Anyone else feel angry for not getting an early diagnosis?

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I was first diagnosed in 1964 but it was not called Asperger's then they said you were ret*d I was not super involved with that so I was treated badly pulled out of my class room and put in A storage room and sat there alone in 6th grade I was pulled out of class and stuck in special education part of the day then back to class and was beaten up and bullied I new something wasn’t right with me I fell apart in college and in 1986 I started taking medication for mental illness and still do a few years ago I was asked if was told I had Asperger's I didn’t know what it was finally I was diagnosed I wished I was diagnosed younger but at least I know why I was different than others

Hard to say, would any of my rejections over the past 5-10 yrs been any different if I'd have known and be able to explain rather than trying to act like a NT and failing to do so? If that's yes then I should be angry about it, though I'm certainly angry about where the discrimination, that is now obvious with the luxury of hindsight. Though that'd be implying I had a full diagnosis, when it's just a highly likely recommendation and an AQ50 test that took self referral to even get to that point. So it's of little surprise that diagnosis ages are so poor, as it seems to rely on self research or family research to even figure it out, as education (school, college & uni), careers advisers, mental health charities and GP's were all incapable of noticing anything or were more likely to see any self diagnosis as a sign of weakness so keep masking it was better. Nobody seems to make the connection that someone with obvious social difficulties that are life impacting and clearly academically gifted might be an Aspie?

Sometimes I wonder if I should have done better research myself, I must have gone through so many things searching for answers at various times so it feels a little shameful that I didn't even consider it. Until someone I knew got a diagnosis for it, as like so many I was never really informed of Aspergers or HFA. So when they got the diagnosis it shattered the illusion I had been presented by the media, society and education system throughout my life, as they didn't fit that expectation at all.

yes ...... very much so .. it was ridulous later on when , finally got diagnosed.That , my condition was more hidden from person s whom could have helped . By family , It made for a absolutely hopeless
upbringing ,, under constant threat of things . Possibly being worse for me . Think if had been caught early , could have done much more with my life . If not preoccupied with my own personal safety.
Could have easily directed energies to much better things . So have had to make do , And inspite of all these situations have managed not to engage in the worst life has, had to offer . Although it does seem , futile on some days . but must admit am pretty familiar with the worse life seems to have offered at times . Inspite of all my own efforts .

My parents' solution to everything was to
Be abusive (mom)
Or move countries n cities blaming the issue on external environment (which was partially true since North America and bullying towards innocuous but socially distant and quiet people is a given)
They both also have their own issues so they assumed it was normal or didnt see because of their own issues ?

my dad for sure has ADHD


mom for sure has a higher functioning form of autism than me

but had same feeding issues as my kids esp elder ( refusal to eat.. Same as him. She had to be force fed till her teenage years ... n only 1 person cd get her to eat which was her aunt next door)

However both are way way way more 'high functioning' than their kids

(except for my sister who is equally or more high functioning n has no issues whatsoever besides being mean from time to time but that goes for most NT ppl)

Mom i can understand as she had it rough in terms of raising 5 kids all by herself in a country she didn't know anyone in.. most of our lives as dad had to work in other countries.

She wasn't equipped but also 5 kids all born close together on ur own makes it tough for anyone to pick out n get diagnosis done etc esp if u are an immigrant.
But life is tough back then less supports fr parents of autidtic kids of any level

With a large family you basically have to get by as best you can i just think they shouldn't have had 5 kids in the first place given that my dad had no clue about how to be mature and settle in one place ..

and didn't plan anything about where to live .. as my dad just did things spur of the moment including moves. Everyone had to deal With the fallout.

Even conversations he cant focus for long he is so ADHD

it's actually crazy he has no diagnosis. But his parents had no opportunity either due to the Upheaval from the Partition and Independence from british both. No resources at that time.

My life was significantly harder. Early on I had zero friends. I had unusual interests. There was pretty heavy mental, emotional, and physical abuse and rejection by parent. It was hard to hold the sadness, loneliness, trying to figure out the world with noone to talk to.

