Before I knew I was autistic, I have many memories of agreeing to do things way outside my comfort zone, because I guess I figured I had no excuse not to do them.
Things such as attending parties, going to work social events, dinner parties, group activities – they were what normal people did, and I didn’t feel I had a valid reason to say no, so more often than not I said yes and then had a thoroughly miserable time at whatever the event was, usually feeling awkward and out of my depth, hating everyone around me and hating myself for having failed to find a good excuse to get out of it, or for not being strong enough to just say no without giving a reason.
It used to take me days after each event to recover, after having spent days or weeks before the event dreading it, with my anxiety levels building almost to breaking point.
Now, as a self-aware Aspie, I understand why these occasions were so unbearable for me, and I know that, despite what some people say, there is nothing, absolutely nothing, to be gained by trying to do something outside my comfort zone. “Oh look, I did something outside my comfort zone!” “Oh wow, how do you feel?” “Like shit.” “But it must have been good in some way?” “Nope, can’t think of anything.” In fact I think autistic people don’t have a comfort ‘zone’ so much as a reinforced concrete barrier, through which it is pointless to try and go.
Why would I put myself through that hell, when I could simply, you know, not do it?
So I say no. No to dinner parties, no to group barbecues on the beach, no to New Year’s Eve gatherings. Being self employed now means that work events are a thing of the past thank goodness. I don’t mind eating out with a friend, or even two friends at a push, but they have to be good friends – friends who know my character and accept it. And I don’t have many of those.
I was almost persuaded to attend a big event later this month (a school reunion some 30+ years after we all left school) – and I even bought flights – but several weeks after saying to an eager friend that I would go, I took a look at myself and realised that my anxiety levels were through the roof, my skin was breaking out like a teenager, I was having nightmares about the event, and other aspects of my life were suffering. So this is now a no, too. It’s just not worth it. And to be honest, out of the 200+ people in my year at school, I only wanted to talk to a handful of people anyway. The rest I either had no wish to talk to or hardly knew. And me, as a former alcoholic, in a room with possibly 100 people, almost all of them drinking to excess? No way in hell. A small sacrifice for peace of mind, and a lesson re-learned and reinforced.
POSTSCRIPT: It’s now the day of the event and I know I made the right decision. My skin has cleared up, I’m sleeping better and my anxiety levels are back to normal (which is to say, I have always lived with anxiety but now it’s manageable again). There’s a small part of me that’s a little sad about not getting to see two or three people in particular, but the sadness doesn’t translate into regret. And maybe I’ll get to see them in the future, in an easier situation.
Considering the name of this blog, it’s probably about time I posted something about my autism, otherwise I’ve wasted a damn good domain name.
I have Asperger Syndrome. Sometimes called “Asperger’s Syndrome”, “AS” or just “Asperger’s” (not Assburgers). To some that makes me an “Aspie”. I didn’t use to like that term, it felt like using it made light of my condition, but I’m more relaxed about it these days. So you can pretty much call me what you like. I’ll probably ignore you anyway.
I’ve known since I was in my early to mid teens that I was “different” from my peers in some fairly hard-to-define ways. I had obsessive interests and an amazing attention to detail, and although I was intelligent I had great difficulty understanding others, let alone relating to them in social situations, I couldn’t “read between the lines” or understand body language, I had problems understanding how to approach the opposite sex appropriately, I thought of myself as ugly and awkward, I didn’t really “do” empathy or grief (though I could imitate them), I had bouts of irrational and self-destructive anger usually followed by an anxiety attack, I was very serious (though I enjoyed certain kinds of humour) and I was hyper-sensitive to certain sounds and sensations. All these things are still with me of course. AS doesn’t go away, you just learn to cope and adapt.
During my teens, twenties and early thirties, I had never heard of Asperger Syndrome. Basically because it wasn’t recognised as a condition until 1994. In fact I barely understood what autism was, let alone that I might have some form of it.
