“On the spectrum”

​Wow. How things change. I got a notification through on my About and it prompted me to re-read it for the first time in ages. When I first started this blog, I felt very awkward about claiming the words “autistic” and “Aspergers”. I’d done a lot of reading and thinking and I still had a long way to go. As with the chronic back pain, I wasn’t immediately ready to say “I have a disability”, “I have a disorder”. Partly because it made me feel more vulnerable to admit it, even to myself. Partly because I was asking myself “how much of an impact does this have on me?”. That was always the crucial diagnostic question. I have autistic traits coming out of my ears (not the one that says “no metaphors”, obviously) but do they have an appreciable effect on my life? This past year’s been a rollercoaster and has forced me to see how obviously the answer is yes and always has been. I’m trying to get up the nerve to complete my referral form to ask a doctor if they agree with me. I’m just about ready for that step. 

So, a little less than two years ago, I chose to say I’m “on the autism spectrum ” in my About section. Since then, that term has also come to piss me off. I don’t know if you saw Amanda Holden agreeing with Jules Robertson that she might be “on the autism spectrum” but by the time I saw that it wound me up. How much did it wind me up? Here’s an extract from an email I sent my mum on 30th August 2016! 

“The “trendy” thing is something that bothers me generally and especially in terms of disclosure. It seems like the term “autism spectrum” has been co-opted so that people are being led to believe absolutely everyone is somewhere on the spectrum when it’s a clinical term for people who actually meet the diagnostic criteria and reflects the differences between each person who meets the criteria and the next and has nothing to do with neurotypical people at all. I was really annoyed during autism awareness week when I saw reports that some celeb blithely said she’s “on the spectrum”. I just watched the interview (http://www.itv.com/lorraine/hot-topics/kathy-lette-and-son-on-autism-awareness-week) and OH MY GOD YOU STUPID WOMAN! If you had autism you would:
– have taken your pre-interview research, dived into doing huge amounts of other research on the subject and read at least one full book by now and done loads of tests and you’d still be second guessing yourself and testing your theory in 100 different ways (it’s not just me – apparently whether people do this this could practically be one of the diagnostic questions for adults with autism)
– actually understand what school was like for him because you’d have had your own set of problems
– challenge the argument that the biggest barrier to work comes down to being too blunt and suggest that if the only narrative neurotypical people hear on the subject is some Aussie (who is a well known loud mouth herself) saying that it all comes down to being too blunt, it hurts autistic people who have numerous impairments that affect them in the workplace and need accomodations and, actually, adults with Aspergers remain blunt and blurt out odd random stuff but do become more discreet than they were as children and don’t all routinely go around insulting colleagues’ appearance (especially when we can blurt out our random thoughts on twitter to people who find them amusing) and the remaining problems with honesty and uninhibited speech include more subtle and complex elements than that and it’s unhelpful to suggest otherwise.
– your facial expressions wouldn’t have become something people comment on because of too much cosmetic surgery and botox. They’d have been commenting long before that
*cough*”

Yeah…heh heh…

So although it’s still technically correct to say “on the autism spectrum”, I’m not so keen on the term any more and I think it’s probably time I changed that ‘About’ section!

Getting someone in

Quite a while back I saw this article by Susan Dunne and was so struck by how well it described me that I tweeted it. That may have been my first public acknowledgement of my suspicion that I have Aspergers (no longer such a “suspicion” these days), although possibly I tweeted it without comment. Possibly I said “This”. I don’t remember. But it had the unexpected benefit that someone I’ve known on twitter for a few years replied that it absolutely fit him too. I’d had no idea he’s an aspie and I’ve been careful not to lean on him in any way since I found out because that wouldn’t be fair but knowing that someone else I “know” (in the twitter sense) gets it does help a little.

There was nothing in the article that didn’t make me think “God, yes” but the part I was really struck by was this reflection of my own private shame:
“I live in a house where the lights, fridge, cooker and washing machine have packed up one by one but I lack the skills to sort it out, and I’d rather live in darkness than have someone I don’t know in my personal space”
God, yes. I have managed to replace white goods (eventually, in some cases). But household repairs are a different matter. And the longer items of disrepair are left, the more humiliating it becomes to let anyone see them, including the person I eventually get in to make the repairs.

Today it was a plumber. My bathroom suite needs to be replaced. The toilet hasn’t worked for at least three years. Probably four. The plumber would know because he’s the one that stopped it running the last time he was in. (I do have a downstairs toilet by the way!) The taps…ugh. The suite and taps probably date to the 1950s. Someone replaced the washer to the cold tap on the sink maybe four years ago and it was a pig of a job because the tap was a limescaled up bell tap. In no time at all it started dripping again. Three years ago, almost to the day (thanks Amazon) I bought some little thingies meant to descale tap spouts but they wouldn’t work because the dripping tap dripped into the little rubber bag. So, three years ago almost to the day, I definitely should’ve got someone in to fix the tap. It’s got to be at least a year since the drip became a flow. It could even be more like two years. I don’t know. This summer it got even worse so it’s flowing full bore all the time. And a water meter will be installed soon and the house next door but one isn’t vacant anymore and they’re having “mysterious” problems with water pressure…

Meanwhile, the bath is a mouldy limescaled mess that I’m not physically strong enough to get clean (if it’s possible at all at this point) and the hot tap on that has been dribbling around the base of it for at least four years. To be fair to me, the bath and sink are old ceramic. The sink would almost certainly crack worse than it currently is if I just tried to replace the taps and money has been a serious problem when it comes to replacing the suite. Susan Dunne’s very next comment refers to financial troubles and, well, you already know that’s been a problem for me. But it doesn’t change the fact that getting workmen in is awful.

At least the plumber wasn’t a total stranger but if he remembers last time he was here, he’ll remember replacing a pipe which a different plumber had literally smashed by stamping on it when it froze during bad weather…about 18 months previously. I’d been letting shower water flow straight out onto the flat roof of the kitchen for 18 months. I just couldn’t pick up the phone to get someone out to fix it. I’d ultimately called him out because the boiler had broken and I had no heating, not because I’d finally found it in me to ring about the pipe. What did he see as he arrived today? A wheelie bin missing its lid (if only I’d completed the Amazon order for a replacement hinge pin before the other one gave up trying to do the job of two several months later and now I’d have to make a phone call so…no), a gas meter box hanging open with a broken latch (yes. You can close it. No. It wasn’t the wind this morning that blew it open – it was the wind weeks ago), guttering full of weeds, a driveway in desperate need of replacing, a front door somehow seized shut by hot weather, a back gate I had to smash panels off when it got stuck this summer after a storm and I couldn’t use the front door (if only I’d got someone in to replace the hinges at some point in the last few years…). Inside? Clutter. Everywhere. Except on the desk because I made a special effort this morning to clear it, dealing with my nerves over having someone in the house through this activity.

