What did diagnosis bring you?

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If I was able to cope like I did 20 odd years ago, I would probably not want to be assessed other then to understand things a bit. But as I have been the last decade or so... Especially the last three years, at times I struggle to walk when I get so anxious that it robs me of my energy. (Only a couple of days ago with the help of Krafty have I found it was anxiousness which is what I am getting, and is why I am getting partial shutdowns etc... Could be also stress but stress... I know when I am stressed but of itself, stress is hard to define the feeling... I sometimes get no indication of stress until I am way stressed out... Uhmmm.Not easy...

I get it. Sometimes it is hard to describe how I feel. People ask it all the time, and then I am irritated, because they really don't care and want to hear how I feel. A lot of times I think I am not quite sure how I feel and it can change pretty rapidly. I have definitely a tendency to catastrophize and always think about the worst possible outcome...

I have a hard time acting and looking happy, people usually think I am upset or serious or not having a good time. A lot of times it is just "neutral" for me.

I think it was Tony Attwood who said a diagnosis is like a signpost. A signpost directs you somewhere, but it's a useful thing on and of itself

I was diagnosed and joined WP six years ago today. I look at it as a second birthday. The biggest thing it brought me was an explanation. It told me who I really am. It revealed why key decisions that effected my life were made and why a lot of life turned the way it has. Just knowing what I thought were character flaws were a combination of way I was born and others and my own misperceptions helped a lot with my self esteem.

After my diagnosis I have had major physical and medical issues. The explanation helped avoid pitfalls when I could and when I can not the self esteem improvement and explanation help me deal with and recover faster. If I was not diagnosed I don’t think I could have survived the medical maladies mentally.

Diagnosis bought me.....to a brain-injured nursery school....

Diagnosis allowed me to make sense of my whole life.

After diagnosis, I was able to say to myself, "Holy! s**t! THAT's why I had no friends and why people always said I was weird!"

The problem then is the, "Now what do I do next?"

Diagnosis allowed me to FINALLY forgive myself.

Relief. Peace of Mind. An "Aha!" moment when I suddenly realized (1) Why all of the crap I had been though had been so difficult, (2) None of it was really my fault, and (3) My detractors were all wrong when they said that I was a failure, a loser, someone who would never amount to anything worthwhile and who would die a lonely death.

"What did your diagnosis bring you ? Did it help in any way with the problems you were copping with ? Did it help finding a better « path » in life ? Or having less anxiety about the one you’re already on ? ... If you could go back in time, would you go through the all process of diagnosis again ? What would you say to a somewhat-happy un-diagnosed asperger ? (Or if I am not- to a somewhat happy anxious human being with a weird dad and brother) Is it worth oppening the « pandora box » ? Would you be able to live with yourself on the long term, not knowing « what » you are ? What did it bring you, the fact of knowing « what » you are ?"

I am relatively new to WP, undiagnosed and, though I have always been aware of what today are regarded as AS traits in myself and in my background, not quite confident in my own mind until recently that this was my problem.

However, late in a life lived quite well and at senior executive level by the standards of many less fortunate Aspies, I find that all the key spheres of my life: family, marriage, career and academic, have broken down for much the same reasons.

I had lately been concerned about my health, too. But I think this was just the 'smoke over the factory' and that the common denominator here is the same: there is just a lot about the world that I have not been 'getting', and when you stop moving fast you realise that you are presently, and have always been, just breaking things.

It's a shock, this epiphany. All this time the rationalisations I had in my head bore no resemblance to what was motivating even people very close to me, whom, despite myself, I find I had trusted and was vulnerable to.

So, though I can't tell you what formal diagnosis has done for me, I can tell you what the early absence of it has.

And, though I am more self-aware now than I ever was, I am neither equipped nor disposed (perhaps these amount to the same thing) to fix the damage, even if I could, and that is a source of profound regret.

My life is like a sequence of those intricate, schematic drawings I spent all day working on as a child (my father, grandfather and great grandfather were all mechanical engineers - I am not), only to destroy in moments of imagined warfare.

In these more 'woke' times, I have to assume that a little more self-consciousness earlier, perhaps a few pointers and rules of thumb to avoid obvious pitfalls, and judicious sharing of the diagnosis with relevant people, may have made all the difference.

