What would life be like if you had early diagnosis?

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My parents took me to be assessed when I was 3, in 1989, but I was talking and reading too well for autistic, and no other labels came close, so I was just called gifted with behavioural problems.

I'm glad I didn't get it before I was 15 or 16 - I was a smart kid, and it hadn't occurred to me that my social problems were really problems. I just lived in my own little world and I grew up without the low expectations etc.

But around 15 or 16 I began to get frustrated by my lack of friends. Perhaps I got depressed - I started associating the panic attacks and meltdowns with my own failure to do things right, before then I hadn't thought about them - they just happened.

Had I got been diagnosed then, I think it would have helped, as I had more problems when I got to university and could have used some support then, and now I'm giving up on a career as an academic because of the time pressure and the stress of the teaching, it would be really nice to know if I'm just shy and lazy, or if there's something else going on.

They would have thrown me in a special school- not public. I wouldn't have had as much fun. But I am sure I would be doing better in life now if I got better help.

2ukenkerl,

I'll try to go into details. I've just felt shut off from going into details about my life growing up because it was really tough to go through and I've forgiven alot of my past so I feel that if I go into too many details then I haven't truly forgiven. I guess guilt for even mentioning it.

Someone tried to get me put in an institution. It didn't happen. Someone else stood up for me and that was one of the happiest moments in my life actually.

For some reason though, others around me had low expectations of me but anytime I had something to say it seemed to go one ear out the other. Anytime I did something that showed a sign of intelligence, it went unnoticed.

I don't understand why there seemed to be expectations placed on me that were considered to be by one parent extremely high expectations and the other very low expectations. I was never taught how to cook. I can cook now through trial and error. Alot of the things I had to teach myself to do. I had one person who helped with the process. Turns out that person is also on the spectrum. That person is in my family but not my parents.

The reason why I don't specify who and what is because I've had to forgive alot. I've forgiven people.

Growing up, I had some "savant" abilities some might say. I was never taught how to do them, it just seemed natural. I am not book smart or brilliant in that area. I've often learned in my own ways.

People have lied to me alot in life and you know how it feels when someone is lying and you can't quite tell until later on you replay the situation over and over just to see what it is you didn't pick up on time? It's worse than being able to understand right then and there what is going on.

Sometimes I am very good at picking up on it but the times I miss it, then I end up getting really frustrated. To me it's all still a learning process even in my adult stage but once I have something down, I become really good at it. Right now my current neverending study revolves around human behavior.

I am just tired of the second guessing game that I do so often. It's like an obsessive switch that I want to just turn off. I guess like what Green Tea said (didn't really understand what Green Tea really meant until thinking about it), live life instead of get bogged down.

It would be nice to have two things come together at the same time and make a clear picture instead of a foggy one even though fog is very pretty!



So yeah anyway, trailed off the actual point.

I think in my case, it probably would have been worse overall if I had recieved diagnosis at an early age due to how others around me would have handled it. Probably would still be living with parents. I'm not very happy with how parents are being told their child's limitations because it could very well turn into a self fulfilled prophecy.

I probably would have had a better education, but that's about it (as far as I can discern).

I had the best therapy for me (speech therapy), and I never had behavioural problems (quiet, passive, and gentle over here). The only thing that I would have benefited from knowing would have been going to a different high school, one that followed a similar pattern to primary/elementary teaching (I did well in primary school after the first few years of catching up--I was a little behind in verbal ability, but I caught up).

I'd be probably treated as a disabled person by my mother who even without this treats me as if I were 15 years younger. I'm 99,9% sure I even wouldn't be informed about my condition (and to tell the truth, it would be a good solution for mother because having this knowledge, I wouldn't keep it secret from the rest of the family, giving my mother a blush of shame - she always wanted to be normal, such like everybody else and have a normal daughter). But maybe I'd attend some therapies to improve my social skills.

Yesterday I touched this issue in a conversation with her, asking how for God's sake it could be possible that she didn't pay attention to my symptoms when I was little (except for laughing at me and informing me in regular intervals of time that such a freaky kid didn't live in any other place and I was the only one of my kind) and if her attitude to them would be different if I was born now. She told me in that time knowledge of neurological disorders in children wasn't that common as it is now (what a suprise) and she didn't realize my weirdness could be known under a medical name.

I don't care much about an official diagnosis, but if I had learnt about Asperger's just a few years earlier, maybe I would have been able to deal with it better, like, I'm just not a random freak and it is not because I am bad and have messed up everything myself. I could have learnt there are people like this out there, and this is nobody's fault, and I didn't do anything wrong. all these years that I've kept blaming myself for everything I couldn't accomplish, and then I ran away from my family and friends and home so that there are no witnesses to see me struggling with life. it could have been different a few years ago. now I think it's too late to reconnect to people. how could I go back to my best friend who was shouting at me back then for not looking in her eyes when she was speaking to me, and explain now all my weird facial expressions and reactions? I just didn't know what to say, how to explain that I don't mean anything bad, that I can't do it differently. how to go back to my mother and explain that I love her very much but I just cannot express it? maybe, just maybe, I would have had the right answers and the strength to stand up for myself if I had known about Asperger's. but then, maybe not.

