Anyone else feel angry for not getting an early diagnosis?

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rache123
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19 Apr 2020, 1:49 pm

I feel like if I was diagnosed before the age of 12 or 13, that I probably would have been able to have had healthier coping mechanisms at a younger age. With all the OCD-like thoughts and anxiety and sensory issues and feeling misunderstood, I always felt like a black sheep. I’m sure many others of you can relate; especially those of us born in the 90’s (where medical health professionals were just beginning to truly understand how autism works) and earlier. With the constant misdiagnoses and lack of communication that seems to play a part with those of us on the spectrum, it makes it even harder.

I always knew there was something wrong with me but I could never figure out what it was, until I was told about the disabilities I had when I became a teenager.

Then there’s the fact that my mother and my father had to make so many sacrifices in order to put me in an overpriced school to help me with my learning issues, which didn’t really do much btw, but that’s another issue I don’t want to talk about.

I was in no way miserable, maybe mildly depressed but not to the extreme until I went to middle school and everything went downhill. It makes me wonder if my life would have changed if I was made aware of my disorder at an earlier stage in my life.



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19 Apr 2020, 2:22 pm

If when I first tried to see a doctor to ask "Could I have aspergers syndrome" I was able to ask without mindblank, I would have been assessed by now, so I was a little frustrated that it took me two years of trying to ask a doctor before I did manage to ask.
Earlier in life I am not sure if it would have been wize because I would have given up too easily. I mean, I would have never ended up doing a few things in life had I been diagnosed earlier BUT, I would have avoided a whole lot of stress.
So today, the need for me to be assessed is almost urgent. If it wasn't for the support and understanding of the benefits system it would be urgent, but in the past when I was coping ok (Which was before I hit my first burnout) it wasn't quite so neccesary. However, it would have explained soo many things and also it would have enabled me to pace myself better so I could avoid the depths and embarissment of having so many full shutdowns. The feeling of panic while in a shutdown is something I do everything to avoid. So if I had known what they were then I would have been able to catch them in time and prevent some of them from slipping from a partial shutdown into a full shutdown, and would have given myself a much better quality of life.

For me though, the greatest stress of my life were school and college where if I could have been home taught I would have not have ended up in a shellshocked situation, one of which effected me for many years after I left education. Also, my mother would have made an excellent teacher as she just is soo tallented and able to put things across into my way of thinking. So if I was home schooled, I would have avoided lots of stress, anxiety and at times, bullying and I would likely have been way ahead of others by the time I reached 16. It was only when I was around 16 to 18 where I had moved into studying things a little out of the reach of my mothers expertize due to the subjects I was in that my Mum would not have been able to teach. Don't get me wrong. If my mother wanted to and had the time she could have easily passed to masters degree standards as with her last education she passed with distinctions and merits and was the colleges star pupil. It was more that the subject matter I was taking was becoming out of her comfort zone.

So yes. I do think to myself "If only" but I am very relieved to be where I am now waiting to be assessed with understanding and support, as if this had not been in place now and I had followed my previous instinct to just quit work and wait without any financial or other support other then my Mum feeding me, then I would be in a serious mess by now and may not have survived, as the last burnout had really hit hard. So it was just in time that I happened to be on the assessment list, and happened to visit the autiam open day to try to find out some answers, and when I realized I was speaking to people who understood what I had been going through... WOW! For the first time ever I had had this and it was like a dam had burst and I opened up! Prior to this I have never opened up to a health professional in that way.
So I do see Gods hand in this. I would have died without these tallented people. God has put them there to be in the right place at the right time and every one is such a blessing.



Last edited by Mountain Goat on 19 Apr 2020, 2:39 pm, edited 1 time in total.

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19 Apr 2020, 2:31 pm

Yes but Im at peace with it now since I got to experience things i might not have and whatnot whuch actually means i know myself better than if i were just told what n who i am from trial n error


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19 Apr 2020, 2:45 pm

I'm not angry about it, but I feel badly that I was practically screaming for help and no one connected the dots. I understand that the word "autism" wasn't really understood when I was a child. I only wish someone at least cared enough to notice all my struggles, take me to a doctor or therapist, and acknowledge that I needed support.



