The double-edged sword of a late diagnosis

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I'm also late dx, but I have to say I don't really know what life is like for younger spectrum people nowadays. In many ways, on this board, they sound similar to how I remember things. All of the angst and confusion is still there. See the Love and Dating thread. So, I don't know what would have been different. There's no medication, nothing other than a label and an explanation.

I've wanted to start a thread asking that, like "twenty-somethings, how has diagnosis helped you?". Maybe with that info I could answer the double-edged question you ask. So far it feels like my life would be about the same, which I'm coming to accept.

You all make some great points. I agree that not being diagnosed early forced us to adapt and grow in ways that we wouldn't have otherwise.

On the flip side... I'm reminded of the messages I heard in school about being lazy, etc. My cognitive ability is extremely high, my executive functioning is extremely low, as evidenced by both my life experiences and clinical evaluations. When I was in 7th grade, I was put on a progress tracker at school. I had to bring it to each of my teachers every Friday for a progress report, and they kept a close eye on me during the week as well to keep me on track. My grades soared. My mother would tell me "you should be ashamed of yourself, needing the teachers to stay on you like that." At the end of that quarter, my grades had improved significantly, so they took me off the tracker. And my habits and thus my grades went right back to where they were before, and where they'd always stay. My mother would often point to that experience later and say "See, you can do it, you just don't want to. You're lazy."

I nearly failed out of high school, and I took six years to finish a bachelors degree. I failed out of one college. I had to pay my own way like many do these days, but I never got grants or scholarships; I filled out the financial aid application late all six years, and all that was available after the deadline was student loans. Today I have $50k in student loans.

So for me personally, I would have benefitted immensely had someone noticed that I had executive functioning deficits and I wasn't just lazy.

I've got plenty of years left, and it's nowhere near too late for me to make up for what could have been. But I was thrown in the deep end with no supports like everyone else was, and socially it may have had its benefits, but in terms of the EF deficits, all it did was convince me that I'm lazy and incompetent, which is no way to go through life, and it held me back.

So I guess, on balance, being diagnosed late had its good points and bad. I'm not religious AT ALL, but I do believe we were put on this (foreign) planet for a reason and our lives take the paths they do for a purpose, so we have to sit back and enjoy the ride, whatever it brings us.

I agree with you about the EF issues. I am scarred from that, maybe even permanently so. I often believed the comments people made about me not knowing that I was actually impaired and disabled. That really affected me in a negative way and I struggle every day to believe and understand that it is due to my disability and not because I am lazy and unmotivated or don't care.

And it's funny about what Androbot mentioned about Simon Baron Cohen saying that we are less than human because when I was a young teen, I literally and honestly thought that I was not actually human because I was different form everyone that I knew but could never understand why. And I could not understand why people did not like me and why the other kids did not want to play with me or hang out with me. I was very close to the animals in my life and they all accepted me and loved me so I just figured that I was not actually a real human.

Also, if anyone has skype, feel free to add me - higherprimate28

I was also diagnosed late, and I can't say I dwell too much on how my life might have been different as I generally don't like spending energy on things you can't change.

There are probably pros and cons for both early and late diagnosis, however I think I'm maybe more resilient due to my later diagnosis. I think people diagnosed young are maybe mollycoddled and given too much help. I remember when I went to a local support group (out of interest more than anything, I only went a few times) there was a woman there with her daughter. The daughter was maybe 16 or 17, and the mother (who did all the talking) was telling other people about all of the allowances her school are making, about how great it is they let her do this, that and the other....and all I was thinking was "When you get into the real world, and get a job, no-one is going to give you these allowances". I think growing up undiagnosed I was maybe toughened by the process, learning that I had to just struggle through things.

Would it have alleviated some of the anxiety and self-hatred I felt from time to time, seeing people make friends and so on, having none of that myself? Probably, yes. But as I said at the start, there is little point dwelling on these things.

I think another difference for me is that as I lived the first 30+ years of my life undiagnosed, just living life as best I can, I don't see why I shouldn't live the next 30 years the same way. The only people I tell about my diagnosis are partners; I don't tell work colleagues, friends, even my family. I've done ok up to now with people thinking I'm maybe just a bit odd, a bit aloof or off-hand but I'll take that over being patronised and treated like I was ret*d any day.

I am different then most very late diagnosed here in that I have never been in a relationship and always had little or no friends. Job situation has ranged from pretty good in early adulthood to atrocious. I have allowed myself to be bullied most of my life so not bieng diagnosed has had some very negative consequences.

Let tell me you what actualy happened in 1965 after 2nd grade then draw up some alternative scenarios. My public school threw me out as was legal at the time because they could not get through to me. My mom was told home school him or send him to a private school. A private school was found, a psychologist was found. If a diagnosis was given it has been long forgotten. After fourth grade the money ran out and I guess I has progressed enough as my public school accepted me back. It was to soon. From there I was mainstreamed which was the only stream in those days until earning a B.A. degree.

In scenario 1 I am diagnosed with autism in 1965 with autism as it was understood then. My parents would have been told by there is no hope that I must be institutionalized for life. Further my parents would be advised to remove all reminders of me such as pictures from the house. Years of psychoanalysis would be recommended to find out why they hated me so much that they treated me so coldly that I became less then human. My "refrigerator mother" would been ostracized in her neighborhood.

In scenario 2 I am a teen who is diagnosed with an ASD with the technology and knowlege of the present. Instead of finding out some things about myself through trail and error I will be told what I can not do. I would know from the internet a lot of people think I am a mutant caused by a vaccine, the nations best scientists are reasearching ways to cure me, I am widely viewed as part of epidemic, parents grieve when they get an autism diagnosis. In school I would be getting plenty of "support" to help me become less autistic. I assume my autistic brian would see through all the positive, politically correct language. Another type of "support" I could plausibly get today would be coddling by people who think I am a "special snowflake" . I would be dealing with all of this with the maturity of a teenager.

Bottem line I am very glad I was not diagnosed young and did not have to deal with the above. That I feel this way after all the difficulties I did encounter from not bieng diagnosed infuriates me. Despite real progress made we have gone backwords in a number of important ways.

I have my assessment in a couple of weeks. I have no idea whether an earlier diagnosis would have benefitted me but thank God I have made the realisation now, as I couldn't carry on living like I did before. I felt very 'aspie' when I was younger (without realising it) then learned to adapt and become very sociable. Now I feel like I've regressed and am even more aspie than when I was a kid/young teenager. The difference is in those days I was so lonely and longed for friends and being around people. Now I've had my fill of that and I want pretty much everyone to go away. I feel like I could just be a hermit and literally just see my partner and noone else and just spend time with my pets and ignore the f*****g world.

So I don't know how things would be now if I'd have known a long time ago. If I was aware of how draining people were and how most of my energy went into trying to please others and adapt myself so much for everyone else's comfort, maybe I'd have done something different with my time.

Married, kids, grandkids, late diagnosis. I first suspected something in the autism spectrum in 1982 when the characteristics were described by someone on TV, then was diagnosed about 8 years ago. It's a long story, but being picked on in school still causes me problems with handling criticism in my 33 year marriage.