experience of grieving around diagnosis

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Have you experienced any kind of grieving process during the diagnosis? Does it change with age? Milestones?

Not me. I knew I had problems--I was just so relieved to know that it had a name and other people had experienced it, and so there was precedent, knowledge, solutions to the many little annoyances of life with autism.

I did have to do some readjustment, but it was more along the lines of learning not to beat myself up for what I now knew was a disability, rather than laziness or rudeness.

But I had had the benefit of having several disabled friends in the past, and disability in general was not a particularly scary thing to me. The idea that I had a disability myself was something I initially rejected because I had made excuses that explained away my autism as not trying hard enough, when in reality I was probably trying harder than most people ever have (I think this because in the end I tried so hard that I had a mental breakdown and landed in the hospital from sheer exhaustion).... In any event, I don't think I did much mourning when I accepted the fact that I had a disability. It was more of a matter of understanding that having a disability is actually okay--not the tragedy most of the world thinks it is.

For me it was terrible to be diagnosed with autism, at 13, almost 14. In my messed up perspective at the time, it confirmed all the worst things that I thought about myself. I'd look up little snippets about autism, get freaked out and then avoid looking at anything about it for a long time. I remember reading that" 70% of people with autism had mental retardation" (now called intellectual disability) and that it was associated with "deficits in some of the very qualities that make us most human, language and empathy". This freaked me out. Basically I wanted to believe I was misdiagnosed and avoided reading or talking about it until I was about 24 when I went back to university and studied Psychology where I learned more about autism. Then I read 25 books on autism that my mum had bought a long time ago and had tried to get me interested in earlier. Then I found this site and became obsessed with researching it. Learning more about the disorder made it seem less scary and I was able to accept it.

I wanted a diagnosis because it explained so many things about my life.

But when I got it, I began to feel that I was now officially "different" in a way that most people think is a bad thing. I had internalised the general prejudice, the stigma, against the spectrum - was I a lesser person?

Recently I have been tutoring an Aspie school student on a regular basis - at the student's school. My diagnosis is actually part of my qualification for this job - it puts me in the special position of being an older Aspie who is able to communicate with the Aspie student in a way that he (and I) feel comfortable with.

So now I feel positive: being an Aspie has given me - finally - an opportunity. I couldn't really do anything much in the NT world, but I can use my special interests and my Aspie diagnosis for good in the Aspie world.

Tutoring a student has turned out (unexpectedly) to be great therapy for me, as well as good for the student.

Not exactly grieving but a sadness around the sense that the gulf between me and other people really is more that I am not one of them in a very profound way.

Also some anger and sadness around all the years of misunderstandings, abuse and self recrimination. What a colossal waste all that drama was.

On the first time they told me I might have Asperger Syndrome at age 17 I rejected it and put on my "I am normal teenage girl, just focused on study, not boyfriends" mask. I was a good actress and I was quite happy with my high school life (I was attending a private small school with polite children from good houses) so I was able to fool the psychiatrist. Well, I am not that sure he believed I am 100% normal but he couldn't do anything once I told my parents I don't ever want to meet him again since he is conman (he wanted 100PLN per hour so the whole diagnosis could take half of my parents monthly wage), the place is too far away from home (1,5h by train + 20mins by tram, both crowded and I hate crowds, and I am not good using public transport) and the office sucks since it is near a highway and I can't focus because the sounds of cars disturb me.

The money and the spot were the main problems at that time but I also didn't want to be diagnosed. All I have known about AS was that "it is a kind of autism" and all I have known about autism was that "they are children that can't speak and can watch a moving item for days". I could speak very well and my fascinations on objects didn't last that long so I come to conclusion "I don't have autism. I am not ret*d. They know nothing about me". Then I forgot all about that.

After the start of my adult life I met a few psychologists (at least they didn't take money for the meetings). None of them was able to tell me whats wrong with me and why I can't find my spot in this world. The only "supposed diagnosis" I got was depression but I rejected it too. I was not depressed. I was depressed at age 13 and I know what depression is, it takes away your will of life and makes you want to kill yourself. I didn't want to kill myself when they told me the "depression" lie. I just wanted to know whats wrong with me and what I can do to fit into this world because I couldn't find a way myself. I wanted advice, not pity.

