For those with a late in life diagnosis...

Page 4 of 5 [ 67 posts ]  Go to page Previous  1, 2, 3, 4, 5  Next

eilishbillie987
Deinonychus
Deinonychus

Joined: 1 Apr 2019
Age: 36
Posts: 357

05 Apr 2019, 9:18 pm

so much regret .. so much grudge .. so much regret .. so much regret .. so much regret .. so much regret .. so many misdiagnoses in this world .. so many non-diagnoses in this world .. so much regret .. wish someone had lent me a hand five years ago .. ten years ago .. fifteen years ago .. twenty yeats ago .. twenty five years ago .. so much regret ..



Tom of the North
Emu Egg
Emu Egg

Joined: 6 Apr 2019
Posts: 5
Location: Scotland

12 Apr 2019, 7:55 am

I've just joined and this is my first post, Yay! There's a lot of interesting things being said so that's encouraging for me. Anyway! I was diagnosed as having Asperger's at 55 after a mental health crisis. For me it was a game-changer since the diagnosis crystallised my life in an afternoon. The effect of it was radical at first then more slow-burning as I began to realise that some of my close relations also had characteristics of autism, with others having only fragments.

I grew up during the baby-boom of the sixties, when people tended to have larger families, so class sizes at school were bigger. Primary schools were more interested in making sure kids learned the 3 r's and didn't lag too far behind. I don't think that teachers were even cognisant of the signs and subtleties that define Asperger's as a condition. I'm pretty sure that my teachers would have noticed if I was disruptive, but I was just a quiet introverted child with average intelligence, but creative, who didn't cause too much disruption, so I would have passed by fairly unnoticed.

It wasn't until I was a teenager that things began to go wonky for me anyway. My dad was a strong believer in character development in bringing up families so I mimicked him a lot during my pre-teenage years, it wasn't until my teenage years and early twenties that I realised I had been left behind, friendless, and living my life in a different universe, so my genetic blueprint was overriding all the stuff that my dad had taught me about character being the most important thing in life.

I think what really bugs me most is that I have creative capabilities that could have been developed if the signs of Asperger's had been recognised at an earlier age. The first indications occurred around 25 years ago. It was a psychologist who first hinted that I might have Asperger's syndrome, although at that time I didn't know what the condition was. When she told me that it was a mild autism I freaked out and couldn't accept the label. It also has to be said that this initial observation came before the internet really became established that I became more accepting of the probability that I had Asperger's. Anyway, the fairly recent diagnosis is probably too late in the day to have a profound effect on the course of my life. Parents, teachers, and health professionals are more likely to be more clued-up these days on the signs if their kids are showing signs of autism simply because of the internet sources now available.



Dear_one
Veteran
Veteran

User avatar

Joined: 2 Feb 2008
Age: 75
Gender: Male
Posts: 5,717
Location: Where the Great Plains meet the Northern Pines

12 Apr 2019, 8:09 am

Welcome, Tom. I remember those large classrooms, but I think it was due more to the lack of school construction. In grade 9, I was on shifts because nobody had noticed that all those elementary school kids would probably graduate. I got my education from books, and am sure that was best for me. An enriched program must have some benefits, but they are also much more limited by the imaginations of the teachers.
Much of my development has come from asking simple questions such as "how does sleep affect your moods" yet counsellors have never managed to come up with any of them.



wbport
Sea Gull
Sea Gull

User avatar

Joined: 16 Sep 2012
Gender: Male
Posts: 220

12 Apr 2019, 8:22 am

I've always known I "don't fit the mold", but didn't realize I was an aspie until about 10 years ago. Have always enjoyed chess and making music and recently retired as a computer programmer. Still, I feel like life passed me by.



