It’s a life of plans, shocks, and surprises
I plan and prepare for everything. I write plans down, make lists, churn the words over in my head as likely progressions. I like to familiarize myself with ‘things’ before encountering them. And things, of course, turn out to be invariably different to their anticipations. You invest a massive amount of energy in nailing things down in your head, only to find them taking a very different turn.
'Such is life,' comes the response. As in 'reconcile yourself.' Or, as the title of the It's Immaterial album has it: 'Life is hard, and then you die.' In truth, so many people die long before the end of physical life comes.
My response to those people who so blithely assert 'that's life' is to say that the 'awkward' way that autistic people approach the world is also part of that life, and there is some adjusting for you to do with respect to your own plan and expectations. That assertion of reality works both ways - and autistic people are nothing if not real in the extreme. In discussing these issues with people with respect to the world of work, I have been cautioned on my ‘difficult’ nature. It has often been called 'sensitive.' But it has often been called 'difficult.' I openly declare that I am difficult. I could also point out that the objections that I have been raising since the age of fourteen and fifteen have been born out by the facts of experience. Had experts and authorities actually listened to me, as opposed to merely overriding my testimony with the repeated statement of the reality principle, I would have been diagnosed with autism much earlier, saved a life time of frustrated hope and wasted potential, not to mention near fatal heart attacks and chronic illness. To have come through all of that only to be met with the same experts and authorities asserting the same unchangeable reality is more than galling. The lesson I have learned is that it is safest, wisest, and healthiest to stick to your guns and remain 'difficult' without apologies. To thine own self be true. Because I have learned that the people you approach for help are less than concerned with you and your needs. 'A pretty girl can give only what she has.' And ugly experts and authorities have much less than her to offer.
I can just as easily caution others on the way that their lack of understanding – their acceptance of ‘the way things are’ – causes difficulties for autistic people. Those difficulties impair mental and physical health. It would be worth turning the impairment model of autism on its head by focusing precisely on the various ways in which ‘normal’ people make life difficult for autistic people by asserting the ways of the ‘normal’ world to be unalterable imperatives. I don’t paint at extremes here. In raising questions of reasonable adaptations and accommodations on the part of employers and others I have been met with the consistent response – employers and others don’t care and are not obliged to, you, as the autistic person, are the one on the outside and out-of-step, meaning that you are the one who has to make all the changes to fit society’s needs and expectations. This is the message people are told at every stage of life as they go through the process of socialisation. The issue of autism here is a complete irrelevance. Even with diagnosis, I am being given precisely the same message I was given at fourteen and fifteen. I knew it was wrong for me then, I now have
the diagnosis and AS report to back up my past judgement, but it leaves ‘the authorities’ unmoved. There, in a nutshell, is the problem.
It is indeed truethat life and its events cannot be planned with any degree of precision. Things happen, circumstances change, and you need to be flexible. Preparation and planning on the part of an autistic person doesn’t necessarily imply an attempt to freeze life and fix events. I will confess to liking routine and order, doing the same things the same way at the same times every day. I have managed to create a world in which I can do this. It’s a world of my own. It’s not the world that is ‘out there,’ and can never be that world. The extent to which the real social world can frustrate and contradict your best laid plans is nothing less than dispiriting for people for whom the slightest of changes can feel like the world is ending and it is all hopeless.
People need to bear in mind just how chaotic and exhausting the world can be for people who lack internal filters and editors. Autistic people have to process the mass of the world’s information at once, withan immediacy and instantaneity that is overwhelming without plans and preparation. Life can come at you like a succession of tidal waves. So people don’t need to be told that life frequently – and usually – runs contrary to plan. We know! We are very sensitive to the contrary nature of life and its events, being on the receiving end of it constantly,feeling the smallest of infractions to be world-ending. If I had a pennyfor how many times ‘experts’ have told me in response to my planning and preparation that ‘the real world isn’t like that’ I’d be a wealthy man. These ‘experts’ are doing nothing of any insight here, merely re-asserting the imperatives of the ‘way life is,’ the unchangeable reality that, from hard experience, we know disadvantages, debilitates, and ultimately destroys people in need. It’s Darwinian. Only the strong survive; the devil take the hindmost.
When the smallest of changes can be debilitating, dissipating energy like a drain, to tell people that ‘such is life’ is tantamount to saying we don’t care, life isn’t fair, and we are not going to change to accommodate you and your needs – the weak go to the wall. That’s not a warning or a prediction of the shape of things to come – that’s fact.
People don’t know and don’t care. Which is why I now insist on autism acceptance. We’ve done the awareness. People are aware, in that they acknowledge the existence of autism and autistic people. Nothing changes. I’ve pushed for changes, only to be met with the utterly accommodated telling me that there is nothing doing – the onus of responsibility when it comes to change is on you!
The view also misunderstands the role of planning and preparation in the life of an autistic person. It is not just a matter of attempting to control future events with all their unpredictability, but giving a person a sense of certainty and stability in an extremely uncertain and unstable world. Autistic people can be accused of rigidity and repetition in thought and deed, unable to deal with change and spontaneity, fearful of surprises. People who make these accusations need to bear in mind that autistic people seek routine precisely because they have to deal with the forces of changes and spontaneity head on, full force, without brakes, filters, checks, andconstraints. It is life experienced at its rawest and fullest at once. The people you accuse of being fearful are actually the bravest people on the planet, having to cope unarmed, in naked combat, with the hard facts of life and its living. So I will plan and prepare, I will expect warnings of changes in routine, I will insist that instructions be presented clearly, and repeated and written down, to ensure that they have been assimilated and understood. And I will condemn without compunction those who refuse to accommodate the needs and requirements of those who would thrive with just the tiniest of help and understanding. People already making massive efforts to survive would thrive if sufficient others
made just the tiniest of efforts on their part. But it is easy to simply state that ‘that’s the way the world is.’
The way beyond such impossibilities is to see planning and preparation less as an attempt to fix and freeze life and events than an attempt to familiarize with likely eventualities, giving you an idea of what to expect, and something to hold on to when the unexpected does indeed occur.
It’s not that people don’t listen, because they do. It’s not that people don’t know, the knowledge is out there. The problem is that people don’t understand, for the simple reason that they don’t care or don’t know how to care in the first place. They can’t afford to care. Resources of all kinds are scarce and people of all kinds are involved in a desperate struggle for survival. They have little to spare for those who are most in need. You are on your own. There is a need for autism advocacy, an autistic grassroots and an autistic ‘society’ to take care of the big issues. People have quite reasonably asked for help and accommodations. Much too little has been done. That should not be the occasion for abandoning the reasonable case for adjustment to autism, but for buttressing it with self-organisation and self-initiative. Who else if not you? The appeals have been made to people who see themselves as mediating between need and reality, between demand and its denial.
'Difficult?'
Try living with half of the difficulties autistic people have and see how easily you cope. The accusation of being 'difficult' is not merely uncomprhehending, it intensifies the pressure that falls upon people to silence their pain and reconcile themselves to their misery. In time, people stop raising their voices, for the reason they don't expect to be heard. We see here the old lesson that every time a person raises an issue to be addressed, that person becomes the problem, not the issue. Always, the emphasis falls on the person, shielding the things to be changed from criticism, scrutiny, and alteration. I shall remain 'difficult.' Although I have little to gain by this stage, I have nothing to lose, having lost it all listening to the advice of uncaring, uncomprehending compromised and accommodated experts and authorities. What do they know? That 'that's the way things are.' Like we didn't know.
