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How Did You React To Being Diagnosed?

Wow Kelly. I feel as though I just tried to read an algebra problem, LOL. I was worried that mine would come back as negative too. That would mean that it was all in my head. But as I said somewhere else (can't remember where), I'm not crazy after all, I'm autistic!

The psychiatrist explained to me that the test's threshold for determining whether a person has AS is 65, and I scored 165 which floored me. Unfortunately I also tested extremely high for ADHD, in the 97th percentile. Now I wonder how I made it to the age of 54.
 
Bay said:
Wow Kelly. I feel as though I just tried to read an algebra problem, LOL.
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:lol: reading it back yeah it does seem complicated, basically the DSM-IV require you to have less symptoms to get a diagnosis then the clinic I went to. I'm surprised by my results really on the Autism Quotient test the maximum is 50, 80% of AS patients score 32 or more I got 41. The Empathy Quotient test maximum is 80, 80% of AS patients score 30 or less I got 11, relatives questionnaire (formerly known as childhood asperger syndrome test) maximum score is 31, 87.5% of children with AS score 15 or more, my score was 26.

The Dr who did the assesment wrote things down incorrectly though, just little things that don't really matter but...well they annoyed me :lol: like when I said my latest obsession was baking cookies and cakes and she asked how long that had been going on for I said about a month...in the report it says I spent a month baking cookies and cakes...:lol: no sleep for me :lol:
 
Never been diagnosed. The odds are against their getting it right. I am mature, and female. Post-parenting. Well-camouflaged. And now I never will, because it would hurt worse now being told I wasn't AS when at last I have a way of loving myself, because I understand and therefore can forgive, instead of living a life of remorseless self-recrimination.

I didn't go out looking for this; I stumbled upon it. Had to look up the spelling at work ("Is it a U or an E?") and the reference I found listed a simple dozen or so characteristics. My stomach did that instant-bruise/suckerpunch/gasp thing, when your gut knows something before your brain does. I marked it as something I HAD to go back and read. It was like breathing after holding your breath. Everything I have come across since then, except the DSM-IV, puts me strongly on the AS. My life replayed itself, every awful moment and unfathomable mystery that was ever stored away in memory, right back to childhood, and EVERYTHING fell into place through the AS prism.

It was such a relief! Did this mean I was not the waster, lazy, loser, unlikeable, unlovable - did I say waster? - depressive, ungrateful, angry, awful wastrel who had had so many advantages and talents she should really have made something of herself and held down that job, or lover, or university course, or gig, instead of frittering or drinking away all that glittering promise? Probably not. You can't live that life for decades without in part becoming that person. :-/ While floundering around I had one massive piece of luck, and that was to find a music community of which I became a respected member, and that is where I have found lifelong friends.

Now my SDX means I can live with myself - that maybe some of what went wrong was not mine to wear - that just because someone says something to you about you doesn't mean they are right. (I don't really think I'm an awful person. But I do feel so much time has been wasted. If only I had understood sooner, I would have started growing my strategies sooner. Maybe I wouldn't have pushed people away so much, and would maybe have had "more to show for it", as they say. Maybe I would have lived the artist's life I had been destined for, instead of flogging myself contrarily to become a lawyer in satisfaction of my parents' ambition ... which I only lasted five minutes at after 15 years of on-again, off-again study ... see? I can stick with something after all!) Maybe, maybe, maybe.

Doesn't matter. Now, thanks to my nondiagnosis that nonetheless has the ring of certainty, I feel I have it within me to be happy. I have rediscovered the two-year-old who was sunny all the time, who was lost and who I could never reconcile with my inner landscape ... but can now. She bobs in from time to time and that has been so worth waiting for! I love being that person. Now want her to become the leader. Wish me luck.

I would be very interested to meet other self-identified AS aged post-45. We, the identified, are quite a rare breed (although there are many unidentified survivors out there). Care to introduce yourself?
 
Never been diagnosed. The odds are against their getting it right. I am mature, and female. Post-parenting. Well-camouflaged. And now I never will, because it would hurt worse now being told I wasn't AS when at last I have a way of loving myself, because I understand and therefore can forgive, instead of living a life of remorseless self-recrimination.

I didn't go out looking for this; I stumbled upon it. Had to look up the spelling at work ("Is it a U or an E?") and the reference I found listed a simple dozen or so characteristics. My stomach did that instant-bruise/suckerpunch/gasp thing, when your gut knows something before your brain does. I marked it as something I HAD to go back and read. It was like breathing after holding your breath. Everything I have come across since then, except the DSM-IV, puts me strongly on the AS. My life replayed itself, every awful moment and unfathomable mystery that was ever stored away in memory, right back to childhood, and EVERYTHING fell into place through the AS prism.