Sahn
Veteran
Veteran

User avatar

Joined: 14 Jan 2018
Gender: Male
Posts: 5,503
Location: UK

12 Apr 2019, 9:14 am

I was diagnosed last year. It's helped me to make sense of my past (I haven't felt bitter).
This site was useful at the time.
I don't really do society, so disclosing my AS isn't an issue. I told everyone that I'm close too. That was OK too, it's not in the forefront of my mind much anymore, it's just life as usual but with a few more answers.



Tom of the North
Emu Egg
Emu Egg

Joined: 6 Apr 2019
Posts: 5
Location: Scotland

13 Apr 2019, 9:17 am

A diagnosis wasn't just an epiphany for me it was an unveiling of just how far-reaching autism is in our family. We had ignored all the quirks and oddities that manifested themselves in the maternal side of the family as eccentricities, but when my niece's son was diagnosed as having Asperger's around 5 years ago, it had a domino effect on 6 other relations at least, (with others having fragments) although only 3 have been diagnosed as far as I know. So the last few years have been a revelation for all of us to say the least.



Fern
Veteran
Veteran

User avatar

Joined: 6 May 2011
Age: 38
Gender: Female
Posts: 1,339

13 Apr 2019, 12:18 pm

KissMyDirndl wrote:
Were you sad/bitter for the autistic child you once were for falling through the cracks?


No. I had a lot of struggles as a kid, so even though my parents didn't know I was on the spectrum, they could tell that I needed support. My parents took me to speech therapy, tailored their disciplinary techniques to diffuse rather than punish my meltdowns, and even helped me get special testing accommodations at my school. My parents did a lot for me. They messed up a LOT, but they also tried a lot. I am very thankful for that. My dad even bought me a hammock for my bedroom, because he read somewhere that it was soothing for ADD kids (I was diagnosed with that at the time- it was the 90s after all). That hammock was awesome. I used that thing till it broke.

Quote:
Were you mad at the important people/mentors in your life who failed to take that child seriously?


This I can relate to this a bit more. I was the youngest and -well- the only "special" one in my family. My mother always considered me the not-smart-kid, because of my special needs. When I was 12 she asked me what I wanted to be when I grow up. I told her "a scientist." She started laughing. Not just a little, like laughing till she had tears in her eyes. Once she got herself together, she looked me in the eye and said "Honey, you're not smart enough to be a scientist." The joke's on her, because I went on to get a merit-based scholarship covering my full tuition to university. I graduated with a Bachelors of Science Cum Laude in Biology, then went on to get a series of graduate fellowships which I used to get my PhD in Biology in 2017. I now work full time as a Postdoctoral Researcher at an R1 institution, and I have a job interview next week for a Tenure-track Assistant Professor position.

I spent several teenage years believing my mom. It took a lot of courage (and encouragement from others) to go against her suggestions and to sign up for the classes I wanted to take anyway. It takes a lot of grit to expect more from yourself than others expect of you. My parents did a lot for me, but that one I had to figure out by myself. I'm glad I did though, because I truly love my job.

Quote:
What is your stance on disclosing this diagnosis to the people in your life? I am not talking about family, rather the friends and acquaintances who have known you for a long time. Part of me believes if my friends knew I was Autistic they would have an entirely different perspective on me and my past behaviors/meltdowns etc. At the same time though, I am worried about the stigma, judgement and/or people thinking that I am just attention seeking.


I don't tell most people. I'm afraid people will see me in the same way my mother saw me as a kid. I'm afraid people will start putting those "can't"s back into my life. I also feel as though my mental health is a super private topic. I'm not obliged to share it with anyone I don't want to.

That being said, I find that when I tell strangers, they tend to just accept it. Close friends and family on the other hand think they know everything there is to know about you, and sometimes they get hurt when they are confronted with the reality that they don't.



Antrax
Veteran
Veteran

User avatar

Joined: 23 Feb 2019
Gender: Male
Posts: 1,639
Location: west coast

13 Apr 2019, 12:44 pm

Tom of the North wrote:
A diagnosis wasn't just an epiphany for me it was an unveiling of just how far-reaching autism is in our family. We had ignored all the quirks and oddities that manifested themselves in the maternal side of the family as eccentricities, but when my niece's son was diagnosed as having Asperger's around 5 years ago, it had a domino effect on 6 other relations at least, (with others having fragments) although only 3 have been diagnosed as far as I know. So the last few years have been a revelation for all of us to say the least.


