The Benefits of Diagnosis
I wasted a year and more of my life pursuing leads and links arising from my diagnosis of AS. The information provided at the back of the AS Report strongly suggested that various forms of help were available for autistic people, depending on their needs. And depending on their level of need. I found that, despite clear problems relating to full-time employment and hence income I was considered to be high functioning, as in functioning, as in 'if you are breathing, you don't need help.' A woman whose son had been diagnosed as autistic told me that the links at the back of the Report were worthless, as were the recommendations with respect to 'reasonable adjustment.' She said the appendices should be simply replaced with the advice: 'With your diagnosis you will be spitting in the wind: be prepared to fight, fight, and fight again, the authorities will place every obstacle they can in front of you, designed to deter you and wear you down, and reconcile you to the hopelessness of your situation.'
That pretty much sums up the social implications of the official diagnosis of Autism Spectrum Condition. I had thought the diagnosis and the Report and recommendations that came with it would allow me to access help, only to find that you cannot access something that doesn't exist.
I took this to a doctor and he rather patronisingly lectured me to the effect that the links at the back of the Report are their for your own information as to what autism entailed. That's not true. It stands to reason, given the nature of autism, that the help autistic people need most of all relates to the social areas of living. I have found, however, that the places where help is most needed is where it is denied.
But the doctor did at least underline one important thing about diagnosis – the invitation to self-knowledge. The leads and links at the back of the AS Report present all kinds of resources by which the newly diagnosed can read up about their condition and what it may entail. It is wise to inform yourself – knowledge is indeed power. With respect to autism, knowledge yields the capacity to understand what is and what is not within your control, and what you can do to manage your approaches and reactions to people, events, and social encounters. A lack of knowledge can leave an autistic person confused and floundering in face of life's uncertainties, a situation that is compounded by being at cross-purpose with others. The life of an autistic person is blighted by misunderstanding and miscommunication. Autism is a different way of processing information, entailing a different way of doing things and saying things; if it's not necessarily a better way, then it's not necessarily a worse way either – it may or may not be, it depends. In the past, without the first idea of what autism is, being at cross-purposes with others could cause a deep trauma. With knowledge I am now able to see how difficult it is for autistic people to reach out to others in social connection and communication, how intense the relation can be, as if merely talking to another is a marriage proposal; by the same reckoning I can now see why a breakdown in communication and connection can be felt deeply, as trauma even – it is felt as a betrayal of trust, a treachery, a betrayal. In the past I would brood over the issues for months, years even. I would replay events over and again in my head. I would analyse every word spoken from every angle, playing out every scenario, arguing every point over in my head in search of justification, validation, even reconciliation.
This is not healthy; this is to sink in the swamp of neurosis.
Having read extensively on autism I am now well-informed and, in myself, if not thereby socially, feel empowered. I have self-knowledge. I know where the problems arise, and I know that solutions are not always possible, since they depend upon others being similarly informed and prepared to change their behaviour. As ever, it is the social aspect of the problem that is the great variable, the factor that is not in your control. The lack of resolution can be frustrating, the injustice involved can be infuriating, and the severing of connection and the excommunication that often follows is never less than painful. But whereas in the past, lacking information and knowledge, I would be inclined to brood introspectively for an inordinate amount of time on issues and events, in the attempt to clear my name, I now hone in clinically on the problem, identify its causes, see what is required by way of remedy, and move on. What I decidedly don't do is take the weight of the problem on my own shoulders
Controlling what is within your power to control comes with the corollary of assuming responsibility only for those things you are responsible for. You are not responsible for others' insensitivity, indifference, ignorance, callousness, stupidity etc. You can state your case, you can advise, educate, inform; you cannot force people to listen and learn. You cannot educate those who refuse point blank to be educated, and you would be a fool to try; you cannot inform those who think themselves already well-informed – the people who already think they know best, the people who know all that they need to know (which is often very little, but all that is needed to lead a little life skirting surfaces in pursuit of vicarious pleasures).
It's galling, because the confrontation with such people delivers the hard, practical lesson that the changes that autistic people require on the part of others in order to be allowed to become full and functioning members of society are not going to be forthcoming. The injustice is painful. The slightest changes on the part of others can have the greatest impact on the lives of autistic people - instead, many simply offer an ignorant sympathy that reinforces the negative stigma associated with autism. Galling, as I say, not least because if you point this out, the sympathisers take umbrage and think you rude and argumentative. You can do nothing with such lumpen, leaden stupidity, merely keep delivering the right message tailored to 'the layperson.' It is best to avoid lengthy engagement with those who refuse to take a point.
