Better to know?
If you’ve been reading this blog for a while, you’ll know that I discovered my Asperger’s in the autumn of 2008, when I was thirty five years old.
Until that point in my life, I’d been plagued with feeling different from everyone else, getting into many scrapes of my own making that I didn’t see coming, and generally living in a high stress mode all of the time.
My discovery of Asperger’s, and my subsequent matching of its characteristics to my own personality was my real That Explains Everything moment.
I frequently wonder how my life might have been different if I was growing up today, with the reasonable chance that my differences might have been identified and diagnosed when I was still in childhood. Would my life have been easier or harder?
Let’s look at how it has been for me first:
My life has been lived under the almost constant feeling of high stress. As life has progressed and got correspondingly more complex, so my background stress level has increased. Tasks that a typical person would find to be not stressful at all – such as making a phone call – add intense peaks to my daily stress. Backing up my stress is anxiety. I’ve experienced this since at least my early teens, and it comes and goes in waves. This week I have it quite badly, but last week I was mostly fine. When bad, the anxiety can be crippling. A combination of it and the stress often leave me feeling dumbfounded just by regular life. I sit like a rabbit in the headlights of life, existing, but not really knowing what to do or how to behave.
You need to understand, however, that until a year or so ago, this felt normal for me. Whilst I knew that I was a little different in some way to most other people that I interacted with, I didn’t appreciate just how different I was. So, stress and anxiety felt normal – it’s all part of every day life for everyone. Isn’t it?
Life at work has always been a mixture of success and failure for me. When well guided, I work better than your average person, tend to get on with things without a fuss, and I’ve been well liked by various people that I’ve worked for for these reasons. When I work in a disorganised place, or for bosses who are underhand then I fare far less well. I’ve never been fired, but I’ve come close, and I’ve upset senior people at several companies with what I can now see were inappropriate outbursts. The problem is that I didn’t see them like this at the time. I’ve never seen the potential consequences of my whistle-blower-like activities in companies. I’m speaking the truth – what’s wrong with that? Bad times at companies also increase my stress and anxiety. So it goes.
In my personal life, I’ve been a serial monogamist. Without realising it, I’ve always dated women who could help take control of the areas of my life that I wasn’t very good at.
When I was younger, I held on for dear life to the romantic relationships that I had, and was desolate when they broke up. As I’ve matured (perhaps rather more slowly than a typical person would), I’ve become far more accepting of my responsibilities in relationships, and what I can realistically expect from my partner.
My dating methods have been unusual. When I was younger, it was always the girl that asked me out. I have always been sweet natured and queit and kind (although perhaps in an unusual way). I met my wife via an introduction from a friend and we text messaged first, before graduating to phone calls and then meeting. This took a huge effort on my part – effort that I assumed most other people had to use too to find a suitable partner. Without that introduction, there is a good chance, I think, that I’d still be single now, seven years later. I’ve never gone looking for love in bars, or using other typical methods that people use to meet other people.
I’m thirty six. I went to university, I have a wife, two kids, a house, two cars, and a job. I have a great deal to be thankful for.
How my life would have progressed if I’d been diagnosed with AS as, say, a young teenager:
Well for a starter, I doubt I’d have gone to university. University was expected of me, and hence I went. I didn’t enjoy it, as I failed miserably to make friends, and got though it only with the substantial help of a long term girlfriend.
I’d have decided that university wasn’t for me. So. No degree.
That would have meant that I wouldn’t have joined the graduate recruitment program of a large UK IT company, nor moved to London.
What would I have done for work? I really don’t know. I fell into the computing course at university more out of luck rather than good judgement. I toyed with chemical engineering and architecture first. IT suites me – but would I have seen that if I had been diagnosed with AS at a young age?
I suspect I’d have got a low paid, low status job – maybe a librarian or somesuch. Perhaps my work would have consisted of lots of reasonable short jobs.