Similar to me. After my diagnosis my family is very certain my mother and her father are also on the spectrum.


_________________
"Ignorance may be bliss, but knowledge is power."


Alterity
Veteran
Veteran

User avatar

Joined: 7 Feb 2019
Age: 36
Gender: Female
Posts: 627
Location: New England

13 Apr 2019, 5:21 pm

KissMyDirndl wrote:
Were you sad/bitter for the autistic child you once were for falling through the cracks?

Were you mad at the important people/mentors in your life who failed to take that child seriously?


You betcha. I actually went through my angriest stage before I had my diagnosis. Before I even knew I might have Aspergers. This might not make a lot of sense, but the handling of me by teachers and the like was just plain bad, never mind the diagnosis. I went through a second wave of anger once I was diagnosed and I still feel contempt for those people. I don't spend my time dwelling on it but when I do think back to those days my contempt comes up and if I were to run into any of those people...well same.

Quote:
What is your stance on disclosing this diagnosis to the people in your life? I am not talking about family, rather the friends and acquaintances who have known you for a long time. Part of me believes if my friends knew I was Autistic they would have an entirely different perspective on me and my past behaviors/meltdowns etc. At the same time though, I am worried about the stigma, judgement and/or people thinking that I am just attention seeking.


I wouldn't say I go to people announcing that I have Aspegers but with various social media, I make no secret of it. So if anyone is paying attention they would be able to very easily put it together that I have ASD. Otherwise I suppose I only tell people if it comes up in some way with speaking with them.

I'v never really thought about any stigma it might have or that it might change the way people think of me. But I also didn't really have anyone that I was all that close to, so even if they were to back off after finding out it wouldn't have been any different than my current situation. Actually in some regard I wanted people who I've known and have been kind of dorks or worse to me to know. Sort of me wanting to throw it in their face... "you mistreated someone with autism!" But that kind of goes back to the anger thing x.o As far as attention seeking goes, I can't say I care/d. I was ignored for so long that if people think I'm just trying to get attention they obviously know nothing about me.


_________________
"Inside the heart of each and every one of us there is a longing to be understood by someone who really cares. When a person is understood, he or she can put up with almost anything in the world."


Harpuia
Raven
Raven

Joined: 30 Mar 2019
Age: 37
Gender: Male
Posts: 112
Location: Atlanta, GA

13 Apr 2019, 5:38 pm

I was diagnosed in 2012. My family disowned me shortly after finding out it was considered a lifelong mental disease.

They pictured a dark future for me, one where I would become unemployable, homeless, and die on the streets, and they would abandon me. They were the only ones to help me during my Crohn's diagnosis in 2014 but they did it with a catch... I had to become everything they wanted me to be, and they treated me like a dog if I didn't. And I wasn't in any frame of mind just coming out of the hospital barely alive from severe anemia to do anything but try my best to please my parents and I'm basically a 27 year old acting like a 14 year old again.

They abandoned me after I came to and I deconverted from Christianity and I told them I couldn't do this anymore. I didn't realize that by letting my parents manipulate me I lost almost all of my internet friends and had to start over and all of my RL friends too. They did their best to shoo them away.

So I'm angry that I even got a diagnosis at all. My relationship with my family wasn't great. I know they were abusive to me, but so has every friend (except my current gf) and every work environment I've been in to me. So what my gf calls "indian gifts" are better than being treated like s**t day in and day out, right? Now with this diagnosis my once shaky relationship with my family is non-existent, I'm written off their will, and if I run out of money, I have nowhere to turn to and no resources to help me. And this causes more stress with makes the Crohn's flare up more.


