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 . . .)

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

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.

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.

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.

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.

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)

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…

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.