I’d be stuck at home with my parents well into adulthood, because I doubt very much that I would have had the confidence to move out. After all – I’d been diagnosed with this big scary condition that made me vulnerable and easily led. My parents wouldn’t have wanted me striking out on my own in that condition, I suspect.
Relationships? I doubt there would have been many, if at all. A man in his twenties, living at home, with no friends, who perhaps doesn’t have a job, and who doesn’t socialise is going to find it difficult to find love. That isn’t rocket science.
And now, at thirty six, where would I be?
My best guess is that I would be living in a rented flat, with no career, and possibly not much regular work. I’d have made a few friends in the autism community, but I wouldn’t be married, and I’d probably have been single for many years. I’d be anxious and depressed, and frankly quite downtrodden and pissed off with the hand that life has dealt me. I would most likely get about by bus, having never learned to drive.
Frightening, isn’t it?
Life has been hard work to get to here, but it felt normal, because I had no expectations that there was really anything fundamentally out of the ordinary with me. I was different yes, but not that different. I got on with life, because that what you do – that’s what everyone does. I had expectations of living an ordinary life, and that’s what I set out to do, and ultimately did.
I genuinely believe that my life expectations, if diagnosed at an early age with AS would be very different. Everyone’s expectations of me would have been far lower, as would my own expectations. Even independent living would be a serious and hard to achieve goal. Life would be a struggle in a very different way to the way in which I’ve found it a struggle in reality.
–
The reason behind my thinking about all of this is perhaps not obvious, but has been knawing at me for a little while.
At times I see some of my AS-like traits in my own children. They are five and three right now. Would I wish them to undergo a diagnosis if it started to become clear that they fitted an ASD profile? It’s a difficult moral question to answer.
Based on how I think my life might have been different, can you guess which way I’m leaning on this right now, should it become an issue?
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16 Comments to “Better to know?”
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I don’t know about “guess”. A possibility would be to use all that you’ve learned, make use of the available information on helping ASD children, but steer clear of getting the actual label unless it should become absolutely necessary.
Hi Anna,
Yes – this is pretty much how I intend to play it, should I need to.
I do of course worry about the possible backlash if/when my children grow up and make their own discovery.
I was angry with my parents when I first realised. How could they not have noticed?
For now I shouldn’t be worrying, as it isn’t really an issue.
James,
Reading this post is a bit like looking in a mirror. I was about 37 when I was diagnosed and my life up until then mirrored yours.
I’ve got similar issues with my children but I’ve always pushed the idea that aspergers isn’t better or worse, it’s just different.
The idea that we have such “heroes” in the field as Einstein, Leonardo, Franklin and Edison – as well as other is various other disciplines doesn’t necessarily raise my expectations but they do prevent them from being lowered.
My children will be brilliant in whatever calling they follow whether I realise it or not. It’s up to me to support and encourage them and not pre-judge anything.
Perhaps their brilliance won’t be the brilliance I expect but as a parent, I have to accept it.
A label can’t be allowed to change anything.
Hi Gavin,
Yes, I agree that AS is just different, and not better or worse. The problem for me is that whilst I know this, the majority of the population doesn’t.
I don’t fear how I’ll be with my kids very much (although I’m not looking forward to the rebellious teenage years one bit), but I worry much more about how they may be perceived by the general population. For most people, an AS label would be a negative thing, and I don’t see that changing any time soon.
A label shouldn’t be allowed to change anything, but in reality I think it does.
I also have an uneasiness with the statement you make about the likes of Einstein having an ASD. I’m well aware of the conjecture surrounding many famous historical figures having ASDs, but it’s just that – conjecture. My overly logical brain screams at me every time I see it written as though it was fact.
I agree that much of the documentary evidence surrounding people like Einstein does point towards possible ASDs, but that’s not the same as fact.
This isn’t intended as a dig at you, Gavin, it’s just that my brain won’t let this one slip…
I think it’s pretty tough to calculate potential butterfly effects of events that never actually happened.
I’m not quite sure why a University education and AS are mutually exclusive. Special needs students are looked after pretty well these days.
