wondering how many of us feel like our AS partners have an opinion of us that
is different or opposed to who we believe we are, or the feedback we usually receive
from other family members and friends who know us?
been wondering this for a while and have been analysing hard to try and work
out how this could be happening. I found
myself placing myself in my partner’s shoes or trying to see things through his
eyes (that good ol’ empathy thing!) and trying to imagine things from his
perspective. I know this empathy thing
tends to be far too one-sided than would be necessary in a “healthy”
relationship, but in this situation it wasn’t about altering my responses yet
again to defer to him or his needs, it was just about my “investigation”.
discussed before the likelihood that they only seem to recognise a quality
about us if it’s something they actually value or can measure on their own
scale. This could mean that they may be
blind to, or that they discount, the many qualities we possess and live out
every day = blank space (from their perspective). Additional to this, they do not appear to
recognise the part they are playing in every interaction or dynamic of a
situation and do not seem to be able to tell when their behaviour is offensive
or hurtful or inappropriate, in fact they may not be recognising that they are
behaving at all, good bad or indifferent = blank space (from their
what do they notice? Is it possible that
they are only noticing the comments we make or behaviours we display when we
are seeking to address their “unacceptable” or hurtful behaviours?
they building up an analysis of us only according to our responses or reactions
to their hurtful or poor social behaviour?
We painfully understand that certain behaviours or deficits are part and
parcel of Asperger’s Syndrome, but the impact on us cannot be minimized or
rationalized away just by saying “it’s how Asperger’s Syndrome is”.
respond or react in some way to offensive behaviour is instinctive; logical and
“normal” in relationships in an effort to eliminate harm and maintain healthy
boundaries and respect. It is only right
for us to want to address offences for the purpose of seeking change and
improvement and an opportunity to grow and deepen the relationship,
mutually. The ability of couples to do
this respectfully is part of a loving, reciprocal “healthy” relationship, and
love supplies the motivation to make changes to our behaviour, all within
reason of course.
frightening to think that our efforts to improve the relationship might
actually be undermining it. This hits us
yet again with that awful sense of helplessness to nurture and grow this
relationship even though we are investing our souls into it every moment of
every day. From our perspective our
gestures of love and nurture far outweigh any negative. We know in our hearts that this is a fact,
but perhaps in our partner’s eyes this is not so.
confronting and devastating to think that our partner’s filter is only allowing
him/her to pick up negative feedback from us, and that this over-rides every
other positive thing we do or say, and who we actually are.
this yet another gaping hole of loss, with the overwhelming sense of grief that
comes with it? Every moment of every day
we care and give and function relentlessly according to who we really are, our
values, character, priorities, mode of loving, living, giving, and our partners
benefit directly from these qualities, constantly. We cannot help being who we are, this is part
of being true to our own integrity.
again, I am writing these things to acknowledge and validate the experience of
partners. It is difficult to know what
solutions or strategies to suggest, apart from just being aware. Our experience in the ASPIA support group is
that partners are intelligent and constantly seeking to learn, so everything I
write is with the hope that it adds to the knowledge base of each and everyone
of us. Part of sharing.
the message we can draw from this, once again, is to ensure you do not allow
yourself to lose who you are because of this one relationship. It may be your primary relationship, but it
doesn’t need to lead to you depriving the rest of your family, your friends,
your colleagues, the rest of the world, yourself, of the “you” that you really
are. Continue to have the courage to
live this. October 2014.
Many partners struggle with a deep and
painful sense of loss of who they are, a sense of self. We talk about it in our group meetings and in
our other conversations. It is a thread
I also constantly note in my counselling with partners.
Notice it’s a “sense of loss” which means
it’s something we once had, and now don’t.
What is happening?
Perhaps it’s helpful to think about some of
the key things that help us gain a strong sense of who we are? Good bonding and attachment in our early
lives of course is crucial, then as we grow older, being accepted for who we
are, being genuinely loved, having our feelings validated and our views
respected, having our qualities reflected back to us by others who matter,
being able to achieve and succeed in a range of tasks and activities, having
our love received and enjoyed by the ones we love. I’m just thinking of these as I write, but
have you noticed something? Apart from
the ability to learn and master tasks and competencies, most of these things
I’ve listed take place in relationship.
