Do you regret being diagnosed?

[zaphod]

I'm 46 years old and currently in the process of getting a formal assessment. I believe it's just a formality.

ASD was not on my radar at all until I watched Love on the Spectrum about 18 months ago and thought hmm... I can really relate to some of these people. I put that thought on the backburner until a few months ago and took a bunch of ASD self assessment tests and scored really high on all of them. Started doing more research and found that all my little quirks are quite common with ASD... everything from my large head to my unusual pencil grip.

Everything in my life has felt more difficult than it should have been. So many failures, so much toxic anxiety... but somehow I always persevered. I have an engineering degree from a prestigious university, had a beautiful (now ex) wife, 3 kids who I adore, a 6-figure salary, own a nice house and car with no debt.

My list of failures is equally impressive. I have no friends. I am not close with my family and hold much bitterness towards them. My ex-wife used to be my "safe person" now hates me. My engineering career was a complete disaster. University was a disaster and I just barely got my degree. Relentless criticism from teachers and family about not living up to my potential. A near constant state of toxic stress. I could go on and on.

Looking back on my life, I've had some moments of true happiness. They all seem fleeting in retrospect but nevertheless, I am very grateful for them. I can also see that those moments of happiness would never have happened without relentless perseverance despite failure after failure. If other people can do it, why can't I? I kept trying, I worked through so much pain and accomplished things I thought were impossible.

Now... knowing why everything has been so difficult for me, I feel like that fighting spirit is gone. My depression and anxiety are probably worse than they have ever been before. Maybe it's because I'm going through this with no support system at all... maybe it's because everything that seemed possible before now seems impossible.

If I had a diagnosis at an earlier age, would I have kept trying after so many failures? ASD is a pre-baked excuse for almost every failure - would I have just grabbed ahold of that and ran with it? Would my wife or any previous girlfriend have wanted to pursue a relationship with me if they knew? Would I have been ostracized and bullied (more) at school/university if everyone else knew?

Honestly I hope I'm wrong, but my general feeling is that I would have had a worse life with an earlier diagnosis. I might even be dead.

I have a daughter who is struggling. We have so much in common. Pretty sure ASD. I have serious concerns that she would be better off NOT getting assessed. Going through this is the first time I ever felt completely hopeless. I don't want her to ever feel that way.

 

[Misery]

I dont know if this will help, but this is how I personally look at it:

Prior to getting diagnosed, everything was always so confusing, and people were always putting me in situations that I couldnt handle. But WHY couldnt I handle them? Was I just so weak-minded that I couldnt handle things that everyone else could? Naturally, I just kept getting put in situations that became problematic, with no way to do anything about it.

Then I got diagnosed, and that all changed. Now, the way I approach things is different. If I have a challenging situation that I have to deal with now, I can go into it already having knowledge not just of what causes the issues I experience, but what does or doesnt work to alleviate those issues. I know what specific factors to try to avoid in a situation to prevent "overload". I know WHY that happens, I know what type of things can cause it, and I know what to do about it.

And in situations where it helps to do so, I can inform people around me about the whole thing. Like, I had a full eye exam that I had to do just a couple of days ago, went into it quite nervous. As a kid I would have just descended into panic and nobody would know why. Now though, I was able to just tell them, hey, I'm on the spectrum, I have sensory issues, I can get panicky. And they're like, okay, we understand, we'll help you through it. And ya know what, they did that. There's a lot of rather unpleasant sensory nonsense that is involved in an eye exam, but I did indeed get through it just fine.

It's all like that. I have the understanding now that I didnt have as a kid, and it makes a lot of things so much easier. But only if I take that understanding and USE it. If I dont take the right steps in any given situation, if I dont puzzle out solutions (or at least partial solutions) based on what I now know, well, nothing useful is gonna happen.
That's the way I look at it, based on my own experience. I was diagnosed about 15 years ago. I will say, changes that help, strategies that work, these things dont come just immediately. It takes time, and experimentation, and learning... stuff like that. And being patient with yourself.