You might also see as a possible scenario one in which there are a number of AS students around and you’d have been able to seek out others using autism charities or perhaps just by chance meetings.
Hi leica,
I’m just going on gut feeling here, and a rational take on how I would expect my own expectations and those of my parents to differ if I had been diagnosed at a young age. I’m sure that different expectations leads to different achievements.
Of course, all of this is complete conjecture. Interestingly, whilst I tend to pull other people up for conjecture – see my reply to Gavin above – I don’t seem to apply the same rules to myself. How hypocritical of me.
Of course my life may have panned out much better than the scenario I pictured, but I don’t think that take on things was unrealistic.
I partly wanted to make this comparison to show myself how with hard work I’ve got to a place in life that many people with ASDs don’t achieve.
I’m only 28 and I’ve recently become aware of my AS. Many of the things you mentioned in this post ring very true in my life as well. I have been a serial monogamist and am recently single for the first time in a very long time…I don’t know how I am going to keep up with school without my ex reminding me to do my actual homework, rather than tinkering with things that have nothing to do with anything, or just focusing on my special interests. Luckily, I recently made a friend on the basis that we both love math and we do math together a few times a week, so I think I’ll be able to get some studying in with him.
I also am glad that I was not diagnosed with it when I was younger…I left home at 18 and am now 28. I never would have done that, had I been diagnosed. I would have stayed living in a very abusive home and never would have learned the skills (although they are a bit…different than I think the NTs have) that I needed to stay afloat.
And I wouldn’t have been forced to learn how to mimic NT social skills, and I think my mimicry has gotten me very far in my life, until people really get to know me.
I also, as a last mention, identify with what you said about being sweet, etc, yet in a weird way. This is the only way I get girls…They think I’m really weird but very sweet and a bit naive…”Aspie Innocence.”
Good post. I thoroughly enjoyed it.
Welcome to the blog, Jonah.
It’s always nice to have someone new comment, and I hope you’ll continue to do so.
When I was last single, I found that I could, in time, function on my own. I slowly built a new routine, in which the important things got given the priority. Like you, I was in my late twenties, and by that point I’d learnt enough of life to have some idea of what other people considered important things as well as my own special interests etc.
This was still way before my discovery of AS, and so it just felt I though I was trying to be ‘grown up’ and ‘professional’ about my life. Much of what I did was based on mimicry.
I failed to have much of a social life, but did go out once or twice a week after work with those I worked with. I had no friends to speak of outside of them. I forgot people’s birthdays on occasion, and I’m sure I came across as a little odd to people from time to time.
But with the input of hard work, I survived. And then I got introduced to the fine woman that is now my wife, and everything changed completely once more…
Labels are inescapable, and so are the prejudices that go along with them. It’s all very well not to look for autism labels when a child is coping well, but you’ll be scrambling if a younger sibling carries a couple of co-morbids. And keep in mind the genetic roots. In any Aspie’s family there are only two kinds of people: carriers who have autism spectrum traits and carriers who don’t. You can tell yourself that you will be able to protect your children and their children from everything that would harm them as long as that illusion doesn’t slow you down when they do need your advocacy and intervention. Life will always pose obstacles and require bravery for everyone, not just those who are handicapped. Que sera sera, C’est la vie, shit happens!
Hi Liz,
I don’t profess to have any easy answers – all I have to go on are my own experiences.
Hearing the ideas of others is a big help, and I’m glad you and others have provided thoughts that are different to my own.
It seems clear to me that right now I don’t need to be overly worried about my kids. I just have to bear in mind that that might not always be the case. In doing so, I am more prepared for the future than I otherwise would have been.
After having spent some time on WP and seen how anxious and frightened Dx’d teens are about going out in the world, I’m glad I didn’t know about my AS. I don’t know if the academic expectations would have changed, but it would have made a significant and deleterious impact on my exploration and adaptation to the world.
