Believing in what I cannot do

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I am starting this thread in response to a question asked by @andrewvogl (Andrew) on Twitter, because 140 characters simply isn't enough to give the required detail, and I felt that it would be good to hear other autistic people's stories too. Andrew asked me to elaborate on this message, which was the culmination of a conversation about having faith in someone's abilities: http://twitter.com/alphabetania/status/3860404012

Andrew, I am sorry it has taken me some time to reply, and I will not be able to elaborate as fully as I'd like tonight because I have several hours of work ahead of me in preparation for the week.

But let me begin by using this example:

It seemed reasonable for my business partner to believe that I would become tidy by committing myself to using our filing system, by doing a little every day, and so on. Neither of us knew at the time that I had ADHD or Asperger's Syndrome and it seemed reasonable to me as well to commit myself to doing this thing which seemed to come naturally to everyone else in the world but which was so slow and irksome a thing for me. It seemed reasonable to me that if I simply chose not to sin, I would overcome 'laziness'. After more than 10 years of broken promises, and much hurt, harm, mistrust, arguments, crying, rebuilding of trust, breaking it again, loss of faith in my promises, "Can't you just admit you LIKE being messy?", "I will try again, please give me another chance", "Please let me do one big cleanup first, that's how it will work for me", "Your ADHD is not the problem" etc. etc. etc., we have finally both started to rebuild a damaged relationship based on my partner's gradual acceptance (following my diagnosis earlier this year) of the fact that I really am handicapped and disabled in this aspect of my life. Even after my diagnosis there was a lot he simply couldn't understand or believe and we had many fights and I had many meltdowns. He's learning now. He'scommitted. We're getting somewhere.

But I cannot even write about this without crying. I woke up too early this morning without enough sleep after a late night. I am sitting here in bed waiting for the laundry downstairs in the clothers drier, having taken two Ritalin to see me into the night as I prepare for a busy week. I am a well-known professional in my industry in South Africa, a person with a reputation for neat presentations and excellent documentation. My home, a tiny one-bedroom flat with an open-plan kitchen, decorated with a calming minimalism, is in a completely cluttered mess. I haven't even unpacked my suitcase from my last business trip two weeks ago. There are clothes all over the floor and the bed-couch in my living room, CDs in piles on my kitchen countertop, unsorted disbursement slips from several trips to a neighbouring country, magazines I haven't started to read yet mixed up with other books, Post It notes accidentally stuck to feedback from students, and to-do notes scribbled on other pieces of paper. I am not sure where I put my personal credit card or my passport. To get to the sliding door, or any of the living room windows, you have to climb over piles of this stuff.

I AM HANDICAPPED. THAT IS A FACT AND THAT IS THE DEPARTURE POINT FROM WHICH I WORK WHEN I SAY THAT I AM DETERMINED TO CLIMB MY OWN MOUNT KILIMANJARO: TO BECOME A TIDY PERSON.

I have worked out a therapy plan for myself. It is based on using my underlying autistic tendency towards OCD, combined with my hyperactivity and hyperfocus from ADHD and my Asperger's predisposition towards classification, as well as on my autistic tendency towards routine. My strategy relies on a certain amount of self-induced anxiety; it will require several weekends during which I must be isolated and undistrurbed and in which I can go through the emotional and neurological trauma that will be required for me to literally change my mind. I began the process earlier in the year but did not have sufficient successive weekends during which I was able to take a day for myself to work on this, as I was frequently committed to other family and work duties and was also out of the country for work on several occasions. I have also been battling an anxiety disorder this year as a result of all these years of tension over these issues, and apparently exacerbated by sensory integration problems. (If I had the time to tell that story as well, I could have detailed how my partner's expectation and belief in my ability to concentrate and remain calm like any other person while other conversations in my office were taking place, has at times created a strain in our relationship as intense as that surrounding my untidiness.)

It's OK to believe in me and believe that I could reach the summit of my Kilimanjaro. It's just not OK to believe that I am normal, or that it will be easy, or that I will be able to follow the usual route, or to take the same time as others would take. One day I will stand there at the top of the mountain and cry like I cry today looking from below, and it will be the tears of victory of having got to the top of what normal people would consider to be a molehill. If Oscar Pistorius can win a race against people born with legs, I can have my victory over adversity. But he would never have achieved what he did if his father had looked at him when he was a boy and said, "These stumps are exactly the same as regular legs. I don't understand why this kid keeps telling us he needs a prosthesis to be able to do a simple thing like getting from the bedroom to the kitchen!"