Do they take place in your significant
Perhaps you know you’re genuinely loved in a
“different” sort of way, but do you feel accepted for who you are? Are your feelings validated? Are your views respected? Are your personal qualities and positive
characteristics noticed and reflected back to you with affirming words? Are your tasks and contributions within your
family setting being valued? Is your
love received and enjoyed by the one you love?
If you are not experiencing these crucial
things in your relationship, then you have a reason for why your sense of self
is slowly eroding away. We can have all
the confidence in the world within certain contexts such as work, family of
origin, other community involvements, etc, but we have a natural and essential
need to be in relationship where we can love and be loved, intentionally and
purposefully. September 2014.
I was privileged to attend a Tony Attwood
workshop in Albury (NSW) last Friday, and as usual, I’ve come away recharged with
more information, a sense of validation and renewed passion to continue in
I thought I might just pass on some
helpful gems I captured during the workshop while they are fresh in my mind and
I’m still processing them. I find that
every time I hear Tony he has further refined or deepened the information he is
able to share, so it was great to get a top-up.
The focus of the workshop was children
and teens, but I noticed that Tony and event organizer Sue Larkey (ASD
) made more
frequent comments in relation to adults and relationships this time than
previously which means that much more clinical experience with adults is now
Of course there’s too much to share, but
some of the highlights were as follows:
Aspies have a great fear of making a
mistake and don’t cope well when they make mistakes
will have a “phobic” like reaction to making a mistake
will refuse to try because they believe that if you don’t try you don’t make a
fear appearing stupid and being ridiculed
believe that mistakes prove they are stupid
cannot change their mind because to do so would be to admit having previously
made a mistake
expectation of their own performance
ability to tolerate frustration
no Plan B (no flexibility in thinking, one-track mind)
likely to seek help from someone else
“hit the panic button”
negative emotional reaction
up quickly ends the pain
Meltdowns, emotional reactions
emotions block them from accessing self-calming strategies
emotions reduce their IQ
need time to calm down
need time to process what to do cognitively, not intuitively
intense emotional reaction (meltdown) can be for them like a “cleansing” or a
clearing of the air, but of course everyone else around them will feel
the length of what you say to the Aspie’s level of comprehension and memory Give
one instruction at a time
them time to process
typically struggle with high anxiety. This
is the reason why they tend to be controlling
have the belief that if they “share” they lose control
use passive aggression
situations of emotional blackmail
oppositional and defiant (will not comply)
be a “terrorist” at home
(partner!) becomes a “slave”, they show lack of respect and punish
parent/partner if they do not do what the “master” orders
intoxicated with his/her power
to be calm but as assertive as is possible, be non-negotiable, be impervious to
hostage negotiation techniques - never lie, never promise
and rituals (an anticipated sequence) help to soothe their anxiety, and help
them relax and feel calm
same routines and rituals can become compulsions to do in order to alleviate
feeling anxious though
interest is used as a thought blocker
denied access to the special interest when they are anxious, frustration at not
being able to cope without the blocking activity turns to anger
or melt-down takes place, cleanses the system or clears the air
wonders why everyone else is now distressed and upset because they’re fine now!
then talked about the Emotional Toolbox that he teaches on in each
presentation. Things like physical
exercise/outlet, relaxation, writing poetry or music etc, time with pets,
talking to someone safe, using solitude, meditation, massage, sleep, special
interest, reducing sensory overload, medication, etc that a person with AS can
learn to use to repair their feelings and hopefully prevent meltdowns taking
place. (Helpful for us to use too!) August 2014
Often in the wake of conflict many thoughts
pass through my mind as I try to work out what just happened. Conflict seems to happen so easily, even when
the situation being negotiated seems like it should be quite routine and
non-threatening in the scheme of things.
Now, I believe I am a fairly fair and
reasonable person. I like everyone to
feel like their preferences have been taken into account in any decisions that
affect them, and that the outcome achieved is fairly evenly distributed, or
that common ground has been found, more or less.
Naturally, when everyone is fair and
reasonable it is expected and accepted that sometimes we won’t get exactly what
we want, but that another time we will.
It’s part of the flow of family life and groups.