I got out and learned to cope because that was the expectation… that I would grow up, get a job, move out. I went to concerts (loud), showed horses, learned to drive, cook, shop, pay bills… all those tedious adult things. Of course I was anxious, frightened, bewildered and odd… but truth be told, I’ve met many an NT who couldn’t fathom tax forms either.
I’ve joined drumming circles, sweat lodges, hobby groups, and overseas tours… I’ve caved, climbed, hiked, packed, trained horses… probably none of which I’d have done if I’d known I was labeled as socially inept, cognitively deficient, easily overstimulated… all of which I am, but I always just figured A) it was their problem B) I’d do better next time.
So yeah… if there’s a skill your kids really need support for, address the problem, screw the label.
I think one of the most important things an adult Aspie can teach a younger one is how to truly be self-sufficient, physically and emotionally. How to live a rich, satisfying life alone… then if someone happens along, it’s just cream, and you haven’t wasted major chunks of your life and energy waiting for Prince Charming or Cinderella to show up.
IMHO ((snort)) =0)
They have AS traits but they won’t necessarily be like you. Every person is different and they will also have a fair amount of their mother in them.
I think it’s better to know. In the past I was really snappy with friends because I didn’t know my senses were overloaded. Nobody told me there was anything wrong with my conversation style. etc… Things would’ve been different if I’d been trained.
I’d have said autism and universities go hand in hand judging from some of the academics I know.
Hi Soph,
I think it is right to know too – I just don’t know what the right time to discover it is.
I don’t want my kids to grow up with a label unless there is very good reason for that – i.e. if they were failing in mainstream schooling.
On balance, discovering my AS in adulthood has worked well for me – better than I could imagine it at any point in my life before this. That, of course is gut feeling rather than anything else.
I also agree that university life can work well for some people with ASDs. I, however, considered myself to be reasonably normal, and wasn’t prepared for the culture shock it presented me with. I did what I needed to do to get through it, but didn’t enjoy it, because it highlighted how I was different from normal, and that made me uncomfortable.
Perhaps taking a year between school and university, and truely discovering and becoming comfortable with yourself is a good way forward. However, I doubt I would have had the maturity at that age to do that. I didn’t really mature until until my late twenties, and at thirty six I still lack behind my peers by some distance.
It can go either way, really. My own experience has been almost the complete opposite of yours.
I was a royal screw-up in school, not intentionally. I was bullied like crazy, starting with mild words in first grade and escalating to physical abuse by seventh grade. A few of those incidents could have killed me, such as the time someone left a live, poisonous snake in the family’s mailbox (I always brought the mail in when I came home from school) or the time three girls followed me to the bus stop, throwing rocks and bottles from the side of the road at my head (while a teacher watched from the school building because I had pleaded with him that the girls had said they were going to kill me. Even with a witness, they were not punished for their actions.)
My parents refused to stand up for me and refused my pleas to be homeschooled, saying that I was bringing the abuse on myself by insisting on being different and drawing attention to myself. I was expected to work it out for myself and figure out how to make the bullying stop but I never did. Even today, the actions of others is unpredictable and bewildering to me.
My parents got exasperated by my “stubbornness.” When I learned that I could legally drop out of school at age 16 and did so, they kicked me out of their house in an act they called “tough love.” They said if I wouldn’t go to school I had to go to work and learn that life wasn’t all playtime.
Out in the world, I floundered. I got menial jobs and even then I couldn’t hold on to one for a full month. I was never able to understand why I kept getting fired because I always showed up to work on time and worked hard. I still don’t fully understand it other than to know that I am socially naive and probably upset people without realizing it.
I couldn’t hold on to an apartment, either, because I couldn’t keep jobs long enough to pay rent steadily so I became homeless several times. I also ended up in a mental hospital as a result of being homeless and “strange.” I was held for observation and then admitted for 30 days as a result. My parents refused to take me in when I’d become homeless until the time that I finally ended up both homeless and pregnant from the survival sex I ended up falling into to try to keep a roof over my head and some sort of security. Then my mother finally let me come stay on her couch and fed me ramen noodles and helped me apply for disability based on being in the mental hospital and being chronically homeless.
