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|Posted on October 25, 2014 at 7:51 AM||comments (0)|
I’m 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?
I’ve 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”.
We’ve 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 perspective).
So 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?
Are 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”.
To 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.
It’s 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.
It’s 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.
Is 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.
Once 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.
But 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.
|Posted on October 25, 2014 at 7:46 AM||comments (0)|
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 relationship?
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.
|Posted on October 25, 2014 at 7:42 AM||comments (0)|
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 partner support!
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 Educator, www.suelarkey.com) 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 coming through.
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
Meltdowns, emotional reactions
Tony 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
|Posted on October 25, 2014 at 7:20 AM||comments (0)|
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, again.
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
|Posted on October 25, 2014 at 7:03 AM||comments (0)|
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 working towards.
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.
|Posted on October 25, 2014 at 6:55 AM||comments (0)|
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 receive there.
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
|Posted on May 18, 2014 at 12:18 AM||comments (0)|
Asperger's Syndrome is a milder form of Autism Spectrum Disorder (ASD).
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.
View a Fact Sheet from the American Psychiatric Association Diagnostic Manual 5 (DSM-5) for further information about the change in diagnostic criteria of Autism Spectrum Disorder: http://www.dsm5.org/Documents/Autism%20Spectrum%20Disorder%20Fact%20Sheet.pdf
|Posted on April 1, 2014 at 5:45 AM||comments (0)|
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 about.
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 show.
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.
|Posted on February 26, 2014 at 5:14 AM||comments (0)|
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?
Sure, these 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.
However, I 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.
And the disorientation you experience when body language, eye contact or tone of voice aren’t congruent with what appears to be taking place. When ordinary 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.
Those lost 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.
The avoidance of activities, places or gatherings that are outside of what they enjoy or are interested in.
The refusal 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 others?
It’s 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, is fine.
Without growth, the spirit either breaks, dies or is forced to liberate itself. Carol Grigg.
|Posted on February 10, 2014 at 10:46 PM||comments (0)|
On 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 Asperger’s Syndrome”.
Asperger’s 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.
My “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 children.
It 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.
It 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.
It 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 support.
It 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,