Page 1 of 4 [ 50 posts ]  Go to page 1, 2, 3, 4  Next

pasty
Snowy Owl
Snowy Owl

Joined: 30 Sep 2016
Gender: Female
Posts: 129
Location: Southeast USA

01 Feb 2017, 3:33 pm

How many of you were not diagnosed until you were older? Do you feel cheated out of life? I believe that knowing is better than not knowing, because it helps me understand myself and why most things in my life went so horribly wrong, but I also feel like I could have saved myself a lot of trouble if I had this information a lot sooner. I was an obvious case, too, so it makes me wonder how nobody could have suspected I was different. The health department failed me. The public school system failed me. My parents tried, but they failed me. I had Selective Mutism. I had to go to a special school for kids with disabilities. I was almost institutionalized. I was constantly anxious. I had a superior I.Q. I understand that there was not a lot of information out there about Asperger's/Autism when I was a kid, but a little bit of research could have led them straight to Autism. I coulda had class. I coulda been a contender. I coulda been somebody, instead of a bum.



Rocket123
Veteran
Veteran

User avatar

Joined: 15 Dec 2012
Age: 61
Gender: Male
Posts: 2,188
Location: Lost in Space

01 Feb 2017, 11:27 pm

I was diagnosed at age 50. I believe there are pros/cons of being diagnosed earlier in life.



ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,237
Location: Long Island, New York

02 Feb 2017, 8:37 am

Whenever I start to think I was cheated I remember that many generations before me went through their whole lives not knowing they were autistic and there are many in my age cohort that will die never knowing.

In my case there was no way anybody would be able to see autism based on the diagnostic criteria in the 1960's. If somebody did diagnose me with Autism you would not be reading this because I would have likely been institutionalized for life any my mother loathed due to the prevailing "refrigerator mother" theory of Autism. While my mom (fathers were generally not part of parental decision making at the time) made mistakes considering she was working with zero knowledge she did very well.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


burnt_orange
Toucan
Toucan

User avatar

Joined: 23 Jan 2017
Age: 41
Gender: Female
Posts: 286
Location: Ohio USA

03 Feb 2017, 1:01 am

I definitely feel cheated, or more so, pissed off. I've been married and divorced twice. Had I known what was wrong with me maybe I could have done things differently. Maybe I wouldn't have suffered so much growing up. Maybe I wouldn't have felt such loneliness, depression, and despair. I've adjusted okay now. I'm generally happy. But I could rant all day about what could have been.



B19
Veteran
Veteran

User avatar

Joined: 11 Jan 2013
Gender: Female
Posts: 9,993
Location: New Zealand

03 Feb 2017, 2:10 am

It was what it was. And, as APOM noted, it could have been much worse than it was.



devilSpawn
Yellow-bellied Woodpecker
Yellow-bellied Woodpecker

Joined: 15 Feb 2017
Age: 37
Gender: Male
Posts: 74
Location: Oregon

15 Feb 2017, 3:13 pm

I grew up in florida and then lived in the huntsville area for about 10 years... I have a bit different story from you but also much similarity. I was always super intelligent, noticeably smarter than even older peers. I have always been very different and issues connecting. I was viewed as "evil devil spawn imbued with demonic superpowers" growing up in the bible belt south, in the country, receiving all types of abuses aimed at "correcting" my autism. As a teen, I was sent to a hospital where I received bogus diagnosis in order to justify behavioral control through psychotropics. The research and knowledge on autism was already substantial enough that I should have received proper diagnosis, however, there is no accepted medicine specifically for it (except for cannabis, in Oregon, for instance).
I have been outcast, demonized, betrayed and bullied by virtually every category of modern human. "Family", "friend" and "foe" included... Naturally, I have developed a striking "asocial" worldview and with my very high intelligence, I am cursed from a social perspective.

My intelligence causes extreme social difficulty for me because many of society's "rules" and "practices" and even rituals make absolutely no logical sense; they do not compute. Things like "you have to ask nicely before I'll give this too you" never made sense to me. If I'm not willing to accept no for an answer, why should I ask nicely (interrogative) when I can state my necessity (imperative) more effectively? Still, you have to ask nicely or people will hold your need away from you until you do. Stupid humans.

