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On Independence Through Reliance Upon Others (Autistics Speaking 2012) 
1st-Nov-2012 02:52 pm
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I don't really think of myself as "disabled".

Even when I got the diagnosis of Asperger's. I mean, Asperger's is an Autism Spectrum Disorder, and Autism is classified as a disability, but this is how I've always been, so I don't feel any more "disabled" after the diagnosis than I did before.

Sure, there are things I can't do as well as most people, but usually I can work around them. "Please email that info to me, because I have already forgotten it." "Please, only one person talk at a time, otherwise I can't hear anyone." "Say again?" "I don't understand."

But then sometimes the walls fall down.

Last week was very difficult, but it could have been much worse.

The Tuesday before last, and the Friday before that, I had the visual halo of a migraine after going to the gym. This was disturbing – to say the least – so my wife, Mim, made an appointment for me at the doctor's.

And on the Wednesday evening – the evening before the appointment – my car's engine changed from running rough to tapping as I drove home from filling the tank. When I checked, the oil was basically dry.

So on Thursday morning Mim drove me to the doctor's appointment, where he told me I was probably dehydrated, and that I needed blood tests for everything. I was at high risk for Diabetes, high cholesterol, Lymph dysfunction, all sorts of things.

After the appointment, we went shopping and got a bottle of oil, and I filled the engine when we got home. I drove around the block, but the tapping didn't go away, so Mim called a mechanic, and we drove over for him to look at the car. It turned out that the tapping was fixable, the car needed a service (which I knew), and I had severely over-filled the engine, and was at risk of blowing the gaskets. We booked it in for a service the following Monday. Which meant that I would have to figure out the new train ticketing system to get to and from work.

On Saturday, Mim took me to get phlebotomised, which was relatively painless, even if it did delay my morning coffee by a couple of hours.

On Monday, she followed me to the mechanic's, and took me in to work. She gave her phone number, so that the mechanic would talk to her about the works required, and her mother drove the car home for us. Then Mim came and collected me from work. She also booked the followup doctor's appointment when I got notification that my results were in.

I'm not diabetic, by the way. (big sigh of relief.)

But that long tale, even with the happy endings (car is fixed, bloodwork looks normal, further gym sessions have been migraine-free), brought something else to light.

I could not have done any of it on my own.

Mim had long since found a medical clinic for us to go to, and had the number to hand. Mim knew the mechanic, and had his number to hand. Mim had organised half a dozen people in an intricate dance of planning over a week, over and above the usual juggling involved with being a mother of two. Mim neither froze nor panicked when plans changed and unexpected emergencies popped up. Mim could make phone calls without having to force herself to.

If it were not for Mim, I would have had to pick a doctor randomly out of the phone book, not having any idea where to go. At this point I would have been paralysed by the choice between dozens of unknowns, and very likely given it up as Too Hard.

I would have had to pick a garage out of the phone book, again, randomly. Again, paralysed by a choice between unknowns, again likely to have given it up, or at least put it off and put it off and put it off...

I would have been unable to ask for help, leading me to be stressed out by learning how to buy a train ticket in the new system. (Although that there is now a need to learn how to buy a train ticket is another rant, for another time.)

Even if I had been able to chose a doctor or mechanic, I would have been paralysed at the act of picking up the telephone and talking to them: an absolutely excruciating experience at the best of times, and the best of times is not when I'm worried about my health and my car and everything is failing at once and I need to cold call strangers and make snap decisions and complicated (for me) planning on the run.

With Mim looking out for me, everything turned out OK, and relatively without fuss, and quickly.

Without Mim, I would still be stressing about finding a doctor, and prevaricating about actually organising to go, and putting off dealing with the car, and catching public transport in the heat and the rain, and avoiding the gym because I didn't know what was causing the migraines, and generally freaking out. Every point would have been a mountain to overcome, where most people see gentle hills at worst. And that's if Mim were to have only been on holiday last week. Without her at all in my life then I wouldn't be living where I do, likely wouldn't have the friends or social interaction that I do, wouldn't eat as well as I do.

Whenever I've made a step towards independence in the past, it was only possible because friends and family have helped me. A school friend helped me move out of my father's house, and in with him. And then helped me arrange a flat of my own. Where I lived off takeaway, and never used the kitchen, and washed my clothes far less often than I should have, and was in the early stages of scurvy before other friends noticed and gave me a prod. And those friends helped me move in to their share house, and through them I met Mim.

I owe my independence to the help of others. I don't think I would have been capable of any of it without their help.

And it was luck that led me to them: it was because my father saw an ad for the entrance exam for a selective entry state school, and he took me to take that test, and I passed, and I chose Japanese instead of French or German, and I repeated year ten, and I joined the Stage Crew. If any of those things had not happened then I wouldn't have met any of these people, and I would not be where I am now.

I simply could not have done it without their help.

And so, by this luck, this series of strokes of luck, I am privileged. I am privileged in that while I have Asperger's, I don't have to think of myself as disabled.

Because other people have helped me in those things which I cannot handle on my own, simple and normal things which most people take for granted, like arranging a place to live, and eating, and seeing a doctor, and getting the car serviced, and dealing with minor crises, and so I am saved from most of those things which could so easily go so very wrong.

I love Mim. She is my wife, and my friend, and the mother of my children, and besides all that, the person who enables me to function as if I were normal. I cannot express how grateful I am to be so lucky.