It was such a relief! Did this mean I was not the waster, lazy, loser, unlikeable, unlovable - did I say waster? - depressive, ungrateful, angry, awful wastrel who had had so many advantages and talents she should really have made something of herself and held down that job, or lover, or university course, or gig, instead of frittering or drinking away all that glittering promise? Probably not. You can't live that life for decades without in part becoming that person. :-/ While floundering around I had one massive piece of luck, and that was to find a music community of which I became a respected member, and that is where I have found lifelong friends.

Now my SDX means I can live with myself - that maybe some of what went wrong was not mine to wear - that just because someone says something to you about you doesn't mean they are right. (I don't really think I'm an awful person. But I do feel so much time has been wasted. If only I had understood sooner, I would have started growing my strategies sooner. Maybe I wouldn't have pushed people away so much, and would maybe have had "more to show for it", as they say. Maybe I would have lived the artist's life I had been destined for, instead of flogging myself contrarily to become a lawyer in satisfaction of my parents' ambition ... which I only lasted five minutes at after 15 years of on-again, off-again study ... see? I can stick with something after all!) Maybe, maybe, maybe.

Doesn't matter. Now, thanks to my nondiagnosis that nonetheless has the ring of certainty, I feel I have it within me to be happy. I have rediscovered the two-year-old who was sunny all the time, who was lost and who I could never reconcile with my inner landscape ... but can now. She bobs in from time to time and that has been so worth waiting for! I love being that person. Now want her to become the leader. Wish me luck.

I would be very interested to meet other self-identified AS aged post-45. In that demographic we, the identified, are quite a rare breed (although there are many unidentified survivors out there, says my A-dar). Care to introduce yourself?
 
Gomendosi said:
That's the first thing I read when I saw that post! :oops:
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:lol:
whoasp.jpg
:lol:

HighPlateau - If you're happy being self-diagnosed that's all that matters, I read in an asperger's book once that 99% of people who self diagnose are right. I'm not sure if I'd have gone for a diagnosis if it hadn't been for my little girl as I believe she is on the spectrum too and I thought if I had a diagnosis it should help get her one as it's known to be hereditary. If I remember rightly Bay is a more mature member here and alot of us are in our mid/late 20's early 30's, I know that's not 45+ but just incase you thought we were all quite young.
 
HighPlateau, I was self identified until very recently and am 54 years old. I understand what you mean about the punched in the stomach feeling when I first realized that I finally had an explanation for my life. In fact it is only the last six months that I even self identified.
 
I thought I would cry, either from relief or depression, but I didn't. It's been a month now and to be honest I haven't really had any feelings about my diagnosis. It's been very anticlimactic.
 
At the time, I didn't have much of a reaction. Even the doc said, "I can't tell what you're feeling." It has been almost a year, and all in all I have found it somewhat liberating. I may be going too far in the "wrong" direction, but I wear my shades as much as I want, stim in public, wear my Halloween socks and bracelets when I feel like it. I have been angry, not about the diagnosis, but about all the BS I have been needlessly put through in my whole previous life. I am allowing myself this reaction time as none of the above harms anyone, and I feel, at last, as if I can breathe.
 
intense relief. I used to think the world was populated by terrible people. Now I know, they are just different than me and don't understand me.
 
HighPlateau said:
I would be very interested to meet other self-identified AS aged post-45. We, the identified, are quite a rare breed (although there are many unidentified survivors out there). Care to introduce yourself?
Click to expand...

I'm 46 and officially diagnosed. But I told them what to look for.
 
My first reaction was Dr -why?- Actually when diagnosed i spent months trying to get out of it! I new so little about ASD and I felt unnerved by the whole process-once i had gotten my head round it-which took many more months I slowly came round to agreeing with the specialist-I think the problem is that if one has been given dual diagnosis it is rather like being put in the washing machine set on fast spin whilst going both backwards and forwards at the same time-it was utter confusion and turmoil for me as nobody was there to explain what was actually happening- It took 30 years of questioning and asking for help and then once diagnosed I was left to get on with it. Only last month was my diagnosis finalized and my predominant diagnosis is Aspergers syndrome. I am now at the acceptance stage-this is where the learning begins and the coping strategies can be formulated-It's my way of getting the necessary tools in place to cope with my various deficits with more confidence and conviction-I believe acceptance is the Key. I am 47 years old now and just starting afresh-it's super scary but also hugely emancipating.
 
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EMANCIPATING: What a wonderful word choice, Rolo! Your reaction & your subsequent description reveals that you have a much richer & deeper emotional life than I ever will. Being the same age as yourself, I can relate to that sensation of spending long years trying to figure out what the heck was wrong with myself (later turned to what the heck was wrong with everybody else!).

Now that you have a diagnosis, the endless questioning & wondering is over. You now know why you are so different to others around you. You mention acceptance as gaining the necessary tools to 'cope with my various deficits'. While some aspects of Asperger's can become deficits in certain contexts, many of the traits the NT world considers to be deficits are, to me, advantages! I would never even consider a 'cure' for my 'condition'. Many traits common to NTs are also deficits in certain contexts but nobody would even suggest attempting to 'cure' them.