It is unlikely that I would have been diagnosed as autistic as a young child in the 1950s; more likely with childhood schizophrenia. I think that my parents would have been somewhat sceptical of such a diagnosis. They certainly would not have panicked and thought I was doomed to a life of institutionalisation. No psychiatrist could have accused my mother of being a 'refrigerator mother' as she was definitely not the stereotype of the cold intellectual. I don't know if I would have gone to a special school. I went to Catholic schools because my mother was Catholic.

In the 1950s and 1960s there was very little non-academic writing about autism and no autistic community.

Hmm. Interesting question. (I will base this reply on the assumption that I may have AS, as I haven't been diagnosed, but anyway...)

I'm not sure what being diagnosed at an early age might have done for me. On the one hand, get labeled and yes, it does follow you. But on the other...I sometimes think maybe I could have done with the label.

While there was never any doubt among parents or teachers that I was a bright child, I was horribly lonely because I didn't know how to socialize with anyone. Eventually I stopped trying, because keeping my nose in a book was more comfortable than trying to make nice to people and getting rebuffed because I didn't know these mysterious 'rules'.

I vividly remember, after getting bullied at age 14 (I was standing quietly - at a school social event! - reading a magazine, and when an older girl demaded it from me and I said 'no', she swung me round the room by my hair)...me getting pulled into the head's office afterwards and getting a long lecture about 'Well, don't you think people would like you more if you were more sociable?' and being quizzed about who my friends were - which was horrible, because I really didn't have any - and basically, it all being treated as if my isolation were all down to me not making enough of an effort. That and my parents claiming that I had no friends because I didn't pay enough attention to my looks (my mother was appearance-obsessed).

Something that still angers me is that, I realize now that I needed more guidance than most kids would about social and later, sexual relationships and how people deal with them. But I actually got 1940s-style guidance - i.e. virtually none - and I reached my teens in the 1980s. I was just expected to deal (appropriately and in a ladylike manner!) with situations I did not have a clue about. I have some excruciatingly embarassing memories from those times, but I owe it to sheer dumb luck that far worse things didn't happen to me.

The thing is, I was very often told that there was 'something wrong with me', but it was always made out to be something I was in control of and could fix, all on my own. It's possible that Irulan's mother is right and that they simply didn't understand those things back then, but I wonder if my folks didn't actually have something about me hinted to them early on. I was in remedial - special ed - for a short time at 6 for being disruptive - they said 'hyperactive', thought I still don't know if that meant ADHD back then - and I do recall my mother being called to the school to 'discuss' me, but my mother has since denied it was even a remedial class I was put in. I wonder if maybe she didn't want to admit to not having a 'normal' child.

So, maybe early diagnosis, and openness about it, might have helped in my case - if the resources had been there to help me (and the family) deal with it. Which probably, in the 70s, they weren't. I might still have been bullied. My educational path might have been rockier than it was anyway (the 'bright' kid at an academic school chose to take art, which was a whole other can of worms!). And, bearing in mind that the family has been in denial about, for instance, my depression, I'm not honestly certain if being diagnosed now would even be of any use to me in dealing with that aspect of things.

On the downside: I probably would have received no education.

They'd have made me leave school in either 1st or 5th grade (and 6th, 7th, 8th grade).

They desperately searched a reason to expel me entirely from public schools. With a diagnosis, they'd have had the reason.

On the bright side: I'd probably have progressed way way faster.

My family probably wouldn't have these crises about my incurable 'problem'.

And I'd maybe have an overall better and balanced outcome now, not this ridiculous range of symptoms from very mild to severe.

But maybe, everything would have been very different from how I picture it too. Fact is, I didn't know, nobody knew and all progressed the way it did.

I think i woulda been worse off actually.

Nothing would have changed if I had early diagnosis. None of the problems I had as a kid were anything to panic over. It wasn't until I was 14 that things went downhill, which then prompted an official diagnosis at 15 or 16.

Even though I'm not diagnosed, fun to imagine--I would not have accepted it back then--no way. I would have rejected it stubbornly (because I was so stubborn).

I would have dug my heels in and protested to the end.

So, it would have been something I was trying to get around and lots of energy would have been invested in this.

I'm amazed at how many of you can actually imagine that you would have done this or that if you were diagnosed. It never happened and it's hard to return when you're older to a time when you were younger. You say you would have done this or that, but you are no longer the you that was younger and inexperienced so you can't really predict what would have happened because now you have experienced it and are thinking back with a mature more seasoned perspective.

Never go backwards. Your design is fashioned after what you have experienced in your life--I believe these moments were for a purpose. Otherwise, everything is meaningless and random.

Many of you learned to compensate in ways that would never have happened if you were diagnosed at a younger age. Also, HFA was in its primitive form and has only recently become understood in a more proper way.

equinn