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19 Apr 2020, 2:46 pm

blooiejagwa wrote:
Yes but Im at peace with it now since I got to experience things i might not have and whatnot whuch actually means i know myself better than if i were just told what n who i am from trial n error


It is the understanding what has been going on is the great leap forward for me. The not knowing what the shutdowns were and thinking they were allergies, and hitting burnouts and not knowing why or what they were... Thinking I was to blame for what I was experiencing...

I am soo relieved to now understand what has been going on and I have not even been assessed yet! It is incredible to think that after a lifetime of not knowing, that I joined this site back last may and I knew nothing much, and now I understand. It is amazing.



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19 Apr 2020, 2:50 pm

esp considering level 2 and other diagnoses now.

I mean i actually feel angry to think of your case.

someone with l. 2 autism being left to flounder and figure it out by themselves. Won't go on into it apart from applauding all the work u put in towards gaining understanding from experts and your approach towards life

Edit sorry Mountain goat i thought another user had written that hence the references to their situatuon.. Im very sleepy.. Forgive me


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IsabellaLinton
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19 Apr 2020, 3:06 pm

blooiejagwa wrote:
esp considering level 2 and other diagnoses now.

I mean i actually feel angry to think of your case.

someone with l. 2 autism being left to flounder and figure it out by themselves. Won't go on into it apart from applauding all the work u put in towards gaining understanding from experts and your approach towards life

Edit sorry Mountain goat i thought another user had written that hence the references to their situatuon.. Im very sleepy.. Forgive me


You're too sweet. Thanks blooie! I look at all the work you've done to support your kids and I'm amazed. You have your own challenges with mutism and neurodiversity but you're the most inspirational parent I know.

(( huge hugs ))



Callafiriel
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19 Apr 2020, 3:25 pm

I was diagnosed at age 42 and yes, there are times when I am angry about it.

When I first got my diagnosis and my mom said, she never thought there was anything wrong with me, she thought I was just shy and sensitive. And then she said she's kind of glad that we didn't know because she's afraid I would have to go to a special education school. And I guess she may be right.

However, I can't help thinking how much easier some things would have been if I had known at age 18. I would have made a lot of different choices. I would have gone on to study my special interest and not something with a lot of social contact that now landed me in a massive burnout with a major depression and anxiety disorder that means I'll have to find a new job now at almost 50 and in the middle of this Corona crisis to boot.

I guess I'll have to talk to my therapist about it. I'm just realizing exactly *how* angry I still am about all of that.



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19 Apr 2020, 3:32 pm

Callafiriel wrote:
I was diagnosed at age 42 and yes, there are times when I am angry about it.

When I first got my diagnosis and my mom said, she never thought there was anything wrong with me, she thought I was just shy and sensitive. And then she said she's kind of glad that we didn't know because she's afraid I would have to go to a special education school. And I guess she may be right.

However, I can't help thinking how much easier some things would have been if I had known at age 18. I would have made a lot of different choices. I would have gone on to study my special interest and not something with a lot of social contact that now landed me in a massive burnout with a major depression and anxiety disorder that means I'll have to find a new job now at almost 50 and in the middle of this Corona crisis to boot.

I guess I'll have to talk to my therapist about it. I'm just realizing exactly *how* angry I still am about all of that.


I agree with what you've written. I do feel angry sometimes because I would have made many different choices as well.

My mother used to tell me I looked and acted retarded but she never sought any help. She would just say "don't do that" and get embarrassed by me. That hurt a lot because I didn't understand why I was such a disappointment.

My burnout gave me a stroke, so please be careful with your career plans. My career was way above my social capacity and I didn't know better than to push forward and overachieve.

Be kind to yourself and don't feel pressured to do anything that will exhaust you.

Hugs



Callafiriel
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19 Apr 2020, 4:06 pm

IsabellaLinton wrote:
My mother used to tell me I looked and acted retarded but she never sought any help. She would just say "don't do that" and get embarrassed by me. That hurt a lot because I didn't understand why I was such a disappointment.


