Fight, Fight, and Fight again!
In one of the anxiety classes I once attended I was told that life and its living are is all about the three Fs, two of which were central to the lesson about to be delivered – flight or fight.
You can live your life in flight, exhausted by the hopelessness of the seemingly constant fight.
Far too often for autistic people, life is lived to the exhausting beat of fight, fight, and fight again.
You’ve just been diagnosed autistic ... now get ready to fight for everything, and I mean absolutely everything and all of the time. The fight is never ending. You can flee if you like, but it will leave you short of the things you need. You may flee in fear at first. Having conquered that fear and sought to confront the obstacles standing in the way of happiness, you may eventually end up fleeing again, only this time in despair.
I had such high hopes for my AS Report. Looking at it now, though, all I see is a piece of paper containing things I already knew – things I had told my diagnotician – and a list of links and contact details for me to pursue at my leisure. I thought that that information would result in doors opening; I found them to lead to further fights, further misunderstandings, further false expectations, further stress and anxiety.
Here is how it goes: you obtain the diagnosis and then seek advice and support, only to realise that the onus is all upon you to do the research and then push for help. Other autistic people are often your best resource, although they often have as little power as you and are absorbed in the same struggle. The right help is wonderfully life-changing, so long as you know where it is and how to access it. The problem is that you don’t; it’s like searching for a needle in the haystack. And your energy is soon exhausted.
It’s a sorry tale, and its constant retelling may serve only to reinforce a general feeling of hopelessness. I should make it a policy when writing on autism to indicate the way out that people are searching for. At the moment, I can only recommend that autistic people form self-help and mutual aid societies, making use of whatever advice is available, becoming expert in self-advocacy. Short of that, there’s nothing I can say other than be prepared to fight, fight, and pick yourself up off the floor to fight again. And seek contact with others in a similar situation. You are never alone, even though it may seem so.
My road to diagnosis came by way of my struggles with a constant, relentless anxiety. It’s been with me for a lifetime. I suffered a heart attack and learned the lessons taught in my cardiac rehabilitation classes well. The anxiety continued and a couple of years later I was taken to hospital by ambulance with symptoms of a heart attack. I was cleared by a series of tests over a period of months. I was determined once and for all to get to the basis of the problems afflicting me and described it as a ‘psycho-social anxiety’ to my doctor. She listened patiently. She had already had me participating in an online anxiety class as the physical tests were undertaken. The classes were informative but didn’t touch the underlying problem. My doctor then, very tactfully, brought up Aspergers, telling me to follow the links she gave me to see how far it made sense of my condition and to make another appointment with her in two weeks time. In time, referral and then, after a near two year wait, diagnosis came. I nearly lost my place in the queue, too! Talk about anxiety. I received notification of the beginning of assessment – two weeks weeks after my move to an area with an entirely different health authority. An appeal to put me to the forefront of a new queue met with zero response.
In other words, having identified a constant anxiety grace of an undiagnosed Autism Spectrum Condition, there was no relief, the very opposite.
But, finally, at long last, diagnosis was attained! All my trials were now over!
Or so I thought.
Whilst I didn’t expect a golden key to unlock all the doors hitherto closed to me, I did expect some change in my relations to the outer world, some understanding, help, and support from others. I tried to access help with respect to housing and employment, two essentials of life, and found only advice as to how best to help yourself – like I had never been told this before. I was told bluntly with respect to social housing that my autism was ‘irrelevant.’ I was also told that I would be considered ‘low priority.’ I responded ‘low priority as in no priority,’ and was met with a confirming silence. Employment was just as bad, just a rehash of all the advice that had consistently failed me in the past.
I went through a year of this, reluctantly reconciling myself to the horrible truth that there is no help or support. I wasted a year pursuing the false hope raised by the false promises contained in the process of diagnosis. A year on, I contacted the place of my assessment and diagnosis and was told that, ‘unfortunately, there is very little help and support available.’ All you can do if follow the advice offered on the websites of the Integrated Autism Society and the National Autism Society and take your chances in the open competition.
I’d prefer an honest enemy to a false friend. A statement of harsh reality would have saved me the time, energy, and good will I wasted pursuing false hope. The lack of help and support is bad enough, but the lack of guidance is even worse.