Growing up I asked a lot of questions. "How" and "why" were by far the most common. "Because I said so" and "you just have to believe" never made sense to me, they don't compute but somehow I'm the disabled guy because I'm not getting down with it like everyone else... hmmm.

So here I am, stuck in a world that doesn't make sense. The artificial world created by 100 generations of human stupidity, were everything about every moment our our lives has to be spent pursuing things that don't even exist. Like money, for instance.

Money is a fiction. Product of imagination. Some say "it's a form of trade" when in reality, all money is violence tokens.

Every penny.

Money allows one human (earthling animal) to claim exclusive ownership over something, nevermind if humanity is the cause for this something existing or not, that's irrelevant. If someone uses money to claim something, that claim is validated by the violence used to secure it, nothing else.

So here we are in a society that doesn't make sense, with a bunch of animals thinking animals are less. They spend their whole life's energies pursuing and perpetuating fiction, with the utmost in violence, to play a stupid game that is rigged against them. What's worse is the abuse they will subject you to if you can't make sense enough of it to play along :/



pasty
Snowy Owl
Snowy Owl

Joined: 30 Sep 2016
Gender: Female
Posts: 129
Location: Southeast USA

15 Feb 2017, 3:25 pm

devilSpawn, I think you are awesome.



devilSpawn
Yellow-bellied Woodpecker
Yellow-bellied Woodpecker

Joined: 15 Feb 2017
Age: 37
Gender: Male
Posts: 74
Location: Oregon

15 Feb 2017, 4:07 pm

pasty, I share both of your sentiments ;)

I could have been a bomb ass computer programmer or even game programmer. Pot gardener. Race car driver. Hell, who knows, maybe I could have grown up to be a teacher or professor or something. Instead I receive alienation and abuses; misdiagnosis; prejudice and exploitation and then discarded into gutter wasteland, left to fend for myself as a black sheep in the wolves' forest. Surviving off of sporadic generosity from strangers mostly. Ha!

Get tired of it, ask for help regarding your inability to function in nonsensical system and then get told "your support needs are far greater than your diagnosis will allow for funding" by developmental disability services and then have your whole case on whole while the wolves and vultures close in on you. Be stuck on one geographic location while you wait wait wait for seemingly nothing. Yeah. I know what you're dealing with. Hey, I have cops trying to manufacture a situation to justify killing me because they despise homeless people with intellectual superiority (it seems). I have an estranged aunt who lives down the parkway by english village I tell I have a situation that appears to be legitimately life and death, and guess what? No way for her to come sort things out or intervene. I'm wolf food, it seems.

so yeah, I share your feelings and have significant resentment when I think about it sometimes... If only I had proper diagnosis and support when I was younger, I could have been something more than "useless eater". But then again, in this stupid human society, what's the point...



FluffiChick
Emu Egg
Emu Egg

Joined: 15 Feb 2017
Age: 57
Gender: Female
Posts: 2
Location: USA

15 Feb 2017, 7:25 pm

Of course I feel cheated. In kindergarten, my teacher told my mom that there was something wrong with me - I didn't interact normally with the other kids. I preferred to be on my own under a table somewhere, because I didn't understand those kids AT ALL. Yikes. So, whatever....saw my first psychiatrist at 5 and my mom adamantly insisted that there was nothing wrong with me. End of that. Could anything have really helped me anyway? in the 60's/70's? Doubtful. So I don't feel cheated so much by people as by the universe in general, or God if there is one. I was put in a world where I don't fit. Where every day is a struggle to get through and on to the next. And now I watch my son going through even more hell than I did because he's so extroverted and vocal. A regular bully-magnet. He was diagnosed at 8yrs, but I'm not sure if that has been a helpful thing or not. It doesn't change the bullying - the baffling cruelty of other people. So he has a name for why he is different, but I'm not sure that makes anything easier for him.



Vimes
Hummingbird
Hummingbird

User avatar

Joined: 11 Apr 2015
Posts: 23

15 Feb 2017, 8:03 pm

I was diagnosed at 42, Not the first time I have been in front of a psychiatrist. A long history of mental illness and misdiagnosis. There are so many things that could have gone differently and better and most likely a lot less medication.
I do feel cheated but not necessarily by people or all the endless prior wrong labelling.
If my mother had had me checked at 3 when I still had not said a word then most likely I would have been institutionalised and I think that is why she didn't even though the Nursery nurses kept asking her. I didn't blend in with other children I just played with myself, puzzles and lining things or sorting them. A lot of other classic symptoms.
I was in and out of mental ward during my twenties, transitioning into adulthood did not go smoothly.
There are so many lost opportunities, broken relationships and unnecessary confrontations that I could have avoided if I had known and been guided through it skillfully.
There is no use crying over that, only thing is to try to make the best of the rest of my life.


