Category Archives: Relationships

The gift that is diagnosis

My husband had his first evaluation/screening for Asperger’s Syndrome a few days ago.  He’s now on the pathway to full diagnosis which, on the NHS, will take approximately a year.

He first realised he has AS about a year ago, when he watched a documentary about it. Suddenly, much of his life seemed to make sense: his lack of interest in having friends, lack of desire to interact with people in general, incredulity that Robinson Crusoe would ever want to leave that idyllic island, his childhood wish that he was invisible so he could observe without being observed, hatred for certain fabrics and sensations on his skin, almost superhuman strength, obsession with timekeeping, drive to know how everything works, tendency to stare at people, or avoid eye contact…

It took him three days to tell me, and even then, he said the only reason he told me was because he knew it was very hereditary and saw some traits in our daughter. He also said he’d understand if I wanted a divorce.

It took me about three days to get over the initial shock of this new information. I went into a complete breakdown and called my ex counsellor who just so happened to have had some personal experience with AS in her family. The one thing she said that I clung to at that time was that he hadn’t changed, he was still the same person, this was a neurological difference that had always been there.

The reality, however, was that he HAD changed… from a man who was playing a part in order to try and fit in, to a man who now no longer cared if he fitted in. For a while, he became almost a caricature of an aspie man: all previous little gestures of love and intimacy were immediately halted, no more kisses on his texts, no “I love you’s”, no physical contact of any kind, minimal conversation… he withdrew completely.

I began obsessively researching AS and immediately my heart sank as I read all the information about aspie men: their failure to maintain relationships, emotional and often physical distance, lack of empathy… and, even worse, I stumbled upon blog after blog by women who were, or had been, married to an aspie man and they didn’t pull many punches. My hopes for a ‘normal’ marriage seemed fruitless and I began to sink into a very deep depression.

At the same time, my husband was reading similar material and processing it in his own way. Instead of trying to sort out our problems (as we had been for about nine years, by that time), he was now burying his head in the sand, working longer and longer hours, avoiding intimacy with me by coming home after I’d gone to bed, getting up before me and eventually, sleeping in another room. Conversations were limited to essential information only and we drifted further and further apart.

A couple of months on and I’d researched enough about AS in females to know beyond all doubt that I too was an aspie, and that it was very likely our daughter was too. The condition is very different in females and there is much positivity to be found online written by other female aspies, so I quickly became very comfortable with my self diagnosis, eventually seeking formal diagnosis (which I wrote about in this post). My husband, however, flatly refused to seek formal diagnosis.

Six months on from my husband’s initial realisation, we’d hit an all time low point in our marriage. Another argument over his lack of time spent with the family resulted in him telling me that he didn’t love me, had never loved me, didn’t love anyone, not even his children, didn’t really know what love was anyway, and that if we all died the next day, he probably wouldn’t cry, he’d merely be relieved that he was no longer obligated to us and would get on with living the rest of his life as he wished, alone. When I vehemently disagreed with him, reminding him of things he’d said, done, and even written, in the early years of our relationship, stating his undying love for and devotion to me, he said that it was all an act, something he did because it was expected of him. He’d faked it.

I was devastated. Told him to leave and gave him back my wedding and engagement rings. After a night of crying and trying to plan what to do next, I had the sudden idea that perhaps this was depression. He had also said he didn’t enjoy playing music any more. Not enjoying previously enjoyed activities… hmmm… So I called him and asked if he’d consider a trial dose of antidepressants to see if they made a difference. He agreed, so we decided it was best for him to carry on living with us (we rarely saw him anyway), while we waited for the doc appointment (booked for 3 weeks time).

