You are not alone in being on your own
I saw this meme and comment on the Autism-101 account on Twitter.
“There is little support forautistic adults. We are left to just fend for ourselves.”
I have spent my first year since diagnosis looking for support of any kind to help me maintain my independence and help me find a new job. I have found no support, zero, zilch, only ‘advice’ and guidance which tells you how to better fend for yourself. This has been profoundly dispiriting and frankly depressing. You spend a lifetime struggling against the odds, failing in so many things, missing out on a productive life and fulfilled existence, your few, if sometimes considerable achievements, earned by extreme effort and sacrifice. You finally, by way of a long, painful, and circuitous route, involving ill-health and diagnosis of one or more chronic conditions, receive a diagnosis of ASC. You feel that the mystery of your lifelong struggle has finally been unravelled and that doors to an easier and happier future are about to open. You go knocking on these doors, one after another, and find them all closed. You approach various bodies and organisations. The only support you find is ‘advice’ as to how to struggle better. You have to be joking. People diagnosed with ASC, especially the late diagnosed, have long since learned how to ‘struggle better.’ When I approached the Integrated Autism Society, I was presented with a ‘Star Chart’ spectrum, rating how well I was doing in certain areas. On point after point I was scoring 8 or more out of 10. I felt great, but somewhat puzzled. It was great to be rated so highly. I was doing all the things advisers recommend that people with ASC do. I was enacting all the recommendations before they had even been recommended. Of course I was! If you suffer from noise stress to a pathological extent, of course you learn to wear ear plugs, head phones, ear defenders etc. It’s so much more efficient than going through life with your fingers in your ears! I was praised for this! I approached the IAS – and other bodies – in distress and in need of help. And I received praise for already doing the things that are supposed to help. In effect, I was being told to reconcile myself. You may be in distress, miserable, borderline depressive or worse, but that’s the best life will ever be. Have you ever tried Cognitive Behaviour Therapy? It’s backed by science and philosophy don’t you know, neurononsense and Stoicism. Just what I need. And it works. So say those unaffected by ASC and who approach the condition at safe distance from the outside. It can show demonstrable results,but only if you practice it 24/7. In other words, throw your old self to one side and become a new person – make yourselves fit!
Done it! Done it! Done it! I have spent a lifetime doing it! I have done it to death! I have done myself almost to death doing it!
Such advice amounts to saying ‘do the same thing, only this time do it better.’ Which, again, is the same old advice.
The greatest relief in receiving a diagnosis of ASC came with the feeling that I no longer had to pretend to be something and someone I am not. Those days are over, I told myself. It is bad enough going through life failing but there is nothing worse than failing whilst pretending to be what you are not. I really don't mind failing whilst being myself. It was a liberation. I felt able to face the world as myself, for the first time. I sought help and support and was advised to go back to pretending, performing, masking, and mirroring again. There is a terrible price to be paid for inauthenticity – unhappiness, bad faith, self-estrangement, ill-health. For what? A slight improvement in your chances of being employed in some job that is barely worth doing anyway. I’ve done these jobs. Employers don’t care. Nearly every time there has been no training. People are thrown in at the deep end and either sink or swim. You learn the hard way if you learn at all. People are thrown against the wall to see who will stick and who will not. I can get these jobs. I know how the game is played. I’ve played it. The challenge is to find the right job and to stick at t. They tend to be the better jobs, with employers selecting the ‘better’ people, those better fitted and with least demands by way of ‘reasonable adjustments.’ That leaves autistic people mopping up the rear. I was manoeuvred into applying for jobs that couldn’t be filled, and then asked to offer thanks and praise to those who did the manoeuvring. There is a constant turnover of staff for these jobs precisely because they are high stress and low pay, making demands on the nervous system that ‘normal’ folk themselves can’t cope with. And ASC folk are to make themselves fit to do the jobs that others can’t and won’t do. Six months on from a job cleaning ladies’ toilets, I’m still angry. All I can say it that these were several classes above the gents. All my skills, interests, and qualifications were ignored so that an employment agency helping people with health issues could shorhorn me into a job and get paid by government. No wonder I did my level best to stay out of ‘the system’ for so long! My instincts were right all along. These people will drive you into despair! They are functionaries of the mad mechanarchy!