One thing that seems to surface in our
discussions about Asperger’s Syndrome is the essential need the ASD individual
typically has to have a situation work out the way they want it to or need it
to. It is common for the ASD adult to
have one specific pathway, prescribed or determined by them, that has to be
followed by the partner, family members or a group.
NTs will typically defer to the most strongly
expressed need or preference in a relationship, group or family. We don’t like anyone to be upset, feel
disadvantaged or unfairly treated. And
this is how an ASD individual begins to take over control and dominate the
choices of the relationship, family or the group.
It is apparent that they are unable to
tolerate any pathway or choice other than their own, and when faced with this
possibility may react with demonstrations of distress or rage which are
traditionally experienced by others as forceful and intimidating. It is typical for those around to then back
down and relinquish their own preferences in favour of the preferences of the ASD
individual in order to avoid disadvantage or distress to the ASD
individual. Once this happens regularly
it becomes the “norm” for the ASD individual to dominate a relationship, family
or group situation.
It struck me as being another “all or
nothing” kind of situation. When they
get their way they go on happily (or not), not recognizing that everyone else
has now been overlooked and disadvantaged but has to “suck it up”.
When they don’t get their way, they perceive
themselves as overlooked and disadvantaged and cannot tolerate this
outcome. We don’t like to be accused of
being unjust or selfish, so we relinquish our preference and defer to them,
One can see how important early intervention
and training in social skills are to assist an ASD child to understand and
tolerate the need for turn taking and ultimately the concepts of consideration
of others and co-operation and collaboration with others as they mature into
teens and adults.
We can be proud of our beautiful strengths in
flexibility and adaptability, but it is essential that we become aware of the
ways this can make us vulnerable to dominant personalities. Just another opportunity to lose our sense of
who we are. It is helpful to learn the
principles of boundaries. July 2014
I am writing this thought as a bit of a
word of caution.
My focus is on the nature and extent of investment
we make into our relationships in a variety of modes, some examples of which
are warmth, time, effort, love, resources, gestures, gifts and of course
finances. We know what we are investing
because we are aware of the choices we are making about this all the time. Our primary relationship is where we channel
the best of what we are and have because we are creating meaning both for
ourselves and, hopefully for our partners as well. At least, this is always our hope and
expectation - that what we are investing into the relationship will be
recognised for the contribution that it is and the goodwill we believe we are
creating. We also hope that our
contribution will be appropriately received.
We have a natural expectation that our partners will value our
contribution as much as we do, and of course that they will respond with warmth
and goodwill too. There is also a
natural expectation that our partners are investing as well, perhaps in
different modes to how we contribute, but at least with devotion and
goodwill. And it’s important for us to
recognise their gestures and contribution too.
All in an ideal world.
For some of us in relationships with an ASD adult,
there is a gradual realisation within our souls that the ways we are
contributing are not actually being recognised or valued. I’ve touched on this in a previous writing,
but just wanted to expand on it a little.
The reason why I think it could ultimately create
trouble is if or when one of these relationships ends and negotiations are
attempted to measure or value each partner’s contribution in order to work out
a fair and reasonable settlement. We
know it’s not all about the money, and the Courts recognise the existence of goodwill
and all the many ways that partners contribute to their situations over many
years. It is always nice to think that a
settlement can be worked out without the help of lawyers and courts, but when
our partner can only measure their own contribution and not ours, we are left
in a somewhat disadvantaged and powerless position, unable to influence an
outcome that we know is fair.
What concerns me is that in a number of situations
I’m aware of, the ASD adult can only recognise the modes of contribution that
can be measured, which are typically only the material and financial aspects.
For those who’ve adjusted their own careers in
order to have children, to study, to support their partner’s study or career
choices, etc, all things that couples do to support each other and their lives
together, they may be left in a shaky position.
I don’t mean to create fear, but as we learned in
our April meeting, awareness places us in a position where we can make choices
now about how and what we continue to invest into a relationship that may not
actually ultimately be the relationship and future we have imagined and are
If an ASD adult doesn’t recognise the ways you know
you are contributing because he/she cannot measure that, you will not be able
to quantify your contribution at any point in the relationship including if and
when the relationship ends. This is part
of that black hole we talk about.
Pouring our hearts and souls into a relationship and person we value,
but not having our contribution valued.