At senior executive level, just like with any close, personal relationship, it is all about getting the nuances, subtleties and body language right. If your face doesn't fit you may get ostracised or set up by experts and not know it. That's fatal to all you have earned.

At the very least a formal diagnosis may provide those close to you pause to give you a break sometimes and for you to give yourself a break, too. You'll also get to master some rules of thumb and set-pieces to help you navigate.

This is important because otherwise these cumulative, bottled up, mutual incomprehensions and resentments fester and do silent, often irremediable damage.

By way of analogy, as a parent, I can say that one of my greatest regrets is not spotting sooner and getting properly diagnosed the dyspraxia and dyslexia which impeded my younger daughter's education.

I was overseas for much of the relevant time and, although I like to think I was close to figuring it out, it took an unusually inquisitive and diligent teacher do so eventually, when my daughter was in her late teens. She subsequently received top specialist attention and formal diagnosis (there was a long queue, and it was almost invariably private).

Apart from the relief of putting a name to the problem(s) and explaining many oddities, the remedies were often simple, well-tested, pragmatic and effective. Again, by analogy, much of the solution was presenting things more clearly, clarifying the context and 'rules of the game' and aiding her proper perception and execution.

She has made up a lot of ground since diagnosis (she is doing a Masters and gets extra time on exams etc.,). However, though I am prouder of her in many ways than even my two other successful children, nothing can make up the inexplicable hurt she must have felt, left behind by her siblings and peers and somehat scorned by everyone (at least those not in awe of her fearlessness, right arm and formidable athleticism).

Like Aspies, those suffering from these other syndromes overcompensate and dissemble extraordinarily well, which can be part of the diagnostic challenge. There are plenty of anecdotal parallels with what's in these forums in abundance, and in retrospect it's often all too obvious.

For example, I used to read to my children and have them read back to me. Sometimes, inexplicably, my daughter would 'read' a word that made sense but bore no direct relation at all to what was written on the page.

Actually, it turns out she could barely read any of this stuff at any normal speed, but did not want to disappoint.

So she was simply memorising it all and now and again got a word wrong on 'playback'. Spectrum indeed.

In late life, having returned to an Ivy League university myself to research something I know a lot, and am passionate, about, I have gone through a very surreal experience, which has ended up with me being effectively kicked out through no fault of mine; although it has been handled in such a way that it looks like my own election.

Again, in retrospect, I was subject to sustained systematic resentment, isolation, obstruction and withholding of appropriate supervision and support which, again, it took me years to properly twig.

But, having done so and now even 'won' pyrrhic, formal recognition of, and modest compensation for, these wrongs, I am disinclined to go back for more of the same. Just like the sequence of incresingly senior jobs I have held for shortish periods; during which I have been instrumental in effecting turnarounds, for which I got no credit.

This, as I say, has been the pattern of my life. I spend years building something to my satisfaction that makes sense to me and then dash it, as my heart goes out of it when I realise that I have not carried along those I thought I had and that, in fact, those other people I thought I had some sort of connection with are far from my friends at all.

So, I figure that it's better to 'take the red pill', early.

And, even if you don't immediately find out more about how the world you find yourself in works, at least you'll know more about what's behind the face that you present to the world and how it may differ from the faces that you meet.

Hello and welcome.

"Necessary" wouldn't be the proper word for me. The diagnosis helped enlightening many of the doubts I used to have, that's for sure. If that helped my life in practice, not really.

This doesn't mean I would like to go back to where I was many years ago when I had no clue about the problem, though.

One lesson learned is, the less I talk to other people about ASD and my diagnosis, the less problems I have. Even if the other end already knows or is suspicious to some extent about me having ASD, it's best if I keep my mouth shut. Because... they may suspect that I'm an eccentric, even a lunatic, but if I open my mouth, they *will know* for sure that I am all that.

ARX. It is sad that those work collegues were found not to be friends.

