. And then I remembered that I have equal rights on the road. And just like everyone else, I have a responsibility to maintain control of my own vehicle only, abide by the rules of the road, anticipate only what I need to in order to maintain safety, indicate and move only when it is safe to do so. And all of this for my own sake as much as anyone else’s. I am equal. The road is mine as much as it is theirs.

I ask myself why I feel the need to subjugate myself to the needs of those around me, not only other motorists in this case, but others around me in general? Why do I feel I need to get out of the way so others are not hindered in any way? Why are their needs more important than mine? Why do I feel compelled to meet or accommodate the needs and preferences of others above my own? Why do I catch myself apologising frequently, as though I even need to justify my presence. When did those feelings start? Why do I still have these feelings of low self-worth and inferiority after years of gaining knowledge, regular therapy, lots of self-talk and even providing support for others?

I am an empath. Acutely aware of the feelings of others, feeling them myself. True empathy includes appropriate action. It’s not enough to just feel it, the need compels a response. From an empath especially. And somehow I’ve taken to heart the message that I exist only for the care or benefit of others. So it’s a compulsion. And a self-worth issue. My purpose is for others.

Even the Bible says to do good to others if it is in the power of your hand to do so. Nothing like throwing in a bit of Scripture to reinforce good Christian behaviour. And cement the compulsion. And reinforce my purpose.

But where’s the line? I often find myself coming back to the “fine lines”. What needs do I respond to? Where does my responsibility lie? How far do I go? Is my life to be only about anticipating and facilitating the needs of those around me? Who cares for my needs?

Another little bit of Scripture brings balance to my thoughts, and reason to ease my compulsion. We are to “bear each other’s burdens” but “carry our own load”. Burdens make us weary and discouraged, they are difficult to endure – it would make sense to care and help each other in times like that. But what is the “load” each of us is to carry? Perhaps it’s that which we should take responsibility for – the load of our own life and function. I’m ok with that. And I’m ok with caring for others and helping them when their burden is too heavy.

But I must not make the responsibilities of another become a burden that I carry. That is for them to carry, as I must carry my own.

And so, on the road as with anywhere else I find myself, I am to take responsibility for my own vehicle, my own life, my “load”. But be ready to care and respond “in word and deed” when another is discouraged and weighed down by burdens that are too much for them to carry alone.

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