I can’t explain that I do the best I can. That he should’ve seen it a year ago before I discovered chore apps. I can’t explain that it’s humiliating to let anyone see my house or how horrified I am that his tiler is going to need to take a look before he can give a firm quote. I can’t explain to this person who knows what I do for a living why I’m capable of that and not this. I can’t explain any of it. I can’t explain that he’s seeing a side of me that so many people don’t and probably never will. So I smile. I pretend it’s not excruciating for me to have him in my house and to think of the disruption to come and I pretend I’m not dying inside as I see how I live through his eyes. And I know that each job until the very last is done will involve the same kind of discomfort and I don’t want to do it. I just want to hide and put up with the things that need doing a little longer.

Go. Home.

Boss: I’m thinking of closing the office at 4.30. What do you say
Me: Umm…erm…but…why?
Boss: It’s a bank holiday weekend!
Me: Ummm…
Boss: And it’s too hot for work! We should all go home early!
Me: but…I’ve…
Boss: come on! You need to!
Me: well…I suppose I could go pick up my prescription
Boss: great!
Boss to the secretaries next door: right! That’s it! We’re closing at 4.30!
Me to the secretaries next door: did your early start to the weekend just hinge on my agreement to it?? Man…glad I said yes now…

So, there’s me. Now I’m confused, even though I recognise his gesture for the nice thing it’s meant to be. I mean, theoretically I could stay until 5.45, which was my original plan but I recognised his tone. It was the same one he used at 1pm on Christmas Eve the year before last. Just before we mysteriously had a power cut while I was in the loo and had therefore left my office, home to our fuse box, empty and vulnerable to a boss who was determined I wasn’t going to stay for a couple more hours. It may have been a coincidence but it was one hell of a coincidence that only our suite lost power while I was in the loo… It amuses me to think he did it. Anyway, he’s stubborn over this stuff.

I have 30 minutes to fill and I’ve totally lost my thread because he’s just interrupted me and knocked my timeline out. His kind gesture and insistence that I need an early finish actually causes new stress, albeit a relatively small amount. I can’t get back to what I was doing so I start on admin that’s been such a low priority for so long that it’s become an emergency. I’d intended to do this at the weekend. I start in on the files on my secretary’s desk (she wasn’t in) while someone else natters away to me. At 4.30, I’m just starting the last one in the stack. “Yes! I know it’s only the first stack and there’s more in the office but god damn, I’m going to get through this stack,” is my mindset. Check the lease, fill out the form, put duplicate docs in a pile for shredding and then the stack is ready for my secretary to finish up closing. 4.36pm…

Boss: Go. Home.
Me: nearly
Boss: Go. Home.
Me: I’m on the last one!
Boss: It’s the weekend and it’s too bloody hot!
Me: nearly….

He wanders off and I finish with a sense of relief, go back to my own desk, hastily pile all the papers I was looking at before he disrupted the plan together on my desk, shut down my computer, start the long process of getting my stuff together (which always takes me significantly longer than it takes anyone else. If I’m not being hassled to “Go. Home.” I’ll spend 10 mins going through my leaving routine…no…no, it doesn’t help my stress levels to be pushed to hurry up my leaving routine at all but I’ve learned that if he sees the visible signs of my packing up, he won’t necessarily stick around to stand over me and physically push me out the door so I can usually do it my way in my own time).

Me: *stuffing cardigan in bag*
Boss: Go. …Oh…Good. Have a weekend for once
Me: Umm…
Then we spend 10 minutes talking about something else before he goes, trusting I will “Go. Home.” once I’ve switched off the printers and stuff.

He was happy to leave early himself. And while I was doing my admin another solicitor who also works a lot of overtime plonked himself down at the next empty secretarial desk to slump and sweat gently (ok, profusely, but I like the guy so let’s pretend it was gently) until 4.30. And the secretaries who were there were thrilled. And I’d been having trouble focusing on what I was trying to do before his original interruption anyway (because pain) but, still, I had a plan in my head and ended up having to change direction for what little remained of the working day and then carry out the rest of my plan an hour early. Closing early today wasn’t all about me but pushing me out the door early was. I also realised on my way home that he hadn’t even come in to say the usual month end “billz please” to me today. He’s actively trying to find ways to help – he told me so himself a week ago when he inadvertently became the final link in the chain to another meltdown. But I’m hard to help and things that are meant to relieve stress might actually increase it. Things like this change in the order of the day are things I usually accommodate without really identifying why I’m now feeling off balance but if he’d done this a week ago it would have felt like a much bigger deal because of where my baseline was last Friday.

I’m trying to identify what actually would help (and what hinders and when it’s to a mild degree and when it’s a big deal) before I decide how much to explain – whether to try to find some way of explaining how to help without full disclosure. It’s not easy though. This is the kind of thing that’s hard to explain and I wouldn’t try I don’t think but I’m not very good at judging how much information is necessary. I am the person who studied social security law, aced it and still rang the DWP for guidance to make sure I completed my application for incapacity benefit fully and accurately, without understating or overstating my problems when I was unable to work, after all! I’ve worked out that I don’t need to say anything at all about some things – I’m not about to start going on about personal relationships and even sensory issues aren’t something he really needs to know because I muddle my way around them – he doesn’t really need to know why I can’t hear him in a crowded room, repeatedly bounce off the walls, door frames and furniture in my own office, disappear inside myself at work meals etc – but there’s other things that seem small but are maybe examples that explain things better. I don’t know.