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Comments 
1st-Nov-2012 08:16 am (UTC)
I really like this post. I think it's an excellent explanation. In spite of having a different condition, but with a similar problem (of simply needing to work extra hard to achieve half as much - having to make effort to do stuff others can do without thinking), it wasn't until I started reading the stuff you wrote that I realised people with Aspergers have it too (as well as other issues that I don't have and did not hitherto understand). Hence I am very glad I read your LJ.

Edited at 2012-11-01 08:18 am (UTC)
1st-Nov-2012 10:22 am (UTC)
I left home under both duress and my own steam, and because a friend knew of the duress and offered me accommodation. I could not complete my degree, I could not get work, I could not complete a TAFE course. I didn't know what was wrong with me, but in the eyes of society (as I experienced it) my failing was moral in nature. I was a lazy, useless drain on society. I was wasting my abundant gifts by failing to choose and pursue a career path. I was contemptible.

And I tried so hard. So hard and so often, in between bouts of despair. But even if I didn't get things really wrong right off the bat, I could not sustain my efforts for long enough to gain any traction or reap any benefit. I got so sick of myself. So tired of optimism. So tired of starting things with enthusiasm only to realise at some point that the effort was wasted, the intention misguided and that it was better just... not to try. You can't fall down if you resign yourself to a life of lying on the ground.

Eventually, after marriage and children, after years of contorting myself (despite being deeply disorganised, uncomfortable to the point of tears with using the phone, depressed and anxious pretty much constantly) into the role of being the person who made everything happen; who made the appointments, got everyone where they needed to be on time (or only a little bit late), with the things they needed, dressed and fed and cued up to behave appropriately, I had a melt down. I'd never been good at making friends, and I only had one at that point. When that person turned into something I could not cope with, I lost that last shred of support and collapsed. It was damnably horrible, especially as a feature of my Aspergers is a lack of ability to process emotion. It took me an intensely agonising age to get over that. And at some point (or points, as I was going through emotional processes reapeatedly) I realised or decided a few things; If this was as bad as it gets, I can survive it. ; if this is what being "well behaved" gets me, fuck that. ; if I can have an emotional melt down, I have a right to protect and nurture and have regard for myself emotionally.

I'm different since then. I can't concentrate well enough to read books the way I used to. It's hard work now, and upsetting because the frustration involved in reading a book also reminds me of how effortless it used to be, and what a sanctuary it was. But my quality of life is better overall. I had evidence to back me up when I said "I can't do this any more". I did finally complete a course of education. I have claimed the right to sometimes do things that I like to do because I like to do them, and not do things which I don't like to do.

Eventually, after much effort and duress, of a financial nature this time, I got assessed for and diagnosed with Asperger's Disorder. At the age of 42, I have something like vindication for all the times I was penalised or castigated or outright punished for failing to be adequately "normal". It was not that I wasn't trying hard enough. It wasn't that I was lazy or seeking attention or being deliberately obtuse just to annoy other people. I was acting like a really bright kid/adult who has a neurological/intellectual/emotional impairment. Because that's what's wrong with me. And it's all that's wrong with me.

I've hardly experienced any generalised or acute social anxiety since the diagnosis, which was almost eleven months ago now. I don't know where I go from here. I'm still disorganised, I still roll from one crisis to the next with what I expect is a baffled "what, again?" expression on my face. But things are looking good on a number of fronts: I have thriving children, a lovely supportive partner, I'm one day more pregnant today than I managed to get last time, and I have options if not for employment, then at least for better preparing myself for employment. I think things will turn out okay.
1st-Nov-2012 10:56 am (UTC)
Does this count as "it gets better" for Aspies?
2nd-Nov-2012 12:09 pm (UTC)
I hold that if they aren't, as the saying* goes, surrounded by arseholes, it does get better for Aspies. I believe that it's a developmental disorder, which means that, even if we've missed developmental windows (and I'm not sure they are as hard and fast for us as for others), as we grow older we can work out what it is that we're "missing", and develop tactics to handle things better. This process works much better for people who aren't expending all their energy coping with an excessively hostile environment. See again the saying below.

*Before you self diagnose as having an inherent problem with depression and low self esteem, check to be sure that you're not just surrounded by arseholes.
1st-Nov-2012 01:45 pm (UTC)
She is wonderful and very organised. It is so great to hear someone really appreciate their spouse!
1st-Nov-2012 10:58 pm (UTC)
Hey! We're lucky too you know. :) You're our friend, and we love you.

I also think much the same thing really about moving to MHS and meeting you guys. :)
2nd-Nov-2012 12:00 am (UTC)
This is an awesome post. It was awesome to meet to, to live with you, to work with you. It would be good to see more of you.
2nd-Nov-2012 02:36 am (UTC)
This is awesome. I totally agree, your wife is great. I can relate. This is what I want. I have it with my family, but i've never had it in a relationship.
3rd-Nov-2012 07:12 pm (UTC)
Thank you for this entry. It highlights the ways that a person can get needed supports from the community. I am a (currently) undersupported autistic who is falling through the gaps -- no family and friends to help me but "too functional" for government assistance. I am living independently, but limpingly so. Your blog entry very eloquently highlights the sorts of assistance those of us on the spectrum can benefit from. This helps me to understand better what sorts of supports are lacking from my own life and enables me better to formulate words about what sort of things I need so that I can go about asking for them -- one of the hardest parts for me about asking for supports and/or accommodations is figuring out in the first place what would help me.

You are a strong writer and the community at large benefits from your voice Thank you for speaking on Autistics Speaking Day!
(my entry for ASD 2012: http://unstrangemind.wordpress.com/2012/10/31/autistics-speaking-day-2012/ ‎)
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