_________________
Diagnosed with Asperger's/ASD March 2012
AQ: 32
EQ: 30
Rdos: Your Aspie score: 126 of 200
Your neurotypical (non-autistic) score: 90 of 200
You are very likely an Aspie


Antrax
Veteran
Veteran

User avatar

Joined: 23 Feb 2019
Gender: Male
Posts: 1,639
Location: west coast

13 Apr 2019, 6:02 pm

Harpuia wrote:
I was diagnosed in 2012. My family disowned me shortly after finding out it was considered a lifelong mental disease.

They pictured a dark future for me, one where I would become unemployable, homeless, and die on the streets, and they would abandon me. They were the only ones to help me during my Crohn's diagnosis in 2014 but they did it with a catch... I had to become everything they wanted me to be, and they treated me like a dog if I didn't. And I wasn't in any frame of mind just coming out of the hospital barely alive from severe anemia to do anything but try my best to please my parents and I'm basically a 27 year old acting like a 14 year old again.

They abandoned me after I came to and I deconverted from Christianity and I told them I couldn't do this anymore. I didn't realize that by letting my parents manipulate me I lost almost all of my internet friends and had to start over and all of my RL friends too. They did their best to shoo them away.

So I'm angry that I even got a diagnosis at all. My relationship with my family wasn't great. I know they were abusive to me, but so has every friend (except my current gf) and every work environment I've been in to me. So what my gf calls "indian gifts" are better than being treated like s**t day in and day out, right? Now with this diagnosis my once shaky relationship with my family is non-existent, I'm written off their will, and if I run out of money, I have nowhere to turn to and no resources to help me. And this causes more stress with makes the Crohn's flare up more.


You can choose friends, but you can't choose family. In my opinion from what you've said, you're better off without them.


_________________
"Ignorance may be bliss, but knowledge is power."


Serpentine
Snowy Owl
Snowy Owl

User avatar

Joined: 2 Aug 2018
Gender: Female
Posts: 167

14 Apr 2019, 8:54 am

Antrax wrote:
You can choose friends, but you can't choose family. In my opinion from what you've said, you're better off without them.


With friends and family like that, who needs enemies?

I do feel sad for the child I was who slipped through the cracks and didn't get help that might have made a difference in how well I function and cope today. I feel sad for the child I was who knew that there was something different about me but didn't understand what it was or that it could be a gift as well as a burden. I feel sad for the child I was who was poorly treated and ostracized by both peers and family.

That's the past though. I'm glad that at least now I understand what makes me tick and why I am the way I am. The late-in-life discovery of that childhood diagnosis has been a galvanizing experience. At first I was horrified and certainly I felt betrayed that I was never told. But it's finally stamped out the confusion, feelings of failure and self-loathing I had because I operated under the assumption that I was supposed to be like everyone else.

My family tends to get very defensive when I bring it up. They don't want to discuss it. They won't give me straight answers. They seem to feel attacked even though I am careful to use neutral tones and phrasing when asking questions. They just snap that they did the best they could with what they had and can we please change the subject right away? Unfortunately it's a dead end, which is a pity because there's a lot of insight to be gained when looking back on childhood experiences as adults.


_________________
"That isn't damage. It's proof of what you can survive."

- Joanne M. Harris, The Testament of Loki


BenderRodriguez
Veteran
Veteran

User avatar

Joined: 9 Feb 2012
Gender: Male
Posts: 3,343

14 Apr 2019, 9:33 am

Antrax wrote:
Harpuia wrote:
I was diagnosed in 2012. My family disowned me shortly after finding out it was considered a lifelong mental disease.

They pictured a dark future for me, one where I would become unemployable, homeless, and die on the streets, and they would abandon me. They were the only ones to help me during my Crohn's diagnosis in 2014 but they did it with a catch... I had to become everything they wanted me to be, and they treated me like a dog if I didn't. And I wasn't in any frame of mind just coming out of the hospital barely alive from severe anemia to do anything but try my best to please my parents and I'm basically a 27 year old acting like a 14 year old again.