Ok, I find making friends hard. But something I really noticed. While I never made it to the top of any of the fields I worked in, I did go to a certain level where apart from a few really nice genuine people who are the exceptions, I did find that the further up the ladder one went, the worse the integrity and genuinness the people actually were. And yes. There are many exceptions to this and those exceptions deserve every penny they earn. But sadly, I saw so many really genuine people that I saw who are never rewarded for the work they do and often find themselves giving hours away with no pay because a senior "Go getter" forces them to give their extra time for nothing so the "Go getter" looks good and gets promotion.
I very much noticed that the very top positions were nice people and the very bottom positions were also nice people and the inbetween positions were where one found a mix of a few genuine ones but a lot of the leeches of society who would get away with doing anything to promote themselves to the top. I reasoned that either the genuine one would make it to the top because the rest hated each other and could not agree on promoting each other if it were put to the vote... Or the one that made it to the top was not that nice a person but changed when he or she realized that they had no one to fight against... I will explain more...
I have been involved and met people from all walks of society through my Christian links. I have heard the stories of countless people. I therefore heard of cut throat type people who then made it to the top... Where at the top they started asking the question "What is life all about?" and ended up abandoning the fight and surrendered their lives to God. And it is not just at the top of various companies that I have heard the same stories. I have heard similar stories with out and out criminals who had spent their lives working their way up to be the heads of gangs who were in and out of prisons.... Who then started asking themselves what life was all about and surrendered to Jesus Christ and they are totally reformed and changed people.
Several months ago we had one of the most gentle men I know in our house. Yet, he used to be a very hard man where he turned to Christ while in prison where he was there because he had killed someone. Yet he changed!

So to conclude... Hearts of most people who I call easily led, are steered by their greedy desires. On this site I find the opposite to be true. There is something about autistic people where by nature are independent of being molded into the cruelty that their surroundings dictate. I find this an amazing quality where their integrity is just. Yes, there are exceptions to those on the spectrum and those who are not. And I am still waiting to be assessed myself so I don't know where I fit though it does look like I am on the spectrum somewhere...

But I have never met such a caring and genuineness as I have seen by joining this site.

But to sum up though. I have found more really nice genuine people at the bottom of the ladder then further up... And this is sad.

I really welcome you to this forum. I think you will enjoy it, and I very much expect you will find some really good friends in here.

Sorry to jump in at this point in the post, but might I possibly suggest offering to speak at various local events which are "parents of kids with autism" themed?

I've been to a couple of them, and one of the issues I keep running across, particularly from speaking to parents of newly-diagnosed small children, is that the parents are incredibly scared of what the diagnosis might mean for their kids' lives. The parents generally have little to no education about autism, and tend to assume the worst - that their kids will never have a normal life, will never be able to take care of themselves, that kind of thing.

Having someone get up and say "Hello, I have autism and I've been successful in life doing completely normal things", and maybe talking a little one-on-one with people later, can be an enormous relief to parents, and give them perhaps the first strand of hope they've had since the diagnosis. Just being able to see a living example of someone who has the same thing their child has, but is able to live well, hold down a good job, and appear socially "normal", can be a huge weight off their shoulders, and may mean they're not constantly pressuring and hovering nervously around their child for the next ten to twenty years.

While I haven't been an official speaker myself, I've worked the crowd at such places, assuaging fears and providing solid proof that their kids haven't just been handed death sentences, or even a sentence of life in a special needs workshop. I can't be everywhere, but I can at least help a handful of people.

Mountain Goat, I’m very grateful for your response. Thank you.

You make some profound points, which I think in many ways go to the heart of higher functioning spectrum disorders and how they both inhibit many of us but also enable a critique of NT society.

Personally, I’ve been a loner all my life. The story of my teens, I suppose, was that I made a virtue (or vice?) of it, for want of an alternative, stuck to my books, and haven’t looked back since.

Consequently, I am no stranger to solitude and, though I think I’m much better at genuinely interacting on a personal level today, I certainly have no problem with being alone and may even seek it.

However, I fear I have become quite withdrawn over recent years and, looking back now, it all looks a lot like ASD, (or ODD? or something else?). Which is one of the reasons for joining the forum.

It was pursuit of remedies for serious corporate governance issues that I have encountered which brought me back to university to research the topic late in life.

So, it was a bit of a shock to run into precisely those same governance conflicts in doing so, which have ultimately sunk this endeavour. And, no doubt, I have rubbed important people up the wrong way, by being a bit too candid, as I frequently do.

Governance is a bit of a passion for me, like Christianity is for you. My experience is that almost anyone can do almost anything if they are properly trained, supported, motivated and empowered. People who think education is about sieving out a finite number of rough diamonds from the dross have it wrong. It’s a convenient, self-serving fiction. Diamonds are made. And how to make them and gainfully employ their talents is where our society is failing.