What I can definitely tell you now, is that you're in the right place to maybe get some assistance and ideas in terms of what might help, what maybe to avoid, and stuff like that. Exactly what this forum is for. Whenever you have concerns or questions, really, do feel free to just make a post about it. Everyone here is generally happy to help.

 

[Outdated]

Honestly I hope I'm wrong, but my general feeling is that I would have had a worse life with an earlier diagnosis. I might even be dead.

This does seem to be a bit of a trend, one I've pointed out before a few times. Those of us who grew up knowing nothing about autism seem to have more successful lives in both employment and social circles than those that were diagnosed as children.

If I had a diagnosis at an earlier age, would I have kept trying after so many failures? ASD is a pre-baked excuse for almost every failure - would I have just grabbed ahold of that and ran with it?

I was an offset printer and I used to get used to train apprentices because I was far more knowledgeable than most and I have a knack for explaining things in simple terms that people can understand easily. So I played a big role in turning 16 to 18 year olds in to adults.

This is not an autism thing, this is a typical teenager thing - the transition in to adulthood isn't easy and the majority of teenagers will look for any excuse they can find to say it's all too hard and we expect too much of them. "It's not my fault, no one gives me a fair go because I'm black/gay/autistic/religious/asian.". Those excuses never went down well with me and were met with scorn and ridicule.

In hindsight for myself, it would have been helpful if I got a diagnosis in my late 20s, it would have explained a lot of things for me and I might have been able to avoid burning out in my late 30s, but I'm so glad I wasn't diagnosed as a child. It's a bit like forced ABA, learning to adapt to society and persevere regardless of issues.

I'm ASD2 by the way, and now on a pension for it, only got my formal diagnosis at age 55.

 

[Neonatal RRT]

I'm 46 years old and currently in the process of getting a formal assessment. I believe it's just a formality.

If I had a diagnosis at an earlier age, would I have kept trying after so many failures? ASD is a pre-baked excuse for almost every failure - would I have just grabbed ahold of that and ran with it? Would my wife or any previous girlfriend have wanted to pursue a relationship with me if they knew? Would I have been ostracized and bullied (more) at school/university if everyone else knew?

Honestly I hope I'm wrong, but my general feeling is that I would have had a worse life with an earlier diagnosis. I might even be dead.

I have a daughter who is struggling. We have so much in common. Pretty sure ASD. I have serious concerns that she would be better off NOT getting assessed. Going through this is the first time I ever felt completely hopeless. I don't want her to ever feel that way.

I am of the opinion that it's not the diagnosis, but rather how you internalize it. You are partly correct in the sense that for many of us above 40, and are of the ASD-1/Asperger's variants, able to function in this world without assistance, the diagnosis is more or less a confirmation of what we probably have suspected for years. "Something" wasn't quite right in our world, but we couldn't quite put a finger on the cause. The diagnosis serves as an answer as to why we were somehow "failing" in specific aspects of our life. We now know we aren't "failed neurotypicals" but rather normal autistics that interact with our world in different ways than others. There's a lot of value in understanding oneself.

As far as looking back at one's life and all the "should have, would have, and could have's", it's a hypothetical thought experiment, at best. Keep in mind, it was a very different world 20-30 years ago. It's difficult to put one's mind back into that environment and somehow predict outcomes had you known you were autistic back in the day. Would our lives be different had we known? Perhaps, but would it be better or worse? Speculation at best. Better off not thinking about it. It's not relevant at this point in your life. As far as it being a "pre-baked" excuse, again, this goes back to my first statement. It's how you internalize the diagnosis. Are you the sort of person who simply adapts and overcomes, with goals and aspirations, OR are you a perpetual victim wallowing in your own self-pity and floating through life aimlessly?

As far as your daughter goes, a diagnosis of an ASD could be helpful for putting her life into proper context and perspective. She could get the correct help she needs to be successful in life. That adapt and overcome mentality. Conversely, NOT knowing, I suspect, could actually cause distress because she may find that she doesn't have the answers as to why she is failing in certain areas of her life. That alone could lead to depression, anxiety, frustration, and a lot of other destructive emotions and behaviors. Again, it's not the diagnosis, but how things are internalized. If you approach things, again, with an open mind, an adapt and overcome attitude, I am thinking that some positivity can come out of it. Knowledge can be a powerful thing if applied constructively.

