Anyone else feel angry for not getting an early diagnosis?

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I went more than 50 years not knowing what was wrong with me. Once I got my diagnosis and understood what was going on in my head, it all made perfect sense.

Yes, I would have liked to have addressed it sooner, but I grew up in a time where the attitude was "he gets good grades in school so there's nothing wrong with him" and "he's just shy, he'll grow out of it."

Hard for me to be angry about that, I understand that society in the '80s didn't understand the human brain the way it does now.

I'm frustrated mainly because I've been assessed twice and still never got a clear answer. Last time I was assessed I was told that it was likely and that if I went to therapy for awhile I'd get diagnosed with ASD, and then I was told that my ADHD "prevented me from paying attention to and learning social cues" or whatever, and that I picked up all of the rest of my behaviours from my brother who has Asperger's.

I don't know why, but I feel like "picking up" so many behaviours from someone else that I've shown symptoms my entire life, and was also told I essentially qualify for a diagnosis, isn't a thing. At this point I've just decided to go without an actual formal diagnosis since apparently it's just going to be a waste of time and money, and at this point everyone in my life, including my dad and brother who both have Asperger's, recognize that I have it anyways.

I definitely would have liked to have gotten a formal diagnosis when I was assessed as a child though. I didn't get the support that my brother did in school and from our parents, and had adults act like I was just a weird, misbehaved child that wasn't worth teaching.

I am self-diagnosed since 6 years & today I made the first step in getting a diagnosis.

It seems to me one of the ways in which Germany is backwards is the diagnostic process. In the whole city I live in there is only one man who is eligible to diagnose autism, at the so-called autism ambulance. Only people who live in the city in which their local "ambulance" is located can visit their city's ambulance and they can't go to a neighbouring city for a diagnosis at a different ambulance (i.e. this one man, and yes they have only one "specialist" working there who's responsible for diagnosing, is the only man on Earth who can either give or not give me a diagnosis... it shouldn't be the case that it can depend on this one dude only). I have read up on the German autism forum about people's experiences with the diagnostic process at this particular ambulance in this city. One person wrote she was required to invent stories and even to pretend she was brushing her teeth. Wtf. There were some people on that forum who said they got dismissed and had bad experiences with that "professional". Anyway. As there is no other option, I called that so-called ambulance. They told me I would have to call back when I got a referral from a psychiatrist to be able to make an appointment in the first place. So I called a few psychiatrists and the earliest appointment I was able to get is at the end of September. So end of September I can call back the ambulance to be put on a waiting list that will probably last over a year.

Some reasons I'm even looking for a diagnosis now are these: Without the "qualified" opinion and "expertise" of the "professional" nobody will believe me so I wouldn't be able to tell even anyone I am close to (not that I want to tell strangers such as colleagues!!). Even online autistic people who have a diagnosis have sometimes dismissed me as only "presumably" having autism, as if the presumption their p-doc had about them after filling out some form was any factual truth and not just a "presumption" too of some middle aged NT dude, so wtf. However I know that's the way it is, so I am therefore seeking out the Ambulance Guy's validation since I want to be taken seriously. But there's also a more pressuring reason that leads me to seek out a diagnosis: while I am currently unemployed, I don't see how I should struggle on like this in the workplace for the next 40-50 years 'til retirement/death without any help. For example, in the past 4 years I had 6 different menial jobs and was unemployed twice, and last week I was even told to not come back to my unpaid internship. I seriously just want to live my best life now. I am disadvantaged by this genetic handicap but I can try to take action and make this life more bearable and try to become eligible for receiving whatever help in a few years when the diagnostic process is completed. That's all I have left as an option. Autism Ambulance I'll see you in I guess 2022. Until then? Sure I would have liked to already have a diagnosis or to have received it as a child. But the enviornment I was in wasn't really attentive to that sort of thing.

I can't say I'm angry because I don't think you can expect anything from anybody but still I do think at least teachers should have *thought* something was wrong. If a child plays by herself all the time in kindergarten, and then is always alone in school, how can any teacher who should have received pedagogical training be so ignorant as to not start thinking: "I see this girl sitting alone every single day since years, always by herself, every single day. I wonder what the f**k is wrong with her? In particualar, I wonder what the f**k is wrong with her social abilities? Why doesn't this girl ever play with anybody?". I don't think anything like that ever crossed their minds. Same goes for the secondary school teachers, but I think during the teenage years they at least could have come up with some excuses - not that they ever went trough the thought process that would have led them to devise any explanation for my behaviour though. I was bullied & so started getting increaingly shy as a teenager, so the teachers could have just made the excuse that I am just shy and the teens are bullying me (something teachers prefer to ignore anyway lol), but otherwise I am a normal girl who just has to come out of her shell more, and her grades are good and homework is completed, so pay no further thought to this outcast.