This is similar to the concept of saving money in the bank but the
statements never showing the deposits, and the balance is still nil. Ultimately we may realise a similar feeling
to being bankrupt even though we’ve invested much. Our contribution is too precious to be
content with that. May 2014.
This blog piece is a report on our ASPIA partner support group meeting in April when one of our members, who's recently completed a Psychology Degree with Honours, gave a presentation. As follows ...
I’m writing this month’s thought as I’ve come
fresh from our April meeting where Natalie brought an amazingly meaningful
presentation to us that helped us explore aspects of ourselves and how we
relate to our partners.
Without hijacking Natalie’s work or words, I
just felt it would be good to bring a few thoughts through so that those who
can’t get to our meetings can benefit from the education we’re blessed to
There are some aspects of Natalie’s
presentation that I cannot share outside of the meeting at this stage, but more
will be revealed as Natalie develops her ideas.
A strong emphasis that came through is how
extremely hard we all work in our relationships to get responses from our
partners, often with little or no success.
Natalie showed a short video to demonstrate how distressing it is when
an infant cannot get her Mum’s face to respond to her, even though the infant
is trying everything she knows or that has worked before.
Natalie then shared a powerful analogy with
poker machine players. When an
individual’s effort to get a response works sometimes, ie, the response is
intermittent, it then sets up the kind of repeated behaviour that’s behind playing
a poker machine - the person keeps playing because it might work, they might
win, they might be rewarded, because they have before, whereas if they never
won at all they would lose interest and stop playing. Some years ago one of our members likened this
concept to being thrown “crumbs”, sometimes.
Natalie shared many illustrations, and in all
of them we could see ourselves. It was
alarming to see the way we try so hard and get very little benefit in
return. We looked at why we are ok with
that, why we are prepared to work so hard for so little, and what this is doing
to us emotionally. We all know how
deeply drained and exhausted we are. We
are certainly a special kind of people, we are compelled to be helpers and
caretakers, and we expect little in return.
It will be interesting to study us some more.
Over the three years that Natalie has been
attending ASPIA meetings she has noted how intelligent our group members are
and reassured us that our intelligence is a strong protective factor for us coping
with our situations.
She also reassured us that we are “cycle
breakers” and have been a massive protective factor in the lives and
development of our children, in spite of the difficulties we’re so aware that
our children have experienced with an ASD parent.
Natalie shared so much more, and we could
have work-shopped it and asked questions and discussed it for a whole
weekend. We are thankful that Natalie
has agreed to bring us the next instalment later in the year.
Natalie emphasized over and over again that
the motivation behind her presentation was to help us develop more awareness of
ourselves which will in turn help empower us to make choices about how much of
ourselves we continue to give. April 2014
Asperger's Syndrome is a milder form of Autism Spectrum
Many adults with Asperger's Syndrome are well educated, hold down
good jobs and are married and have families. On the surface, although
maybe seeming a bit "different", they appear to manage more or less
normally. However, the experiences of partners and family members
strongly indicate that many adults with Asperger's Syndrome struggle terribly
with the intimate and constant demands of relationships, home life and the
variety of changes that typical lifestyles involve.
Relationships can deteriorate as conflict increases and
neither the individual with AS nor partners or family members possess naturally
the knowledge or skills to understand or resolve what is taking place in the
relationship and home. This leads to great confusion, frustration,
distress, sometimes domestic violence and often marital and family breakdown.
Due to the hidden nature of the difficulties, a general lack of recognition of
Asperger's Syndrome in society and limited access to support and experienced
professional help, partners can become isolated, developing symptoms of
depression, low self-esteem and confidence as well as stress-related illnesses
in the long-term.
It is my belief, and that of all of the members of our
partner support group ASPIA, that with adequate information, support and
professional guidance, along with the motivation of the adult with Asperger's
Syndrome to accept guidance, these situations can improve.
If the adult
with AS will not consider learning about AS or accepting guidance, there is
little hope for improvement in the relationship and the non-AS partner is encouraged
to strengthen his/her personal support network and seek professional guidance
about ways to alter expectations and responses within the relationship in order
to reduce his/her own emotional distress. Partners of adults with
Asperger's Syndrome may need support in relation to loss and grief.
The thought I want to write about
today has been developing since January when I had an “aha” moment in the
course of my daily life.