My kick is figuring out how to minimally structure organisations to give the people with the most expertise and knowledge of the relevant environment command of process(es), with just sufficient governance to keep the operation viable in pursuing stated goals.

Hierarchies are for armies. This is about fulfilling people by having them bring all that they can (or wish to) to their tasks. It is how any living thing works (it doesn’t pay to overthink our breathing and we can do little to control our heart rate – they look after themselves). So, my flavour of governance is not about ‘box-ticking’, it’s more like the Bolton-Watt steam governor; just doing enough on a timely basis to maintain overall organisational equilibrium.

Because I am able to function well enough socially it is easy to forget, not least for me, that I might sometimes be missing something. I get that odd nagging, gut feeling that something is not right, but it can sometimes be ages before the penny really drops and I manage at last to decipher what has been going on around me in some respects. I feel a bit like the guy who suddenly gets the joke, and this is odd because I’m regarded as reasonably astute in other respects.

So, when I say these people were not my friends in my line of work, I don’t say it with any sadness so much as a statement of the blindingly obvious, which only familiarity had caused me temporarily to forget.

You are so right in many of your observations. I have attended eight universities in my time and I have noted that at the most prestigious ones it’s dog-eat-dog. People almost go out of their way to be obnoxious sometimes; even despite themselves. Whereas, at lesser schools, there is a much more congenial sense of all being in it together. It’s the same in business, and no surprise that people at the top have the space to reflect and allow their personalities to luxuriate, whereas elsewhere it can often be perversely knifey. It’s all very unnecessary and wasteful.

It’s easy to make inadvertent enemies in these circumstances because ASD can look a lot like narcissism or some other disorder common in these fields (I may even have one or two of these for all we know) and people draw the wrong conclusions.

By the same token it can be difficult to keep genuine friends if one is not exuding the right signals, and making some real missteps, even if the heart is willing.

I won’t pretend to have found God, but I do have a very pronounced sense of right, duty and justice – even down to trying to leave things better than I found them, instinctively living small and minimising my ‘footprint’. I think it’s an autistic trait. And that’s why it is often so perplexing that society does not work the way it says on the bottle. It’s the gulf between what people say and what they mean that classically catches ASD folk out.

So much of ascending the corporate hierarchy is a patronage exercise. Your face has to fit. You get given easy projects to prove yourself or ‘hospital passes’. It’s often a ‘your turn to shine’ culture in corporate life, which just makes no sense. If you have a lot of great ideas and things to say it shouldn’t matter whether you ‘have the ball’.

This is why, I suspect, ASD people cleave to, and thrive in, technical roles, where they’re there because they can do something that others just can’t; not for their lightning repartee. They can just get on with it.

Coming back to the OP’s post, knowing yourself and better matching ‘horses for courses’ in your life, job or career is one great reason for getting a formal diagnosis now that it is more commonly available.

I'm delighted to be part of the community and hope it may be mutually useful.

Hello Raven, It’s great to hear from you.

I would be glad to help, but I think I would feel a tremendous fraud among people with real challenges.

And, perhaps, more to the point, it could be counterproductive, because people might not feel that I was like them or could empathise with their problems at all.

My struggle is just selfishly trying to make sense of a pattern of oppositional and self-sabotaging behaviours to which I attribute the rather odd predicament I find myself in, despite quite a benevolent endowment and a pretty good life by most standards.

I may just have brought any issues I think I have on myself, which is not a good example to anyone; and rather self-indulgent with it.

More importantly, my issues may or may not be down to ASD, or ASD alone, as opposed to some cocktail of other hang-ups. As I say, I don’t have a diagnosis; just a shrewd surmise, joining the dots.

My daughter’s experience is another story. But, even then, it was not ASD and she was not so challenged that it was even easy to spot and, while I don’t diminish her problems, I wouldn’t presume to compare them to those of many others on this forum or elsewhere.

And I’m not sure people would necessarily derive much inspiration from my story. I may just get their backs up, and have them feel I’m taking the mickey.

Even ordinary NT folk can tend to find me a bit polarising. Because I went to a good university and lost my accent many think I’m some privileged toff from a private school even though I grew up on the edge of a council estate in a deprived area, didn’t pass my 11+ and went to the local secondary modern.