I had testing done as early as 1st grade. In 1st grade I was pulled into the library as a facilitator opened a book and asked me what these things were called in my dad's native language. I believe this was done due to not talking at school.

In 3rd grade I tested at high school levels but... what does this actually mean? It didn't mean that I understood the basics of life, nor smart in any other ways, and my learning style is slow getting stuck a lot. I couldn't understand people making fun of me. My teacher thought I was making faces at gim due to needing glasses and facial tics. It has been a life of sorrow.

Similar to IsabellaLinton and acknowledging Fnord's point, I wish I had support, not necessarily a diagnosis (given the times 70s); the blow to my esteem was awful. I have not recovered yet. The neglect and belittlement (and my naiveté) was indirectly life-threatening to me and my ASD-like cousin did lose her life. Like kraftiekortie mentioned, I am the internalizing type (as was my cousin, as is my ASD-like daughter), so there was little help for me and lots of shunning and criticizing. I imagine it would have been so simpler for my parent to comfort me or to suggest ear plugs when I jumped a mile due to a sensory issue, rather than the opposite treatment I received. Now I have decades of habituated shame to shrug off. Where's the on/off switch for that?

Not so much. Diagnoses were rare things when I was a kid. It might have been useful for me to know 2020-era information about autism back then, sure, but it would have been far more likely I would only have been able to get some fumbled, half-baked voodoo guess about what it actually meant, which could easily have screwed me up as I was fairly naive and trusting.

Even if I had managed to somehow get modern and accurate knowledge, I'm not really sure exactly how much it would have helped. OK, yes, I would have had an explanation for why I was a picky eater or didn't have a large social circle, but it wouldn't have actually changed that in any way. Most likely I would have had my family try to 'help' by finding some specialist educational program or pushing me into more social situations without ever bothering to consult me first, the lack of consultation in particular being an unfortunately rather common occurrence, and one which annoyed me intensely. As it stood, I flew under the radar for decades, without any kind of expectations from people as to how I might (or "should") behave, and looking back I appreciate the chance I had to be able to make my own path in life.

Getting diagnosed later didn't change my life in any significant way. It provided a little clarity on some of what I had assumed to be merely personal preferences, and a few other aspects of my life, and I suppose it was kind of interesting in a fairly minor way. By that stage, though, I'd already pretty much become the person I was going to be. Simply being able to put a medical label on some parts of my life wasn't going to change them in any significant manner; it just meant I was a little more aware of them.

I am not angry about being not diagnosed early although I probably should be. I most likely had high level autism my whole life. My 2 younger siblings were both diagnosed early thanks to my parents taking them to a specialist. When the doctor asked about me they told him I was normal and did not need to be tested. I was finally diagnosed at 37 due to my advocating for myself finally. I always felt different than others my whole life and did not know why. Getting an official diagnosis was a big relief. I guess I am trying to learn how to deal with sensory overload issues now that I finally know that is what is going on. I am realizing that high level autism makes me unique not different and that it can give people talents they would not otherwise have.

like what Fnord had written but at least would of had understanding why certain circumstance that challenged me growing up my have been clearer .

I don't know where the switch is, but if you find it let me know.

Diagnosis also isn't the foremost in my mind, so much as lack of support. From family and the school system. One of my greatest hopes is that internalizing types are detected at a higher rate going into the future. It could spare a lot of confusion and harm for the next generation.

Reading all these posts is heartwarming but also makes me realize what a challenging “difference” we’ve all had to live with. Whether you’ve had a diagnosis early on or not really doesn’t change the fact that life is no fun without friend/social circles. I received a diagnosis at age 39 and I’m now 47. Nothing has changed and I am still struggling with the exact same issues I had when I was 5.

Sounds like most people posting here have faced similar issues of rejection and isolation. I try to look at the positives in my life but unless I go through my day without seeing a single person, my days are filled with so much adversity. I don’t understand the discrepancy between how I perceive myself (relatively normal) and how others perceive me (they avoid me).

