Category Archives: Autism Spectrum Disorder

This Is Autism

I live in the moment.
The immediate.
I stop to smell the roses.
I also smell burning way before anyone else (other than another autistic person, perhaps).
My husband affectionately called me a bloodhound.
I see order in chaos.
My filing system is chaotic.
I cannot work with it in any other way.
I systemise everything in my life.
People talk to me about their problems because I see solutions others often don’t see.
I think outside the box.
I am outside the box.
I form deep connections with people.
My conversation is not frivolous.
I get to the point.
I accept and respect without judgement.
I don’t conform.
I’m a vegetarian who eats fish, and chicken.
Oh and occasionally sweet and sour spare ribs, but only if they haven’t come from gerbils.
I believe everything I’m told.
I’m innocent, despite my experience.
I’m loyal.
I’m focused.
I have high expectations and hold myself to them.
I’m married to an autistic man.
We have an autistic daughter and (we suspect) a neurotypical son.
I love and protect my family with fierce, uncompromising devotion.
If it’s not logical, it doesn’t exist in my world.
Harmony calms me.
The sound of a hoover makes me want to scream.
23 degrees Celsius. No exceptions.
I am autistic.
This is autism.
Autism is me.
I’m not broken.
I don’t want to be fixed.
I’m blessed.

Written as my contribution to This Is Autism flashblog day 18th Nov 2013

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

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

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