Thinking it over is no less urgent though. Although I managed ok today, Wednesday was another bad day and I expect my boss heard about one incident. His son (who works for us and is both nice and diligent) rang me just as I was fighting against a sudden wave of debilitating fatigue after realising how urgent that admin had become. He had a perfectly legitimate reason for calling but it was also four minutes before lunch and the call would take at least 15 minutes and I couldn’t lose my lunch routine. Not then, feeling how I felt. It’s hard enough at the best of times. So I stammered and stuttered on the edge of tears. He said he was just calling to schedule a time to talk about a file I’d transferred over but I was desperately saying “I don’t know when”. I knew I had other calls to make that afternoon. He couldn’t do Friday, I had my Thursday supermarket shop rigidly fixed in my head (and knew I couldn’t take another day off deviating from plan and getting sucked into the office), Monday is a bank holiday, Tuesday is my day off and I have an appointment scheduled. Everything whirled in my head and I have absolutely no idea what we ended up agreeing, if anything. I raced outside as soon as he hung up and sat, shaking, on the roof. I’m sure he’ll tell his dad, out of concern if nothing else. He may well have done already. I didn’t intend or want to be obstructive or rude but I just couldn’t cope right then. I think that’s what probably came across. So I’m not assuming I’m out of the woods of all this stress just because today was a bit better. And I do still have questions to answer. I just need to work through it all myself first.

Summer. But it’s not the tarmac that’s melting down

On the whole, I think my experience of meltdowns and shutdowns is probably quite mild. This post is mostly about meltdowns because that’s where I’m at right now but I usually have far more partial or mild shutdowns than meltdowns as an immediate response to sensory, cognitive or emotional overload. Even when they happen at home meltdowns still leave me feeling uncomfortable, embarrassed. There’s usually a lot of build up to a meltdown and for a while I’m able to keep a lid on things until I’m alone, where the rising pressure shows up in pacing, talking/shouting to myself and also sometimes a sudden short burst of tweets related to the cause of the pressure that seem to come from nowhere and that I regret afterwards (around about the time people reply and I remember I’ve just had an outburst in front of hundreds of people). The tweeting thing happens when I’m absolutely at breaking point, whereas pacing and talking out loud are things I frequently do but do in a different way as the pressure builds. The other thing that can happen during this period is my having and trying to fight off a series of shutdowns, especially at work where I’m afraid to give in and slide under completely so I try to force myself not to but I can’t function. If the cause of the pressure doesn’t go away or if more factors are added on top, a meltdown may happen. If I get to the point where I’m being snappy at work and expecting others to mind read me, forget “may”. It’s almost inevitable at that point.

The causes are the kinds of things you might expect and keep adding on top of each other. Although sensory overload doesn’t cause meltdowns on its own (but does cause shutdowns on its own), it can be a factor in one, especially when the overload is noise. Disruptions to routine send me off kilter. Interruptions. Not being allowed to follow my plans. Questions about my emotional state. Being told other people’s assumptions about how I am and what I need when I can’t communicate that they’re wrong. When other people are throwing their emotions about. When I don’t understand what’s going on or what’s expected of me. If I meltdown there’s a very good chance that I’ve repeatedly asked to be left alone (why don’t people listen when that’s my answer to their asking me what I need?) or for the source of overwhelming confusion re emotions/communication to be explained to me (ranting at me that I’m being deliberately difficult, manipulative, crazy, stupid doesn’t help).

Immediately before and during the longer build up to a meltdown it’s very likely that I’ve at least thought things like: what does any of that mean? Why are you telling me that? Why are you asking me that? Why do you think I’d know the answer/care/find that helpful? Why are you making assumptions about me? You don’t know me. Oh my god, mind your own business. Back off. Too many people. That’s a horrible thing to say. What have I done wrong this time? Why won’t you explain what you expect from me? Why won’t you/everyone just leave me alone? Stop pushing at me. What am I feeling? Why can’t I do anything right? I’m so weird. I feel trapped. Stop talking. Stop interrupting my work. Stop disrupting me. What am I meant to be doing right now? What was I doing before I was interrupted? Why can’t I ever get anything finished? I’m so stupid. Why won’t everyone stop pestering me? Too many demands. I’ve used up all my talking ability already today. I had a plan for today. I had a plan for this morning. I had a plan for this hour.

There’s also, unfortunately, one particular person at work who is a trigger. I seem to have an actual phobia of her. It’s not dislike. It’s a desperate need to escape from her at all times. She triggers my fight or flight response but it’s always flight with me. Other people don’t like her and are horrible behind her back but since I realised that my issues with her are completely different I’ve worked hard at adopting a front of polite but extremely busy solicitor with her. Much of the time it works well because it satisfies the basic requirements of niceness while enabling me to escape quickly (literally – hurrying away makes me feel I’ve escaped), although I don’t always have the energy to remember during things like hallway and kitchen encounters and might go blank and unresponsive.

This month I spent two weeks covering her boss’ work. You can imagine how that turned out. When pushed into close quarters in circumstances where she’s actively doing things that are causing me to head towards meltdown on top of my own basic fear of her…It was like a runaway train. I tried. I really did but it was like she was digging her fingers into a gaping open wound on me every day (which a first aider with a very poor grasp of English in London once actually did to me – she only stopped when I pulled my jumper off and sat there in my bra to demonstrate my unbroken arm with a massive, wide gash in it, exactly where she’d been digging her fingers in). I tried my absolute best because I know that meanness is meanness no matter what the reason but there’s only so far I can stretch myself before I break. It was the same last year. It’s been a week since her boss came back and I realised yesterday that I still couldn’t even look up from the floor when we crossed paths in the corridor and she said something to me.

There might be shaking, shouting, tears, rocking and (mild) headbanging when I meltdown. Sometimes I seem completely cold and the only real signs I’m melting down are my frantic movement and the fact that I’m saying things I wouldn’t say if I had control of myself. If I’m talking or shouting, it’s instinctive and not consciously filtered. I’ve been trying hard to remember so I can be honest here. When I lose control in public it’s about the immediate “threats” in front of me. They’re not the only cause if there’s been a long build up but anything I say during the meltdown is going to be related to the immediate threats. I’m not deliberately mean because my entire focus is on making the cause of the pressure stop, only I don’t have the ability to actually do whatever I’m meant to do to do that at that time. So I’m very unlikely to say horrible things about someone’s personality but I can’t rule out saying things that are upsetting. At the time, I don’t know or care if it’s upsetting because everything is about me and protecting myself from the things that are affecting me.