Unfortunately, these are things it pays to keep to oneself almost as much as possibly being autistic.

First passing external exams and then excelling in others was how I got any idea that I might actually be worth something. It was the upside of a lot of time spent alone, and dissatisfaction with negligent education. But I was brought up in a home with books and professional parents. So, I have no chip on my shoulder or cause for one. I’m very lucky.

I can only imagine what parents with real problems on their hands might make of me and my story.

It could be like: ‘this guy did OK, so what’s wrong with you lot?’, which is not something you or I would want to be part of among parents of children who can’t look people in the eye or hold a conversation.

Not least because I haven’t done so great in various aspects of my life lately. So, it’s actually a case of ‘Dr heal thyself’!

Let’s keep in touch and compare notes, though.

Thank you for the reply.

I joined this site four or five months ago after a lifetime of trying to fathom out what a re-occuring health issue was, where doctors in the past had said it was "Some sort of allergy" and yet for nearly 30 years I had been asking for allergy testing and it took a change of doctors surgeries before I had the basic six point test (The most common allergies) which came up clear...
Well. One thing led to another until I eventually saw some sort of vague connection in my mind between what I experienced and meltdowns... Even though they were nit the same... And it eventually happened that also I had another few leads where I'd had several people over a few years tell me they thought I had Aspergers syndrome... (Which I honestly thought most of them were joking and the one person.. Well. He was convinced... And I thought he had gone mad!)... ad then I happened to date a girlfriend who has Aspergers syndrome and her son is autistic... And though her son was noticeably different, she seemed "Normal" to me in almost every way. When I asked her what aspergers is ad how it effects her, apart from two things she said, everything else she said was no different to how I thought or felt. I just could not work out what the condition actually was. She then had me sit a simple online test where I was just inside the "Autism" side (I had answered "No" to technical questions that I didn't know what they mean. Since redone the test to find myself much further on the autistic side as I now know what the technical words mean and have thought a lot more about my life).
The basic test said to "See a doctor or a health professional". It took me two years of trying as when I went in for another issue which needed several visits, I tried to ask if I had aspergers syndrome but every time I tried to ask I would clam up with mind blank..

Then from these two directions of trying to find out what was going on with me medically speacking which I later happened to find out were partial shutdowns and shutdowns... And then I happened to look on YouTube about faceblindness (Both my Mum and I have the condition) and one link was "Ask an Autistic". I had been avoiding looking, but after exhausting every other link on the subject, three days later I clicked on it. The young lady said something which hit me. She said that 60% of people with faceblindness were on the autistic spectrum. This then made me determined to find out if I was on the spectrum because I was really hampered in life by this "Mystery condition". I was often caught between not being able to work but not being officially ill so for years I could not sign on or get a proper job. I was stuck with part time low hours minimum wage temporary jobs once or twice a year because that was all I could cope with, and was selling posessions the rest of the year to pay bills.

I was then determined to ask my doctor if I had Aspergers syndrome. I also had a hunch about a similarity between what I experience ad meltdowns. (I had not heard of shutdowns). Knowing I was likely to clam up when speaking to the doctor, I brought my Mum in with me! (My Mum didn't think I had aspergers but I am convinced that if I am on the spectrum she is as well! ).
I went in expecting a "Yes" or a "No" answer.
I couldn't really say much in the way of symptoms... I have to talk around to the point rather then straight to the point to avoid clamming up with mind blank. The doctor (One I had not seen before but one with a reputation of being very direct and straight to the point) heard about the faceblindness and said "So?" and I started asking if what I had were meltdowns and she said "Definately not" and as I had asked her if I had aspergers,she said "Symptoms?" (Just one straight to the point word at a time!) and then I clammed up. My mind completely stalled!
Fortunately my Mum spoke and told her the difficulties I had had trying to work. I have never been sacked (I am a real fighter trying to struggle through but with severe burn out consequences) but often had to quit jobs when the shutdowns had got too much.
The doctor doubted I would be accepted but applied for me to be assessed. I was accepted. But I still wanted to know if what I experienced was related to aspergers/autism etc.
So I joined this site to ask. And that was in May this year. Since then I have learned so much and the last time I worked I was struggling so much, that when the job ended where I was in a right mess, I had found out the autism people had an open day, so I went to ask if it was partial shutdowns I was having... When I got to speak to the autism people, I suddenly realized that they knew what I was talking about, and then, for the first time in my life, it was like a tap had been opened and I was able to open up and explain how I had been trying to survive etc.
They then sent a letter to my doctor who had me in, and gave me a sick note... Which I needed help via a family friend who has a job helping people negotiate the online system... and now I find myself claiming a benefit. I do not know what I will get as it is early yet... But anything is better then nothing. So even if it is just for a couple of months, it allows the pressure to be lifted from me... As I have hit burnout after burnout, so the last few years the decline in what I am able to do has been quite noticeable. I am at the stage where I am unable to workat the moment and it has hit home.