I am slightly resenting my parents for they passed on this genetic flaw (one of them is most definitely on the spectrum). Humans know since thousands of years when they started to domesticate sheep, cattle, & co. that behavioural traits are something that is possible to be passed on. You don't even have to know a condition such as autism by its name to realize your child might take after you. You can consider that the problems you've encountered in your life might have been caused not simply by environment and experiences. Anyway, they surely didn't realize, else they would have refrained from having me.
However, there are some things I don't understand about their perception, just as with the teachers: e.g. all my life my mother would get angry with me for not playing with other children in the breaks, or after school or during the school holidays. Even when I was an adult already and lived with her again for a year in my early twenties she was always angry why I was always in my room after work and didn't meet up with the "children" from my old class (who were all adults by then....), and even why I didn't meet any young men? She wasn't just asking this or wondering; the woman was always angry as if I was the most misbehaved child and teenager and even adult (!) for being alone and what's more as if I was doing it deliberately just to piss her off. Woman, instead of getting angry and thinking your child is deliberately not "playing" with the "children" in order to bring your wrath on her and to annoy you, maybe realize she's been this way since you first put her in a social situation in kindergarten at age 3 right? Maybe she is not doing this to embarrass you and to shame you and to make you angry, and being alone is not something she's doing to be a bad evil person who is out to piss you off and who needs some punishment. Anyway, it doesn't require any competence, knowledge or expertise to become a parent; anybody can breed so why should you get angry with them about anything just because it wasn't in your best interest? Most people aren't out for your best interest in life anyway. You can still take it in your own hands as an adult.

I'm more frustrated by the failure of my parents,teachers and mental health workers etc to join the dots together ,and acknowledge I needed support, than I am about the delay in providing an exact label for them.

I was diagnosed in 2012 at the age of 51. Thats coming up on 8 years ago and the incredible relief and understanding of so much that accompanied the news I had Aspergers, must not have worn off yet. I still have all the issues and don't get a certain kind of joke and always miss sarcasm but now I know why and I am part of you and you me.

I am not some freak that just stood their stunned as my sincerest effort at a compliment and maybe attempted flirt to some girl, instead, enraged her. My put on smile evaporating in an instant, as she screamed, "What kind of a**le are you? Why would you say that?
Those really stung for a long time and I can say, a wince came writing that, over 40 years later.

I never minded being alone and I don't think I have ever felt lonely but I did see friends and lovers happy and laughing and wanted to know that. But as those blunders added up through adolescences, it wasn't looking so good and the compliment was not a lie, her breasts really were much bigger than the last time I had seen her and I thought she was more attractive 30 lbs heavier.

The really confusing part for me was, I was scary smart but somehow just could not figure out the simple things. I read insatiably and have an eidetic memory. I can read in my mind, any book that I have ever read. I know the definition of sarcasm but completely missed it every time. I used to think that people had some kind of glitch like a record needle skipping, in how their brain worked.
Someone would spend 10 minutes telling me how much they hated something, like cats for instance. This guy dating my sister goes on and on about how he hates cats and cats hate him and then he says, ..."then I meet your sister and she is perfect. Beautiful, smart and we are getting serious and finally she brings me to meet all of you and the first thing she introduces me to is her Cat and I just looove cats."

The glitch, then I heard of the Freudian slip where you accidently let out some secret truth. That must be the glitch. When they say the exact opposite of what they have been saying all along. Read the definition of sarcasm and see if you could figure out when it occurred by that definition. Here's mine, when you say the exact opposite of what you mean with some odd intonation or facial expression and sometimes a wink. Why you would do that or how they know when to do it. I still have no idea. I can even be sarcastic through lots of practice but why???

Sorry I left the subject. I have been angry about injustices and ugly misunderstandings that could easily been prevented but I had no clue I had offended and instead of informing me of the error I had made and the harm that resulted, giving me the opportunity to apologize. explain and make amends they took brutal revenge nearly destroying me a few times. Even those events are so much easier to cope with now. I tell them I have Aspergers and give them some links to the stuff you guys write and say about the struggles and the ever present faux paux.
I can certainly imagine how different... better my life would have been diagnosed in my teens but I am too stupid happy to know that I am part of a kind. A member of a brilliant beautiful collection of misfits and we may have a syndrome but we are not a disorder though we may be a diff-order.
Somehow, I was able to overcome the social blunders and marry... 6 times. No one ever calls me a quitter.

And by the way, I think your anger is righteous and please do not let my lack of sharing in it take that power and energy from you. Use it, grow it, and tell me how I can help because that is how we change things. If more people know about autism and know the signs, 1st Aspians will get diagnosed sooner but even more importantly the NT's will come to realize our poor abilities at a compliment and maybe see it for what it was, not what it sounded like.

Dr. Kevin M. McFarland, PhD
Fight Injustice the A.I. is watching
She chose to be female and the name ABBY

Diagnosed at 25 or so and it was 10 years too late.