What we CAN do, is to change some of the contexts in which we function to suit our temperament & needs. If going to the pharmacy leaves you feeling fit to be tied, find one that delivers! These types of strategies have been life altering for me. If you live in a noisy urban area & have to venture out frequently, get a set of those noise-cancelling headphones. You'll look like just another person listening to music but you'll be a lot less aggravated. An added bonus: chatty people will spot the headphones & leave you alone :-) Avoiding the cultivation of addictions is critical for Aspies just as it is for NTs. The difference is that society has many rehab facilities & support systems available to NT addicts that are geared to their needs & even still, many of them take several goes at rehab before they manage to kick a habit. For us, there are no real resources out there targeting our needs. Alcoholic/drug addicted Aspies are in deep doo-doo in that regard. The tendency many of us share to not like change & to develop habits readily can exacerbate the problem of addiction. Better to choose not to go there in the first place.

I hope the emancipation you feel makes you feel connected to the international multicultural truly diverse culture of which you are a valued member.
 
Soup -I probably did not word this correctly for some of the more discerning academics-I am aware of the varying opinions on this forum and the need of many to look at the detail and find holes in opinions and arguments- I write in one fluid motion and then look at what it is I have written-I do not then like to change much as I then lose the thread. I chose the word emancipation because I felt set free-whereas before I had been bound to the social norms- I used deficit because ,for me, certain aspects of my character and my need to be heard and my consequent frustration at being unable to get my point across-my 'social blindness', so to speak were and still are, what I deem to term deficits-I am not going to get into semantics with any on this site-I will leave that to those who use this forum in a more academic sphere.I have no idea of your level of emotional ability-we are all different some more emotional and able to express that poetically perhaps and others who are less inclined to present themselves in that manner-it's all down to writing style i suppose-there are some, myself included, who are new to forums and find this alien.I have never debated in this arena before consequently I have launched in but i will now take a step back-
you mentioned addictions and rehab- I myself am well aquainted with the horrors of addiction having been a guest at several rehabs both in Holland and here in the UK-there were and still are no rehabs for those on the spectrum-however without their help and services i would be dead-"better to choose not to go there" as you put it, is a little late for me-I was an alcoholic by the time I was sixteen-I have been clean for five years and am proud of that-there are many who are addicted to sex, gambling, shopping, drugs, prescription medication, computer games, ipads, iphones the list could go on-education support and stability may go far in helping those perhaps less fortunate than myself but in times of austerity there just aint the cash to spare.For many on the spectrum not only do the addictions wreck lives but the obsessions play there part as well-it is far more complicated than I ever thought-your point about neurotypical rehabs is very interesting and I should like to look into that further-It is such an obvious link and although I identified the fact that I had to go through this detox and subsequent five years completely alone in order to succeed, I did not put two and two together.
In reply to your last comment- I do not nor have I ever felt connected to anyone but by trying to find strategies to better understand how to successfully communicate I may find a reason to continue fighting to exist on this god forsaken planet-For some here who have children and partners/ spouses and still struggle to get through your day think of those who feel exactly the same but have been totally forgotten and isolated and have no-one-Sometimes there seems no point at all. I write positive statements sometimes to give others some hope-there are many on this forum on different journeys and at different stages-some questioning and desperately trying to make sense of it all-others who like yourself have said you don't like people and do not wish for friends but may find the virtual camaraderie support and mental stimulus pleasing.We are all searchers.
 
I was angry. My mom is, well, I don't know how to describe it, but over the years she has tried to diagnose me as: ADD, Dyslexic, schizophrenic, bi-polar, OCD and a few others. Non of these turned out to be true. And when she forced me to go and get aspergers treated, I merely thought it was another annoying inconvenience. After I was officially diagnosed, well, I don't know what I thought, as I had much much more pressing issues on my mind at the time. By the time that whole thing was done with, the shock value of being treated with the condition sorta wore off.
 
Tbh, although I was expecting the Aspergers diagnosis, I was still shocked and upset about receiving it. It's been 2 months since I received the diagnosis and I'm still coming to terms with it and trying not to see myself as less than NT people. My last remark needs explaining: I have suffered from social anxiety since the age of 11 yrs old (now 43 yrs old) and have always felt inferior to everyone because of my difficulties, even though I know it's NOT the case, but getting the diagnosis which has clarified a few things, still makes me feel even less "normal" (whatever normal is). I believe my greatest hurdle has always been that I dislike myself for not being like others and now I know I'm not like the general populous, but I guess that now I know there is a reason I'm different, it is allowing me to accept myself for who I am, little by little which I know will take a long time to complete.

Paul
 
I wasn't able to accept it at first because I thought I was the last person who would have any form of autism, but now I'm starting to accept it. It's not a big thing, really.
 
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