In this time, I tried to change my mindset to that of a single mother. I realised I needed to stop expecting anything from my husband and make sure my children were not being deprived. I changed some things around the house, took control of some things that were previously my husband’s jobs, filled my diary with play dates for the kids with other families and felt very relieved that at least my daughter had a good male role model in one of her playgroup keyworkers. I also tried to understand my husband’s perspective more. He said he thought he was most likely asexual, and he even suggested he convert our garage into a bedsit for himself and I have an intimate partner living with me in the house. However this partner would have to be female because he didn’t think he would be happy with another male so close. Not because of any jealousy, but simply because he found testosterone driven men tiresome and preferred female company, if he had to tolerate company at all! This arrangement was unacceptable to me, however. So we continued through the weeks.

The doctor’s appointment came and went. He didn’t fit the criteria for depression. Even I could see that. He was very happy with the current arrangement. He had no pressure, I was handling everything, he came and went as he pleased, the children missed him so were always overjoyed to see him. I was making a huge effort to keep everything as pleasant as possible (having accepted medical help by way of antidepressants). His violent outbursts had stopped, he’d become completely controlled, calm, emotionless. He did, however, finally agree to being referred for AS assessment. I think this decision was largely due to his panic that he’d scored very high on a test for Schizoid Personality Disorder and had all the traits of the ‘Secret Schizoid’. He told me he didn’t see anything positive in being a secret schizoid, whereas at least Asperger’s Syndrome came with lots of positive traits.

One Sunday, whilst we were out together in the car, he casually said this was the 10th anniversary of the first morning we woke up together. I was floored. He’d never mentioned this date before. I wondered if it was an indication that our relationship actually meant more to him than he’d led me to believe? In the same journey, he asked me what I’d like for my forthcoming birthday. I decided to take a gamble and said I’d like my rings back, but accompanied by him recommitting to his wedding vow of loving me ’til death us do part. There was quite a lot of silence for the rest of the journey.

My birthday came and went. No rings, however. But generally, things improved. He was spending more time with us, and even moved back into our bedroom for a while. I finally accepted that he didn’t want to be in the band any more, he didn’t enjoy playing, found the whole thing too stressful (having to interact with people) and so I lifted that weight off by saying I’d find a replacement for him.

Months passed and he eventually had his first evaluation. He was actually quite nervous (as nervous as he gets, anyway!) and even consented to discussing his traits with me in the car on the way to the appointment. He wanted me to come in with him, saying that I could describe it better than him. I was a little surprised at how much he now seemed to really want the diagnosis!

The assessor wanted to see him alone (which was quite a relief for me, I didn’t want him having any get-out in the future by finding some way to blame me and disown the assessment). He was in there for two hours. And a different man walked out. He was calmer, more self assured. Somehow more at peace than I’d ever known him to be. I overheard the assessor say something about having access to adult support services until the next stage and knew the result. It wasn’t a surprise, not to either of us, but what WAS a surprise to me was how much this had affected him. His relief was very evident and there was even a hint of a smile as he told me the outcome. He’d scored 10 out of 10 on the AQ (Autism Quotient) test and although he said he’d rather he’d scored 8, I’m not actually sure I believed him. I think he was very glad to have his aspie status confirmed (albeit unofficially at this stage). The rest is just formality, as far as he’s concerned.

I remember the validation and huge sense of relief I felt at receiving my official AS diagnosis. Even though I was sure, there was always a tiny, niggling doubt eating away at me that maybe I was wrong, that there was something else fundamentally wrong with me, that I was still somehow a broken, lesser human being in need of ‘fixing’. Diagnosis ended that and finally gave me peace. The same peace I was now seeing in my husband.

That night, he initiated sexual contact with me for the first time in years.

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Filed under Aspergers Syndrome, Autism Spectrum Disorder, High Functioning Autism, Relationships

20 Jul ’13: The wolf in sheep’s clothing

A few books and blogs written by and for adult Aspie females have alluded to the fact that an alarmingly high percentage of females on the spectrum have reported having experienced sexual assault, molestation, rape and other forms of sexual abuse. This information was of great interest to me, as a survivor of similar, but it had never occurred to me that the incidents could possibly be related to my Asperger’s.

