symptoms blown cherry The Experience of the Non-AS Partner Partners living in a marriage or long-term relationship with an adult with AS report feeling a deep impact in their lives in the following ways: • Confusion (yes) • Frustration (yes) • Powerlessness (yes) • Isolation (yes) • Being disbelieved by others, including professionals (no) • Burn-out (yes) • Sense of being a mediator and interpreter at home and outside the home (yes) • Loss of sense of self (yes) • Changes in personality in order to cope with AS partner’s behaviour (yes) • Increase in feelings of anger (yes) • Feeling like partner won’t cope without them (if we separate) (yes) • Trapped (yes) • Shouldering responsibility for most household matters and well-being (yes) • Neglected emotionally (yes) • Constantly criticized and blamed unreasonably (maybe a little) • Alone (yes) • Like a single parent (?) • Often feel in damage control or crisis management. (yes) • Hyper vigilance to prevent chaos and relationship breakdowns (yes) • Verbally, psychologically and sometimes physically abused (psychologically) • Efforts to build and sustain relationship constantly sabotaged by pedantic requirements of AS person. (yes) • Depression (no shit) • Hopefulness dashed (always) • Sense of sadness at unrealised potential in themselves, AS partner and other family members (big yes) • Unsupported (yes) • Often betrayed by lack of loyalty and kindness from AS partner (feels like it) 090923 ... blown cherry Partners with AS The partner with AS can manifest a wide range of varying behaviours with varying intensities. However feedback from their partners in marriage suggests there are many common threads in their experience of marriage. Below is a list of some common characteristics of the marriage experience and of the partner with AS, as described by members of the ASPIA Partner Support Group: • An essential need to have things done in a prescribed manner or order (no) • A tendency to correct and instruct those around them (not more so than anyone else) • Seeming to be experiencing “normal” situations differently, noticing different things and having to deal with different priorities which often prevent co-operation and teamwork, leading to frequent conflict. As a result the relationship and cmmunication deteriorate quickly. Efforts to reason and resolve situations often result in partners feeling that they have been dug in deeper. They often feel that their efforts have been fruitless and even worse, have increased the level of complication. (1st bit yes) • Verbal combat around “technicalities” or “order” of a situation rather than the “spirit” or “essence”. (not really) • Apparent evidence that the partner with AS is not “reading” situations or people intuitively and is consequently behaving insensitively or inappropriately for the circumstances. (yes) • The partner with AS may appear to have an air of superiority or even arrogance and an apparent lack of respect for the knowledge, credibility, expertise or authority of others. They may have high intelligence or gifted abilities in some areas but seem to lack basic “common sense” or “know-how” in other more commonplace situations. (yes, zaphod) • The partner with AS may not recognise the effort their partner is constantly contributing to the relationship to try to sustain it. They may be extremely sensitive and easily upset - and may take issue or be offended - over small matters which in turn can seem to jeopardize the stability or quality of the whole relationship. (yes) • Interests and hobbies of some partners with AS tend to take on an obsessive characteristic at the expense of all other needs, duties and relationships around them. (this we pretty under control, but still needed work) • There is frequently a tendency to hostility, defensiveness and retaliation if the partner with AS is challenged or thwarted. (yes, but perhaps that equally describes me) • The partner with AS can behave intrusively (not really) • They may be very controlling (no) • The partner with AS may take roles seriously, to the letter of the law, especially as “Head of the Home” in a family with religious beliefs or tendency to traditional roles. (??) • Their courtship style is almost “too good to be true”. (there were times, beautiful times) • After marriage the partner with AS often seems to lose motivation to keep working on the quality of the relationship as though the wedding day has “completed” their pursuit, allowing them to pursue other interests. (does this count feeling as though I was taken for granted?) • The spouses of partners with AS claim that their spouses often do not appear to read the needs or notice the emotions of other family members, and they don’t enquire or reach out to them. However, when they do notice a need or “we tell them about our needs, they don’t seem to know instinctively what to do to make us feel better, and they will often do nothing and remain disconnected”. (big F-ing yes) • The partner with AS may have great difficulty cooperating with others or working as part of a team or unit. They may seem focused only on what’s going on for them, and unaware of what’s going on for those around them. (don't think so) • They often seem to over-react to efforts to talk over matters with them and may perceive such efforts as a personal attack. (maybe?) • They often have difficulty coping or adapting around the daily “happenings” within a family situation. (?) • They may insist on predictability in others and in household activities, but seem to “live on a whim” themselves leaving the family feeling uncertain all the time. (not really) • The partner with AS may “shut-down” if they don’t know what to say or how to behave. They may disengage with partner or family indefinitely. (how many times havae I used "shut-down" as a descriptor? Damn, I've run out of grains of sand to count on) • They may also “melt-down” or have episodes of rage and aggression when they don’t know how to deal with circumstances, or they don’t want to discuss, negotiate, compromise or resolve situations. • They may hold to a single acceptable method or opinion in many areas of daily life. • Social isolation may result for the family if the partner with AS is consistently avoiding social situations. On the other hand, some partners with AS can seem like the “life of the party” and keep everyone entertained or “engaged” (willingly or unwillingly) by sharing a great deal of expert knowledge on favourite topics of interest. • The partners of people with AS will often feel as though they should and need to “repair” social faux pars, etc created by AS partner. (I had learned to get over it) • Some partners with AS may be very controlling and unjust with the use of family finances, or on the other hand, avoid any financial responsibility within the household completely. They can quickly run the family into financial crisis by spending excessively on special interests, collections or hobbies. 