Then, one day, about a year ago I saw an article on the net about AS. My mind went like "Wait... Asperger Syndrome... it sounds familiar. Didn't they suppose I have one when I was 17?" and I started to read. Then I realized it is all about me and explains almost everything I was so worried about my whole life. And since then the more I read the more I am sure with my self-diagnosis. It is a relief. I finally know what is wrong with me and what I can do to be successful. In fact, I don't know what would I do if a psychiatrist told me I am not an aspie now. The "return to normal" would make me grieve, not the AS diagnosis. But if they were able to diagnose me when I was 17 I guess I wouldn't be so happy. My high-school life was easy - school routine and good grades mixed with friends sharing interests with me and accepting me for who I am. Diagnosis would destroy my self confidence at that time because I was thinking I finally fit into the society. I didn't know it was mostly because I got into small, tolerant, polite community and the real world isn't like that.

The dx was for me, a mixed blessing. On the one hand, I was relieved to finally have a workable framework of self-understanding. The downside was that I only found out last year, at age 41. If I had discovered my condition at say, 31, I could have used the last ten years more productively. Oh well, here's to the next 10 years...

You can grieve for any reason.

I'm not formally diagnosed, but learning about AS made me feel elated at first, and then I had issues over realizing that there was something "wrong" (sic) with me. I suppose I was happy to finally understand what was likely going on, but not happy about knowing it was something I couldn't change.

I had wondered about Asperger's for several years and I used to wish I had that diagnosis because it would explain a lot and I would feel like I officially had my "alien" license. Otherwise I was just an introvert with problems and I'd tried very hard to change who I was but couldn't. When I initially received a diagnosis, I was partly shocked (because I was still sort of thinking I was just an awkward, anxious introvert), but I was elated too. I'm still kind of happy, but I realize now that I'm NEVER going to be like what I thought I might be someday.

In Phantastes, Anodos is trapped by his own evil shadow in a tower. He paces around for ages but can't get out; even when he remembers friends and loved ones, this isn't enough to free him from his internal prison. Then a forest child sings somewhere outside; Anodos, responding to the sound, automatically puts his hand to the doorknob and walks out, and only then does he realize that the door wasn't even locked. He had never thought to try the door until someone sang for him and helped him set himself free. I've thought for years that maybe someday, someone was going to sing for me, too, and I could find the door out of myself; but if it's autism, maybe the door actually is locked.

There are numerous posts about the "stages" of Aspergers. The one I began was: http://www.wrongplanet.net/postt229762.html <click>

Why would anyone grieve after being diagnosed with Asperger's? Being diagnosed isn't the same as getting Asperger's; we've always had it. So it's not like a diagnosis changes us into radically different people. We just become more aware of ourselves. If anything, I think that's something that should be celebrated. It can only help you live an easier life in the end.

The only 'grief' from getting diagnosed was the grief that no one had told me decades earlier.

Well finding out I had AS and accepting it came at a time when because of a brain glitch associated with AS I had the worst day of my life. Finding out that you are not like all the other people and that you have a deep difference is a very disturbing event, now I have a name for what I have and more of an understanding it is much less troubling for me.

Since finding out that I have AS I am more at peace with myself, I also have a greater insight into myself now.

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Health is a state of physical, mental and social wellbeing and not merely the absence of disease or infirmity I am not a jigsaw, I am a free man !

Diagnosed under the DSM5 rules with autism spectrum disorder, under DSM4 psychologist said would have been AS (299.80) but I suspect that I am somewhere between 299.80 and 299.00 (Autism) under DSM4.

Maybe it would have been better to have known about a dx earlier in life, maybe not, I don't know. Some grieving is inevitable I guess, especially when you are a pessimistic person like me. I see my life a bit derailed but truth is that it never was like what I imagined of it before. Maybe with better understanding of ourselves we can live a more realistic and fulfilling life, it only takes some time and effort to get there.