The double-edged sword of a late diagnosis

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I was diagnosed at 45 - it lifted a veil for me, a weight off my shoulders - I must have spent most of my life trying to work out how the rest of the world functioned as it was a complete mystery to me and needed to be solved. I don't think the mollycoddling does any good, but it's not only ASDs that are mollycoddled these days. I always feel I would have benefited from having something like an agent or a manager to organise practical things I couldn't manage. But I have had to soldier on and try and get things done on my own - never satisfactorily successful, but I get by in my bungling way.

I have used alcohol mainly to function in the bigger world, but since diagnosis I have given up the grog as I don't need it any more - but that has diminished my socialising, which I'm not sure if I mind or not.

Early diagnosis would have had some benefits. I think that the way they do it these days is not the best way either - there should be some happy medium! I note on these forums that the kids these days still have to deal with a large portion of bullying, same as our generation. I often wonder which part of the personality is ASD and which is PTSD from the bullying.

I was diagnosed last year, age 49. I can see pros and cons of each. Yes, it did force me to become independent and self-reliant, but looking back, I realize that my self was not the most reliable For every big lesson I learned, there was a lot of trial and error and painful mistakes that could have been avoided with some guidance, or simply the knowledge that other people don't perceive the world the way I do. All the times I thought I was crazy and worthless, was told I was rude, insensitive, shaming the family, dramatic, sick, a psychopath (thanks, Mom!), tore down my self esteem to nothing. Certainly kids who are diagnosed young get bullied too, but they also have support systems and at least some people looking out for them. I failed a lot, and failed to achieve some goals that were very important to me, like my Master's degree. I was frequently unemployed or underemployed, and often victimized by people who used me.

I think there would also have been disadvantages to being diagnosed when I was young, since so little was known about autism. I've talked to adults who were diagnosed in childhood that went through therapies that sounded abusive, like ABA, chelation, and fad diets. A lot has changed since then though, so early diagnosis may be more helpful now.

When I asked my psychiatrist for a referral for evaluation last year, she smirked at me and said, "we don't do labels." I might have rolled my eyes a bit. I said, "I've already got plenty of labels, all of them negative. How about one that's helpful for a change?"

I hear that too- and I think back to how my parents tried SO HARD to change me (almost as if my parents did the think cureabee parents do without realizing they were doing it), would throw me into situations with no support and yell "SINK OR SWIM!! !", and then I would drown. No mollycoddling here. And all of that without knowledge- without labels (well I did have labels-lots actually: freak, whore, b***h, ungrateful, horrific, inhuman, alien, rude etc).

As Skurvey mentioned- I think a lot of the "personality tics" that autistics have are just hold overs from trauma and abuse that haven't been dealt with properly. Like just because one is autistic does not mean you MUST be cripplingly depressed, anxious, or incapable of any proper functioning.

I'm 63 and was diagnosed last month.

In the last month, I've written three articles for two autism websites, and had more discussions with people suffering from literal-mindedness, rule-respect, and inability to interpret other humans than I've had in the prior 63 years. I'm tired of it, so I'll be brief.

If there had been no stigma attached to autism when I was growing up, I would have benefited greatly from understanding why I liked animals and books more than people, and why I was considered cold and cutting (I thought I was being helpful by correcting people, and honest by not being tactful). I would have found work-arounds, as I do now, and avoided alienating people I did not want to alienate.

However, because there WAS stigma then and now, I would not have had the educational and employment opportunities I enjoyed.

Amusingly, because no one knew I was Aspie, because I was educated and worked in traditionally male institutions, and because I was attractive, my differences were forgiven as female foibles. My bosses told me I wasn't "a leader of men," and so would never make partner at my elite law firm or general counsel at my two very large in-house corporations, but I was mostly left alone to creatively solve legal problems and paid as much as other female attorneys in similar positions. Even though they understood how to play political games and I did not.

On the other hand, I believe my failure to be diagnosed earlier harmed my personal relationships and destroyed my belief that I could rely on people close to me. Had I been diagnosed before my early retirement, I would never have assumed my husband actually shared my ethical imperatives; nor would I have felt so betrayed and shocked when I discovered that he was not faithful to our agreements from conviction or honor, but only only so long as I was paying the bills.

In sum: professionally, I'm pretty sure my late diagnosis benefited me. Personally, I'm sure it harmed me.

You WERE being helpful and honest, but NTs are too worried about political correctness and social stuff to realize that.

Right you would have had a different wife and kids but probably not that different.