I'm sorry you had to go through this. At least my mom only thought I was shy and odd and I suspect she took pride in me being a bit different. It must be horrible to know that your mother feels you are a disappointment. Also, that she obviously noticed that you needed help and didn't provide it. I feel the same about my depression, when co-workers called me after I went on sick-leave and when they learned about my burnout, depression and anxiety they told me that it wasn't surprising to them, that they knew but didn't say anything. I just don't get why they couldn't have said, "Hey, I think you're burnt-out, you should see a doctor about it."

Quote:
My burnout gave me a stroke, so please be careful with your career plans. My career was way above my social capacity and I didn't know better than to push forward and overachieve.

Be kind to yourself and don't feel pressured to do anything that will exhaust you.

Hugs


That doesn't sound good. Are you feeling better now? Did you fully recover from your stroke?

Thank you, that's actually what my psychiatrist keeps telling me, too. I am doing my best to not stress myself out over it.

(( Hugs back ))



IsabellaLinton
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19 Apr 2020, 4:12 pm

Callafiriel wrote:
IsabellaLinton wrote:
My mother used to tell me I looked and acted retarded but she never sought any help. She would just say "don't do that" and get embarrassed by me. That hurt a lot because I didn't understand why I was such a disappointment.


I'm sorry you had to go through this. At least my mom only thought I was shy and odd and I suspect she took pride in me being a bit different. It must be horrible to know that your mother feels you are a disappointment. Also, that she obviously noticed that you needed help and didn't provide it. I feel the same about my depression, when co-workers called me after I went on sick-leave and when they learned about my burnout, depression and anxiety they told me that it wasn't surprising to them, that they knew but didn't say anything. I just don't get why they couldn't have said, "Hey, I think you're burnt-out, you should see a doctor about it."

Quote:
My burnout gave me a stroke, so please be careful with your career plans. My career was way above my social capacity and I didn't know better than to push forward and overachieve.

Be kind to yourself and don't feel pressured to do anything that will exhaust you.

Hugs


That doesn't sound good. Are you feeling better now? Did you fully recover from your stroke?

Thank you, that's actually what my psychiatrist keeps telling me, too. I am doing my best to not stress myself out over it.

(( Hugs back ))


My stroke was five years ago. I needed a year of PT / OT / Vestibular Rehab and Speech Therapy. I had to walk with a walker and I used to fall down a lot from double vision. It wasn't fun but I can't complain because I'm lucky to be alive. I'm doing quite well now. I still have double vision and I use a cane sometimes if I'm in open spaces (otherwise I just grab the wall a lot lol). Anyway, thanks for your kind message. I wish you all the best in your job search. I worked with my special interest as well, but I was undiagnosed (until 2018 -- and older than you! :wink: ) and I still overdid it. I wish I had known about my autism so I could have asked for reasonable accommodations!



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19 Apr 2020, 5:48 pm

I believe not knowing until middle age adulthood was the lesser of two evils for me.

Not knowing who I was meant that I made naive ignorant mistakes. It meant I thought my mistakes were because I was a weak person. It meant that sometimes I was so ignorant about who I am did not know my mistakes were mistakes.

If I was diagnosed with autism back when I was a child in the 60s I would have been labeled a "mental cripple", thrown in an institution for life and rotted away.

If they had today's knowledge and treatments back then I would have given a label telling me what I can't do something I was not mature enough to handle. 25 to 40 hours of Applied Behavioral Analysis therapies plus helicopter parenting would have driven me literally crazy.

Besides, there is nobody to get angry at, with the lack of knowledge at that time there was no way me or anybody could have known what the issue was and how to deal with it.


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19 Apr 2020, 6:23 pm

IsabellaLinton wrote:
Callafiriel wrote:
IsabellaLinton wrote:
My mother used to tell me I looked and acted retarded but she never sought any help. She would just say "don't do that" and get embarrassed by me. That hurt a lot because I didn't understand why I was such a disappointment.


I'm sorry you had to go through this. At least my mom only thought I was shy and odd and I suspect she took pride in me being a bit different. It must be horrible to know that your mother feels you are a disappointment. Also, that she obviously noticed that you needed help and didn't provide it. I feel the same about my depression, when co-workers called me after I went on sick-leave and when they learned about my burnout, depression and anxiety they told me that it wasn't surprising to them, that they knew but didn't say anything. I just don't get why they couldn't have said, "Hey, I think you're burnt-out, you should see a doctor about it."