I completely agree with you with what you said at the end. This will be a huge undertaking. I like the balance between acknowledging the difficulties and the potential. I too have struggled with this very topic. I just had a few thoughts that someone taught me. Let yourself embrace the hatred you might feel towards putting things away. By allowing your emotions to be as they are you will be able to unlock an appreciation towards putting or throwing away. This will also give you answers as to why you are resistant to cleaning. It's good to acknowledge the diagnosis so you don't just feel crazy and beat yourself up, but doesn't offer concrete information. This valuable information will come out naturally when you feel the pain, misery and frustration around cleaning. This is an alternative to doing what most of us do to cope, which is stepping over our emotions or locking them up. By doing this you need the clutter to feel something, like one of those child games where you push one thing down and another pops up. If you have time, I would love to read any updates on your progress with this.

Thanks,

Andrew

It's not that I don't like cleaning; cleaning is not unpleasant, and it also takes less concentration than tidying. I have sometimes managed to get into a routine where the washing of the dishes is kept well up to date every day for days or even months. I like washing the dishes and it's OK to clean the floor. I just don't seem to find time for it sometimes. I also get tired after many days and long hours of work and then all I want to do is to escape to Twitter, where I can think simple 140 character thoughts. And that's where I then get stuck for hours.

I have a problem with middle-tier classification. Upper tier classification (put all the stuff to be washed in one area, throw the clothes into a pile, etc.) is relatively easy; lower tier information items (sorting business cards ONLY and no other document type, for example) also do not provide a great challenge; I usually just don't know where to put them after they have been sorted, so they end up back in a pile of sorted but unfiled stuff. What is difficult is that mixture of papers which contains disbursement slips and magazines and some hairband that has no definitive home, and those clothes destined for repair, and plastic shopping bags and all sorts of unique items that I can't group intuitively. I am extremely slow with that, but I have found that I can do it if I work myself up into an obsessive stressful state early in the morning by putting on loud music and staring at my floral coffee mugs for a while, and if I talk to myself, move really fast, cry, laugh, dance, stim vigorously and generally behave in a fashion in which no-one should see me.

Recovery after doing this takes time, that's why I have to be alone and have no commitments for that evening.

I don't LIKE the experience, obviously, but I do wish I had time every weekend for several consecutive weeks to entrench the resulting behaviour. I believe if I do this repeatedly in a controlled fashion, I will be able to habitualise my behaviour and bring on the obsessive state in a more controlled manner, and switch it off again, or perhaps even to repattern my thinking to not require the stress. I am relatively good at obsession control when I set my mind to it.

Two things came to mind after reading your response, I thought I would share with you.

1. Although there isn't a blatant dislike to cleaning, there is a resistance of some sort. With out fighting it, I think it would be worthwhile to try to understand the resistance better. You, like many, have clever ways of masking the resisting by leaving yourself with no time to do so.

2. I thought what you said about the things that have no home are the most difficult to put away. Makes sense, that you would need the homes first, but although I can relate all too well with this difficulty, why are you resisting developing homes? Also, on a concrete level, it seems crucial to not clean but create the places to put stuff.

3. The Asperger's plays a part, because what is difficult is the two-step process. There is no immediate reinforcement to creating a place to put something; once you do it, there is still a mess. Enjoy and embrace hating(maybe an exageration) the 2-step process and lacking an immediate pay-off. This is, as you know, the delayed gratification that is challenging for someone with Asperger's. It is crucial to embrace this in order to grow beyond it. Typically we just want to beat ourselves up and avoid it, putting ourselves into an emotional pendulum.

Good luck

Two things came to mind, you said, but you wrotedown three. Where did the third one come to?

Just a quick note (I will come back again later to study and think through what you wrote in detal later): I think that much of this is due to my ADHD.My ADHD colleague experiences the problem similarly (and she's not an Aspie).

The resistance, where present, comes from the inability/disability. If I am feeling stressed, tired and having a lack of concentration, then a nice easy thing to work one would be field validations and input translation in database fields, because these are simple, easy things for me that don't take a lot of tedious thinking. Tidying, however, is not easy. As I understand it from what I have read, what literally happens is that there is less oxygenated blood in my frontal lobe when I am confronted by a task which is difficult. This is not what happens in a nnon-ADHD person; they can concentrate at will. I cannot concentrate and be alert simply because I want to be. It is not neurologically possible. So if I am in a normal state and I simply attempt to tidy up, I will slow down terribly and that will make me despondent (it's like walking with weights on your feet.) So if I want to tidy, I need to kickstart the process by using a stimulant to get the right kind of chemical reactions in my brain. The stimulant could be a chemical which I take (e.g. Ritalin) or an activity which I do which will produce a chemical such as adrenalin (e.g. I can put on dance music or work myself up into a hyperactive OCD state). The approach to dealing with messiness in an ADHD person cannot be merely psychological (i.e. "Perhaps if you think about it in a different way...") It must take cognisance of the underlying neurolochemical processes involved.