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|Posted on November 29, 2021 at 3:00 AM|
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.
|Posted on November 29, 2021 at 2:35 AM|
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.
If you'd like to comment please email http://[email protected]
|Posted on November 29, 2021 at 2:25 AM|
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.
If you'd like to make a comment, please email http://[email protected]
|Posted on November 29, 2021 at 2:20 AM|
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.
If you'd like to make a comment please email [email protected]
|Posted on November 29, 2021 at 2:05 AM|
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.
If you'd like to comment please email [email protected]
|Posted on December 9, 2016 at 12:05 AM|
As the year comes to an end, and we face end of year events, celebrations and holidays that don’t always go smoothly, perhaps there are a few things we can remember to help us climb our way through this time a little more “intact”.
Human contact: As Jeroen (Decates) continues to remind us, remember and cherish your “neurotypical self” and seek contact, conversations and experiences that nourish your “neurotypical” needs. Our AS partners cannot do this, as they are not socially wired or emotionally tuned in, so it is essential to remember that we cannot survive emotionally unless we take deliberate steps to create those opportunities with other neurotypical souls. It is my aim to develop and promote the “Meetup” platform (Sydney Partners of Adults with Asperger’s Syndrome Meetup Group) to enable us to organise more social get-togethers between meetings. We’ll try to organise something informal for January, but please let me know if you’d be interested in leading an informal one-off get-together for any partners who may live in your local area too. Just breakfast, coffee, a meal or drinks is all it would need to be.
Pre-plan events: Many partners report that social events, etc, are more successful if there is a plan developed with their AS partner prior to the event. Talk about where it will be, who will be there, what to wear, how you will travel, what time to leave, what time it finishes, how long you’d like to stay, what food to bring or what type of food is on the menu, etc – by talking about this stuff you can reduce some of the unexpected stuff that escalates an AS person’s anxiety and causes conflict and crossed-wires in the middle of everything. Some couples go in separate cars so that the AS person can leave as soon as their social energy has expired, leaving the NT to enjoy a bit more time with family or friends. Maybe talk about some “cues” too, pre-arranged signals if a plan needs to change, or if a discussion is needed, etc. Or if social events are a nightmare, go on your own, or be absent from the events where your AS partner insists on going but behaves badly.
Consider what you can change, not what you can’t: Most of us develop such a feeling of powerlessness around our AS partners because they are so stuck in patterns of behaviour and expression, and can’t change or adapt to the circumstances or needs around them. Of course, we continue to adapt around them which adds to the feelings of ineffectiveness, resentment, and also to a loss of a sense of self. We can’t change or manoeuvre them. And we’ve changed so much about ourselves in order to adapt or avoid meltdowns that we can barely recognise ourselves anymore. So what can we do? We can take a moment to look at our responses to them, and how we may be able to adjust or alter these even just a little. It will take courage. Often the first time is the scariest. Start small, but gradually and calmly refuse to adapt, comply, enable or be present around any unreasonable expectation or behaviour. Often an AS partner’s bad behaviour is driven by a need to quieten us, align things with their ideals or control their environment so that they can cope. We can remove ourselves, or change the way we respond. Sometimes an adult with AS is actually ok when we become a bit more predictable or clear about what we want or are going to do or not do. If it’s a lack of predictability that causes most of their anxiety, then maybe they’d welcome some clearer signals from us. I’m convinced that, out of consideration (which is an NT strength!) we often wait for the AS person to acknowledge or give their approval or permission before we proceed with an idea or plan of our own. Can we just respectfully but firmly inform them what we are going to do? No debate. Give them time to process. Don’t react to their reaction. Of course, everything is always an experiment, and so often we do what we do because we’re afraid or feel intimidated, and want to avoid a meltdown at all costs. But the meltdowns often happen anyway, no matter how hard we try to facilitate and appease. It’s scary to oppose someone’s demands, or refuse to comply, but as an adult we are equal and can choose our responses and actions. It is always important for me to add that if you actually fear for your safety, it is essential to have an escape route planned or a safe place to go to, and someone to call. Make sure a professional has documented the presence of any abuse or violence in the relationship or family context.
Remember your dignity: Part of the grief we feel over our loss of a sense of who we are is that we have begun to behave in ways we never used to, and it feels so wrong, and causes us such sadness. But we must be merciful and forgiving towards ourselves. Our behaviour has been understandable as a result of having lived for so long in circumstances we don’t understand, and which don’t respond to our “normal”, conventional or even creative attempts and efforts to create relationship, home and family with an AS partner. It is hard to have to be the “bigger person” and accept our partner’s reduced relationship and social capacity, but we feel better about ourselves when we know we have stopped punishing or shaming them for their deficits. Of course, we need to address any destructive behaviours they display, but this must be done with professional support, and with dignity, rather than by resorting to acts of emotional terrorism ourselves, which achieves nothing but escalation and emotional distress even for us. With knowledge and developing understanding, as well as regular support, we can begin to adjust our expectations and set out on the long journey back to restoration of ourselves as empathic, caring, patient and warm individuals who enjoy social interaction and human experiences, but we must begin to recreate this with other like-minded and like-hearted souls, rather than re-investing in the black hole.
As always, best wishes to all for a peaceful and meaningful Christmas, New Year and holiday season, and please take good care of you!
Carol Grigg OAM, Dip Counselling, Member ACA
I provide phone and online counselling for partners who need to talk. Please see my website www.carolgriggcounselling.com.au
Additional notes in support group newsletter:
|Posted on October 17, 2016 at 2:15 AM|
Recently I was reminded of that feeling of being like in a head-lock when negotiating the daily happenings of life with a partner with Aspergers. The term “Aspie-lock” just occurred to me as fitting for how I felt.