I hope I can recover so I can do things again, and I am not one to give up hope. Haha. Ok. I don't expect to be wealthy. But I need some hope so I don't stagnate.

Hello Mountain Goat. It does sound as though you’ve been through the wars. It’s a story that must have resonance for a lot of people here; not least the OP.

And it does tire me when every website provides some glib disclaimer that if in doubt you should ‘see your doctor’ etc.. As if that would necessarily solve everything.

Unfortunately, medical services tend to be about money or triage. If you don’t have the first then it tends to be a matter of “Good news, Sir, it’s serious!”, because if it’s not something recognisable, urgent, life-threatening or straightforward then, like a lot of people, on the spectrum or otherwise, you may just be left in some sort of protracted limbo, or given some pills to go away with.

Bless them, if they’re not actually dismissive, then doctors often don’t like you to leave entirely empty-handed. I’m shocked at the proportion of the UK population that is on pills for depression and a lot of them are probably understandably depressed only because they can’t get answers. Public services can be pretty bad at hand-holding and psychological support - unless some tragedy has wised them up, and then it can be excruciating.

And, if you can’t quite put your finger on what the problem is - an awful lot of significant things can be surprisingly hard to communicate persuasively in a busy doctor’s surgery – then you may not get past first base. So much of it is a lottery. Is the person you consult the right person? Are they paying attention?, qualified?, interested? Is today just a bad day? We may only get one shot, and not everyone can see Prof. Simon Baron-Cohen. Do we feel lucky?

Public provision for burgeoning special needs and other chronic problems is systemically flawed and inadequate. And it doesn’t help that the job market for most people can be a picky, prejudiced and pitiless place.

These are some of the things that certainly bring out what I think may be the Aspie in me, to want to sort it out, tidy it up and make it work. This ought to be a win-win proposition for society: help people to lead richer, fulfilling and more productive lives.

You have to have some sympathy with the medical services though, because Prosopagnosia (face-blindness) and Alexithymia (emotion-blindness) can be hard to spot, even in ourselves. If you’ve always seen something one way it’s hard to know that other people see it completely differently, and this applies to doctors and their patients, too.

For instance, I was 21 and had driven in the UK and US before I realised I really needed glasses! If a simple safety-critical vision defect can slip through, then how much more tricky are many borderline autistic spectrum disorders? Oh, I could read a number plate at the requisite distance, but it was a revelation when I got my first glasses. Suddenly I understood why my old art teacher had criticised my observation of cloud effects and why it was that photos always looked so much crisper to me than the real thing!

It really isn’t that hard to get an eye-test, but first you have to know that you need one. On the other hand, it is not that easy to accept that you need a psych-test, let alone get one or even know which one you need. And ASD issues are not always as straightforward as noticing that your friends can tell you which number bus is coming before you’re quite sure it’s even a bus! Then there are all the stages of ‘grieving’ to go through when you finally get close to having a diagnosis.

I thought I had read quite a bit about autism over decades but until you mentioned it I don’t remember hearing about ‘shutdowns’, and now I come to look it up it strikes a childhood chord with me, too.

It really shouldn’t be this hard. I am delighted that your almost chance encounter with some people at an open day who knew what you were on about provided not just an epiphany but some tangible, if transient, help. But what a palaver! And what about all those years spent wondering?

Thank you for sharing your experience. It ought to encourage the OP, and anyone else, who has misgivings about pursuing their enquiries and diagnosis to redouble their efforts, for their own peace of mind and to bring practical changes to make their own lives and those of their loved ones clearer and a little easier to cope with.