090923 ... blown cherry That last blathe was more for the benefit of anyone else reading this who may find it familiar. Strange as it seems, I seem to have more symptoms of the non-AS partner than he displayed as the suspected AS one. ....................................................................................................... 090923 ... blown cherry AS in Relationships: Is there Hope? It is difficult to write about the realities of relationships affected by AS without risking offence to people with AS. It is important however to pause a moment and focus on the reasons for writing about relationships affected by AS and why there is such a need for information and validation for all parties concerned. The reasons for writing about relationships affected by AS are because these relationships are confusing and difficult and can involve great stress, grief and trauma for both partners, and any children of the relationship. Different cultures The reality is that the person with AS and the person without AS are as different from each other as people from completely different cultures. We may look the same from the outside, but underneath we are driven by completely different priorities, needs and perceptions. It’s deeper than just the differences that normal relationships struggle with. Whilst it is evident that many people with AS do desire to be in relationship and enjoy social situations, it would seem that this is not a priority for them in the same way that it is for people who do not have AS. People with AS generally seem to approach things with a system or formula and be more focused on a particular interest, project or task than on relationship with the people around them. For people who do not have AS, their relationships are their life-blood and all interests are undertaken in the context of social connectedness in some way. Immediately this displays the chasm between the two worlds or cultures and goes a long way to explaining the difficulties, strain and unhappiness that characterise most relationships formed between someone who does have AS and someone who does not have AS. Who’s to blame? Rather than assigning blame either way, perhaps it is helpful to just begin to adopt the attitude that it’s completely understandable that the two worlds are scarcely compatible. It’s not about defect. The majority of people with AS are enormously gifted in specific fields so they’re not inferior. The problem begins because people from the two cultures, namely AS and non-AS, form a relationship and expect to forge a solid, mutually satisfying conventional marriage relationship. AS creates problems in relationship particularly because the person with AS does not have the same relational needs as the non-AS partner and he or she is mostly unable to instinctively recognise or meet the emotional needs of his or her partner. Do we give up? Does this mean that people who have AS should not form marriage relationships with people who don’t have AS? Should those who are already married face the reality and give up? My experience in support work with partners indicates that there are countless marriages in serious trouble because they haven’t had knowledge of AS in time to avoid forming seriously dysfunctional relationship patterns. These dysfunctional patterns daily threaten to destroy the relationship and both partners, particularly the non-AS partner. How many more marriages are still “in the dark” about the presence of AS in their situation? How many marriages have already been lost, and to this day the partners have no idea that the difficulties were caused by the characteristics of AS? Perhaps AS in its most honest and purest form is quite amenable. Perhaps it is the denial, the complex and multi-layered coping mechanisms and defensive strategies that make AS so difficult to live successfully in relationship with. Normal expectations of marriage People who do not have AS enter a marriage with the normal expectation that the marriage relationship will be the priority and will be about togetherness, mutual terms and meeting of needs. From the stories I have heard it seems that people with AS also have this expectation, at least in theory, but countless testimonies indicate that in reality by some process of attrition the relationship ends up being more one of practicality and convenience for the person with AS than for the loving and meeting of emotional needs of the marital partner. A sentiment expressed by some non-AS partners is that they feel their AS partner must have analysed them prior to marriage and assessed them as being capable of filling a compensatory role for his or her own social, relational and functional deficits. The non-AS partner unwittingly becomes the social bridge and interpreter and often fills the role of personal assistant. In the privacy of their relationship, the person who does not have AS will more than likely be physically and emotionally drained, working overtime to mediate relationships for his or her partner and keep life on track for both of them. Perhaps the relationship has taken on more of the characteristics of a business partnership or arrangement. For those who had normal expectations of the mutuality of marriage, there will be bitter disappointment, a sense of betrayal and a feeling of being used and trapped. Instinctively they know that their partner needs them to carry out these vital roles for them, but feelings develop that the relationship is about the needs and interests of the person with AS and that there is not even room for their own needs. It is these sentiments that set up the hostility expressed by non-AS people towards those who have AS. Many partners feel that they are daily sacrificing their own values and losing their own souls and sense of self to help fulfil the priorities of the partner who has Asperger’s Syndrome. They begin to feel that they have lost their individuality and identity and are entirely defined by the role they fill for their AS partner. There’s a sense that there is no mutuality, no equality, no justice, no hope. What is the answer? Is there hope? I see the only hope for relationship as being contained within the willingness of the person with AS to gain as much insight as possible into the realities of his or her differences, recognise the impact this has on his or her relationship, seek professional guidance and co-operate with his or her partner to develop a more healthy