Things might seem to be going along ok, and the level of effort we’re putting in is second to none, but one is acutely aware of how delicate the balance is. One carelessly spoken word, or badly timed question or request, a suggestion of something new or different, a role or task not completed on time or in the right way, a preference or need not anticipated, a different opinion voiced, and everything comes crashing down like a house of cards. Angry reactions, blame, resistance, a meltdown, rage; or withdrawal and silence. Everything collapses, and we find ourselves instantly switching modes to that of dodging verbal missiles and criticism, trying to reason with them, trying to cajole or appease, trying to defend ourselves or our motives, explain what actually happened, justify our mistake or unintended inconsideration, and desperately trying to restore the status quo, and that state of pseudo-peace. Typically to no avail, or perhaps briefly, until next time …
Clearly, we know what’s required to keep the status quo, and we do a pretty good job of it, demonstrating our good theory of mind, and empathy. We care about our partners, we know how they think and what’s important to them; we care about the relationship, and the family dynamic, wanting to keep things as positive and functioning as well as possible. But it’s so nerve wracking and limiting, and completely unnatural to have to constantly work so hard to maintain the status quo, and peace. Not to mention exhausting. And disheartening and defeating when it collapses so quickly and easily. Often every day.
|Posted on September 16, 2016 at 3:21 AM|
I’m becoming increasingly concerned at how many stories I’ve been hearing where partners are actually ignored, neglected and even targeted with ridicule or malicious attitudes and words by their AS partners when they’re ill. It just leaves me speechless and traumatised to hear about the lack of care that so many partners live with. In fact, it’s inhumane. Sadly, a very negative manifestation of ASD deficits, though thankfully not in every situation.
Encouragingly, I have heard some stories where the AS partner actually behaved better and more caring when their partner was ill, as though they knew or could learn the script for caring for someone who was ill, even if they didn’t show adequate care for their partner when they weren’t ill.
Once again, we seem to be observing the benefits of good early role-modelling, or the establishment of a pattern early on in life that has equipped them to be able to fill a caring role when a partner or loved one is ill. Some have been willing to learn how to fill a caring role. How we wish this capacity could be generalised to daily care in a normal reciprocal relationship with a partner who is well.
But getting back to the concern that led me to writing this thought. Perhaps by writing about this in a “thought”, those partners who are neglected and even attacked when they are ill will feel acknowledged and validated. These “thoughts” that I write are often useful for validating the most painful and confusing aspects of our experiences. Perhaps these thoughts can also be useful for uniting partners in heart, with thoughts of care and kindness for one another.
How wonderful would it be to have a “refuge” or a place for respite where partners could care for one another, and especially at times when the neglect at home is extreme or severe to the point of being dangerous.
|Posted on September 16, 2016 at 3:19 AM|
In Nola’s presentation (February and September ASPIA partner support group meetings) she shares some really interesting things about memory in ASD.
In some of my ponderings this last month I jotted down in my notebook how we don’t develop shared memories with our AS partners.
How many times have you been referring back to an incident or experience where both you and your AS partner were present, and shared the experience at the time (or so you thought), but your recollection and his/her recollection are so completely removed from each other, you feel like your partner is lying or making up a story, or wasn’t even there. Very disconcerting. This aspect alone leads to much conflict in our relationship situations, because if you don’t have a similar memory of the same situation, then how do you build on the experience or use it as a reference point for other points of discussion or decisions? Or even just enjoy the experience of knowing you share a memory that has meaning for you as a couple or family, and that contributes to the relationship or family history in a positive way.
This phenomenon tends to add to the perception that nothing in the relationship is ever resolved, and that we’re never on the same page with our partners about anything.
Nola’s research into memory actually sheds some light on this, reassuring us that it is a valid phenomenon, and that our AS partners are not actually lying, they are presenting aspects of the situation or experience that they do remember, based on the other strong parts of their memory, which usually relate to concrete facts or actions. They tend then to present the memory according to what information they recognised, or that they value, or that they believe they experienced, from their perspective, and sometimes they then construct the rest of the story around that, but it will be a different version to the memory we have of the event, and the meaning we gave it.
Our NT brains tend to fill in all the connections and create a more complex and complete memory of an experience because we are aware at the time, interacting with others, creating meaning as we go and are then able to put it into words in a way that others can generally relate to. That doesn’t mean we don’t forget things ourselves sometimes, or have a different perception of something that took place, but the essence of what I’m writing about is a commonly occurring experience in our relationships.
I did know someone on the spectrum once who was actually able to run off a commentary of a situation, as though he’d memorised it as it happened and had a running commentary going in his head, which he then would share when it came up in discussion. What was missing though was the meaning or interpretation of the situation that most ordinary people would take from the situation, and in its place was an analysis or judgment from his own perspective, which omitted the “general” view that others would have had of the same situation. So he could be relied on to remember all the actions and facts that happened, chronologically (and according to the priority he placed on the information), but his interpretation didn’t do anyone else justice. But, he felt very confident in his memory of the event, and who can argue with facts?
|Posted on June 28, 2016 at 8:17 AM|
It occurred to me that our relationships cannot grow further or deeper than our partner’s capacity for relationship.
I feel it’s important to sit with this thought, even though it’s painful, because it informs how and what we continue to invest in the relationship.
I know it’s not “cut and dried”, and every relationship has its own capacity, but a great deal of distress comes from unrealized or unrealistic expectations (in any situation in life), and sometimes it’s kinder to ourselves (and possibly to our partners too) if we can adjust these, and seek meaningful connection and experiences through other avenues or ventures.