The best way I can describe it is a burst of frantic, barely coherent energy. It builds and builds until it’s released. I need to escape and hide but that’s often not possible. Being somewhere like work where I can’t run (although I’ve been so far gone that I have literally run away down the corridor a couple of times) is really hard. I might go outside on the roof and sit in stillness to escape the approaching sense of meltdown or hide out in the toilet. I’ve always been one for running away. Or walking as quickly as possible away, at least, given my back problems. I need to escape and then hide. At home I’ll often end up sobbing and curl myself up small as if I can disappear completely if I can just make myself small enough. I feel like I’m shrinking, like I’m drawing myself in. Sometimes I sit on the dark staircase, hunched over my knees. Even during a meltdown at home when I’m alone there’s a voice in my head telling me I’m being dramatic and attention seeking. There’s a part of me watching myself but it can’t actually stop what’s happening.

Afterwards, I feel embarrassed and ashamed but I also feel relief. The storm has passed and I can function again. Often I feel cold and shivery afterwards. Often I lose my appetite so it’s not unusual for me to meltdown very soon after getting home from work and then go without dinner because I can’t make myself eat. Eventually I snack instead. I want to pretend nothing happened around people who either saw the meltdown or the build up to it. Because hardly anyone knows it’s an autistic meltdown, I might try to shrug or laugh it off as having had a “hissy fit” or a “shit fit” but I’d rather completely pretend it didn’t happen. Asking me if I’m ok after seeing me in meltdown or pre-meltdown is a pretty good way to start me back on the path again.

If someone sees something is going wrong in the build up to a meltdown or after one has happened and tries to help, they invariably make matters worse from my immediate perspective. To be fair, my boss doesn’t know about the Aspergers. I’m beginning to think I have to tell him, even though I don’t have a formal diagnosis, because what works for other people is pretty catastrophic for me. On Friday he came to my office at the end of a truly awful day from the point of view of aspie me and promptly made things worse by trying to help. He’s worried. He’s noticed I’m struggling. What would help? What’s going wrong? Would I feel less overwhelmed if my office was neater? I panicked. His questions caught me completely off guard and I couldn’t process what was happening. I wanted to escape but I couldn’t. I was almost in tears with the pressure and the frustration of not being able to communicate what’s going wrong and why and, in particular what went wrong during the two weeks of holiday cover earlier in the month or even to identify them in that moment. I couldn’t answer his questions. I didn’t even know the answers, even though I do know the answers. I got the usual unfiltered “I just need to be left alone” out but I couldn’t engage in an actual discussion. I was too exhausted and too close to the edge of another meltdown already and to top it off I needed to leave work more or less on time to get my cats to the vet (added stress – my plan for that was at risk now and I was worried about their screening blood tests because they’re elderly, although they hardly act it). I couldn’t accept his attempt at helping. By talking about my office he came across as trying to add even more work on top of the mountain I’m already struggling with and drawing attention to an aspie problem (namely if I see the mess at all, I don’t recognise it as something that needs to be dealt with each time I do see it and I only care about it at all anyway because it draws criticism from him).

I couldn’t have explained what’s going wrong, why and what I need without using the words autism and Aspergers anyway. I don’t know if I’m ready for that conversation. Unfortunately, I don’t think I have a choice now. I think the choice has probably been taken away by my own inability to cope. I’ve had two meltdowns in two weeks. That’s not normal for me. There’s been a horrible day to day edge for months now. A sense of teetering over a brink. And I haven’t been able to fix it. You’ll notice I’ve said other people’s actions cause meltdowns. That’s the kind of thing that apparently really pisses neurotypicals off. To be clear, I have meltdowns because I can’t handle a lot of things people do. Those things are attacks to me at a level I don’t have control over. It’s not the fault of people who don’t know what’s happening. It just feels to me like it is.

I do know I’m not reasonable by NT standards because I know common NT complaints about Aspies in the workplace. On the other hand I feel the same way about a lot of NT behaviour in the office…like when people are whatsapping during working hours because someone in their group is bitching about her payrise and then all sit down to lunch with the boss like they haven’t wasted a large portion of the morning having secret conversations about his decision. That kind of thing. Just as I manage my pain usually, I managed my Aspergers in the office in the past. I played to my strengths and accommodated my weaknesses to a considerable degree. My strengths are so very strong that other people could ignore my weaknesses to some degree or chalk them up to a certain level of precociousness or the eccentricity they expect from genius. The reality is I find my weaknesses hard to cope with and have been relieved that most of the time they go unchallenged. Not anymore and I’ve got to face it now.

Although it’s been raised nicely, the bottom line is my boss raised performance issues with me. I can’t ignore that. My mum and I discussed it last year and I said unless my job became unmanageable, I didn’t want them to know. It seems like I’m there. Even without a formal diagnosis. Maybe I have to start that process now but it could take anywhere from one to three years on the NHS, from what I’ve gathered. I wish I didn’t have to say anything at all, much less without a piece of paper saying doctors agree but I don’t think I’ve got a choice now. I don’t know what’s worse. Saying the words or knowing I don’t have a plan of action to make this better. I don’t even know where to start right now.

The honesty problem

Yesterday evening, a young woman came to my door. A complete stranger. I don’t know why I answered. I usually don’t but I did this time. Despite what was going through my head, I used a polite and friendly tone once it became clear she wasn’t about to accuse me of having been in an accident involving her…This is a very very close approximation of what happened.