I got SSI disability (awarded on the first application within just two months of applying — possibly fast-tracked because my mother is a psychologist) because I didn’t have a good work history to get SSD. It was the minimum payment but enough to pay rent someplace. But then I found that no one would rent to me because I was pregnant (and at the time I dind’t know the housing laws or know that it was illegal for landlords to turn me away because I was pregnant.) A man offered to help by pretending to be my husband so I could get an apartment but then he got someplace too big for me to afford, saying that he would pay half the rent so he would have someplace to go to get away from his wife at times. His wife died of an unexpected heart attack two weeks before my baby was due and he quit paying half the rent so I was teetering on the verge of homeless again with a baby on the way.
The baby was stillborn and I found a roommate (a complete stranger to me but it ended up working out well) a week later and things became relatively stable for the first time in my adult life. But when that living situation fell apart I was back to a cycle of homelessness because SSI didn’t pay enough for rent and living expenses and I couldn’t find another roommate because I didn’t have a broad circle of friends. Once I tried advertising in the newspaper for a roommate but the only people who called were men with sex talk so maybe in my Aspie naivete I worded the ad in a strange way? Argh!
Fast forward to my Asperger’s diagnosis in June of 2001 at age 34. Suddenly so many things made sense. The pieces still fall into place now, eight years later. It is not so much like a jigsaw puzzle snapped into place with the diagnosis as like a blurry image started to come into focus but in a slow process such that I am still picking out new details years later and feel that there are plenty more details waiting to be discerned over time as the picture gets even clearer to me.
At first I was angry and resentful. I didn’t want to have something embedded, neurological, congenital, and permanent. I wanted to have something else, anything else, so long as it could be cured with therapy or pills or anything. I didn’t want to be stuck this way the rest of my life. The more I learned about aspects of my life that were due to the Asperger’s, the angrier I got and the more I resisted the diagnosis.
I managed to work my way through that stage on my own (the therapist who diagnosed me practiced three towns away so I couldn’t see her regularly and precious few others in my area work with adult Aspies — so far, none that I have found. And since I’ve come to realize that therapists untrained to work with Asperger’s are more likely to damage me than help me, I “counsel” myself.) I think I actually went through all the classic Elisabeth Kubler-Ross stages of grief in response to my diagnosis. I have never rejoiced at it, but I think I have come to accept it. At least most of the time.
But the important thing is that it gave me understanding. To the degree that I was willing to accept the label, I was able to read and research about it and learn more about myself and bring that picture a little more into focus. I studied the articles about how to deal with rage, with disorganization, with anxiety. I am still extremely high-strung compared to what I can tell about others around me, but I no longer black out and break things or yelp when someone touches me (though I do still cringe away from touch. But I am able to do it silently now.)
I still don’t know how to have friends (other than some online friends who are wonderful people but whom I’ve never met in person so have no idea if they would want to have anything to do with me if I were something more substantial than a line of type.) But — wonder of wonders — I got into university. And stayed there. And got two undergraduate degrees. And stayed there some more. And got accepted to graduate school. And am about to start my second year of grad school on Tuesday. Amazing.
There is no way on Earth I could have held my act together like this before the diagnosis. Knowing what is going on was a tremendous gift (albeit one I was more than willing to discard upon first receiving it.)
But one of the anger issues I am gradually working my way through is the anger that I could not have been diagnosed as a child. It would have been impossible, due to my age, but I am still angry about it. And angry that my trained psychologist mother did not recognize that there was something “not neurologically normal” about me. Angry that my own parents threw me to the wolves and labelled me bad and stubborn for traits I had no control over. Angry that I wasn’t given the social skills training I so desperately needed at an age when it would have done me so much more good. (Kubler-Ross said that the five stages of grieving are not necessarily a linear process so it’s completely normal that I’ve got one foot in anger and another in acceptance. I accept some things but not others . . . yet. I’m working on that.)