_________________
Was diagnosed with ASD in early 2015, it has been a journey since then, learned a lot and things are starting to make sense that didn't before

Your neurodiverse (Aspie) score: 178 of 200
Your neurotypical (non-autistic) score: 19 of 200
You are very likely neurodiverse (Aspie)


kdm1984
Velociraptor
Velociraptor

User avatar

Joined: 31 May 2012
Gender: Female
Posts: 443
Location: SW MO, USA

19 Feb 2017, 11:05 am

pasty wrote:
How many of you were not diagnosed until you were older? Do you feel cheated out of life? I believe that knowing is better than not knowing, because it helps me understand myself and why most things in my life went so horribly wrong, but I also feel like I could have saved myself a lot of trouble if I had this information a lot sooner. I was an obvious case, too, so it makes me wonder how nobody could have suspected I was different. The health department failed me. The public school system failed me. My parents tried, but they failed me. I had Selective Mutism. I had to go to a special school for kids with disabilities. I was almost institutionalized. I was constantly anxious. I had a superior I.Q. I understand that there was not a lot of information out there about Asperger's/Autism when I was a kid, but a little bit of research could have led them straight to Autism. I coulda had class. I coulda been a contender. I coulda been somebody, instead of a bum.


I wasn't diagnosed until I was 29. My older half-sister had long suspected it because I didn't make much eye contact when I was little, but I slipped under the radar because I was quiet and did well academically.

There are both pros and cons to the late diagnosis.

The pros are that I now know there is a systematic explanation to the behavior and thought patterns I exhibit that sometimes amaze or annoy others, and I can plan better to avoid situations that may cause me trouble.

The cons are that it can become a crutch or excuse to not engage in things I might actually be able to do, even if it means I must put a lot more effort than a neurotypical person; and of course there is the stigma and stereotypes people often have of the condition (which aren't always accurate in every case).



devilSpawn
Yellow-bellied Woodpecker
Yellow-bellied Woodpecker

Joined: 15 Feb 2017
Age: 37
Gender: Male
Posts: 74
Location: Oregon

19 Feb 2017, 4:25 pm

kdm1984 wrote:
pasty wrote:
How many of you were not diagnosed until you were older? Do you feel cheated out of life? I believe that knowing is better than not knowing, because it helps me understand myself and why most things in my life went so horribly wrong, but I also feel like I could have saved myself a lot of trouble if I had this information a lot sooner. I was an obvious case, too, so it makes me wonder how nobody could have suspected I was different. The health department failed me. The public school system failed me. My parents tried, but they failed me. I had Selective Mutism. I had to go to a special school for kids with disabilities. I was almost institutionalized. I was constantly anxious. I had a superior I.Q. I understand that there was not a lot of information out there about Asperger's/Autism when I was a kid, but a little bit of research could have led them straight to Autism. I coulda had class. I coulda been a contender. I coulda been somebody, instead of a bum.


I wasn't diagnosed until I was 29. My older half-sister had long suspected it because I didn't make much eye contact when I was little, but I slipped under the radar because I was quiet and did well academically.

There are both pros and cons to the late diagnosis.

The pros are that I now know there is a systematic explanation to the behavior and thought patterns I exhibit that sometimes amaze or annoy others, and I can plan better to avoid situations that may cause me trouble.

The cons are that it can become a crutch or excuse to not engage in things I might actually be able to do, even if it means I must put a lot more effort than a neurotypical person; and of course there is the stigma and stereotypes people often have of the condition (which aren't always accurate in every case).