Nope, I just thought I was weird. Sometimes I blamed my genetic heritage, sometimes I blamed my home environment, sometimes I blamed my schooling (inevitably, I was bullied), sometimes I didn’t blame anyone or anything. But the obsessions, emotional coldness and difficulties relating to people wouldn’t go away, and my gradually increasing alcohol intake didn’t help me to understand myself any better. I also suffered increasingly from bouts of depression, and when you couple all this with being in a long term difficult relationship, I was having a pretty miserable time of it.
In my mid thirties I started reading up on personality disorders, since by that time I was becoming more and more convinced that there must be something definable that was wrong with me, even though I had no idea what it might be. The internet had arrived by this point, and so I did some online tests and talked with some people on forums. I didn’t get anything conclusive from these tests, but then I followed a link or someone’s suggestion, I forget which, and did an autism test. I was almost off the scale. I found and did a couple of other autism & Asperger’s tests, and again the results were emphatic – it was extremely likely that I was autistic, specifically Asperger Syndrome.
No sooner had I started to absorb this enlightening information than I had a reason to use it as a way of getting out of trouble. I had a meltdown at work due to the inflexibility, jobsworth-ness and general asshattery of a colleague, and I was in big trouble. Sent to the director, I decided to use the only piece of ammunition I had, and I said that I had Asperger’s and that it caused me to have trouble containing my reactions appropriately at times. This got me off the hook, life got back to normal and in time all my research and enlightenment kind of faded into the background. It’s like I knew that I probably had AS, but I was scared to consciously embrace it, because I didn’t want to be different. Looking back it seems like it was too much to handle, with all the other pain in my life. Dumb, really. I should have stuck with it and tried to work out a better understanding of myself. I blame the booze.
So after several years of not really thinking about AS, and all kinds of other life events (emigration, giving up alcohol, counselling, relationship breakup, a subarachnoid haemorrhage that nearly killed me, new relationship, etc etc), I was triggered into thinking about Asperger Syndrome again more recently by a friend – or rather the difficulty I was having interacting sympathetically with this friend.
Something went ‘click’ in my head and I thought “so this must be what AS is all about”. I decided it was time to be honest with myself, learn what I could about whatever it was I had, and respect myself by embracing it.
Now it was 2015 and there were more online tests available. I did them all. Every single time, the result was “Asperger Syndrome” or “High Functioning Autism”. And every time I was well into the autistic range of results, never borderline.
Lots more clicks in my head. So this was why I couldn’t tolerate being in the same job for more than two or three years without losing patience with the people I worked with. This was why I literally couldn’t see things from other people’s point of view – I had a severely stunted “theory of mind“. This was why I was so hyper-sensitive to light touch and could hear a mosquito at 10 metres. This was why I “stimmed“, in my case picking at skin and pulling eyelashes, and moving my fingers in patterns. This was why I was so clueless when it came to the opposite sex. This was why I always hated eye contact (I can do it when I have to but it leaves me feeling violated). This was why, when I had a meltdown due to an inability to cope with someone’s behaviour or attitude, I could never face them again and so I simply cut them out of my life. This was why, in social situations, I always felt like I was watching a foreign language film without subtitles. This was why I got obsessed with certain things to the exclusion of everything else. This was why I only felt truly myself when alone. Let’s face it, not understanding all “this” was probably also why I got depressed and why I had spent most of my twenties and thirties getting drunk most evenings.
So now we come to the present day. My autism is still officially self-diagnosed – though I’ve talked to some knowledgable people about it, including my counsellor, I haven’t been to a specialist and undergone tests to get an official diagnosis. Sometimes I think I’d like to do that, to get a final confirmation of what I already know. Othertimes I can’t be bothered – why bother when I do already know? What would I gain from it? Nothing that I can think of. I’m certainly not looking for special treatment.
This recent understanding and recognition has already changed my life in a very significant way – I finally realised that I would never, ever find a job that I would stick to without getting terminally pissed off with colleagues after a year or two, so why put myself through that any more? So last year I went self-employed and am now a busy independent IT consultant. Who says autistic people can’t succeed in life?
I’ve also found more, what can I call it, inner peace. That’s probably the best way to describe it. Now that I know why I am like I am, and I know there is no cure, I have no choice but to accept it, and accept everything that goes with it. So I do, and I live my life accordingly.
