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.
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.
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
Additional notes in support group newsletter:
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
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.
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
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?
It occurred to me that our
relationships cannot grow further or deeper than our partner’s capacity for
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.
all my conversations with partners of adults with Asperger’s Syndrome I hear
partners yearning for some form of acknowledgement from their Aspie
partner. I know what they mean, I know
what it feels like to have that yearning.
Just one word.
word that tells us they see us, that they understand how we’re feeling, that
they know what we need, that they recognise our need for connection, that they
understand what we’re saying, that they know we love them, that they value who
we are, that they notice what we do, that they appreciate our care and all our
effort, that we are important to them, that they care about us, that they’re
sorry for words or actions that hurt us, that they love us, that we matter.
one word would make it all ok. Just one
word. It seems so simple. But that one word would convey a world of
meaning that our partners do not understand and cannot articulate. They look at us blankly, or argue the point,
or think we’re trying to compete with them.
It’s like we’re asking them to suddenly speak fluently in a foreign
language. A language they don’t
comprehend and have no words for. How
can they see or measure what to them seems invisible?
our children are more fluent in the language of acknowledgement, of
appreciation, of recognising another’s contribution or significance. How joyful does it make our hearts when
someone stops to say thank you? How do
we live with joy when the one we’ve chosen to love goes through each day
offering no acknowledgement of any way we’ve made a positive impact in their
lives, and worse still, seems to notice only when they perceive we’ve impacted
asking questions I can’t answer. But
it’s better if we change our expectations.
Changing our expectations isn’t about letting our Aspie partner off the
hook necessarily. It’s about doing
something to help us avoid our own repeated pain, disappointment and despair. Let it go, grieve for it, and expect only
what’s realistic. There may even be
other relationships or situations where we’ve been hurt and also need to let go
of the expectation to be known for who we are, or acknowledged for what we
contributed. Once again, it may be the
limitations of others we need to understand and accept.
a normal yearning to be acknowledged or valued, a normal need, one that
neurotypicals understand and participate in, naturally. Once again, let’s seek out, nurture and draw
on the relationships we do have where there is a solid reciprocal quality
I recently began to write
the beginnings of another poem, but haven’t developed it yet.
It began with thoughts of
how painful it is to our core when we realise that there is no longer anything
interesting in us to captivate our partner’s attention.
When we realise we were
just the special interest of the time.
So adored. Such a priority. The centrepiece of the story. We felt so loved and loveable. We didn’t know any different. Just thought we’d found that one soul that was
made for ours and wanted to share our space, forever, together.
Now we sit neatly on the
mantelpiece, no longer the centrepiece.
Or maybe we’re smiling from a frame on the desk.
We’d thought it was
actually about us. But it ran its
course. The exploration complete. Every angle covered. Learned all they could. Topic exhausted. Box ticked.
We feel invisible. Though certainly a useful item on the
mantelpiece, we never gather dust.
Note I said “learned all
they could”. The limitation is with
them. Our relationships can only go as
deep as they can go. They cannot know us
deeper than they can be known themselves.
Our hearts feel
tricked. We invested so much. We want to grow deeper, together. But living along the surface is all they can
sustain. Gathering items for the mantelpiece,
collections for the shed, knowledge for the head.
The diagnostic criteria
states that AS characteristics become more and more apparent as social demands
exceed their capacity to meet those social demands.
We are living with
partners who have reached their capacity for emotional intimacy and interaction. They cannot go deeper to the level of meaning
that we seek and need in order to thrive.
Our speaker at this
month’s meeting (ASPIA 7 May 2016), Clinical Psychologist Jeroen Decates, reminds us over and over again that we must
find ways to have our neurotypical needs met – to be with those who “know us”, know
our essence, and can sustain deeper interactions with us.
In my counselling and
personal experience I’ve begun to be aware of a subset of AS partners who
perform very highly in the job description of partner as though they must be
applying themselves to it as a special interest.
We’ve heard of some who’ve made their partner
their special interest (long-term) with a high level of adulation and attention
(maybe stifling) but still don’t connect emotionally in any consistent way, but
I hadn’t focused previously on some who actually make it their business to be
the best partner anyone can have, leaving no grounds for anyone to fault
them. They have it covered. Except the partner still feels so alone and
emotionally empty. Many practical and
physical needs are well catered for, solutions are swiftly provided to meet any
difficulty, but the partner still feels invisible as an actual soul with
feelings and emotional needs.
The performance may be flawless, but it’s
still superficial, just ticking the boxes, like making moves on a chess
board. Very deliberately it would
seem. Partners report feeling like their
partner heads them off at the pass constantly. Like all their needs have been
analysed and predicted, with solutions applied before they can even think let
alone open their mouths to ask. And how
dare they ask or have a need that hasn’t been catered for already.
Maybe there are other factors in these
situations. There’s an awareness and a
capacity to perform that many Aspies don’t seem to have, but nevertheless I’ve
heard it enough now to want to include it in what I write about. Emotional intimacy, closeness and connection
are still missing, but most other bases are covered in a way that leaves no
ground for complaint. A great deal of
intelligence is being applied here.
In a couple of these
situations the relationship has actually been ended by the AS partner when the
non-AS partner persisted in asking for emotional intimacy and change, or
questioning the AS partner’s performance in any way. Seems the preferred path may be to leave
rather than acknowledge an inadequacy or a need that he/she has no solution
While I was still
trying to wake up this morning I listened to something that a friend shared on
facebook. I don’t usually bother with
talks or you tube videos via facebook, but the topic was about a 75 year
Harvard study on happiness.
I was quickly roused
out of my drowsiness as the speaker said the words “living in the midst of high
conflict is really bad for us. High
conflict marriages without much affection are very bad for our health, in fact
worse than the experience of getting divorced.”
The talk had nothing
to do with a study into relationships affected by Asperger’s Syndrome, but I’m
sure everyone reading this thought will relate to his words.
I have since found
the link to this talk, and listened to it again. It’s very good. The link is below. I wondered if it could even be something our
AS partners would listen to, being a “Harvard study” and all that!
common thread in most of my conversations with partners seems to be the Aspie’s
capacity for criticism and negativity and the impact on us as we live with this
day in and day out.
our workshop with Tony Attwood in March 2015 someone in the audience asked Tony
if people on the Spectrum are normally pessimistic or is it from childhood
trauma and issues. Tony’s answer was
that pessimism, negativity, “glass half empty”, etc seem to “come with the
territory” of being AS.
seems that many adults on the spectrum compulsively focus on what’s not
complete or correct and compulsively need to correct it.
soul destroying when the object of constant criticism and correction is us.