I recognised a dynamic that was
taking place between me and a loved ASD adult in my life and I developed a
theory. I then thought about every
relationship I’ve had with any ASD individual in the past or present, related
or not, and the theory was spot on in every situation.
This doesn’t mean my theory is
true in everyone else’s situation.
Debate or discussion is always good, but it’s always good to put forward
any ideas because there will always be someone within our partner network who
will experience validation when an experience or idea is shared.
When I approach my ASD individual
with a statement or request I am met with resistance.
Of course it could be me ☺
My statement or request has to be
analyzed and approved in order to be valid.
There is resistance, argument. I
am shut down. The outcome is rarely
approval, rather all the reasons why my need is invalid and my request
unjustified. My need is therefore left
unmet. I feel invalidated … powerless …
like a vapour. I stop asking.
I think of all the characteristics
that seem to go along with this analytical response - critical, “negative
thinker”, “glass half empty”. I feel
sucked dry. The light goes from my eyes.
I, on the other hand, am
responsive. To every statement, request,
opinion or need that is expressed. These
are opportunities. Most of the partners
I speak to or observe in our meetings are also responsive in nature. Open, warm, co-operative, helpful,
optimistic, respectful of the opinions of others, available to the needs or
requests of others. Accepting, positive
and “glass half full” thinkers in many instances. Our natures just automatically respond and
our motivation is to meet needs or fulfil requests if at all possible. To us, this is what relationship is all
One can see how we are so
vulnerable to partners and also other individuals who have strongly apparent or
expressed essential needs and demands.
We are naturally caring and co-operative, keen to help make another
person’s life better if we can. We
regularly defer to their needs and preferences in the belief we’re helping to
nurture a growing and mutually satisfying relationship. But the more we co-operate and adjust, the
more we have to, there is no fulfilling the needs. It becomes a way of life. Little or no reciprocation of the care we
And what of ourselves do we have
left? It’s at this point that many
partners begin to seriously seek counselling and support, and thoughts of
separation begin to germinate.
It is essential that each one of
us has contexts other than home where we are valued and feel credible.
We cannot allow the analysis of
one to continue to define who we are or what we need.
Continuing the conversation about relationships affected by Asperger's Syndrome, I want to talk some more about
those deficits that we are either reluctant to talk about, cannot put words
around or can’t seem to convince anyone that they exist.
How do you
describe something that’s not there?
days it’s important in therapy to help people focus on their strengths because
this is often the only tool we can find to help them move forward and embrace
life again in constructive ways.
don’t believe the difficulties in a relationship affected by Asperger’s
Syndrome can be addressed adequately without first identifying the deficits and
validating the impact these have on the relationship and family life. Then couples need suggestions about what
measures can be put in place to patch or bridge the deficits to prevent harm,
disadvantage or neglect in the lives of family members.
How do you
explain to someone that sense of being “out of sync” with your partner? So hard to put one’s finger on it. That awareness of a disconnect that prevents
communication making sense either way and so therefore prevents agreement,
co-operation, collaboration and resolution, the qualities of being in harmony
with that one soul you chose as your life partner.
disorientation you experience when body language, eye contact or tone of voice
aren’t congruent with what appears to be taking place.
things seem to take them by surprise, as though that universal instinct of
anticipation and automatic response doesn’t kick in and the situation is viewed
as something new, creating lots of anxiety and somehow the need for new rules.
opportunities to nurture and develop the lives of others, particularly the
children in the household, as though anything other than what they have
personally learned and are interested in just doesn’t exist.
of activities, places or gatherings that are outside of what they enjoy or are
to undertake any tasks or gestures that are “just for the sake of the other
person”, although so often we witness them going out of their way for others in
a community setting. This hurts so
much. And then everyone tells us what a
wonderful person they are. Yes, we know
they are, but why are we so undeserving, only getting the “crumbs” when we’re
the one they promised to personally love and cherish for life, before all
humiliating to have to ask for those life-giving hugs, and desperately lonely
going without when we’re sad, frightened or bereaved. And those words we so deeply crave to hear
roll off their lips “I love you”, having to be content to have heard it the day
we married and maybe once or twice since.
How can a
human soul heal or thrive within a relationship such as this if the deficits
aren’t recognised and addressed in some measure?