This topic was recently explored within a particularly close-knit online group of adult Aspie females and I was shocked, not only at the number of other women who had experienced some form of sexual abuse, but the sheer extent of some of the abuse tolerated. As stories were shared, we were all taken by surprise at the similarity of many of our situations and experiences. One conclusion that seems to be indisputable is that the Asperger trait of being unable to read non-verbal communication (and therefore unable to discern intent) and our tendency to be naïvely innocent and trusting of people, has resulted in dire consequences for many of us. Furthermore, the difficulty we experience in establishing connections with peers, and our general communication difficulties, mean we often don’t know who to tell or how to obtain support, so therefore continue to suffer in silence.

Respect for the privacy of my friends precludes me from writing about their specific examples here, so I will use my own experiences to illustrate my point.

I was sexually assaulted by a large (15+) group of boys in my high school toilet during one lunchtime when I was 14 years old. It was set up by two females who didn’t like me and persistently bullied me, most likely because of my AS traits. I didn’t perceive myself to be in any danger, even as the boys blocked my route, closed in on me and began pushing me backwards towards the gents toilets. Perhaps if I’d been able to read their intent, I’d have realised what was happening sooner and possibly made enough noise to have alerted help? Who knows. Subsequently, I was also coerced into sexual activity against my will by a few boys/men between the ages of 14 and 16, finally losing my carefully guarded virginity when I was raped by a boyfriend at 16. My literal interpretation and unquestioning acceptance of my misogynistic upbringing and Christian faith meant that I assumed I was now obliged to marry him. So I remained his girlfriend for three months, tolerating all manner of sexual abuse as he ‘trained’ me to meet his needs. That was, until he grew bored and moved on to the next girl, leaving me confused and devastated.

Most, if not all, of these situations could have been preventable if I had been able to read nonverbal communication.

This conclusion has also been reached by many of my fellow Aspergian female friends but as harrowing as many of their stories are, another character trait appears to emerge. Resilience. We each have our emotional (and in some cases, physical) scars but there is a resilience that I think could be born out of the AS tendency to process things logically, using intellectual rationalisation. Although, quite understandably, there is evidence of dissociation of various sorts and many of us have struggled to reclaim our own sexual identity and autonomy, there is still something so very uniquely pure, innocent, and irrepressibly frank in the recounting of these incidents that endears us to each other.

Discovering our common experiences and traits has been a very liberating experience. However there’s no escaping the fact that these incidents have had their impact. Speaking for myself, in my early 30s I was finally in the fortunate position of being able to undertake extensive psychotherapy to undo the damaging effects of my upbringing and experiences, but it wasn’t an easy process. It took two years of serious commitment and nearly cost me my marriage.

Now, as the mother of a young girl who also appears to have many AS traits, I find myself agonising over trying to strike a balance between leaving her to enjoy her childhood innocence and making sure she has learned the safety skills she may need, especially as she starts school soon and will no longer be fully under my watchful protection.

My own mother tells me of a terrifying moment for her, when I was nearly 3 years old. She was shopping and dropped my hand for a moment to pay at the till for something, then turned to look for me and saw me being led off towards a small passageway by a strange woman. Needless to say, I’ve already had the ‘stranger danger’ talk with my daughter and she is fully aware that there are a few circumstances when it is absolutely ok with mummy for her to kick, scream, bite, hit and run away from a stranger. At what point I extend that advice to include people she knows, who are behaving inappropriately towards her, I still haven’t decided. That requires explaining what is inappropriate. And at her current age, much ‘inappropriate’ behavior is still very innocent exploration. This is where I rely on my more neurotypical friends to keep me right. Their more typically developing children seem to acquire this knowledge and reserve quite naturally. I didn’t. I still often struggle to understand the unspoken societal rules surrounding some behavior and hope that people make allowances for me since I’m a ‘thespian’.

Hopefully I can prepare my daughter for the world a bit more thoroughly than my (very likely undiagnosed aspie) mother managed to prepare me.