In asking for help and support Ihave merely been offered the things I’ve already been doing, and which I know to be insufficient. Then we come to employment. As above. The same nonsense as to how to present yourself to a prospective employer, how to mould and manipulate your image on a CV, how to perform at an interview, how to say all the right things and how to suppress and silence your real personality. In other words, a continuation of the mirroring, masking, hiding, and evading that leaves you accepting a half-life at best, accommodating yourself to something that is so much less than your true self. And the hopeless realisation that, with less than 15% of people who are AS in full-time employment, it doesn’t work in any case.
It’s when you ask the questionthat Kenneth Williams asked himself in his last diary entry that you either succeed in creating a new beginning for yourself – because no-one is going to do it for you – or you just give up the ghost: ‘what’s the bloody point?’
The only thing I would add is this: sites on autism are valuable in sharing the pain of hard experience, lessening the frustration and the feeling of being alone. But the continued confirmation of a helpless and hopeless situation does nothing to change that situation. As someone who is autistic, reading of others’ similar struggles and frustrations serves only to lesson feelings of being alone against the odds. It doesn’t actually change those odds, though, which is really what is needed.
The AS community first needs toform itself as a community, which is no mean feat given problems of communication, interaction, the diverse nature of the condition, the tendencies to withdrawal and isolation. A mutual aid society needs to be formed, with support and communication networks fostering self-help. A campaigning and advocacy profile needs to be built on that. And people who struggle to speak and to be heard need to speak in such a way, with such force and vigor, as to demand a hearing. But if people who are autistic could do all that … if … they would just join all the other talking and demanding heads mugging for attention in a public realm that is increasingly just white noise.
Search Me.
The conclusions I have drawn after a year with diagnosis is that various organisations and bodies such as the NAS and IAS offer plentiful resources on their sites and offer help in the form of advice. This is fine as far as it goes. But it does have the stamp of the ‘survival of the fittest’ about it, being of greatest help to those who are moist able to help themselves. Unless you are in the desperate state of dependence, unable to function in certain key respects, you will receive no actual help. Most, I suspect, will fall in the category of just about getting by, by way of making immense and exhausting efforts on their own part, unless they are lucky enough to have parents. The problems come when mum and dad are gone. Because society really couldn’t care less – people don’t have the resources to spare to carry any extra burdens to the ones they are already carrying.
So if ‘society’ is unable and unwilling to be the game-changer, somehow, it is people in the AS community who have to do it themselves. Because at the moment, autistic people are on their own and at the mercy of those with little help to offer beyond ‘advice’ as to how to struggle better, taking your chances against everyone else in ‘the war of all against all.’ The situation is not encouraging. The point was put bluntly to me by an employment adviser: if an employer is faced with a choice between someone who can do the job so long as certain adjustments were made and someone who can do the job better without any adjustments, who would he or she be most likely to choose? To which I replied that even if autistic people follow the advice being offered, they will still be at a disadvantage in the employment stakes. They are having to work two, three or more times harder to get the same job and do the same job. To an autistic person a job is like holding down two or three jobs at the same time, with the demands of communication and interaction often far more exhausting than the job one is paid to do. That’s exhausting. Hence the need for real help and support beyond advice. We know the state of play. We don’t need to be told it. We are looking for ways around it. Body-building your capacities to meet the competition may be realistic, but it imply confirms a situation of hopelessness and helplessness.
'What's the bloody point?'
It's a question I put to environmentalists and naturalists of various stripes and persuasions. I much prefer the blunt honesty of those who assert that nature is blind, pitiless, ruthless, uncaring, and indifferent to those soppy romantics for whom 'Mother nature' is benign, beneficient, and bountiful. I have heard autistic people described as 'evolution's casualties.' They offer their gifts and their insights, sacrificing their health and happiness, and are discarded, left isolated and ill-adjusted. Would you have it otherwise? People get used to their own peculiarities - it is what makes them unique. But nature has left you short, tasking you with having to triumph over adversity. And there is no point to any of it. Unless you believe in God. That's a question for everyone in an objectively valueless, meaningless, and purposeless world.
Either there is a point or there isn't.
I am what I am. Like it or lump it, take it or leave it. I would rather be alone than be with others without being myself.