Surely the deficits
give a starting place for therapy, and then a lifetime of goals to work on! How we ache for partners with the willingness
to just “want to”. Bit by bit, slowly,
growth, the spirit either breaks, dies or is forced to liberate itself. Carol Grigg.
the morning of Australia Day this year I woke with a shy but joyful feeling
knowing that my name was on the Australia Day 2014 Honours List for the award
of a Medal of the Order of Australia (OAM) for “service to families affected by
Syndrome - my passion, my life, the beginning of my journey to become a
Counsellor, the reason why my personal world collapsed and my family broke, my
inspiration to make a difference and help ensure that other families had
information and support much sooner than we had, the hope that eventually
awareness of Asperger’s Syndrome and knowledge about the subtle but significant
effects within relationships would have filtered through every part of society
and that stigma could be overthrown, with Asperger’s Syndrome being viewed as a
“difference” affecting at least 1 in 100 individuals and normal families rather
than a “disability” that affects only a rare few.
“service to families affected by Asperger’s Syndrome” began in October 2000
when I asked our psychologist to please
put me in touch with any other women she came across who also had husbands with
Asperger’s Syndrome, the condition my own husband had just been diagnosed with
following 17 years of a marriage and family life that I can only describe as a
confusing nightmare. Always trying,
always hoping, always seeking knowledge, always trying to find someone to hear
me, to help me, someone who wouldn’t view me as just trying to discredit my
husband. Suspicion and silence were the
typical responses. We had 5 beautiful
was just a few months later that the psychologist was able to put me in touch
with one other woman, and the seeds were sown for the establishment of a
support group for partners of adults with Asperger’s Syndrome. This group began formal meetings in 2003 and
continues to meet monthly in Sydney under the name ASPIA (Asperger Syndrome
Partner Information Australia Incorporated), drawing 15-25 people to each
meeting. Our strength continues to be in
providing information and education, along with validation and support, both
through our meetings and also our website at www.aspia.org.au, which attracts
an average of 200 visitors each day.
has been my privilege to co-ordinate and be the driving force of this support
work for which I’ve just been recognised with this Medal of the Order of
Australia. I am humbled because it was
never about being recognised, but I am also delighted because of the personal
validation this has provided for me, strengthening my confidence and sense of
credibility which I have continued to struggle with at a personal level since
those early experiences of being disbelieved and silenced.
Counsellors know the value of hearing and believing our clients. That joy of building rapport, of validating
their personal truth, knowing that the therapeutic relationship must start on
this firm foundation if our client is to have any hope of benefiting from the
counselling journey. The joy we
experience as we observe life returning to their eyes, a smile to their faces
and resilience to their spirits.
was in May 2000 (prior to my knowledge of Asperger’s Syndrome) that I sat for the
first time in a professional Counsellor’s office in Ashfield Sydney. My Counsellor’s name was Julie. She believed me. Then she validated me by saying “This is
definitely not normal”. Then she
expressed concern at my level of fear for going outside of my church community
for help (even to another Christian organization). This was education, providing me with a
benchmark for a societal “norm”. The
forming of that alliance in the counselling room with Julie began a powerful
journey for me planting in me the desire to one day train as a Counsellor so I
could become the one that broken people could come to and find validation and
took me until February 2009 to begin my Counselling training with AIPC (Australian Institute of Professional Counsellors) and
December 2011 to complete it due to the detour that Asperger’s Syndrome took me
on but I have now been working part-time as a Generalist Counsellor for a rural
health service for more than two years and I love it.
And I am absolutely grateful for my understanding
and experience of Asperger’s Syndrome because I know I am far more open to
“difference”, accepting of people in general, non-judgmental and calm when
clients behave strangely or speak abruptly, open minded when someone describes
scenarios that seem implausible, empathic when clients don’t understand why
their relationships fail or they can’t cope in social situations, alert when
someone seems “too good to be true” or exposes inconsistencies, etc. That’s the beauty and power of knowing about
it. It’s a tool in my Counsellor kit,
without ever having to mention it. I
might just be the one that can be an ally for a disenfranchised soul and a
reference point for their pathway forward.
Carol Grigg, OAM, Dip
Counselling, Member ACA, Grad Member AIPC,