She opened with “is that your car?”
[That being the car sat on my driveway? Uhhh] “Yesss?”
“Is it broken down?”
“No…” [how is this any of your business??]
“It’s always sat in the same place on your driveway. I thought it was broken down”
[Who the fuck are you??] “No. I just don’t use it to get to work that’s all”
“But it’s always in the same place”
“Maybe I’m good at parking it that way” *fake laugh*
“I want to buy your car”
[WHAT THE FUCK?] “I don’t want to sell it”
“I need a car because I’m pregnant and I saw your car was broken down and thought you’d want to sell it”
“It’s not broken down. It’s fine. I like my car and I don’t want to sell it. Sorry”
“But I need a new car”
“If I wanted to sell it, I’d put a sign in it. That’s how I sold my last car. You should look for cars with signs in them. Mine’s not for sale”
“But you might decide to sell”
[OH MY GOD!] “I won’t. I’ll keep this one for as long as it lasts…look, I do know someone who’s selling their car. It’s suitable for kids. She’s only changing her car because she’s pregnant with her third.”
“Oh…that…What kind is it”
“A Nissan…damn…I think it’s a Qashqai but I’m not sure. It’s the smaller kind. Hang on…I’ll Google it….ok…It’s one like this but as I say it’s the smaller model”
“Oh…”
“How much are you thinking of spending?”
“Ohhh… £1,000…or more”
[Ha ha ha. You’re joking right? You think I’d sell my car for £1,000] “Oh..” [awkward…]
“How much do you think your friend is selling her car for?”
“I don’t know. At least as much as mine is worth…at least £6,000 …probably more. I don’t know though”
…..
“If you’d like, I can take your number and ask her to call you when she’s back from holiday”
“Ummm…no. My phone’s broken. I dropped it today and it broke”
[Seriously?? Why are you holding a broken phone in your hand now then??] “Umm..ok…look. I’m sorry I can’t help. How far along are you?”
“Eight weeks”
“Plenty of time for you to sort something out then.”
“So are you sure you don’t want to sell your car?”
“Yes”
“But if you don’t drive it, you’ll have problems with, like, the brakes and stuff”
“I drive it often enough. I just don’t need it every day. Why would I drive to work when it’s a ten minute walk?”
“I thought if it was broken down I’d pay, like £1,000 to buy it and fix it up”
“Yeah. That’s exactly what I did with my old car but I put a sign in it when I wanted to sell it. And my car now is absolutely fine and I don’t want to sell. Fiestas are good cars though. You’re right to look at them.”
“….Hey! Your cat’s cute”
*I look down* *cat walks out the front door*
“She’s really fat!” [So are you. And I’m guessing you spotted how I looked at your stomach when you said you’re only eight weeks pregnant. Man, I wish I had a poker face]
“She’s old and she’s put weight on in the past year and I’m working on trying to get it down. She’s seeing the vet this week for her boosters so I’m going to talk to him about it” [which I will need my car for. Duh.]
“Has she had lots of kittens?”
“No. I had her neutered when she was a kitten and sometimes they develop pouches under their bellies after that. She’s always had that pouch, no matter what her overall weight was”
“What’s neutering?” [Oh, dear God. Why am I still in this conversation?] “Umm..I have a boy cat too and didn’t want to have to find homes for kittens, even though they’d be really cute”
“Ohhh…what’s she doing”
[She’s just sitting there] “She just likes to follow me out front sometimes”
“Do you need to get her”
“Not right now. She can go back round the back when she’s ready if she doesn’t want to come in with me when I go in. When I get round to fixing the back gate I need to leave a gap at the bottom for her to wriggle under. For now, she’s fine…” [Why am I telling her this?]
“So. Is it just you and her here then?”
“And my boy cat” [Shit! Why the hell did I say that? When am I going to learn?]
….
“Are you sure you won’t sell your car?”
“Yes”
“Never?”
“No. I like my car.”
“But, like, never ever?”
“No. I’ll keep this car until it completely dies. I don’t want a different one. I like this one” [And I’ve already spent more on the car this year in repairs than you’re offering for it for fuck’s sake]
“But you don’t use it”
“I do use it. Just not for work. It just happens that the last time I used it was about two weeks ago” [this whole constantly on my driveway thing…in your stalking of my car, did you miss the three days I went away for last month, the two days out since then, the day it was in for its MOT, supermarket shopping…]
“But you might change your mind”
“I really won’t. I’m not selling my car”

Eventually she let me go. I was annoyed and shaken by the sense that she thinks her need is greater so I should just hand over my car at a fraction of its value. I’m worried she might damage it. And worried that she’s met one of my cats and could hurt her. And that I told her I live alone. I tweeted about it and everyone who replied said it was really weird of her and the consensus was she’s up to something and I should tell the police. Maybe so. Oddly, my car’s a Ford Fiesta and my next door neighbour also has a Fiesta on the drive that’s on it at least as often as not but she came to my door.

I hope this woman isn’t a threat to me and that she’s just painfully naive and stupid in different ways to the ways I’m naive and stupid ie by having no idea it’s incredibly rude to doorstep a stranger and demand they sell you their car, no idea how much cars cost, rushing to buy one the instant she gets pregnant, rudely assuming the owner doesn’t need a car at all despite the fact that many people round here commute by train to London daily but have a car anyway etc. But the whole thing set my teeth on edge. I’m seriously worried she’s going to do something more.

I hate my knee jerk honesty and politeness. It’s literally encouraged stalking behaviour from more than one man in the past and it’s repeatedly caused me to inadvertently encourage harassment on public transport. I don’t have the protective instinct that tells me when to lie. I blurt out the truth, repeatedly telling strangers I’m single and live alone and then coming to regret it later. I’ve told myself I need to stop doing this but it’s like I can’t. The instinct to be honest and polite always trumps the instinct to protect myself.

Walk a mile in my shoes

This thought made me giggle to myself because today I walked a whole mile before I even left the house. I was pacing around while I was working – dictating on two things that I’m kind of stressed about. Most people seem to be quite happy to sit at a desk and much of the time I do (rarely happily because of all the back problems and with a lot of fidgety stims but I do it!) but when I’m worried or unconfident or wound up over something pacing helps me to get my thoughts together to say what needs to be said. Oh, and also when I’m excited about what I’m dictating on come to think of it, whether because the subject matter fascinates me or because I’ve had an AHA moment on something that wasn’t coming together for me. More often (ok, very often) I pace in relation to personal issues (ie dealing with other people, including in the workplace, in which case it can be with the aim of planning ahead what to say or more of a coping mechanism to deal with something that already has – I’m sure I’ve talked about all that before so I won’t bore you with the details of why I can’t imagine living with someone else and not being able to talk out loud to myself for long periods of time while pacing) but sometimes the reason is more directly work related.