 

[kriss72]

To answer your question from the headline, no, personally I don't regret it, and I would have liked to know much sooner - It has allowed me to get a much better understanding of my self, and with that understanding asking for and getting help. - Would I have been in a different place if I had known earlier - yes - would it have been be a better place? I would need a time-machine to tell for sure, but I think it would - my un-diagnosed (before I really knew what ASD was) life was not sustainable, and I passed my breaking point - I'm in a much better place now, and I thank my daughter for that, as she was the one pushing me to take the first on-line test, and later seek a professional diagnosis and with that to get the support I need.

 

[zaphod]

Thank you everyone. It was cathartic just to write all that out.

Regarding my daughter, she is almost 13. She has always struggled with both school and with making friends, and with the few she has made, she always say that they treat her unfairly. I have seen positive changes with her this year. Her body language around her peers is so much better, she seems happier around them. I think she is figuring out how to mask and fit in on her own. It's so strange because this was the exact same age where I flipped from being extroverted and oblivious to being introverted and intensely self conscious.

The past few years, she has often said things like "I'm stupid" and "Nobody likes me". She has a best friend for the first time in years and I'm hearing less of that. There are still issues but she seems happier. On the flip side, she might be on the road to internalizing it and learning it's best to not show it.

If she was on a downward trajectory, getting an assessment for her would be a no brainer. This is such a difficult age, especially for girls. After my assessment is complete, would a good approach be to talk to her about it and ask if she wants to be assessed? My general feeling is that she would say she wouldn't want an assessment, even if I tried to put a positive spin on it.

 

[kriss72]

If she was on a downward trajectory, getting an assessment for her would be a no brainer. This is such a difficult age, especially for girls. After my assessment is complete, would a good approach be to talk to her about it and ask if she wants to be assessed? My general feeling is that she would say she wouldn't want an assessment, even if I tried to put a positive spin on it.

You know your daughter better than any of us, if you think she would benefit from it, then maybe it should not be as much of a question, as a request for her to be assessed, if you are more on the "wouldn't make much of a difference for her" side, then it could be a question to her... she is at a difficult age, like if she was a few years older, then it should be her choice, and if she was a few years younger, then it shouldn't be her choice, but around 12... it is difficult - maybe it is a good idea to wait, as you suggested, and see what you experience after getting your own assessment. Is there another parent in her life that has a qualified opinion?

 

[Neonatal RRT]

Thank you everyone. It was cathartic just to write all that out.

Regarding my daughter, she is almost 13. She has always struggled with both school and with making friends, and with the few she has made, she always say that they treat her unfairly. I have seen positive changes with her this year. Her body language around her peers is so much better, she seems happier around them. I think she is figuring out how to mask and fit in on her own. It's so strange because this was the exact same age where I flipped from being extroverted and oblivious to being introverted and intensely self conscious.

The past few years, she has often said things like "I'm stupid" and "Nobody likes me". She has a best friend for the first time in years and I'm hearing less of that. There are still issues but she seems happier. On the flip side, she might be on the road to internalizing it and learning it's best to not show it.

If she was on a downward trajectory, getting an assessment for her would be a no brainer. This is such a difficult age, especially for girls. After my assessment is complete, would a good approach be to talk to her about it and ask if she wants to be assessed? My general feeling is that she would say she wouldn't want an assessment, even if I tried to put a positive spin on it.

Well, she is 13,...you have a few more years of "drama" ahead of you.

At 13, she might be mortified at the thought of being "different", at 17-18 or older, with some maturity, she might think differently. But having said that, insurance will often cover these things when she is under the age of 18. In the US, many insurances will drop mental health coverage at the age of 18. So, something to consider. It's all in the presentation of the idea. You know your daughter.

 

[Aspychata]

I always felt different as young person. Later as l aged, l wondered why people weren't more logic based. Now l have done a one eighty, and l am working on emotional regulation. I am self dx'd. Now l understand stimming. I understand l come from anxiety, and l work around my issues more. Do you have just angst that you are on the spectrum, or more that you are unsure about? Sorry to hear about your divorce. Sorry your wife hates you. Relationships are complex even without the autusim. My daughter has very intense interests, she is already learning coding, she had some emotional issues, but that changed when she started working.

