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What is your experience and opinion?

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With childhood vs adult diagnosis and any differences between them. I have experience with both, because my official diagnosis changed just after after I turned 18 as a result of the DSM 5. My experience with both are similar, but also very different at the same time. 

Specifically, what is your opinion about the risks and benefits associated with both or either? I have spoken to a wide array of adults who were diagnosed as an adult and have an entirely different experience to mine that is largely unrelatable. 

Not that I have any desire to be anything besides just myself, but for me that has been rather alienating, and given my history due to what happened to me as a result of my original, childhood diagnosis, that has complicated my life and adjustment to being an autistic adult. 

I find myself lost as to what kind of development I missed out on, and what sort of adult milestones are realistic for me to aspire towards. There really isn't much of any literature out there about how an autistic person develops as we age, what type of milestones if any are average for an autistic person, or really much of anything on how to even "life" at all. 

All I have really noticed is that the same shaming attitudes that I received as a child continue on, except now I am more aware of them and how the pressure of them impacts me. 

I realise I have privilege that many autistic people do not in being able to use verbal communication, even though most of the time I am ignored and not taken seriously regardless. My ability to say no and have my own opinions has made social affairs both even more not worth the effort and exhausting, and the vast majority of adults in my life despise me because I'm not interested in socialising with them. 

They see that as an attack towards them, when really it is just that I would rather be alone, and have no ill intent towards them at all. As a result of the changes in the DSM 5, most if not all of the disability providers I have met as an adult think I am a huge joke, and unworthy of any actual assistance whatsoever. 

I kind of have the opinion that there wasn't really much of any point in receiving the updated diagnosis, and I am aware that I am technically one of the "lucky" ones who didn't get kicked off the spectrum entirely. I mean, it doesn't help me in any way at all and I already know that I am autistic, diagnosis or not, really all the diagnosis is for is to help gain equal access to services and participation in life overall, at least to me. 

But then there is the reality of I didn't really ever actually receive that to begin with. Me being diagnosed has always had a very negative impact on me, due to how the people around me chose/choose to perceive me as a result of it. I have never really been treated like an actual human being in my life. 

So how am I supposed to consider myself as one and believe I am actually worth living? So many people just outright refuse to believe what happened to me as a result of the above, and of those who have, most have said that I will easily recover from it because I have survived so much. 

I find it hard to believe that, because being autistic is one of, if not the largest fundamentals of me. After so many years of enduring what I had to because of how others viewed me, there comes a point where things are beyond repair, or at least repair that is tangible. 

I'm not ashamed of who I am anymore, which is an achievement I will actually acknowledge, but I can't help but say that I am still broken regardless. I just got used to being broken, to having to deal with it. 

I have spoken to several other autistic adults who told me it was a relief to be diagnosed. I don't understand how, all I can do is wish that were true for me too, and that I could actually get on with my life. Is that relief a mindset that could be possible for me to achieve, or did it just happen? 

I have had a lot of people tell me it must be great that I was diagnosed as a kid and had the chance to receive early intervention. I pride myself with my honesty, but more and more as time goes on, it is harder to say what really happened instead, because they either don't believe me at all, or tell me that I am so put together for someone who had to endure so much. 

Which is honestly a load of shit, because I am not, and I am more than sick of people not noticing regardless of how much effort I put in to tell them. It makes me think the same about my mental illnesses, what is the point if having the diagnoses can't get me any real help? 

Don't want to be all woe is me, but it is hard for me to see others be able to get well whilst I am still here in this never ending blackhole I have been in for most of my life. I have done nothing but give every last effort towards getting well to no avail at best, and getting further abused at worst. 

I wonder why it is I am like this, and all I can think of is that it is probably because I am autistic. The traits I have just make me more susceptible to treatment resistance and going unnoticed, among other things. Treating me is hard work and a challenge that no professional seems to have the appropriate training in, nor willingness to learn. 

I just look like some undead creature that has nothing wrong with me besides that. I have wasted so much time trying to do exactly what a mentally ill person is supposed to, but again, why and what is the point when professionals don't even notice, or are just plain sick to death of me not getting anywhere? 

I will spare you the rest, because as far as it seems, this isn't very common. All I really want to know is if it is my fault I am still stuck here, because I am the one with the rigidity and lacklustre presentation as a result of being autistic, or is it, I don't know, something that I should just forget about because ignorance never ends? 

Has there been a point in being diagnosed for you, or has it changed as a result of maturity and life experience? I am in no way a fan of the diagnosis that replaced my childhood diagnosis, because it fails to describe me in a holistic, properly described manner, and makes me seem more functional than I actually am just because my IQ is average and I have verbal capacity. 

As soon as I received it, I stopped being viewed as autistic enough to be worth any assistance, which is pretty ironic and shitty given that I am in need of it, and it shouldn't take a rocket scientist to notice that.