Hey pasty, autism is a superpower. There is a difference between being strange and getting "brought up" around people who care about you and want you to be happy and what we got... "luck of the draw" they might say.
We were unlucky enough to be the ones folks love to hate... Guess that's our role in society. :/

Is what it is... you have to admit, being judged "worthless" by the entire human species and being smarter than most of them at the same time does have its entertainment value, wouldn't you say? :wink:



DancingCorpse
Veteran
Veteran

Joined: 12 Dec 2015
Gender: Male
Posts: 1,532

26 Feb 2017, 1:27 am

Not quite mid life but not exactly young, I feel like I never had a chance at reaching anywhere in life due to floundering about in the incomprehensibly turbulent water that makes our wheel go around with little grasp of what the hell was wrong enough to prevent me having the same chance at life that others had. I thought I was just inept or incompatible or had done something wrong. I didn't even know I'd been existing in some distorted bubble until I began years of deep digging and finding that autism resonated and eventually received the confirmation of that mysterious cloth we call autism having tinted and smothered and coated my whole journey. It has taken me a good while of analysis and revisiting to understand how much I mourn for the years that could have been different but I wouldn't have the contours and insight I possess, the distance traveled is what is important and making that mean something with the knowledge and balance I had to fight for, I am also not an old man so am thankful I found out with hopefully plenty of time to have a fulfilling existence arise.



ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,237
Location: Long Island, New York

26 Feb 2017, 4:19 am

devilSpawn wrote:
kdm1984 wrote:
pasty wrote:
How many of you were not diagnosed until you were older? Do you feel cheated out of life? I believe that knowing is better than not knowing, because it helps me understand myself and why most things in my life went so horribly wrong, but I also feel like I could have saved myself a lot of trouble if I had this information a lot sooner. I was an obvious case, too, so it makes me wonder how nobody could have suspected I was different. The health department failed me. The public school system failed me. My parents tried, but they failed me. I had Selective Mutism. I had to go to a special school for kids with disabilities. I was almost institutionalized. I was constantly anxious. I had a superior I.Q. I understand that there was not a lot of information out there about Asperger's/Autism when I was a kid, but a little bit of research could have led them straight to Autism. I coulda had class. I coulda been a contender. I coulda been somebody, instead of a bum.


I wasn't diagnosed until I was 29. My older half-sister had long suspected it because I didn't make much eye contact when I was little, but I slipped under the radar because I was quiet and did well academically.

There are both pros and cons to the late diagnosis.

The pros are that I now know there is a systematic explanation to the behavior and thought patterns I exhibit that sometimes amaze or annoy others, and I can plan better to avoid situations that may cause me trouble.

The cons are that it can become a crutch or excuse to not engage in things I might actually be able to do, even if it means I must put a lot more effort than a neurotypical person; and of course there is the stigma and stereotypes people often have of the condition (which aren't always accurate in every case).



Hey pasty, autism is a superpower. There is a difference between being strange and getting "brought up" around people who care about you and want you to be happy and what we got... "luck of the draw" they might say.
We were unlucky enough to be the ones folks love to hate... Guess that's our role in society. :/

Is what it is... you have to admit, being judged "worthless" by the entire human species and being smarter than most of them at the same time does have its entertainment value, wouldn't you say? :wink:


Bieng judged negatively for bieng different has never been entertaining for me just tiring and frustrating.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


PuzzlePieces1
Raven
Raven

Joined: 16 Aug 2016
Gender: Male
Posts: 124

28 Feb 2017, 9:22 pm

I am actually kind of glad that Autism Spectrum Disorders hadn't been clinically described yet when I was in school. I would have been given "special services" that would not have actually done anything to help me since there really isn't anything you can do for the condition. And I would have been labeled and tormented even worse than I was by the other kids.

On the other hand, maybe my parents would have loved me if they had understood that my behaviors were not intentional. Today as an adult, I have very little contact with them, because they used to hit me a lot for my behaviors when I was a child/teenager.



Eurythmic
Veteran
Veteran

Joined: 1 Jan 2013
Age: 48
Gender: Male
Posts: 514
Location: Australia

28 Feb 2017, 11:39 pm

Does a diagnosis make you any different as a person?
You are who you are, will being "diagnosed" change anything?
Certainly reading about ASDs will quickly give you some idea if you fall on the spectrum, and if you do things that have happened in your life seem to fall into place.

I ask this because I feel that the disorder isn't one that is in actual need of a "cure"
This is how we are, we can be conscious of it and embrace what we like about being on the spectrum.
Speaking for myself I'm quite comfortable with being who I am and feel no desire to be pigeon holed or "cured".