They abandoned me after I came to and I deconverted from Christianity and I told them I couldn't do this anymore. I didn't realize that by letting my parents manipulate me I lost almost all of my internet friends and had to start over and all of my RL friends too. They did their best to shoo them away.

So I'm angry that I even got a diagnosis at all. My relationship with my family wasn't great. I know they were abusive to me, but so has every friend (except my current gf) and every work environment I've been in to me. So what my gf calls "indian gifts" are better than being treated like s**t day in and day out, right? Now with this diagnosis my once shaky relationship with my family is non-existent, I'm written off their will, and if I run out of money, I have nowhere to turn to and no resources to help me. And this causes more stress with makes the Crohn's flare up more.


You can choose friends, but you can't choose family. In my opinion from what you've said, you're better off without them.


Seconded. I'm almost ashamed to admit, considering I've had some personal and professional achievements I never would have thought possible when I was young, that the best thing I ever did for myself was making sure that my biological "family" permanently stays away from me and my loved ones.


_________________
"Facts do not cease to exist because they are ignored." Aldous Huxley


Dear_one
Veteran
Veteran

User avatar

Joined: 2 Feb 2008
Age: 75
Gender: Male
Posts: 5,717
Location: Where the Great Plains meet the Northern Pines

14 Apr 2019, 11:43 am

I don't resent my family because they were muddling through in a world very different than their parents'. It had fallen apart before I even realized that family support was more real than Santa Claus or Military Intelligence. I was shocked to hear that other parents would help with homework and considered it cheating. My parents never gave satisfactory answers, perhaps because they wanted to get their money's worth out of a set of encyclopedias that I suspect father had not approved. Mother was an Aspie avoiding a mis-diagnosis, and left first. I was next. The NTs had a cozy time, and semi-disowned me, but dad died a few years on. I got the news in a 'phone call, and then returned to finish singing a song with my friends.
There are times when I wish I had the support of a family, but at least as many when I'm glad I'm not in one of the less functional families.



ASPartOfMe
Veteran
Veteran

User avatar

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

14 Apr 2019, 2:25 pm

Dear_one wrote:
I don't resent my family because they were muddling through in a world very different than their parents'. It had fallen apart before I even realized that family support was more real than Santa Claus or Military Intelligence. I was shocked to hear that other parents would help with homework and considered it cheating. My parents never gave satisfactory answers, perhaps because they wanted to get their money's worth out of a set of encyclopedias that I suspect father had not approved. Mother was an Aspie avoiding a mis-diagnosis, and left first. I was next. The NTs had a cozy time, and semi-disowned me, but dad died a few years on. I got the news in a 'phone call, and then returned to finish singing a song with my friends.
There are times when I wish I had the support of a family, but at least as many when I'm glad I'm not in one of the less functional families.

I can’t resent a lot of mistakes that were made on me because my parents and schools were dealing with a situation for which they nor anybody else had knowledge. Another words they knew what they knew. I am appreciative because despite their literal ignorance they did important things right like trying to get me in smaller groups and stressing individuals are different. I was swatted a few times but was never regularly beaten with a belt as which was not uncommon in those days.

No my parents never helped me with my homework but nobody else parents I knew about it did either. I would have viewed it as cheating also.


_________________
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


BenderRodriguez
Veteran
Veteran

User avatar

Joined: 9 Feb 2012
Gender: Male
Posts: 3,343

14 Apr 2019, 3:57 pm

If you read Harpuia's post, his situation goes way beyond clueless and ignorant, but essentially well-intended parents. So did mine. I stand by my position: if your parents abuse you and insist to perpetuate or even escalate the abuse into your adulthood, you're way better off breaking ties. Blaming and grudges don't come into it, do it in order to protect yourself and have a chance to heal and have a whole, sane life.


_________________
"Facts do not cease to exist because they are ignored." Aldous Huxley