Quote:
My burnout gave me a stroke, so please be careful with your career plans. My career was way above my social capacity and I didn't know better than to push forward and overachieve.

Be kind to yourself and don't feel pressured to do anything that will exhaust you.

Hugs


That doesn't sound good. Are you feeling better now? Did you fully recover from your stroke?

Thank you, that's actually what my psychiatrist keeps telling me, too. I am doing my best to not stress myself out over it.

(( Hugs back ))


My stroke was five years ago. I needed a year of PT / OT / Vestibular Rehab and Speech Therapy. I had to walk with a walker and I used to fall down a lot from double vision. It wasn't fun but I can't complain because I'm lucky to be alive. I'm doing quite well now. I still have double vision and I use a cane sometimes if I'm in open spaces (otherwise I just grab the wall a lot lol). Anyway, thanks for your kind message. I wish you all the best in your job search. I worked with my special interest as well, but I was undiagnosed (until 2018 -- and older than you! :wink: ) and I still overdid it. I wish I had known about my autism so I could have asked for reasonable accommodations!


This is a thread I so identify with and these stories of your lives touched me deeply. In my case, it was a severe head injury from a car accident, but with the same kind of outcomes as the stroke described above. It derailed my life and my dreams and goals. I wasn’t diagnosed till I was much older as well - anger has given way to acceptance over time, but I suffered from drastic and dramatic burnout in recent years from a career choice which was way below my intellectual capacity so I was the guru, but way above my social capacity too. After some spectacular health issues including a minor stroke, I was pushed out of my fear of change into HAVING to make the obvious choices. Fortunately I have been lucky. Wishing you both all health and happiness, and thank you for sharing.

My parents were lost in knowing what to do - and in those days Aspieness wasn’t remotely known about or understood. I still bear the emotional scars of childhood and the effects of my parents best efforts - separating me from my home land and language to English preparatory and public schools since I had been assessed as highly gifted like so many of us. And yes it took a few years for the anger to subside .... life is better now ....


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19 Apr 2020, 6:40 pm

rache123 wrote:
Anyone else feel angry for not getting an early diagnosis?
Not at all!

Had I been diagnosed as a child, I might have been drugged, institutionalized, and taught that I would be a helpless, hopeless, worthless "retard" (their word, not mine) for the rest of my life.

As it is, I was in my mid-50s before I found out what was "wrong" with me, and by that time I had developed coping mechanisms that allowed me to stay in mainstream classes, graduate, attend college, earn a degree, start a career, get married, and raise a family.

In my case (and others' cases may differ), not getting an early diagnosis may have actually helped!



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19 Apr 2020, 6:44 pm

Fnord wrote:
rache123 wrote:
Anyone else feel angry for not getting an early diagnosis?
Not at all!

Had I been diagnosed as a child, I might have been drugged, institutionalized, and taught that I would be a helpless, hopeless, worthless "retard" (their word, not mine) for the rest of my life.

As it is, I was in my mid-50s before I found out what was "wrong" with me, and by that time I had developed coping mechanisms that allowed me to stay in mainstream classes, graduate, attend college, earn a degree, start a career, get married, and raise a family.

In my case (and others' cases may differ), not getting an early diagnosis may have actually helped!


I agree Fnord, based on the timeframe when we were raised.

My only wish is that my parents at least acknowledged I was struggling, or commented, or noticed, or tried to accommodate my issues in whatever way they could. I think you and I were raised with the same type of intolerant parents though, and that would require more than wishing on a star.

To ASPartOfMe and Ulf, ((( HUGS )))



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19 Apr 2020, 6:54 pm

IsabellaLinton wrote:
... My only wish is that my parents at least acknowledged I was struggling, or commented, or noticed, or tried to accommodate my issues in whatever way they could.  I think you and I were raised with the same type of intolerant parents though...
According to my dad, there was nothing wrong with me that "The Belt" couldn't cure.

After he died, I inherited the infamous belt.  I burned it on a bonfire in his backyard before we sold the property.