I don't think I would have got diagnosed with Asperger's syndrome if I wasn't so afraid of the bells at school as a kid. My reaction to the bells made me look obviously autistic to many adults but I was too embarrassed to say that I was just afraid of the bell.
And it wasn't just the act of covering my ears, my bell phobia also made me afraid of change and alienate myself from my classmates. So to a diagnoser's point of view, I was autistic, but in reality only I knew that my actions and anxieties were from the phobia of bells. If bells didn't exist, I might have been unrecognisable as an Aspie.

The bells made me fear change at school because I revolved my whole school life around avoiding the bells when it was due to ring so I developed a system to make sure I was not near any bells, and with a lot of mental work to make my system as discreet as possible I could actually get through each school day without being startled by the bell. But if there was a change one day, like a temporary schedule change, it would mess my system up and make avoiding the bells harder, if not impossible. If they'd never invented the damn things then any temporary changes at school wouldn't have been a problem. But from another person's point of view, I just looked like a child who didn't like change because of just wanting sameness.

And if I couldn't avoid a bell, like if we had to wait outside a classroom because the teacher was late and the bell was about to ring for class to start, I would stand away from the bell and it looked peculiar if all the other kids were all right near the bell because it looked like I just wanted to stand alone, but actually I so badly wanted to stand with the other kids and chat. So that didn't do my social life much good. And if I couldn't avoid a bell at all, I'd have no choice but to stare at my watch then put my fingers in my ears when the bell was meant to ring. That looked very autistic, and the teachers probably thought that I didn't like the noise of all the children chattering, but again it wasn't that at all. I could easily filter out the sound of children chattering, just like NTs can.

So all this probably went on my assessment: covers ears at noise, resistant to change, and stands away from the other children in hallways. I wish I had just told people that I was only avoiding the bell. I did want earplugs, but we didn't have any at home and I was too embarrassed to ask my mum to buy some for me. I had swimmer's earplugs but they didn't seem to block out sound.

I used to put my fingers in my ears. It was the suddenness of the bells or buzzers... I was told off for setting my alarm on my watch early but it told me when to expect the buzzer or bell... But also I did not want to be in school. School years and especially college were horrendous years for me. I don't blame anyone. Is just every day was a day of stress, especially each morning when the anxiety hit. Routines are good but secondary school and collage routines hardly exist... I hated going from class to class and having so many teachers.. (Most teachers were nice. I did not like the ones who would shout (Nothing against them personally)).

Agreed about buzzers or bells. Very strict schooling , never thought of any of my teachers past 2 grade as being particularly nice.

Yes.

At the same time, would my life have been better if there was active awareness of my autism, or would have it been worse?

That’s a hard one to answer . Depends at what age you became aware of it .?

I was diagnosed this year at the age of 56. I certainly could have used an earlier diagnosis, but ASD had not been invented when I was young. Yes, it has been hard without a diagnosis and the NT world is not kind or thoughtful. Looking back on school reports when I was young, I am angry at the ignorance and arrogance of my teachers. No wonder everyone in my generation is so messed up.

When I meet peers who were diagnosed early it makes me question how resentful I should be towards not being one of them; I wonder if the label would have hurt more than the lack of understanding did.

Knowing the label from a young age isn't always as desirable as it may sound, especially if you're Asperger's (or HFA). Being forced to attend several appointments to be assessed can be distressing for a child. It certainly was for me. I think it's because I thought I was bad and that they were going to take me away from my parents or something. But it was mainly because I felt "insane" and "abnormal", being so none of my peers had to go through all this.
I was getting extra help in school before I got diagnosed, so if I just carried on receiving the support without having to go through all the process of getting a diagnosis then I would have been happier.
Also I was observed in the classroom and in the playground by an assessor when I was aged about 7 or 8, and I felt like a bug under a microscope. Then I started getting paranoid that I was being watched all the time even at home.
I just don't think it does a child much good to have to go through all this, unless the child is LFA or has little awareness of the world.
Let the child live like a normal child and give them the option to get a diagnosis in their teens or adulthood, where they can be in control.

This is very similar to my experience. I was 12 or 13. The appointments were very scarring and nothing was properly explained to me so I was just angry and confused. It resulted in denial until adulthood. Plus my parents, who should've been more understanding from the diagnoses, actually made things worse most of the time. I also can relate about feeling paranoid about being monitored (parents read my journals, wouldn't let me have a lock on my door, monitored everything I did on the computer, and had many talks with my teachers & counselors).

The thing is I was 'put under the microscope' so to speak, it's just my parents decided the evaluations were distressing to me, weren't going anywhere and that the partial answer (already diagnosed with ADD) was adequate.

I basically spent the rest of my childhood hiding everything, developing compartmentalized thinking and doing even the most mundane, innocent things in the most secretive, sketchy ways imaginable. I can't imagine if they had of been more pro-active in violating my privacy like some people here describe.