But I digress. The point is diagnosis or not, people just don’t know how to be around Aspies so they just avoid them. It’s a raw deal because no matter how much you try to be constructive, people will still avoid you.

By the way I am not male. I just don’t know how to change that setting... if anyone knows please let me know.

Ah ha! I also felt I was relatively normal and confused that most folks couldn't/wouldn't relate to me.

I do not feel angry at all.

First of all, I didn't much need a diagnosis when I was younger because it's mainly the responsibilities of adulthood that disable me. I would not have had the motivation to fight for an evaluation (as I've had to do); it would have felt out of place in my life.

Second of all, I grew up in an ignorant and unsupportive family, where the best thing for me was to avoid attention, and goddess knows how my family would have reacted to a diagnosis. The ignorance and dysfunction are a large part of why no one in the family would noticed anything unusual about me and would not have been helpful with the evaluation process. I don't think I've ever been angry about the limitations of my family members; I just don't expect much of them.

Third of all, it wasn't until adulthood that I had a mature understanding of psychological and neurodevelopmental conditions and the limitations of doctors, research, and diagnostic concepts, and I'm afraid of how I would have psychologically dealt with a diagnosis, particularly in relation to my own identity formation, before having that knowledge.

I actually got some of the knowledge in the process of seeking autism evaluations, and that process felt most appropriate in adulthood because I had increasingly obvious struggles to contend with in adulthood (not as a child or adolescent).

Fourth, I've never suffered from the self-esteem issues related to spectrum-related struggles and failures that some other people seem to use or want to use a diagnosis to alleviate. I've never needed an evaluation for reasons pertaining to psychological distress. I have had some anxiety related to my inability to perform socially, but I found non-spectrum-specific ways to deal with that, and that process seems to have been a valuable experience, so I don't regret having gone through that anxiety.

Fifth, it just seems that it would be weird for me to regret that no one identified me because I never voiced any difficulties or showed any other signs of struggling.

In summary, an autism evaluation and diagnosis do not seem like they would have been appropriate when I was younger, certainly not in childhood or adolescence, but it could have been useful and more fitting for my twenties.

What would have helped me was someone diagnosing other people as neurotypical and explaining what I didn't know about typical people's social behavior and psychology.

Last edited by starkid on 19 Jun 2020, 11:34 pm, edited 3 times in total.

I think you need to ask a moderator to change it for you.

TBH I'm pretty sure my Dad is HFA and my Mum has anxiety and possibly ADD. They're divorced. So you could say their lack of diagnosis / treatment is a root cause!

I was a geeky kid but did okay until they divorced when I was 12, which was the first thing to rock my secure little world. Then at 23 my then-girlfriend miscarried and I handled it very, very badly and messed up the relationship in the process. At that point I developed BPD-style characteristics.

I have struggled with cyclical anxiety and depression ever since, always centered around work and relationship woes. I managed to cover a lot of things up with a variety of bad coping mechanisms for many years, and outwardly appeared quite successful I guess, but I never felt right and a lot of things went wrong that shouldn't have done, or at least not to the extent they did.

I'm now struggling to do a minimum wage, permanent night shift job, my home is a mess, and so are my finances. I am single and have few friends. I have diagnosed ASD (from earlier this year, at age 44) and suspected ADD, and I personally suspect I have BPD but it isn't assessed or treated here. I am desperate to re-train for a different career and go back onto working days but I'm struggling to concentrate well enough to learn anything new.

Sometimes I feel angry that it took 20+ years to get a diagnosis. There's a lot of stuff I need to unlearn. Mainly I feel guilty for making other people miserable when I was angry, which was normally when I was feeling at my most vulnerable. I can be a really sh***y individual when I'm down. I seem much better at getting on with cats and dogs than with humans.

BUT at least I have some clues now, and I'm not being prescribed Smarties that don't work and have horrible side effects. In time other things may improve.