Monthly Archives: July 2013

24 Jul ’13: The day after… a generation on

My 4 year old daughter has now officially been diagnosed with High Functioning Autism (Asperger’s Syndrome).

It feels like an eternity since my husband first suggested she might be on the autistic spectrum. I fought with it then, went straight into denial and refused to believe it, but the signs simply wouldn’t go away.

At some point I reached an acceptance. Perhaps it was one meltdown too many? One more day of being driven nuts by her stimming? One more incident where she clearly hadn’t understood a child’s non verbal communication? Or perhaps it was after some innocent exploration of genitals with another 4 year old boy? I think the latter, most likely. Especially when it was blatantly obvious, when they were discovered, that he was ashamed (and therefore realised he shouldn’t have been doing it) and she was blissfully unaware. Genitals, arms, knees… they’re all just interesting body parts to her. It seemed to be the start of my worst nightmares coming true (see my previous blog if you’re wondering why).  A few more similar incidents at her playgroup had me nearly beside myself with panic. It wasn’t panic that she was unsafe, I knew on an intellectual level that it was just innocent curiosity and that playgroup leaders would make sure nothing got out of hand. No, this was a tidal wave of irrational terror that history was repeating itself.

I knew I had to do it. I had to enlighten her to protect her. She needed to grow up understanding her differences, celebrating them and being aware of her unique vulnerabilities. She needed a diagnosis. History was NOT going to be repeated.

The months that followed were hard. Collecting and documenting evidence. Fighting maternal instincts to see only the wonderful greatness in her, but knowing the only way I could protect her was to expose her weaknesses. Put the spotlight on her vulnerabilities. From the moment my daughter was born, my motherly protective instincts, far from being likened to those of a mother hen, have often been likened to those of a lioness guarding her cub. Woe betide anyone who even so much as looked at her wrong. For me to now be the one betraying her by exposing her every little flaw went against everything I felt, everything I wanted for my beautiful, precious angel. But even still, I knew it was better to do now than later. Every year that passed would make it harder. She’s smart. I was smart. She’s already learning to mask her difficulties. I learned to mask my difficulties. She’s already starting to buckle under the strain. The stims were getting worse, the nails were bitten right down and she was starting on the insides of her cheeks, the spinning and humming was getting out of control, her stammer was getting much worse, the repetitive routines were becoming more pronounced and her need to control everything and everyone around her was becoming a huge problem.

The diagnosis process itself was relatively straightforward. From the very first meeting, it was strongly suggested to me that I learn all I can and treat her as though she already had the diagnosis. I think things started to improve. She didn’t seem as stressed. Her social skills improved. I worked tirelessly with her, scaffolding her interactions with her brother and her friends. I took as many opportunities as I could to observe her at playgroup and help her navigate some of the group dynamics. I printed useful information for playgroup leaders and took time to explain to them where she was struggling so they could help her too. I almost convinced myself I’d been mistaken all along, that she wasn’t autistic after all, it had just been my imagination.

Then the final multidisciplinary assessment took place, with the pediatrician, clinical psychologist, speech and language therapist and play therapist who had been conducting individual assessments with her through the previous months. As the session progressed, it became clearer and clearer that they had all come to the same conclusion. Seeing the boxes ticked on the pediatrician’s criteria sheet and hearing her explanation of my darling daughter’s quirks, and how they meet the criteria, sent me into the start of an autistic meltdown. I don’t have meltdowns very often. But I’m now noticing the warning signs… saliva disappears first, followed by increasing loss of vocabulary (I can describe lost words and say what the first letter of each is, but I’ve lost the connection to the actual words themselves), then I go mute, prior to complete shutdown, where I simply can’t process any more input. Voices and background noise merge and cause a stabbing sensation in my head, I can no longer hear anything being said and need to escape to a low sensory environment where I can use my stims to calm my overaroused central nervous system. I couldn’t understand why the meltdown was triggering – I wasn’t afraid of the diagnosis? Or was I? Later in the car park it started to dawn on me. Of course I wasn’t afraid of her having a diagnosis, I was afraid of her having aspergers. I was remembering the darkness of much of my childhood, the abuse, the misunderstandings, the loneliness and the fear. That was everything I didn’t want for my little girl.

Yet again, it was my new aspie community who came to the rescue. A couple of panic posts resulted in some immediate support:

My post:

“Just finished my 4yr old daughter’s final evaluation – high functioning autism/aspergers. So overwhelmed right now. Shaking. Relieved to have it, she can now get support and won’t just be labelled naughty at school, but oh so sad and I don’t know why? Don’t want her to go through all the shit I went through.” 

Some responses:

“Congrats to you both, may her journey be smoother and filled with love, support and understanding. Keep positive” 

“Love & Hugz.. Both times my kids got an autism diagnosis it almost felt like someone punched me in my stomach. Even though in our hearts we know, there is just something so emotional to hear it from the mouth of a professional. I still have the same feeling when I read their evals. It does hurt, it’s okay to be scared.. okay to be worried. Your Mama bear and it’s your job :/ If you need anything feel free to message me.” 

“That’s great that she got a diagnosis! She’ll have access to so much more now and it’ll help give her the tools she needs to have a better opportunity than we had. The most important thing anyone can give her is understanding and no one can give her that better than you. My son is already doing amazing because of the diagnosis which opened up a lot of services. It’s okay to feel sad! You know what it’s like, but she’ll have it so much better because she’ll have you to walk her through it! Hugz!” 

“Their experience is VERY different to how ours was. Be forgiving and gentle of yourselves for a year or so until you start to view all this as ‘just life’ instead of a full-on thing. There are many ways of finding like friends these days instead of randomly leaving them to fend for selves at school. (Hug). “ 

“Really pleased that she’s now eligible for support. Hopefully, she won’t go through even half of what you did as I bet you will be an amazing advocate for her needs”

***

Once again my aspie ‘sisters’ have helped me get things into perspective. Then I realised, beyond everything else, my daughter was going to be ok. She was an Aspie. Aspie females are incredible. They’re strong, loving, honest (to a fault! Lol), loyal. They won’t send you on a date with an asshole just for a laugh, they’ll tell you he’s an asshole! And suddenly I knew what I needed to do. I need to help her find her own equivalent set of Aspie ‘sisters’ to share her life with as she grows. People who would truly ‘get’ her, see how amazing she is and match her in faithfulness, intelligence and authenticity. And with this thought came the realisation that her crazy, creative, quirky, wholesome Aspie genes are probably the best gift in the world I could have given her.

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Filed under Autism Spectrum Disorder, High Functioning Autism, Parenting, Uncategorized

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