So the old cliché sprang to mind when I realised how far I’d paced with my phone in my pocket. “Walk a mile in my shoes”. Feel the thing that compels me to movement. Feel the thing that, through movement, puts thoughts into a cohesive order and produces reasoned arguments where stillness blocks my thoughts, leaves me feeling trapped mentally and emotionally. Feel the need to not sit still when intellectually excited. Feel the thing I have to do when I’m rehearsing conversations, replaying them, trying understand, trying to get things “right”, trying to work the emotional pain of failed conversations out of my system etc, pacing the whole time. Oh, and know that in all those things the only place I allow myself to truly be myself and allow myself full freedom of movement is at home, although at work I fidget and fidget and fidget etc in the privacy of my office. For that matter, feel the thing that drives me to walk miles to the shop instead of taking a car because I need to move in the open air for my mental wellbeing.

Walk a mile in my shoes…Then feel free to eat that extra snack because if you spend some time in my shoes you’ll be burning up the calories like nobody’s business 😌

Open the window

“Sorry but it’s really hot in here. For some reason the heating’s on. We won’t be long though,” is what I said to clients who came in to see me one day. When I left them to take copies of documents, I noticed how cool the secretaries’ room was. They had their window open. And as I sat back down at my desk it hit me: were my clients, who know from experience how clever I am, wondering why on earth I didn’t go switch the heating off, open the window or switch on the fan? And suddenly I was wondering the same thing. Fortunately it really was a very short, simple meeting because it’s hard to focus while internally berating myself.

I’ll sit uncomfortably at my desk for hours before it occurs to me to put on or take off an extra layer. I’ll sit there for even longer before it occurs to me to put a heater or fan on. Often I have to hear someone else say “why don’t you put your heater/fan on?” before I do it. Last summer someone said “switch the heating for this end of the building off completely” in answer to my radiator problem, which hadn’t occurred to me. I knew the heating could be turned off but in my old firm the partners did it so I assumed I wasn’t allowed to do it here. Even knowing I could do it, taking the next step and thinking “I’ll do it now” took me weeks again this year and that was itself weeks after I originally wrote this in draft.

It’s not that I’m unaware of the discomfort of being too hot or too cold. Far from it. The cold increases the pain and the stifling heat of my broken radiator running on a hot day makes it impossible to think straight. It’s that solving the problem of regulating the temperature for myself is difficult for me and the delay between noting the problem and solving it can stretch so long that I have days where the working day is over and I haven’t managed it at all. Most days, in fact, when it comes to cooling the office down. In the winter my boss comes in early and puts the fan heaters on in my office and others because he’s a nice guy. Without knowing it, he’s helping me to do something I wouldn’t otherwise manage for myself. If it gets too hot, it’s a long time before I think to switch it off though. If he’s not in, I don’t think to put it on unless someone else comes in and comments. Today, now the heating is off, I spent most of the day shivering miserably. It’s only now I’ve come back to this draft that it’s occurred to me that I could have put the fan heater on. Hours after I left work at the end of the day.

This is yet another thing where it hadn’t occurred to me there was anything “off” until I read it a few weeks before the meeting I mentioned. Another thing where I was just living my life, oblivious to any difference in this respect between me and the next person (assuming the next person is neurotypical). I took it for granted. I don’t know how common this is because the book was a personal account of autism and much of what he said didn’t apply to me at all but I can understand that this could be an executive function thing. I also have difficulties starting tasks, dealing with interruptions (and, paradoxically, on bad days staying on task becomes impossible) and other things that sound related to me.

Saying this, I think it sounds trivial but it’s not for me (especially when it’s part of the bigger package!). On hot days the heat from my broken radiator literally affects my ability to do my job because of the effect on my ability to concentrate (probably largely because I get so dehydrated but can’t recognise I’m dehydrated and then problem solve “drink more water”…yeah. I know), yet solving the problem is impossible for hours at a time. The risk of making mistakes because I can’t regulate my environment properly isn’t at all trivial in a job like mine. I can sit there, overwhelmed almost to tears by the effect the temperature is having on me, an almost petulant, childlike voice inside me whimpering about it, without being able to solve the problem. Reflecting on it, it’s so hard not to call myself unbelievably stupid. And of course, this is just one particular example that comes up very regularly in my life. It has other implications too.

Knowing about it doesn’t seem to help, or at least not yet. As I say, I discovered that this isn’t normal neurotypical behaviour weeks before that meeting. What’s happened is that knowing makes me feel self conscious after the fact when I realise I’ve exposed my stupidity again. Aside from doing nothing when I’m alone in my office, I even had a couple of other meetings in my office since the one mentioned above without preparing the room by opening a window or something before finally asking for the heating to be switched off. It’s only afterwards that I realise my mistake. Or during if I’m unlucky because sudden awareness of having got it wrong is distracting and embarassing. Maybe in time I can make the solutions habitual now I know what’s going on but I don’t know. Maybe it’s insurmountable. I don’t know how this works. I kind of think that if I build a routine, I’ll be able to follow it through but I’m not sure how to go about that. Maybe by setting an alert on my phone or desktop asking if I need to put the fan or heater on…and reminding me to drink water, damn it! I’ve tried alerts to remind me to drink in the past and they do work as long as I leave them switched on so maybe that is an answer.

Stop smiling!

There’s so much I could and might still say about the EU Referendum. I never thought I’d talk about politics here – I have my original blog for that – but this is different because my reactions to everything that happened don’t seem like something other people would understand. I know I’m not the only person finding it all incomprehensible but the reactions I’ve seen don’t fit with mine. My emotions and most of my thoughts are too much. I’m not going to write about the deepest issues right now. I may not ever. That sounds so dramatic but I’m really having trouble with it. Here, I’m just going to talk about a few particular aspie things.

The Escape
So, there’s someone at work who has come out as racist. Before anyone starts screaming at me that not all Leave voters are racist, she is. She even said it herself and said she isn’t ashamed of it. She’s anti EU workers but the deepest venom is reserved for people who are Muslim. It’s appalling to me that anyone thinks they can come to work in 2016 and say the things she’s said since Saddiq Khan was elected mayor of London. She was slyly campaigning for Leave in the office from then on. I say “slyly” because she’d poke and prod, seemingly trying to gauge the amount of support for her real views by trying to lead conversations into an agreement with the worst of her opinions.

