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.


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

4 responses to “The gift that is diagnosis

  1. This needs to be required reading for every person who’s ever said “But why would you want to get diagnosed?”


    I was rooting for both of you throughout that post and now I have no words to tell you what I feel. It’s just so overwhelming and stunning. Thank you for writing this.

    (I say that a lot when I run out of words. It may sound trite and/or cliche but I mean it. Thank you).

  2. +1 rooting for you guys. you made me cry.
    When I told my mum about the diagnose, she quietly said “your dad and I thought we did something wrong”
    The diagnose don’t change how I eat food, but its like opening a box and letting the light in.. Realizing who I really ame
    And it is so much easier coping with the rest of the world now that I know more clearly, how I see the world.

    • Yes, I know what you mean. It’s hard to articulate to a non-autistic just what it means to be diagnosed, and to finally understand why everything in life has been the way it has been. It’s a shame so many still have to fight so hard to be evaluated 😦

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