In passing, I shall note how often this leaden, lumpen mass of recalcitrants – the people who resist education and information – adhere to the negative identification of autism without even realising the damage they do. Time and again they express their sympathies in terms which autistic people find deeply offensive; they express views which are based on the impairment model, defining autism as a lack and a deficiency. Such people sympathise with your pain and difficulties owing to your lack and deficiency, little realising that the biggest cause of difficulty in the lives of autistic people is the lack and deficiencies of the people with whom you have to deal in order to function well in society. When they see 'see the person, not the label,' they seek to detach the person from his or her condition as something that is a regrettable affliction, something best not mentioned, ignored. 'We love the person, not the sin.' In reproducing the negative stigma associated with autism, the 'ignorant sympathetic' cause autistic people to be constantly aware of their social deficits in relation to 'well adjusted' others, whilst relieving those others of their own responsibilities with respect to making space for autistic people in society. Such people ignore your gifts and abilities - especially when you are highly intelligent (it makes them afraid) - and focus on your supposed defects. That attitude causes autistic people to experience shame and fear with respect to the challenges they face, internalising social problems as their own fault, causing them to divert positive energies into sterile and destructive channels. The identification of autism as an impairment causes autistic peop;e to divert their attention away from their unique gifts and abilities which are the key to flourishing, and focus it on unproductive relations and a dead past.
I no longer revisit the past in order to re-write it in search of a happy ending. It's important to right wrongs and correct injustices, but in the real social world of others, not in your head. Take your knowledge, experience, and concern to the society of others, disseminate information, relate, connect, expand outwards with respect to those amenable to the message you seek to deliver.
Mountaineer George Mallory was once asked why he climbs a mountain: 'because it's there,' he replied. Autistic people are used to climbing mountains, they do it daily. They are so used to it that, when confronted with another mountain, they feel beholden to climb it. It's force of habit. The fact remains that it's often quicker to get where you need to be by walking round mountains. It's easier to open doors and walk through them rather than attempting to break your head through brick walls. If
the door won't open when you push at it, then try pulling. You get so used to life as a collision that when another one arrives you move to meet it head on, rather than go round it. Take on challenges, confront injustices, correct errors - but do only what can be done and waste no time and energy attempting more.
My point is that annoyance and frustration at the behaviour of others can generate a sense of injustice that is right but which can easily be misdirected and misapplied. Make your point, make your appeal, inform and educate, invite others into a mutual transformation, seek connection and support, expand outwards, avoid introversion, look forwards rather than backwards. And keep doing it. But avoid being drawn into unwinnable wars with immovable objects, simply to have the force and truth of your point recognized by those who are hell-bent on refusal. It is wasted time, talent, and energy when there are victories to be won elsewhere. Other people are more open to the gifts you have to offer.
If it leads to disconnection and excommunication, then so be it – it is healthy to be free of the neurotic: you cannot drag a swamp uphill, it will drag you down into the morasse in the attempt. The negative stigma attached to autism is something that has autistic people forever looking at their deficits snd blaming themselves for everything that goes wrong. It also has others happily shifting blame from themselves to autistic people – they are, after all, a bit 'funny,' lacking in something, and have the record of speaking and being 'out of turn' to prove it.
In light of diagnosis I researched autism deeply. I informed and educated myself as to what autism is, the issues that may arise in social encounter, how to channel special interests, how to navigate social interaction, temper communication, and most of all how to marry knowledge and experience. I can now look back on my past without the need to settle scores against unjust others. I see that people were as ignorant as I was. It leads to a certain forgiveness, not least of myself. This is useful when problems in communication arise in the present. Whereas in the past I would feel slighted and go over detail, large and small, to prove my innocence, I simply see that I've been this way before and feel neither guilt nor shame. Having informed myself with respect to autism I now have the ability to step outside of any problem and assess it objectively. Instead of the old time- and energy-consuming swamp of unknowing introspection, I am now cool, concise, and analytical.
Faced with a problem I now adopt this method:
Analyse issues and events coolly, using knowledge and understanding; ascertain the facts in context; ignore the ephemera of opinions, likes, grudges, and grievances; be judicious and discerning in forming a conclusion. If you are in error and in need of making amends, then do so. If not, then don't – never apologize for sake of smoothing over cracks and seeking to restore connection, it will be taken as an admission of guilt on your part, which you will be constantly reminded of when the negative cycle begins again - as it will, for the reason that the issue has not been properly addressed. That is a toxi environment - get out of it. Having concluded the affair, lay it to rest and don't ever revisit. It is done.
I can honestly say that I now handle issues, events, and people far better post-diagnosis than I did when I had no idea I was autistic. So the doctor was at least right on this – the links at the back of the AS Report are there for your own information, and it is always wise to be well-informed.
As much as I disliked the doctor's blunt declaration that the links at the back of the AS Report are for your own information (and are not doors and keys to a range of social help and support), he spoke an important truth.
That information allied to your own particular experience is a self-knowledge that is empowering. It's a gift and a capacity that
you may use wisely with respect to the things that are within your control. Problems will remain, but there is wisdom in focusing your energies on the things you can do, and in letting go of the things you can do nothing about.
I handle issues far better now than I once did. I no longer worry about clearing my name and having everyone see the truth. I learned in the past that the more you attempt to clear your name, the more it seems to others that you are guilty as charged. Strip everthing down to the facts in context; discard ephemera; don't add; avoid wishful thinking and prejudice; analyse with a cool, detached, eye; be discerning in your judgement; form a conclusion; act accordingly: get on with your life.
You either do this or you can beat yourself and others up endlessly over things you can't change.
I would suggest getting on with your life is more healthy, more enjoyable, and more entertaining.