Except I’d made it clear there was absolutely no way I’d change my vote so she didn’t have to be sly with me. It felt more like she was poking and prodding at me for fun. What did I do? I walked out on her. I didn’t think about it. I just waited for a pause (I guess I was supposed to reply in the pause, in retrospect) and walked out. It wasn’t until later that I realised my reasoning of “Oh good. She’s stopped talking. The conversation is over” was flawed but I just couldn’t stand to listen so in my mind I left as soon as I politely could. Yeah, I know. Turns out I do that quite often. I’m not sure how many times I did it to her. At least three times over recent weeks. It genuinely seemed reasonable to me to do it. Looking back, I don’t care in the slightest that I was being rude. She deserves that and more besides but it’s something I do repeatedly and not just to her. I take the gap and walk away if there’s any reason at all for me not to want to continue the conversation and it doesn’t matter that I later realise that might not have been appropriate. If a similar situation arises, it still won’t occur to me to do anything else.

Wtf was my face doing just then??
There’s a limit to how much I can say about my work pre and post referendum but I’m a Commercial solicitor so “shit got real” in the weeks leading up to it, as the markets started to realise that holy crap, UK voters might actually vote leave and more so in the days since. I spoke to my boss earlier this week about something that doesn’t, in itself, have a major impact on us but is a really bad sign. I also said what was happening to shares in a particular sector (a disaster, as at the time of that conversation). After the conversation, as I walked away, I noticed what my facial muscles were doing. Oh crap! That’s the lingering feeling of a smile. It feels like a grin. Oh God. Did I just stand there saying the sky is falling down with a fucking grin on my face?? I thought back and yes.

I can think of at least five conversations just in the course of a couple of days when I was smiling. Even the ones that included my absolute horror and near panic attack over being a witness to a European woman being harassed in the street on my way to work the day after the referendum (not that I’m not European but I didn’t pick up on what language she was speaking and the word “foreign” is so loaded and EU worker might not be appropriate for a young mum). I don’t know if neurotypicals realise what it’s like to realise your face has been conveying an impression that’s the polar opposite of how you feel about life changing events and that you may have caused offense. And now I know it’s going to happen I feel really really uncomfortable but I know I can’t stop it happening. The only way to stop it happening is not to talk about the biggest issues facing our country (and many others) today.

Do I sound excited??
Do I sound excited when I’m really passionately angry and afraid? My anxiety has been through the roof for weeks. It was almost a relief to know the outcome, rather than strongly suspecting and fearing what it would be. But all the things that made it an awful prospect to me haven’t gone away. The politicians are an unedifying mess. The markets are jittery. There’s too much information, disinformation, opinion, speculation; a huge flood of everchanging news and too many people screaming at each other (and in one case at me) on social media. I can’t inform myself because there’s both too much happening and too much that’s getting in the way of anything constructive happening. My brain is in overdrive as I try to keep an eye on it all, while simultaneously trying to keep all the plates spinning at work because it’s important to me that while the politicians are lost in their own world, I can do my bit on the ground for my clients.

But I’m aware that my tone doesn’t fit the seriousness of what I’m doing and what I’m feeling. Maybe that’s solely because of the sharp bite of anxiety running under everything. Until last night I hadn’t had a full night’s sleep since last Thursday. And I’ve worked every day except Sunday despite the pain. On Wednesday I put in 12 hours. I haven’t been able to relax and my appetite is off. My body’s juddering harder than ever and palpitations come and go. This is hard. I need answers and a plan and damn it, those irresponsible bastards have left me hanging. There is no plan. This is so big that it’s frightening to anyone with a lick of sense…

…Oh. For someone like me, “there is no plan” has deeper meaning. In From Anxiety to Meltdown, Deborah Lipsky talks about “our need to script for just about every contingency” and that was a huge “Oh yeah” when I read about it. That’s it. That’s the answer to the question and writing this post provided it so it’s a worthwhile exercise for me. It’s bad enough not having a script to follow to go to the shop (yes, yes I do) but my entire country just went off script and the man who wanted to be our prime minister until being unceremoniously and deservedly stabbed in the back told us he has no replacement script. It’s no wonder I’m a wreck.

I had a feeling that my determination to keep to business as usual at work (within reason – it’s not like I’ve been advising people to proceed with deals that obviously don’t make sense) provides me with reassurance that my personal script is still valid, even if the big picture is that the country’s script was set on fire and the ashes doused in acid. But I know it may well be coming. I know that and it scares me in a “my scripts are unravelling. Can’t cope, can’t cope, can’t cope, imminent meltdown” way. It’s not like I consciously think that but that’s what’s driving a manic energy, a sense of urgency because this must not fail.

It’s like when I pop into the office for 30 minutes with a detailed plan for everything that’s coming after, only on a huge scale and you don’t want to see the state I can get worked up into if I’m going to be 10 minutes behind in collecting my prescription and each step onwards because someone has trapped me in the office (which is how it feels) so imagine how this colossal impending script fail is affecting…actually, don’t. It’s not fun. It’s possible that only my need to be responsible stops me unravelling, like I feel I have to stop my clients’ scripts unravelling.

So, maybe that excited tone in my voice is actually edginess, a sign of an impending meltdown. I wish I could stop feeling like this. I want answers. I want a new script that I can work my life into. It’s not a theoretical thing for me. My work life stands to be hugely affected. On Wednesday, the markets rebalanced but for how long? We don’t know. I haven’t checked them since because I’m too exhausted. The markets may be confident Article 50 won’t be invoked for some time, maybe never but what happens if/when it is? And I think it will be. What happens if…well, lots of things. Strand after strand of possible events and I’m all too good at picturing them all, although a horrifying thing about the current situation is that certain things are so utterly bizarre that I haven’t been able to predict them, which (as anyone who read Lipsky’s book and nodded along like me knows) is frightening. If my ability to draw rational conclusions is severely limited by the irrational behaviour of others, how can I script for every contingency? If I know for a fact that I can no longer go through a checklist of what ifs because of the irrational unpredictable nature of the situation, how can I plan??

It’s good to get to grips here with why I might sound too eager, too excitable (although I’m not sure there are any solutions to the problem within my control) but it is still embarrassing to hear my voice go off in directions that sound so wrong, given the somber nature of the situation. It would be easy to misinterpret my tone and think I’m being frivolous or enjoying the drama. I’m so not. Even my safety nets to help with executive function problems haven’t helped me to keep a semblance of normality since last Friday. And I’ve been too scared and obsessed with what’s happening to even settle to special interests. I’m only just hanging on to control here so maybe I need to ease up on myself a little.