Next post: The day after… a generation on

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Filed under Abuse, Aspergers Syndrome, Relationships, Sex, Uncategorized

1 Jul ’13: A new era of aspie therapy?

My last blog post kicked off a series of interesting posts in one of my aspie support facebook groups and a private message exchange with a fellow aspie girl (who, I’m sure, will be blogging about this too very soon!) has resulted in a bit of a lightbulb moment!

In my early aspie research, I was surprised to read that, due to sensory issues, many aspies don’t enjoy sex. Happily, I don’t have that particular issue, I think I may fall into the bracket of ‘sensory seeking’ in that department. It’s been somewhat reassuring to find out that I’m not alone in that.  Quite the reverse, in fact. In discussing sex as a stim, it came to light that many aspie ladies are enthusiastic participants in the BDSM scene.

The overwhelming exuberance of the discussion set my aspie pattern-seeking, finding-order-in-chaos, rationalisation-to-the-optimum-process brain into overdrive and the following question came to mind…

Is there a link between sex as an autistic stim, Proprioceptive sensory dysfunction and enjoyment of being restrained during sex?

This was quickly followed by another question…

If so, could the carefully structured experience of bondage, coupled with the emotional and physical release of orgasm, offset impending autistic meltdowns in adults?

It’s an interesting theory, is it not? And oh what fun to research! 😀

Could this herald a new era of autism intervention? Is there an emerging market for a new style of adult autistic sensory equipment? Is my husband going to freak out when I ask for his assistance in my research? Lol

To be continued… 😉

***

A day or so after I published this post, my aspie friend had a bad day and could feel a meltdown building. She sought support from our facebook group so I suggested she test out my theory. She did… and it worked! 🙂 This was her comment the following day:

“I feel great this morning! We had a great BDSM session last night. Even tried a couple of new things that we hadn’t tried before. I needed the rope really tight where I felt anxiety and tension (across my chest). Afterwards my husband gave me a shoulder massage. I felt so relaxed. All the tension, tightness, build up of energy and emotions in my body was gone. It was all released in a good way. I don’t have that horrible ‘full’ overloaded feeling in my body either. I slept really well too. I’ve been having trouble sleeping lately and this was the first night I slept really well. I feel refreshed and renewed this morning. Normally if I’ve had a meltdown I would be drained, tired and feel horrible but all the energy would be released from my body. I would probably sink into a depressive meltdown (depending how bad the other meltdown was) and then spend the next week trying to recover from both. But this time that didn’t happen. I feel great and like a new person.”

I was so pleased for her and even more curious now myself.

You can read my friend’s own blog post about this here: Fetishes and Autism

Next post: The wolf in sheep’s clothing

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Filed under Aspergers Syndrome, Relationships, Sex

28 Jun ’13: Let’s talk about…

Ok. Pushing discomfort aside, this is something I think has been an important signpost in the fog for me.

(Deep breath, make sure my mum isn’t reading…)

*whispers* Sex.

Ok, no going back now *gulp* :-\

I think inducing sexual arousal could be a stim for me. I use it to calm myself when anxious and also, more importantly, to focus when I need to concentrate, especially when I’m bored with the activity I need to concentrate upon. I discovered this particular quirk whilst studying for exams as a young teenager!

Another interesting quirk is that I also stim orally. I sucked my thumb until I was 13, at which point I swapped to chewing the insides of my cheeks (a habit that causes me some distress, not the least because it hurts, but I simply can’t stop!). I recently bought a chewable necklace after reading about how they help other autistic people who stim orally. It surprised me just how much relief this provides and I can almost feel the fizz of chemicals released in my system when I use it. Which leads me back to the slightly uncomfortable (well, shameful – courtesy of my misogynistic upbringing!) admission that I love administering oral sex. Not from a sexual point of view, which is the confusing bit, but from a calming point of view. I’ve tried to work out exactly what it is that I love and it’s something to do with the sensation on the roof of my mouth. The movement in and out typically associated with this activity isn’t what I seek, it’s something to do with the fullness and sensation on my soft pallet, if that makes sense? I’ve recently put the question out to my online community of fellow female aspies and found that this is a fairly common autistic thing. The key downside is that I (as well as many others) also have a heightened sense of smell. This is an unfortunate conundrum! Lol