My mother signed me up for every activity and group she discovered. Gymnastics, dance, music lessons, girl scouts, church stuff, various sports teams; if it happened I was there. She was forever telling me to smile, to speak up, to pay attention. Looking back, I think she was trying to socialize the weird out of me. I don't think any of it did much good, though. Because I assumed everyone else's internal life was the same as mine, I thought they were all just pretending to be social. I thought they were all liars and fakers, and I despised them for it.

This really hit home for me. I feel that the the difference with me. and I am sure that many of you who were not diagnosed as children can agree, is that when I got bullied, I was expected to handle myself with no help. Those bullying me always made it seem like I was the instigator, or always made it so that the adults only saw my reaction and not what they did and so I got in trouble for reacting while what they did to me went unnoticed. And nobody believed me because they only saw what I did to react. I was not savvy enough so they could always get me and, get away with it, and then have me be the one to be punished for the incident. And having meltdowns and shutdowns did not help matters either. Autistic kids now are much more supported by their families if they get bullied.

Bullying was considered a normal thing kids did, at best if you could or did not fight back that was too bad but life is unfair, but most considered it a sign of weakness and homosexuality which was considered outside of bieng a murderer the worst thing one could be.

Parents did not question teachers or any authority be it police or doctors. If teacher said so and so happened that is what happened, case closed. There was no accomodations of any sort. If you flunked you repeated the grade. No lifts on buses and wheelchair access was an unknown concept. If you got poor grades or could not do what was expected of you at that age you were "slow".

A common expression was "kids are meant to be seen not heard"

Last edited by ASPartOfMe on 31 May 2016, 4:45 pm, edited 3 times in total.

That must have been awful. My Mom used to tell me to smile all the time, but she didn't force me to do activities.


I remember feeling that way sometimes too. I wondered how they were able to socialize so easily.

Hi all.

Didn't get diagnosed until age 69...now I'm 73.

Would my life been different if I'd known about AS much sooner? In the '40s and '50s people were pretty clueless so I couldn't have known much until the early '80s...but I would already be 40 years old by then.................
...............But if the knowledge about AS was available 40 years sooner (or even 20 years sooner) my life definitely would have been different if only because of information also available to parents, teachers, etc.

It's hard to know specifics, however. Would my educational progress have been improved: ?????? Would my social life have improved: ????? Would anything have changed for the better: ?????
All guesses...nothing more.

The only thing FOR SURE I'd have done differently, would have been the education of my children. It hurts me even now to know I was unable to give them (2) a true accounting of my life, and how this could effect their life (and all the interfaces with schools, etc., this entailed). This hurts to know, in this respect, I've failed my children.

My mother also used to sign me up for everything, but it did help me, because I used to have good friends at those activities. And if I didn't, I had a lot of fun.
In fact, stuff like gymnastics helped me, because I spent more energy and had less meltdowns. I think my mother had some kind of intuitive knowledge about ASD even if she didn't know about the spectrum at the time.

Before my diagnoses, I was just told to ignore it, toughen up. Even before the bullying got frequent, it was just a slap in the wrist by the adult, told to leave me alone and that was the end of it. Even both of us would get into trouble if we both got psychical. That was the way it was then and it was seen as kids being kids and you punish them for it when they handle it poorly. That didn't teach me anything. Then when I was diagnosed, I was finally protected from the other kids teasing and harassment. I had no idea that bullying and teasing was totally different for an ASD child but when I look back, I was basically treated like as if I were normal so it didn't really work with me either so the school principal thinking I had to toughen up was really ignorant on her part because she didn't get it. But it's not just ASD who gets bullied, it also happens to kids with other disabilities as well and kids who are transgender or gay or come from a different environment such as coming from a poor family and they don't get to get protected unless they have an ASD which sucks donkey balls IMO. Now people are trying to change it which is good because they realize how bad it really is and the affects of it it does to the victims. It's not just kids being kids.

My mom also signed me up for activities but they were meant as therapy where I would be having fun than feeling like I'm broken and needed fixing. I did swimming one summer, I did pottery in second grade and voice lessons, I did gymnastics when I was 5-8 years old. I also did girl scouts once when I was six. My mom never forced me to do activities or sign me up for them just because without consulting me. I also did activities on my own and my parents would sign me up so I did basketball lessons, soccer, soccer camp, church camp, softball. I think these all were helpful for my social skills.

My mom used to ask me, "what did you say to make them want to hurt you?" I guess it was because I didn't know how to be tactful (i.e., lie), but a lot of times, it was just because I was there, or I was clumsy in sports, or I talked about the wrong things, or I talked funny (I had a bad stutter and speech difficulties).

Wow, this is what I have explained to people a few times just this past week almost verbatim.

Come to find out, that is a lack of ToM. Who knew?! Maybe all that socializing, smiling and laughter I saw others do was genuine after all. This never crossed my mind until about 10 days ago.