I had this coming week booked off for a while before the referendum. This morning I spent an hour dancing my baby nephew round the kitchen to pop songs on the radio. This afternoon, we puttered around people watching and snuggled up while he had a nap. It’s been lovely but the moment I sit still on my own the thought of a long process of not knowing takes over. Even though I’m tired for good reasons, the edgy fear comes back. What I really want is the status quo back but I can’t have that and it looks like the edgy fear is here to stay for a long time.

So…does everyone…?

I have a lot of questions about things. Here’s one. Does everyone start low grade worrying days in advance of a known delivery? My new washing machine arrives some time between 7am and 7pm tomorrow and it’s been bothering me since I placed the order last Tuesday. On Saturday I worked our I’d run out of fruit by tomorrow. I’ve repeated that fact to myself numerous times since, reassuring myself the supermarket is open until 8. Yesterday I cleared part of the surface of the washing machine. Tonight I cleared the rest. Today I started thinking about what routine I’d need to run to be ready for a possible 7am delivery. I’ve repeated the timing to myself a number of times this evening. It’ll probably take me ages to get to sleep tonight as I fret over the delivery men coming into my house. Tomorrow I’ll be stressed until the delivery arrives and the thought of that being 7pm makes me wonder why I didn’t pay for a delivery window. I know it’ll be a really stressful day. I can’t relax and go with it. So does everyone feel like this about deliveries? I really don’t know.

What lies beneath

The thing, the heart breaking soul crushing thing, is that what Aspergers means for me above anything else is being alone. I have feelings. I don’t know if I can feel love for people because I don’t understand how they define it and what they expect of me but I feel. But I’m incapable of being in a loving relationship and besides, there’s something about me that makes men see me as less than human, unworthy of decent treatment. I used to believe in true love. Time passed after the kinds of experiences I don’t know if I’ll ever get over and I kept on believing but finally I began to see that I’m incapable of love. I wanted to love and be loved but I reached a point where I started to see it wasn’t possible.

My brother got married three years ago and at his wedding, even during the service, I was thinking that I don’t get it. I don’t get how they got to that. I could see the love between them but their relationship was a completely alien concept to me. One the one hand I was happy for them and grateful that my brother has something which is obviously wonderful for him. On the other hand, I was devastated by the dawning sense that I was unlikely to ever have it. Even though I couldn’t have put it all into words that night, I cried myself to sleep and that day began the change in me. It was the first step towards realisation. It wasn’t just seeing my brother and sister in law. That day, I watched the marriages of my closest uncle and of my closest aunt and saw in them what I saw in my brother and sister in law. I still didn’t fully see that this wasn’t ever going to happen for me though.

Last summer my favourite cousin got married and I experienced something very similar. He and his wife are both lovely and so well suited and the happiness shone out of them and, again, I was both happy and devastated by my complete inability to understand why that’s missing in me. By then, I’d had more bad experiences, humiliating ones that hurt and caused me to withdraw for fear of it happening again. I’d realised I was unworthy of even being liked, much less loved. Their wedding was about a fortnight before I read those first articles about Aspergers. I’m sure there’s many Aspies who can love and be loved but I’m not one of them. I lack whatever it is that makes people worthwhile in the eyes of others and even if I had it, I couldn’t give whatever it is that other people do to form a bond between two people.

If I stick to thinking about things like sensory issues, interests and routines, I can avoid my feelings, thoughts, communication problems and a myriad of personal failures…sort of. In my head, I’m not able to avoid the thoughts of worthlessness and the loss of hope but I want to. I want to bury them and not find myself standing in the shower with tears streaming down my face and snot bubbles grossing me out when I can’t blow my nose because I can’t keep thoughts of my worthlessness at bay. I want to not have to force myself to stay standing because my instincts are screaming the need to huddle in a ball in the bath and cry until I have no tears left with the shower still running. I want to not then step from the bath, follow my exact dressing routine and then leave the house and go about my day as if nothing just happened.

It’s all very well telling myself I’ve had another disability all along, a developmental disorder but I lived for 38 years without those words so they’re not the words I have for myself. Freak, weird, loner, useless, worthless, unlovable, unloved, cold, disconnected. Those are some of the words I have for myself. The words other people have for me…well…some of them run along similar lines, while others are indicative of their not knowing me at all but even the most grossly unfair characterisations wouldn’t be applied if I was neurotypical because they come out of a complete lack of understanding of me and no desire to do so.

I try to make myself focus on things I can use in a positive way. But I’m aware  that I’m tinkering at the edges and that there’s a gigantic ball of mess inside because those little things don’t make me any more valuable as a person. They don’t make my life any more valuable. They don’t make me any less certain that I’ll never amount to anything or have anything like the kind of life other people get to have. They won’t make it possible for anyone to love me. They won’t make it possible for me to form bonds. They won’t make it possible for me to have children and they won’t change the fact that I don’t deserve love and a family and would be a terrible wife and mother. They won’t make me any less lonely.

I don’t want to think these things but what’s the alternative? I used to live in hope and it caused nothing but trouble. I don’t want to cry but it seems that the alternative is to become completely numb. Much of the time I already am – I think a lot about things without feeling anything – but sometimes it rocks me so hard it’s all I can do not to physically fall down. I think the total numbness would be preferable. I’m not blind to how pointless I am and how little I contribute to the world. Far from it. It’s perfectly clear to me that I shouldn’t really be here. And I’m not blind to how other people must see me now either (reading the spouses and parents of Aspies and autistics is a great way to learn to think even less of yourself). I’m far more angry at myself on days when I cling to the old delusional hope that maybe, just maybe, things will change. I won’t change. The way other people react to me won’t change. So hope is illusory and I should be ashamed of myself for the days when I cling to it.

These are the things I’m trying not to think when I write about other, less important things. They reflect the hardest impairments to live with. The ones that dictate that I am alone, that I have nothing to offer, that I’m a burden. That I’m a natural victim. They’re the impairments I’m most ashamed of, a reason to hide away. I can write about other things but what always lies beneath is the solidification of what was part suspicion and part completely unacknowledged before. I don’t fit. I am alone. And knowing why really doesn’t help me to feel better about it at all.