mutuality in the relationship. Surely this has to be a condition of entering marriage or continuing in an already established marriage. “How can two walk together except they be agreed?” (Biblical quote) Ignorance of AS So how do we move on from the impasse that still exists between the two communities? I believe most of this is caused by the ignorance of AS that still exists within our communities and professional services. No-one knows enough about it to be able to identify it when they are confronted by it and very few have an adequate understanding of it. Those with AS are afraid of being labelled or seen as defective. Those who realise they are living with someone who has it are either disbelieved or crushed by the lack of support and professional help. People with AS can tend to be militant and hold rigidly to what defines them as individuals. They can be very interesting and often likably eccentric. They may have a tendency to claim victimisation from those who do not have AS, while they determinedly continue to navigate life and relationships on terms of their own rather than mutuality and compromise. People who do not have AS continue to long for the mutual meeting of emotional needs within the marriage and resent the reality of living on terms dictated by the needs and priorities of the partner with AS. In effect, their flexibility is exploited by the inflexibility of the person with AS. Of course marriage should not be exclusive to those who do not have AS. However, in the same way that any individual on this earth is responsible to gain selfinsight and work on character defects that impact on their relationships (if they wish to stay in a relationship!), so also is the person with AS responsible to gain self-insight and work on defects that impact on their relationships. The differences and deficits may be part and parcel of AS, but marriage is about both partners taking responsibility for the well-being of the relationship and each other’s emotional needs. all the above from: www.aspia.org.au 090923 ... blown cherry I don't know what all of this means, all I know is that I weep with sadness and relief to find that someone else has trod these floors before me. Killing me softly. ................................................................................................................................................................ 090923 ... Photophobe Posting this sort of thing rather than talking about it is ridiculous. I don't have Asperger's and to pretend that this pathology is the reason for a failed relationship is such a folly. I recognise SOME of these elements, but so would many people. I feel that you project a lot of this onto me without any awareness of my experience of things. Yes, I misread situations. Yes, I lack common sense, and this is made obvious by the fact that I'm smart and know so. Yes, I'm bad at comforting people. These three things can be explained in so many other ways. ( eg I'm unobservant and insensitive.) 090923 ... Ouroboros The model of psychology used today is based on the medical model- looking at the symptoms to classify disease. This has its limitations- and it is up to us to move into a holistic and positive approach to psychology- instead of hunting down and identifying symptoms, we ask for skills, we view the client as the best resource for information about themselves, and the therapist as a partner in a therapeutic relationship. We know that humans are more than what society says they are lacking, and we believe that mind, body, spirit, community, society, hopes, dreams are all a part of each one of us. We are not our symptoms, and our experience is not always a perfect fit into the labeled box of a disease. Everyone is capable of creating a better world for themselves, in the terms they describe. 090923 ... blown cherry yes well, I did note that I had more symptoms of a non-AS partner than I thought you had in what would be the "AS partner" role. Perhaps I am the one with the mental issues, well, of course I am. 090923 ... Photophobe I'm not making any claim on being sane. I just feel that its a bit unfair of you to pretend that the problems our relationship may have had were due to me having a particular mental illness, especially because I'm pretty sure I don't have this one. 090924 ... blown cherry I'm not blaming them on something I'm just find a release in finding all of my feelings laid out in a list of symptoms. I feel so alone and I'm just trying to find a connection with the world and I found one and you keep trying to deny me even that. I find solace in this precise list of my emotions and feels and I don't give a shit who's written it or why it exists but someone has pinpointed almost every feeling I had for those 7 years - why is it so wrong for me to find relief in that? I'm so exhausted from carrying everything for so long. I just want to be alone. 090925 ... blown cherry • Being disbelieved by others, including professionals (no) actually yes. My counsellor tried to convince me that the behaviour I described meant that he was absent from the relationship, or doing things beside me as opposed to with me. But I told her I didn't think that was true. The minute I said that I realised she was just going to think I was delusional, but she doesn't know him like I do. (god there's no way to make that not sound delusional) 090926 ... Photophobe So did she disbeieve you? Or did you just feel that she did? (I don't feel that I was absent at all, and definitely did things with you, not just at the same time if that's what she meant, btw) 090927 ... blown cherry That is what she meant and yes I agree with you. She also heavily questioned what I meant when I said you were special, cause she didn't believe that either. But it's true, even Josh knows that. 090927 ... blown cherry I don't know for sure that she disbelieved me, they're psychologists, they're trained to restrain their reactions, and just put different spins on things that you might not be able to see by yourself. I think when I explained (at like the 3rd meeting) that you had some mild (or maybe sometimes not so) sociopathic tendencies she cottonned on a little more. 090927 ... Photophobe I'd tend to listen to her when she questions your belief that I'm "special". There isn't really any such thing, there's just people and their hangups/talents/deficits. To think anyone is special is a little bit crazy (unless you think everyone is special, just in different ways- which is inane in that it really just means that nobody is special). 090927 ... minnesota_chris or that you can take delight in everything, which is really wonderful if you can. 090929 what's it to you? who go blather from