So moving on to how these activities integrate into a sex life for me, involving other people. Nice idea in principle, but in practice, this has been problematic for me. Not only do I need to know someone VERY well to relinquish enough control to facilitate orgasm, but I also intensely dislike change, including change of partner. For these reasons alone, I typically think very carefully before embarking upon a new sexual relationship. It’s also rare that I experience instantaneous sexual attraction towards someone. Sexual attraction, for me, seems to be something that grows as I get to know someone and feel emotionally close to them. Most of my sexual partnerships have arisen out of close and trusted friendships. In this respect I identify as demisexual. Physical features, including gender, are less important to me than the mind of the person, so I also identify with being sapiosexual. This also seems to be a common theme among autistic women.

My husband, who has been my partner for nearly a decade, is also an aspie, so sex for us is usually fairly routined and comfortably predictable, with not too much dialogue or eye contact. He doesn’t like to connect emotionally during sex because he finds it too overwhelming. I, too, can occasionally find it very overwhelming but I enjoy the emotional connection and actively seek it. This is a common area in which aspergers presents itself differently in males and females.

In reading about stimming in autistic children, I noticed that masturbation is a very common stim. Looking back at my earliest diaries, I noticed that I tried to find a way to write about masturbating when I was 9 years old. I didn’t know that there was a word for it, or that so many other people also did it!  I knew it was a private thing, not to be done in public (I assume my suspected aspie mother must have had an awkward conversation with me about it at a younger age?).  In typical aspie fashion, I didn’t have any close female friends with which to talk about such things, and so stumbled along making up my own rules. The first time I intervened during sex and simulated myself whilst with a partner (in my late teens) was met with shock and delight. I was simply frustrated at his nice but ultimately unfulfilling attempts, and wanted to… well… take care of myself. Something I’ve continued to do ever since. I’ve no idea if this has upset partners, I can’t read non-verbal communication and have never thought to ask any. Aspies are also notoriously blunt, so unless someone were to be as straight-to-the-point with me, I wouldn’t think there was a problem. Rather amusingly, I met my match for bluntness in my husband. He once commented, in our early days, that he wanted to be left to ‘do the job’ himself. Needless to say my usual multi-orgasmic experience didn’t materialise, despite an Olympian effort on my husband’s part, and he hasn’t complained again since! 😉 From my perspective, I certainly don’t mind him having a go but, quite honestly, I simply prefer to stimulate myself. Intense pleasure can easily turn into intense pain for me and it’s difficult to explain that to people. And, for those occasions when I just need to quickly calm or stimulate my disordered central nervous system in order to function optimally, I’m thankful to have the skills required ‘in-house’, so to speak! 😉

Next post: A new era of aspie therapy?

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12 Jun ’13: To be or not to be…?

I read an interesting blog earlier about the chameleon-like tendencies autistic women have and it set me thinking about my own role playing in life.

I’m a professional actor/singer.  It used to be a full time job but since becoming a mother (another role for another blog!), I just work weekends in a band.  My husband is a musician and plays in the band with me.  He once told me that when we first started dating, he would feel resentful watching my outgoing, flirtatious onstage manner vanish as soon as we finished the gig and got home.  He eventually realised, however, that I put on this extraverted, overconfident character in much the same way that I put on my stage makeup, and that it was an entirely different persona from the woman I really am.  He no longer expects me to maintain this charade at all times and I, in return, try to remember to bring out this alter ego at times for his amusement!

When I talk about ‘performance’ in a gig situation, I don’t just mean onstage. The ‘performance’ begins the moment I step out of the dressing room to face the public. In that respect it’s not much different from my ‘performance’ in other roles (when I worked in an office environment, for example, or when I go to play dates with my children). The common factor is that I need private time to prepare beforehand and a lot of down time afterwards to decompress. It’s why I’m so obsessive about making sure we have a private dressing room on gigs and that I allow enough time to follow my ritualistic preparation routine. It’s also why I’m usually completely wiped out the following day.