You are given a piece of paper containing a diagnosis and the promise of ‘reasonable adjustments’ on the part of others. Literal minded, I took the words to mean what they say. I have found that they are worthless. Employers will hire whoever they think can do the job with the least expenditure of time and energy on their part. In effect, you are given a report and told to go and first catch the wind and, having failed, spit in it. It makes no difference: no one cares because they cannot afford to waste their own time caring for a hopeless cause.
So the anxiety doesn’t go away, it merely moves on to another level.
Then there is the prejudice of others. I could be diplomatic and call it incomprehension. It is often well-meaning, as with people who express sympathy and solidarity by saying things like ‘we are all on the spectrum,’ – you are just as normal as the rest of us. In the first place, that’s just wrong, in the second place it presumes that autism is a condition to be excused in some way, in the third place it denies the individuality of the autistic voice. If ‘we are all’ somewhere on the spectrum, then ‘we’ all already know what any actually autistic person is trying to tell us.
Then there is the prejudice of the people who are not well-meaning, the people who treat you like a stupid child who is hard of understanding whenever they learn that you are autistic. I spent a year or so before and after diagnosis revealing my ASC to others in expectation of understanding and help. I received little understanding and even less help. Even with sympathetic others, I got the sense that they approached me as if I had something missing. With respect to certain others – and I had better not name names – there was a clear view that whenever things went wrong, it was all down to errors on my part. I’m glad to say that with respect to certain issues concerning alarms at the house, the source of the various problems were finally located and had nothing whatever to do with me. I received an apology from all concerned. In the first stages I was told that these things had never happened before, the clear implication being that they had something to do with me. The people concerned knew that I was autistic. Their first thought was that the problem lay with something I had done. Wrong.
Then there was my clash with my energy company. They would only deal with me on the telephone, even though I had told them that I struggle with telephone communication. I told the company that I was autistic, expecting that they would have a special line for dealing with special people. Instead, the attitude seemed to be that I was a bit slow and stupid and to be treated as such. Rather than listen to the objections I was raising over my energy bills, there was a presumption that I was wrong – instead of negotiation, the same unaltered message was repeated slowly to me.
I related my experience to others, who told me that lots of firms out there simply take the proverbial. I got in touch with Warm Wales, who took up my case and won it in no time. They went on the attack, accused the company of harrassing a vulnerable adult, demanded resolution of my complaint and compensation. I won a massive reduction in my energy bill and compensation for harrassment (the company called it a goodwill gesture – I thought it best to allow all concerned to preserve honour and move on).
Relating my experience to that of others, I’m forced to conclude that companies of all kinds hear that a person is autistic and rather than help seek to take advantage – charging prices that are way above the norm.
I have also learned that the problem of lack of help and guidance to newly diagnosed adults also pertains to parents of children. This lack of help and guidance for a child diagnosed as autistic continues when the child becomes an adult. Every fight is exhausting for everyone, including the non-autistic parent.
It’s a scandal and a disgrace. Help and guidance should be available and offered as a right of memberhip and participation in wider society as a functioning, contributing member. It is hard to contribute to society when you have to fight to be even allowed in in the first place.
And all that comes after the long and exhausting fight to get a referral and a diagnosis!
You take the fight on in the belief that, with professional assessment and official status, help and support of some kind will be coming and the fighting will ease and maybe even cease one glorious day. In time, you find that the end of one fight is merely the beginning of another. As hard as it is to believe, but long, hard road to referral and diagnosis was the easy part! It comes as a massively dispiriting disappointment to learn that there is no support to be had in light of diagnosis. The lesson is delivered slowly with every refusal that comes your way, as you turn from one place to the next in search of the help you thought was near. Every time you receive the same message – there is no help, no support, beyond information and advice that it is for you to assimilate and use as best you can. In terms of changes of behaviour on the part of others and society, there is none. This is a crushing discovery, for a number of reasons. As a late-diagnosed adult, I was someone who had long ago learned the various coping mechanisms advised by the IAS and NAS – that was how I just about survived for so long as an undiagnosed adult. They are useful to know, certainly. But I already knew them, and needed much, much more to be able to take my place in society as a rounded, functioning adult. Here, I was given more or less the same advice with respect to training, CVs, and interview techniques that are given to everybody – and don’t work for people like me. I was looking for special schemes or programmes offered by sympathetic employers. There is nothing, meaning that the talent and potential of so many autistic people is going to waste.