I mean, the unit I live in, I have almost lost several times due to executive functioning deficits, the every day state of the place is close to being a dumpster, I am not able to do any activities of daily living on a regular basis, if at all, without causing some issue. I am getting absolutely nowhere with anything. I'm bored out of my damned skull, it is a wonder I have maintained the limited sanity I have left. I am stuck in negative behavioural patterns that I have tried getting out of, both on my own and by seeking out professional help, but have received none. 

Nothing besides well you are intelligent, fix it yourself. I have to remind myself to bite my tongue, because the reply to that would be rude to most people even though it is true. Plus, I don't really gain anything from sounding up myself. 

But really, if it had anything to do with intelligence, yes, I would be capable of fixing the problems myself and would have already. I would not bother reaching out if it wasn't an absolute necessity. And that doesn't mean I think that professionals are useless or inadequate, that is just the way I am. 

I'm just so tired of it. Being autistic is one thing, dealing with everyone else and their dumbass, misinformed attitudes and perceptions is a whole other beast, and frankly, worse because it is actually bad. 

What does it take to be treated and valued as another human adult in this screwed up world? I'm apparently not meeting the requirements. 

Edited by Hopelessly Broken
Forgot some things
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Dx BP at 14-ish. The child psychs (I went to three before 18) seemed to think it was Better or more treatable before adulthood. The stakes are lower cuz you just miss school, more time to learn and apply therapy, parental and familial help, more time to adjust meds before you get to the "real world." Only problem: I had almost no therapy breakthrough, and I didn't get to find the "real world" combo cuz I was almost 19 before stability started to peek it's head out. Also had to deal with restrictions about pediatric ECT...as well as the slower/lower doses and titrations that they try first for peds patients which is reasonable for many but basically prolonged the agony for me. When I spoke about this to my current (and most competent) psych he felt that the whole better-off-young-Dx thing was bullshit- it's just as disruptive as it limits friendships, development, and important adolescent activities and milestones. While there is truth to the fact that I could not have graduated on time if this happened in college, I'm not sure how much I get from that- very few significant high school relationships, burnt thru most (really all) of my friends and ended up being a bit of an outsider...and that stuff still bothers me to this day. 

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I was referring to the ASD diagnosis specifically, but I guess I did mention mental illness, so thanks for your input. I was meaning what is the point in a mental illness diagnosis when being autistic makes it near impossible to get well or even be noticed, however. 

I have been diagnosed with mental illness since I was 8, mostly trauma related diagnoses, then at 11 I was diagnosed with dysthymic disorder, and at 12 I was diagnosed with MDD with dysthymic features, which is now persistent depressive disorder with current MDD episode. 

Nothing has changed since then except getting worse. Obviously my depressive illness is now recurrent and my mental illnesses overall are categorised as severe and persistent with complex needs. 

I just don't see the point in being diagnosed with either anymore, because it hasn't helped me at all. So much of what could have been a proper child development and life is gone down the drain. I'm at the end of the road in terms of what is available to me for the mental illnesses I have, regardless of if people here believe me or not. 

And the autism, is well, autism, part of who I am regardless of having the official diagnosis or not. Everything the diagnosis is meant to do hasn't happened for me at all. 

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Sorry I realized after that I wasn't paying attention to the specific topic. I think people get Dx cuz doctors/caregivers/society want to feel like they have something to fix or solve or at least improve. Of course diagnosis can be important and helpful in many cases, but As we know many diagnoses do nothing to get to the root of the issue

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OK. I’m still a little confused about exactly what you’re asking, so forgive me if I don’t answer the question quite right. 

I didn’t find out I’m autistic until I was 39. It was a huge relief. The reason I pursued a diagnosis was that I was at a point where my bipolar was being pretty well controlled with meds but there was still something obviously “wrong” with me. I wasn’t having crazy mood episodes, but I still didn’t fit in. I was, and am, very different from other people. I got assessed for BPD first, but that diagnosis clearly didn’t fit. Someone here on CB suggested I check for autism, actually. 

So, I respond to meds; they treat the organic kind of crazy I have. I need therapy to deal with the messy and traumatic parts of my life. I was also abused as a child, not brutally the way you were, but nevertheless, it happened, and I deal with the repercussions. And I’ve also had a kind of therapy, or more like instruction, around how my autism affects me. Kind of a tutorial on how the traits of ASD apply to my specific behaviors, difficulties, and life patterns. 

There is a lot of ignorance and bad information out there about what autism is, and trying to manage in a world that doesn’t understand us is hard as hell. But autism isn’t a thing to be cured. If you have it, you need doctors who understand how it impacts your learning style and your cognitive functioning, and I don’t know how effective therapy could happen if that piece of you were ignored.