 

[Atrapa Almas]

Its easier to win any game when you DO know the rules.

Of course you can discover that the game is difficult and surrender before starting. Or you can blame others who play in easy mode.

But if the goal is to win the game, then its easier when you know the rules.

Your negativity towards the diagnose is probably the consecuence of depression. Its dificult to think clearly in a balanced way when your brain block any possitive thought before it happens.

 

[zaphod]

I always felt different as young person. Later as l aged, l wondered why people weren't more logic based. Now l have done a one eighty, and l am working on emotional regulation. I am self dx'd. Now l understand stimming. I understand l come from anxiety, and l work around my issues more. Do you have just angst that you are on the spectrum, or more that you are unsure about? Sorry to hear about your divorce. Sorry your wife hates you. Relationships are complex even without the autusim. My daughter has very intense interests, she is already learning coding, she had some emotional issues, but that changed when she started working.

I went into this journey pretty oblivious. For better or worse, there's a sugar-coated, surface-level mainstream way in which high functioning autism is presented. Just a quirky different way of thinking. Presumably to mitigate unfair stereotypes against a disability, which I suppose is a good thing. I began this as a way to understand myself better and also a way where I might find people I can relate to better.

I wanted to dig deeper. I have always trusted data so I started reading published papers. What I saw was relatable yet disturbing. Everything from suicide rates higher than schizophrenia, low life expectancy, low quality of life index, high associations to things that I don't even want to acknowledge. Even a paper describing how NT people will detect, judge and reject ASD people within seconds of meeting them.

Next, I tried looking for a high functioning autism support group in my community. The only one I found was exclusively for females... so I turned to forum. Found reddit, and the very top thread was someone asking if anyone else had no family or friends. There was page after page of people saying yes.

Then I came here thinking it might be better, but I'm seeing much of the same. I feel like I've been completely sucked in by seeing the data in papers and then seeing that data reflected by the hopelessness and depression of so many people here. I didn't start this to become a self-hating aspie, but I'm finding that very difficult.

There are things I have read here that make me feel better too, and I am thankful for that.

The only thing I know for sure right now is that I didn't realize what I signed up when I started this journey but there's no turning back now for me... but it does leave me wondering if my daughter would be better off not knowing.

 

[Aspychata]

I agree with you. I don't like labeling kids if it can be avoided.

 

[zaphod]

Its easier to win any game when you DO know the rules.

Of course you can discover that the game is difficult and surrender before starting. Or you can blame others who play in easy mode.

But if the goal is to win the game, then its easier when you know the rules.

Your negativity towards the diagnose is probably the consecuence of depression. Its dificult to think clearly in a balanced way when your brain block any possitive thought before it happens.

This is a good point. I was in a horrible depression from my divorce when I started this. I have read many blogs and articles, watched youtube videos from people who were assessed as adults, and they all seemed to put a positive spin on it. They also all seemed to somehow have a fantastic support network and their journeys were triggered by self discovery rather than depression and loss.

Perhaps my problems has nothing to do with the diagnosis itself, but with my lack of support network and state of mind going into it.

 

[ThanosTheDwarf]

Reading your post is eerily familiar. Unfortunately I don't have answers to your questions (yet) and can't be of much help other than by saying that you are not alone with the questions, the journey and discovery. You came to the right place though - I've only been here a very short time myself but do have to say that there is a wealth of experience here and a very warm welcome.

 

[Rodafina]

After my assessment is complete, would a good approach be to talk to her about it and ask if she wants to be assessed?

I think this is a really good approach. Whether you choose to pursue a formal diagnosis or not, I would definitely recommend using your own experience with ASD to talk to her about some of the difficulties that she may be having and help her to understand what may be going on in her brain.

Growing up with no understanding can backfire and cause major co-morbid mental health conditions. Understanding is the key, and as her parent with ASD, you are in a prime position to be a great support and teacher to her.