I did think that diagnosis would unlock a range of resources with respect to help and support, but found the same absence everywhere. I also found that I was never told that there was no help and support directly. I was expected to read between the lines – like autistic people don’t do – and conclude that the help and support I was seeking would not be forthcoming. Slowly but surely, by way of a thousand cruel cuts, my hope died. It would have been better had someone told me bluntly early on – we have nothing to offer.
Reading around the issue, I have learned that this is the common experience of recently diagnosed autistics. One way of summing up autism as a condition is as the continuing loss of innocence, with each loss being as painful as the last, possibly more so with the raising of false hope.
The fight is never ending. It takes everything you have and much more besides. If you are lucky enough to have family and friends, it saps their energy too, for the reason that they cannot avoid being drawn into your struggles. It takes everything you have to fight against the odds, and this when so many will be dealing with issues of mental and physical health. And spare a thought for those who were diagnoed late life, with all manner of mental and physical damage inflicted, or those who were never diagnosed at all.
I’m afraid that I cannot offer words of hope and encouragement here. To do so would be to sell other people seeking help the lies I was sold, raising false expectations which are doomed to be dashed. It is exhausting to have to beg time and again for every scrap of help, going over your painful story repeatedly, laying yourself bare as a ‘vulnerable’ adult, knowing that too many people will interpret ‘vulnerable’ as feeble-minded, weak, and infirm. I’ll speak for myself – I am strong willed, intellectually powerful, and physically capable; into my fifties I have climbed mountains, hiked tens of miles a time, and still play football (with and against youngsters in the prime of life!) I am not weak and feeble, neither mentally nor physically, but am treated as such once people learn I am autistic.
But if you are so strong, then why do you need help?
There’s the conundrum. There’s the lack of understanding as to what autism is. There’s the lack of cooperative others.
The frustration can become unbearable at times, reinforcing the chronic anxiety that harms mental and physical health.
The level of bureaucracy you run into headlong is frustrating. It would be frustrating for anyone, but for autistic people who may struggle with forms, instructions, and protocol of all kinds, the struggle with the bureaucrats in command of the resources you need is well-nigh impossible. Autistic people are expected to master the very arts which they are known to be deficient in – and if you can indeed master those arts, you don’t need the help you seek in any case!
The lack of insight on the part of those with whom you have to deal with is unbelievable. If you react and protest, you are deemed to be unreasonable, emotional, and difficult. I have learned to expect the worse and am seldom disappointed. The upset is the same, but I have learned to let it go, not least because protest and argument drains your energy, doubles your upset, and achieves nothing. ‘This is a fight you can’t win,’ said one perfectly accommodated place-sitter in face of my objections to the stupidity of the position I was being forced to expect with respect to employment. Basically, it doesn’t matter what you know and what you want, an institution can only offer the help it has, and you have to accept it even though it is useless. The members of these institutions are mere functionaries, offering only what they have and managing expectations downwards. They know the utter uselessness of their offers, but they don’t care – that’s their job and they are paid to do it. They have zero thought and even less compassion for the people they deal – they can’t afford to waste time and energy on futile requests. You may as well talk to a recorded message.
When I was little I read Alexandre Dumas’ Three Musketeers. Or read enough of it to justify another bout of sword-fencingwith my brother. In terms of the words, the bit I remember most of all is the quotation of the proverb: "The most beautiful girl in the world can only give what she has." The same principle applies to the most mediocre place-sitter and functionary in our perennially failing institutions and organisations. I’d rather have what the most beautiful girl in the world has, whatever that is (who is she, does she exist? I think I sat next to her in night classes back in the day).
Some of the conversations you have when trying to explain your needs to the decision makers and their minions are beyond belief. Those others are often almost totally uncomprehending. You have to fight hard to keep your temper, which is immensely diffcult given that the decisions of those others can make all the difference between thriving or surviving! Keep your cool, and you will be on the receiving end of a perfectly predictable list of the meagre and utterly inadequate help that is available; protest and argue, and you will be considered temperamental, non-understanding, and difficult. I used to protest the sheer stupidity of it all. I now read the situation and can weigh up quickly what help is being offered and what kind. When I encounter the same old stupidity I just ignore it – it’s all that this “beautiful girl” has o offer.