For example, I know that I will always hate and regret going to parties, so I don’t go to them any more. I know that truly understanding (not just intellectualising) someone else’s point of view will always be severely challenging, and so when it comes to my girlfriend, I make an extra effort to imagine I was in her shoes when I’m trying to understand her reasoning and emotions. It’s not easy but I’ve made some progress, which I don’t think I would have been able to make if I didn’t fully understand what was going on in my head.
I also know that I tend to neglect friendships to the point of losing them, so I simply don’t prioritise making friends any more. To be honest my relationship with my girlfriend gives me pretty much all the personal interaction I need, and I don’t miss having more friends. I have one or two people I feel quite close to, some acquaintances who I get on fine with, and people who have been friends at various points in my life and remain as social media friends, and I find that’s enough. I don’t feel lonely.
There have been two further side-benefits of this new-found self-awareness, and I can connect both of them with the easing of stress and angst that my self-diagnosis has given me – a few months ago I gave up the antidepressants I had been taking for several years, and then a little more recently I gave up smoking, replacing it with vaping.
So, as Freddie Mercury would say, there you have it. I’m not slightly mad (sorry again Freddie), I’m just autistic. And I don’t think I mind, either, most of the time. It is what it is, and I can’t change it, so I may as well get comfortable with it. It feels settling to be able to give my weirdness a name. I’m not one of these “autistic people are better” would-be activists, and I don’t really care either way about the controversial organisation Autism Speaks, which seems to generate so much heated discussion in the autistic community. In fact I don’t really think of myself as part of a ‘community’. I just am who I am. And that’s kind of OK.
Today I came across an article on the BBC News website, discussing the vivid hallucinatory dreams that one person experienced while taking Lariam tablets as a prevention against Malaria during a trip in Africa.
This got me thinking back to an African road trip I had done through Botswana and Zimbabwe way back in 1994. Like the article’s author, I took Lariam (the brand name for the drug Mefloquine) for a few weeks before, during and after my trip.
I didn’t (to the best of my memory) experience any vivid dreams, but I do remember a 2 day period during the trip when I felt extremely depressed and nervous. At the time I put it down to a bit of homesickness and after it had passed I forgot about it.
But the BBC article author’s experience with depression, paranoia and anxiety after his trip piqued my interest, and so I did a little googling. Guess what I found:
- Mefloquine at Drugs.com
- Mefloquine (Wikipedia)
- Mefloquine and Psychiatric Side Effects
- Brain-damaging Side Effects Force Army to Pull Mefloquine
- ‘It’s not a benign drug – it has ruined my life’
- FDA Finally Recognizes Mefloquine’s Troublesome Side Effects
All these sources are agreed on two things:
- Lariam is proven to be a cause of depression and anxiety (among other equally serious issues such as psychosis and suicide ideation)
- The effects of Lariam can persist for months and even years after the patient stops taking it and may in some cases be permanent.
My own experiences of depression (apart from the brief episode while on my trip) started a year or two later, as far as I can recall. It wasn’t as if I woke up one day and suddenly found I was depressed – it crept up on me slowly and insidiously until there came a point where I realized that something was wrong.
My family doctor was not particularly helpful and simply prescribed a few weeks worth of tricyclic antidepressants, which had the effect of numbing my feelings, both positive and negative, and in the end I discontinued them, figuring that I would get over it in my own good time.
During the next few years I didn’t connect my state of mind with depression, though my drinking steadily increased and if I look back there’s absolutely no doubt that I was depressed. In 2005 I sought help from a counsellor at my family doctor’s clinic, and they suggested I attend some cognitive behavioural therapy sessions. I attended a few but wasn’t convinced by their conclusion – that I was suffering from low self-esteem.
In the end I had to stop the sessions due to my plans to emigrate to Malta finally bearing fruit.
And to cut a long story short, it wasn’t until 2009, in Malta, that I discussed my depression and alcohol abuse with an understanding doctor, got medication that actually helped, gave up drinking, and started 3 years of weekly counselling sessions that were ultimately my salvation.