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No, that answer is great, it explains why it was a relief. Not that there needs to be a reason, but learning more about yourself is definitely a relief and I understand that. Somehow for me, being diagnosed hasn't taught me much of anything I didn't already know about myself. 

Maybe because I was still a child, I just didn't really need a label for what is different about me. I noticed that I am different from a very young age due to the types of environments I grew up in, and my responses to the trauma being extremely different to other kids, and to what was expected clinically. 

In kindergarten, I knew I was different because the other kids made friends and didn't get bullied, I have never been interested in friends and have always been more interested in learning in the educational setting, I never understood why friends or interacting needed to be part of that, and saw it as something that got in my way of learning. 

I knew I was different because other kids were more interested in more things than I was. They enjoyed things, and I didn't. They understood each other, but not me, nor did I understand them. 

So long story short, but I already knew I am different and being diagnosed didn't and still doesn't provide me any information about me that I don't know already. 

I don't see why I need to fit in anywhere, not saying that is what you're implying, because it isn't, but that desire just doesn't exist in me. 

Maybe my depression isn't organic, then. That is something I have always wanted to learn, what is actually depression and where does it come from. It seems most of where mine comes from is the trauma and negative shit in my life that results from being a minority figure. Obviously meds are not going to do anything for that. But no one seems to take that seriously. 

And you're right, no one notices or listens to me when I tell them the connections between my behaviours, cognitive style, learning style and being autistic, they don't want to hear it, because it sounds like an excuse to them. So I guess that explains why I am still stuck here. 

Would you say it is also uncommon for us to not respond to meds if we are mentally ill? That doesn't come from being autistic? 


Edited by Hopelessly Broken
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I had no childhood diagnosis. Like Gearhead, I didn't get a diagnosis until well into adulthood, in my case, in my early 40s. The relief, for me, came in that I suddenly had a rational explanation for my brain - a Consolidated Theory of Everything that put my senseless world into perspective. I had spent my entire life asking myself (and other people) Why am I different from everyone else? Why don't people understand me? Why does everyone's behavior baffle me? Why don't I get it? Why don't I want to get it?

Now, suddenly, Eureka! I know why. Admittedly, at first, sorting through what it meant left me with some self-doubt. What is this 'disability' word? What do they mean 'disorder'? What do they mean by 'deficit'? I was a National Merit Finalist, for God's sake. My IQ was measured at the genius level (then I went to work for the government, so it's probably taken a dive since then). How can the diagnosis be telling me that I'm actually a factory second? I mean, according to the standards set by the Neurotypicals, I'm not keeping up the pace!

Eventually, however, I've come to realize that the way to succeed at the game is not to play. No, I'm never going to meet Neurotypical expectations; I don't have the wiring. If I assume that Neurotypicality is the best way to be, then I have to accept that I can never be the best way to be. But I choose not to assume that. So what if they're Star-Bellied Sneetches? I'll be damned if I'm going to run through their machine to try to get a star on my belly. I don't need it. I was made this way, and I am perfectly functional as a Homo sapiens aspergensis.

I do not, by the way, give two snaps what the compilers of the DSM have decided about what to call the Spectrum. I was diagnosed with Asperger's Syndrome; the diagnosis was fitting and correct; and I have Asperger's Syndrome. I will continue to have it no matter how many times some Neurotypical decides to deprecate the term, because I own my autism.

HopelesslyBroken, I don't imagine that my approach to the question is much help to you. From my earliest efforts to cope with a hostile world, my strategy has been to build a fortress within myself and defy the world that did not understand me. I decided to stand alone, to become everything that I needed (not always successfully) so that I would never need to leave myself vulnerable. I would become as perfect as possible so that I could not be rejected (a desperate gambit) and I would develop the ability to internalize and absorb my own emotional pain until it became a reflex. Once I learned my autism diagnosis, all those early defenses clicked on like a suit of armor, and now I really don't care one bit if I fit into the Neurotypical world. They can learn to get along with me. I am different, but equal. The difference between me and you, perhaps, is that you don't try to deceive yourself into believing that there is no pain. Unlike me, you may ultimately find a resolution.

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I must say that I don't particularly agree with the term disability or deficit, either, certainly not by the neurotypical standard anyways. I have learnt myself as an adult that it is ultimately my autism to own, therefore I am the only one who can genuinely say what either of those mean, and what about my autism actually are those things. To no surprise, what I class as a deficit is not what the outside world classes as a deficit, and what they class as a deficit is not one to me. 

I say that most of my autism isn't a disability at all, but a set of different abilities. What is a disability resides externally from me, not as part of me directly. Try to get the neurotypical to understand that, I have learnt to not waste my time on it, because they never will. 