The fight is ongoing, and not just for autistic people but people with all kinds of vulnerabilities and needs. You are made to ask for everything, fight for everything, and jump through hoop after hoop all the way. You fight every battle knowing that you are in a war for life. You may not win every battle. In fact, you will more than likely lose more than you may win. But the wins will likely be big ones, enough to keep you going in the first instance, and maybe give you a life worth living in the second. Fight to win not only the battle, but the war. Hang on in there, keep your eyes on the prize that lies beyond the immediate battles. Some battles can’t be won; those battles are not worth the fight. I ask questions and probe beautiful girls now, to get some idea of what they have. As soon as I receive certain familiar responses, I know to switch off and switch attention. I keep my cool now, whereas in the past I would express anger. There is nothing to be gained protesting to those who lack the power to change things; learn to recognise futility when you see it, and change your own behaviour.
At the same time, be careful of concedig the fight too early. Sometimes, maybe quite often, institutions play a straight bat merely to test how much in need people are. There is an institutional presumption that those who give in quickly and easily can’t be so desperate as to need help in the first place. I found this in my recent scrap with my energy company. I was peaceful and reasonable in every exchange and my queries were promptly ignored. The people who then intervened on my behalf issued complaints and made demands, and the company yielded. Things I were told were not possible were suddenly granted.
It’s a depressing state of affairs. Once identified, an autistic person’s needs
should be automatically addressed in a supportive environment. That environment doesn’t exist – you are still on your own, fighting against impossible odds.
Rather than falsely raising hopes by supplying a list of links and contacts in the AS Report for people to pursue, it would be better for the newly diagnosed to be briefed as to what to expect. Rather than wasting time and energy in search of a help that isn’t there, frustrating and depressing people by dashing their false hopes, it would be better to let people know they need to do their own research, take the fight to the next level, seek compatriots in the autistic community (form a community if there isn’t one), develop a tough exterior, and keep the ultimate goal in proper long-term focus. I am livid at how much precious time and energy I have wasted seeking help from people and institutions who had little or no help to offer. It would have been better had I been told from the first that there is little or nothing out there. It would be best of all should autistic people focus their considerable talents and energies on establishing a common front, pooling and thereby expanding resources, building an advocacy and campaigning network capable of putting pressure on the authorities and institutions in command of resources.
A hostile social environment has been deliberately engineered from above in recent decades. It has been a deliberate political choice on the part of those committed to creating a more competitive and individualistic market society.
Society has been fractured into a congeries of discrete individuals, with each expected to shift for themselves in competition with others. Inevitably, this aggressive promotion of a competitive individualism hits the vulnerable the hardest of all, removing the social supports and stabilizers that such people need most of all. Hence the disappointment felt when seeking help, only to receive advice as to how best to make myself fit for the competitive struggle.
You are left to fend for yourself. Only the strong survive, the weak go to the
wall, and it is all their own fault for not making themselves fit enough to compete. And it is self-rationalizing drivel from first to last. I worked long and hard to make myself fit. I developed such a competitive streak that I rose to the top of my classes, both academically at university and vocationally at college. I have enough certificates to paper my walls.
Been there, done that, still bear the scars of the cruel isolation that comes with relentless study. You have to completely change as the person you are to get what you need. This is one world that the meek will most certainly not inherit.
You need to become hard and aggressive in order to ensure you get the help you need, or you slowly lose your way and your will in paperwork. You end dealing with everything by yourself. You end up being the competitive individualist who wins resources in the struggle with others. Which is to say that you are fighting the same battles you previously lost, only this time with greater knowledge and self-knowledge. Most of all, know which battles to fight and which to walk away from.
I can tell people that they will receive a diagnosis but that nothing will happen for them unless they make it happen. The fight in light of false expectations was so incredibly hard and frustrating. The sooner you learn how little help and support there is, the better. It’s an uncomfortable truth you don’t want to know in light of diagnosis, but it can save an awful lot of misery and frustration in the aftermath of diagnosis: the fight doesn’t end. The fight never ends. You are condemned to fight for everything forever; you have to fight for everyting you get. And it’s exhausting. Sooner or later, you can fight no more forever. If you are lucky, you will have retained or gained the support of family and friends who will support you. The tragedy of autism is that autistic people tend to withdraw and seek safe spaces of their own which they can control away from others. That leaves you vulnerable in a hostile, uncaring world. If you are given the chance of connection, take it and do your best to keep it. Because it’s a hard and cruel world for those who are all alone.
Autistic people don’t need to be told that the world is all about fighting. It’s not news to them. It’s what they have been doing their entire lives. Which fights are the ones needing to be fought, and how to fight them well, with a lean logic and economy of effort, is the knowledge that autistic people need to know.