Now, looking back on the various stages of my life, the places I was educated, the places I’ve worked, the towns I’ve lived in, and the state of mind that prevailed during each of those stages, I can see that before using Lariam I had some minor anxiety issues and the occasional brief bout of depression, whereas after that period my depression gradually grew until it effectively controlled my life for many years before I finally got the right kind of assistance and support.
Now, I will never be able to prove that taking that course of Lariam was directly responsible for my depression and anxiety over the last 20 years, but it certainly seems possible that taking Lariam could have been a factor in worsening my symptoms, even if it wasn’t the sole cause.
Now, thankfully, Lariam is hardly ever prescribed for malaria prevention – there are far better drugs available. But as far as I know it still isn’t actually banned worldwide. And if you’re ever advised to take it, I would seriously recommend that you refuse. It could change your life, permanently, in ways that you really, really don’t want.
And where does this leave me? Well, where I was before, I guess. I suffer from depression and anxiety, that’s a fact of my life that I can’t change. I keep both controlled reasonably well, most of the time, using medication and ways of coping learned during my counselling sessions.
Does the thought that my depression may have been prevented or lessened if I hadn’t taken Lariam make me angry? Well, yes, up to a point, but what’s the point in being angry at something in the past that you can’t go back and change? Being angry at things has always been one of my depressive symptoms and I can do without even more of it.
This is a follow-up to my post from two years ago, “Dealt a Blow“.
So, having had the subarachnoid haemorrhage in 2011 and a number of follow-up interventions in 2012 and 2013, it’s time for me to bring you up to date with what the hell is going on inside my skull.
My previous post got as far as me not looking forward to a further angiogram after the one in March 2013 showed that there was still some blood flowing inside my coiled aneurysm after having two coilings in 2011 and 2012.
Well, I flew back to London to get a further MRA in September 2013, and towards the end of the year got the results which said that I would have to have ANOTHER coiling via angiogram (my third), since the aneurysm wasn’t sufficiently blocked off. So I jetted off to London again in January 2014 (this time with girlfriend in tow) and underwent the coiling process via angiogram (under general anaesthetic) at what was becoming my regular haunt, the National Hospital for Neurology and Neurosurgery in Bloomsbury.
It was around this time that I looked back to all the medical interventions I had since my original haemorrhage, wondering why it was proving so difficult to block the aneurysm completely. I reluctantly decided that I simply couldn’t risk training in the gym any more, no matter how light the regime. It seemed entirely possible that too much training was raising my blood pressure and preventing the total blocking-off of the aneurysm.
After I got home I learned that I would no longer be able to have follow-up MRA scans in the UK, I would have to have them in Malta. No problem, I thought, and called Malta’s national hospital to arrange one. Three weeks of complex negotiations, phone-call hopscotch and red tape cutting later, I finally got myself onto the patient list of a Maltese neurological consultant and had my first consultation in February 2014. They scheduled an MRA for July to review the most recent coiling.
This MRA in July 2014 was, believe it or not, the first time I had treatment in Malta since the original haemorrhage back in 2011. The results came through quite quickly (quicker than in the UK), and this time, FINALLY, it was good news. When I met my consultant in August 2014 she said that the aneurysm appeared to be totally blocked off, though they would need to send the images to the NHNN in London to get a second opinion.
This was done and in March 2015 I received my first ever official ‘All Clear’. The NHNN agreed that the MRA showed there was no blood flow in the aneurysm – the blood flow in the vessels of my brain were bypassing it completely. I would need annual MRAs to check all was still good, but no more angiograms would be on the immediate horizon.
You can imagine the level of relief I felt. Since 2011 during my initial recovery, the aneurysm had felt like a huge shadow stalking my every step through life, and now that has been lifted.
I still bear the invisible scars of the subarachnoid haemorrhage, like a lot of SAH survivors. My eyes get tired and vision gets blurry much more frequently, and I have a much harder time with bright lights and glare. My medium and long term memory is nowhere near as good as it used to be. I get dizzy spells. Once in a while I suffer a day or two of extreme physical fatigue when I can hardly support my own head. And of course I have to avoid heavy lifting and anything which is likely to increase my blood pressure. But I’m still here, and with this prognosis I’m likely to be still here for some time to come. That’s what’s important.