I guess I struggle with knowing what my natural functionality is, because I have always had to deal with mental illness as well, as a result I have never been that functional. It is hard for me to know which parts of that are from me, and which parts are from the mental illness, and at this point in time, why that even matters if I am deemed unworthy of functional assistance. 

I can understand your defiance of others who don't understand you. I am like that as well, or I would be if I had the option to choose to be that way. That is what most people despise about me most, actually, they think I am a self-serving asshole who cares about no one except me. 

I think I do deny a lot of my own pain, though, just not consciously. I have a lot of garbage to deal with and I am someone who has a "what's done is done" attitude. The way I have survived all of my trauma is denial of pain in and of itself, because I have been frozen off and detached from it. I see it, but I can't really feel it because I am too numb to. Thus I can deny it is even there to begin with. 

Plus I deny it by not even calling what I have endured pain. I don't ever openly say I am in pain because it makes no sense to admit that when I feel no such thing. Pain isn't even an impact of what I have endured that I admit to, because if it is there, I can't access it. 

I admit to my issues, sure, but they are right here with me, so much so that they too have made up parts of what makes me, me. In a way you could say that not letting go of them is a form of denial. Not admitting that I am afraid that if I did, I would no longer be me anymore because at this time I have nothing else of substance about me.  

I find myself just wanting to be me and having a similar attitude towards the world as a whole. I often wonder what I would be doing if I had the chance to actually be me in entirety, but if I'm honest, that hurts me because I can't be at this time, and when or even if I will be able to attain the resources to do so is unknown. 

I guess you could say this all part of being a young adult, finding your place in the world, your purpose, etc. All I have found is I would rather not be a part of the world if it denies me of such basic humanity to even be myself authentically, and that the purpose I set out to achieve some 5 years ago when I entered adulthood isn't even achievable. 


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3 hours ago, Hopelessly Broken said:

I admit to my issues, sure, but they are right here with me, so much so that they too have made up parts of what makes me, me. In a way you could say that not letting go of them is a form of denial. Not admitting that I am afraid that if I did, I would no longer be me anymore because at this time I have nothing else of substance about me.  

This is a particularly familiar state of mind for me, and one that drives. me. round. the. bend. when some bliffing NT tries to turn it around on me and say, "You don't want to get better, do you? You just like being miserable."

!  !!  

Oh, yes, of course you're right - that's why I went through twenty years of therapy, so I could better enjoy being miserable. NO, you knee-biting twit, I do not enjoy being miserable, and if you understood the Nth degree of what I'm dealing with you would never have allowed such unmitigated bilge to cross your tongue.

I spend a great deal of time in internal debate with myself, weighing the value of my assertions, denials and defenses, in an ongoing effort to jettison anything possible. I would compare it to the problem of a compulsive hoarder trying desperately to clean out the closet where he has kept several Rather Important Collections of Great Sentimental Value since childhood. Progress is slow, and excruciating.

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One of my all-time favorite members, Emmettman, who used to post genius things here on the autism board, said once that someone had told him he thought about things too much. His reply? “That’s an interesting idea. I’ll have to think about that.”


You should take some time and read the old posts on this board. I’ve referred to them over the years, and found them very interesting and useful. Plus we encourage necroposting, so if anything g catches your eye, we can open up the thread again.

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  • 4 weeks later...

I don't exactly have either a childhood or an adult diagnosis. 

I was diagnosed at 15.  So not sure where you would place that?

However despite really struggling during the last years of Primary School, where a diagnosis was actually needed, and where it was Blatently obvious i was not NT, Secondary School was much better as even with loads of different teachers (15!) I was supported without a diagnosis. 

Gearhead mentioned being assessed for BPD as well. I totally believe it is possible to fit the criteria for BPD with autitistic traits. 

Edited by helenllama
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I was given a diagnosis as a teenager. The only thing that accomplished was allowing me to have an educational assistant in school. I didn't have any other support. I lived in a residential treatment center at that time, for my Bipolar disorder and other strange behaviors. AKA I was too much to handle at home, so I was placed in res for observation and to find out what was really going on with me psychologically, as no doctor I'd seen since the age of 14 had been able to figure that out yet. 

My diagnosis seemed to be, and really still is, just purely "educational". That's at least how I see it. It did not gain me any services, support, etc. It was just knowledge for my family and I to have, so that we all could best deal with it in the ways we were capable of. Dealing with it to me just means being aware of it, dealing with it to family means telling me to not act in certain ways in public, or even at home, because it's annoying or upsetting to them. 

To me, diagnosis in my childhood meant nothing, other than everyone knowing what they were in for, for the rest of my life. Thank you Dr. H... Ugh. I do suppose though that diagnosis as an adult would have made my depression and feelings of being so isolated, strange, and "wrong" worse. 

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