We play at many weddings. Thankfully, the obligatory small talk with the bride usually follows one of a small selection of ‘scripts’, with enough predictability to enable most of my resources to remain focused on maintaining a plausible amount of eye contact. Recognising my client throughout the evening, however, can be troublesome because I also have mild prosopagnosia – a condition whereby I don’t use typical facial cues to recognise people (such as subtle distances between eyes, nose and mouth, etc) but other cues (such as hair, height, build and apparel). This strategy generally works ok but let me down recently at a civil partnership wedding between two men. In the absence of a reliable cue (such as the big white dress!), I struggled to identify either partner the entire evening and had to keep asking bar staff and band members to point them out to me!

As far as onstage performance goes, this is generally high reward for not too much effort. I have a large number of pre-prepared scripts, jokes and carefully rehearsed ad-libs to keep the evening running like clockwork. I’m an aspie who does actually seek connection with people and this is one way I get to obtain that, on mass, on my own ‘safe’ terms. I’ve been doing most of this the same way, successfully, for 10 years. The band is a slickly running outfit with each member playing their part. Incidentally, we reckon many of the members of our band are aspies (or at least have many aspie traits!). I think it’s one of the reasons why we work so well together. We are each obsessed with perfecting our part and all enjoy the buzz of connection as a whole. Just don’t get us started on one of our special interests! 😉

This heavy reliance on role play to function in every day situations is repeated in many other areas of my life. I see where I seek out roles that let me connect, but with clearly defined boundaries and purpose, thus reducing the need for the scary improvised small talk that threatens to expose my weaknesses. Weaknesses that include attention deficit, delayed auditory processing and inability to read non verbal communication. Through these structured interactions, I meet most of my needs for companionship. The connection with and validation of my authentic self is now largely met through closed facebook groups for other adult women with aspergers.

Next post: Let’s talk about…

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Filed under Aspergers Syndrome, Mimicry, Relationships, Role Play, Work

2 Jun ’13: The day after

Yesterday, an 8 month long process of evaluation ended with the news that I have been officially diagnosed with Asperger Syndrome, an Autism Spectrum Disorder.

Looking back, I can now see a lifetime of signs that were missed; from twirling, humming, rigidity and obsessive interests to being bullied, eating disorders, depression and loneliness.

But why bother having an official diagnosis now, at this stage of my life, when a self diagnosis would have been enough?

Because Asperger Syndrome is hereditary.  My daughter is showing some traits and I can’t bear to watch her tumble and fall into the same black holes.  The sad fact remains that the current diagnosis criteria for Autism Spectrum Disorders, worldwide, is wholly based upon research with autistic males, who present very differently from autistic females.  Until more females on the spectrum are diagnosed and prepared to add their voices and experience to the pool of knowledge available, many more (particularly high functioning) autistic girls and women are going to be missed (or misdiagnosed) and continue stumbling blindly along in life wondering why they feel like they are on the wrong planet.

But that’s not the only reason.  I seek confirmation, validation.  Discovering I have Aspergers Syndrome has finally answered all of my questions.  More than half of my life, and a not inconsiderable sum of money, have been given over to extensive research and therapy to find out what is ‘wrong’ with me.  I now know that there is nothing ‘wrong’ with me, I’m simply different.  I perceive the world differently.  My brain is wired differently.  I have difficulties in some areas, gifts in others.  The relief is immense.  As immense as the burden of responsibility I now feel towards my young daughter.

I find myself wondering how different my life would have been if I had been diagnosed as a young child?  Would it have held me back?  Would I have limited myself?  Would I be the same person I am today?  I’m quite proud of many things, especially now I realise how much harder life has been for me compared with the more neurotypical population.  But there has been tremendous cost along the way. 

Do I wish I had been diagnosed as a child? 

Yes.

Next post: To be or not to be…

Other related links

Profile of adult females with Aspergers

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Filed under Aspergers Syndrome, Diagnosis, Relationships