is autism gonna get so bad eventually

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I understand that you are baffled as to how someone could 'slip through the cracks' as a child, and not get diagnosed - and yet end up with a severely disabling level of autism as an adult. It's a valid question, and worth discussing.

My feeling is that if the criteria for ASD are to be questioned or changed, it should be based on symptoms that are actually disabling, rather than how we 'look', or come across. A person can look completely normal on the outside, and yet have severe limitations in functioning - so if the line is to be (re)drawn, it should be based on the reality of the disability, not the outward perception.

And my own opinion about disability is that essentially all children are 'disabled', in the sense that they are not able to provide for themselves without assistance. And as children, those of us who went undiagnosed were being cared for every step of the way, by parents and teachers who accepted that we were 'smart but odd/troubled', and tried their best to help us. We were not functioning at the level of our peers, especially socially - but in our day, it was accepted. My rural school didn't even have a Special Ed class, or a school counselor, or anything like that. Some kids in my class were 'slow', and - well, that's all it was. They were just 'slow'. No diagnosis, no special help.

So as children, we were not functioning on the level of our peers, and certainly not on an adult level, in terms of being able to care for ourselves in the 'real world'. And only when we became adults, and were faced with the 'real world', did it become glaringly apparent that we were unable to function without Mommy and Daddy and teachers holding our hand, and taking care of the basic life skills that autistics so often fail at.

So it's not until adulthood that disability truly affects a person's ability to survive in this world. And even then, it's normal for young adults to have all sorts of problems finding work, and figuring out their place in the world. So in our society, it's completely normal for a person to flounder, and utterly fail at life, at least until 25, without anyone thinking it unusual.

This is how a person can make it to 30, before it finally becomes obvious that there's something very wrong with them. And by then - if they've grown up believing they're just 'unlikable', or 'not applying themselves' - they are likely to continue believing that, and not have even the slightest clue what autism is, or that they have it.

And since Aspergers only began to gain widespread knowledge in the past decade, many of us were in our 40's or 50's before we even heard of it, and began to understand what had been 'wrong' with us, our entire lives. Why we had struggled so much, in trying to find any kind of job we could do, or people we could get along with. Those of us who made it this far are survivors - the lucky ones, the 'success' stories. We are the ones who did not kill ourselves in utter despair, in a world that we had no hope of ever fitting into.

Ezra, you have asked over and over how anyone with a disabling level of autism could not be noticed in childhood. And many of us have provided our stories, for you to learn from. Please, learn from our stories, and show more respect for those of us who have endured a lifetime of suffering, before receiving even the tiniest bit of help.

Ashariel--

Just want to thank you from the bottom of my heart for that spot-on explanation about the mechanism by which we older ones get to where we are in this situation, and why it's such a mess that younger people are suspicious of it.

I have been made ill today by all this -- that's not any person's fault, I'm just finding that the stress of all has made me feel like I've been drained of vitality. At my age I'm feeling physical deficits from mental stresses more and more. I'm also just tired of this always coming up. It has indeed been explained over and over but I'm beginning to believe some people just truly at heart don't want to hear it or believe it.

I'm tired, I'm feeling unwell and I just don't want to come back to this. There's been two people at this over the past 24 hours and I don't even think the mods give a damn or see an insult in it.

I'd just like to say, that for myself, I don't really care whether the people I talk to here are diagnosed, undiagnosed, NT; severely, moderately, or mildly autistic, ADHD, or whatever. If socially awkward people (who perhaps even have social communication disorder) or BAP people are here, I'm fine with that, too.

I talk to people here because I like being able to talk about problems that I have that no one else I know even has. I don't know anyone with ASD. I can talk with the NTs that I know, but they didn't really understand. It's very lonely being the only one.

And I speak very directly, and I like that most people here do as well. It's often so hard to understand what people really mean in real life. I feel more comfortable having a place where I can talk about my special interests, speak directly, and just be myself. Nobody cares about my special interests in real life .I kind of get made fun of for even talking about them sometimes.

Yes, I don't want ASD to be trendy. It's serious for me, and I really don't have much of a life as a result I want it to be taken seriously. I don't want it to be a fad of wrong diagnosis. But I'm not sure how often that's really occurring. I know that for myself, I seem much more "normal" and put-together here than I really am.

I'm wondering if some of the younger people who seem to have had a wrong diagnosis actually had only mild symptoms and outgrew their symptoms in childhood? I know that some people's symptoms improve significantly over the course of growing up.

I don't think that's quite what Ezra meant with earlier posts. I too thought so at first, and being one who as a kid, autism was purely someone who rocked in a corner all day with an assumed low iq and nonverbal (aspergers didn't exist), at first i too took offense to what was said. Reading more though, and thinking back to how i felt when younger, combined with how different things now are, i think i can see where he's coming from.

I don't however think it was about who can post here, nor trying to point fingers here..if anything, my interpretation is that here is a group of people who would understand my frustration, so i'll vent here. And many took it personally (as above, at first, i did too as i yet more took it as aimed at age 35+...you don't know my life..and no, i'm not going to share it..who are you to think i had bread and roses and one day walked into an office because things suddenly weren't going my way!!) But the more i read, i really don't think how i first took it was what was intended.

Last edited by 100000fireflies on 10 Feb 2016, 5:12 pm, edited 2 times in total.

I thought this was about someone's autism getting so bad eventually, oops.
But I see it's just the same discussion as another thread last week.

Ashariel,

Yes, you described my life up to now (age 33) and autism discovery very well.

BirdInFlight,

I am sorry to hear that this is causing you so much stress and illness. I hope you feel better.

I do not believe either person meant any insult by it. I believe it was just because they are younger, the change in autism understanding and treatment in this new millennia is HUGE, they just did not know or understand that difference, and asked for explanation.

This is not generally because they'd like to be autistic. (Though personally, I see no problem with liking whatever you are, even if society considers it a disability.) It's because they're struggling, and they want a) a clear answer and b) some help.

For an analogy, recently I've been having breast pain. I was referred to get an ultrasound to check it out, and was disappointed when they found nothing. Was that because I wanted something to be wrong with my breasts? Of course not! But like it or not, something is wrong with my breasts, and I really want to know what it is and how to deal with it.

Dang My Reply got Deleted!

Last edited by Pieplup on 10 Feb 2016, 6:27 pm, edited 1 time in total.

Well, They tried to diagnose me my entire life, But my Psychopathic mother had prevented that from happening, The only time when Me and my Brother 'name_is_loading' got diagnosed is when We moved to our fathers.. We we're obviously imo Autistic, More my brother than me, Because he Shakes his leg All the time when he isn't sleeping. My Stimming is less noticeable. I Snuggle with Plushies which is stimming in it's very definition. Also, My special interests have always been very intense, as you can see from my profile Though I consider me and my brother to have our autism affect each other in different ways, I'm a Insomniac While he is a Hypersominac. He is Hypo-sensitive, while I'm Hyper-sensitive. As you can see.