The point I’m thrusting at is that I am a highly intelligent woman who was thrown in the trash heap and only managed to climb out of it with a diagnosis that surely would have done more good the earlier it could have come. Not everyone is inhibited by the diagnosis — some people are rescued by it and a life that would have otherwise been garbage gets saved and rehabilitated.
Hello Sparrow,
Firstly, welcome to the blog, and thank you for your wonderful comment. I feel very privileged that you felt able to share such a heart-felt piece here.
Your experiences must have been very difficult, and they make me realise how what I consider to have been a hard life has actually not been so bad.
That you are now in a much better position is very heartening, and I congratulate you, and wish you continued success in life.
Whilst I’ve not experienced life in the way you have, I can fully empathise with many of the feelings you express. I feel the pain and sadness in the experiences you have described, and share your understanding in how diagnosis, be it formal or informal suddenly puts a great many things into perspective.
I also share your suspicion of therapists, having read many examples of non AS-literate therapists making things worse for AS people. Here in the UK the situation in that regard is probably even more bleak – the UK is not as generally ASD literate as the US, and seeking a formal diagnosis is neither trivial nor quick.
I’m so glad that a formal diagnosis helped you turn your life around, and in a way, my informal diagnosis is doing the same for me, though in a much less radical way. Perhaps my AS hasn’t coloured my life as fully as yours has, which is why I’ve found I’ve been able to struggle through and lead a relatively ‘normal’ life, whilst you have found that to be far more elusive.
Clearly one size doesn’t fit all, and I’ll need to just see how things pan out with my children, and then, along with my wife decide on the best and most appropriate course of action, if any is needed.
Having identified Asperger’s in myself will hopefully mean that I can deal with any ASD-related issues in my kids in a far more hands on and sensitive way than my parents were able to do with me (they simply didn’t see it, and reacted with surprise and disbelief when I told them about it recently).
Thanks again for the time and empathy you put into your comment. I hope you find this site useful at times, and that you’ll continue to comment.
I look forward to hearing more from you,
James
Thank you for the kind welcome.
I think in the case of your children, they have a tremendous leg up thanks to your knowledge and wisdom (wisdom = knowledge + experience). If all goes well, they will never need the label, accurate or not, and the accompanying stigma (whether that stigma *should* exist is another story but the sad fact is that it *does* exist.)
You are in a great position to guide them and if the efforts and guidance of you and your wife are not enough to help them through this muddled and confusing world, you are equipped with the knowledge that will lead you to be able to seek diagnosis for them promptly and accurately so that they can get whatever assistance they might need and are legally entitled to.
I think in some ways the UK is able to handle Asperger’s issues better due to smaller size. Yes, we have some brilliant researchers, therapists, and others who work with Aspergians in the U.S., but they are concentrated in the larger cities: Chicago, New York, Houston, Portland, and so on. Only 27% of the population lives in a city over 100,000 in population which leaves over 200 million of us in underserved (with respect to Aspergers) smaller cities and towns. Since the U.S. is geographically alrge and very spread out and we don’t have a good train system like the UK, it can be very difficult and/or expensive to travel to nearby towns. For example, to get to the town where the woman who diagnosed me practices, I had to take a bus the night before, stay overnight for my appointment, and take a bus back that evening — only one bus per day between our towns and I don’t drive. (It was worth it, though.)
So our services are great for the minority who live in big cities, but when it comes to the rest of us I’m pretty sure the UK is better served.
However, when it comes to hardships or who has a harder life or easier life or who’s country is more or less attentive . . . well, I think all of that fits into a quote from Socrates that I’ve long fancied:
“If all our misfortunes were laid in one common heap whence everyone must take an equal portion, most people would be content to take their own and depart.”
It may not have been the easiest life, but it’s mine and I don’t think I’d trade it for another. (Some of that may be the inertia of wishing to stay with what I know, but still . . .)