 

[GrownupGirl]

If I had never been diagnosed with what used to be called Asperger Syndrome in 2001, I really don't like to think how ugly things would have turned out for me. Or uglier than they did turn out, anyway. So no, I don't regret it at all. What I do regret is that it wasn't diagnosed a lot sooner.

 

[Ronald Zeeman]

I'm 46 years old and currently in the process of getting a formal assessment. I believe it's just a formality.

ASD was not on my radar at all until I watched Love on the Spectrum about 18 months ago and thought hmm... I can really relate to some of these people. I put that thought on the backburner until a few months ago and took a bunch of ASD self assessment tests and scored really high on all of them. Started doing more research and found that all my little quirks are quite common with ASD... everything from my large head to my unusual pencil grip.

Everything in my life has felt more difficult than it should have been. So many failures, so much toxic anxiety... but somehow I always persevered. I have an engineering degree from a prestigious university, had a beautiful (now ex) wife, 3 kids who I adore, a 6-figure salary, own a nice house and car with no debt.

My list of failures is equally impressive. I have no friends. I am not close with my family and hold much bitterness towards them. My ex-wife used to be my "safe person" now hates me. My engineering career was a complete disaster. University was a disaster and I just barely got my degree. Relentless criticism from teachers and family about not living up to my potential. A near constant state of toxic stress. I could go on and on.

Looking back on my life, I've had some moments of true happiness. They all seem fleeting in retrospect but nevertheless, I am very grateful for them. I can also see that those moments of happiness would never have happened without relentless perseverance despite failure after failure. If other people can do it, why can't I? I kept trying, I worked through so much pain and accomplished things I thought were impossible.

Now... knowing why everything has been so difficult for me, I feel like that fighting spirit is gone. My depression and anxiety are probably worse than they have ever been before. Maybe it's because I'm going through this with no support system at all... maybe it's because everything that seemed possible before now seems impossible.

If I had a diagnosis at an earlier age, would I have kept trying after so many failures? ASD is a pre-baked excuse for almost every failure - would I have just grabbed ahold of that and ran with it? Would my wife or any previous girlfriend have wanted to pursue a relationship with me if they knew? Would I have been ostracized and bullied (more) at school/university if everyone else knew?

Honestly I hope I'm wrong, but my general feeling is that I would have had a worse life with an earlier diagnosis. I might even be dead.

I have a daughter who is struggling. We have so much in common. Pretty sure ASD. I have serious concerns that she would be better off NOT getting assessed. Going through this is the first time I ever felt completely hopeless. I don't want her to ever feel that way.

In the past I always put it down to bad luck, when I self-diagnosed all the pieces fell into place. retired now life's great. Would not trade gift for anything.

 

[Ronald Zeeman]

This does seem to be a bit of a trend, one I've pointed out before a few times. Those of us who grew up knowing nothing about autism seem to have more successful lives in both employment and social circles than those that were diagnosed as children.


I was an offset printer and I used to get used to train apprentices because I was far more knowledgeable than most and I have a knack for explaining things in simple terms that people can understand easily. So I played a big role in turning 16 to 18 year olds in to adults.

This is not an autism thing, this is a typical teenager thing - the transition in to adulthood isn't easy and the majority of teenagers will look for any excuse they can find to say it's all too hard and we expect too much of them. "It's not my fault, no one gives me a fair go because I'm black/gay/autistic/religious/asian.". Those excuses never went down well with me and were met with scorn and ridicule.

In hindsight for myself, it would have been helpful if I got a diagnosis in my late 20s, it would have explained a lot of things for me and I might have been able to avoid burning out in my late 30s, but I'm so glad I wasn't diagnosed as a child. It's a bit like forced ABA, learning to adapt to society and persevere regardless of issues.

I'm ASD2 by the way, and now on a pension for it, only got my formal diagnosis at age 55.

When what you think is bad luck keeps coming you find ways to compensate.mid-fifties when I figured it out.

 

[Fino]

I don't regret it because otherwise I'd be asking myself every day why am I so different from almost everyone around me.

 

[Misty Avich]

I don't. Even though I have a diagnosis I still ask myself every day if it was the right diagnosis.