Anyone felt grief on DX?

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Hi.

I was diagnosed with ASD recently after suspecting it for a long time.

I have always been anxious and have always self-medicated with alcohol but I have always hoped it would some day be cured. Now I am starting to think that the anxiety is here to stay. Learning about AS and anxiety, well, it just makes sense.

I live a relatively "normal" life punctuated by the occasional emotional outburst, and characterised by constant dragging feelings of fatigue and the ever-present anxiety along with a brain that I am constantly trying to kick into shape making it do what I want (switch tasks when required, motivate myself etc) which I usually fail at.

I always believed this would somehow go away one day but if this is ASD then I have to give up on any fundamental change. I understand that things can get better if I learn to live with it and work around it - I do realise that - but I am feeling something like grief. I feel the same as when someone dies or something terrible happens - drink a lot, lie in bed, hide, feel exhausted, stomach in knots etc.

I think this is caused by the realisation that I have a chronic lifelong problem that is not going to go away.

Also I am afraid that the diagnosis might be wrong and I might "give up" when really there was something I could do to fix it.

I'm confused because on the one hand I want to believe it - it's a great relief knowing that I really am different and not crazy, lazy or nasty - but on the other hand I don't want to let go of the hope that I can some day "sort it out" and just be normal.

I just thought I would write this because I am interested to know if anyone else had similar feelings on DX...

I was diagnosed when I was a late-toddler/early child. I was diagnosed with autism and with "brain-damage/injury."

When I got older, I "kind of" accepted the diagnosis. This interfered with my progress at times.

This is why I advocate "evolving from the diagnosis" so to speak. Without, of course, diminishing the essence of a person on the Spectrum.

"Evolving from diagnosis"? Do you mean "growing" with AS as a natural ingredient?

Thank you for your replies. I guess I need to take care of myself for the next few weeks/months and let my mind sort itself out. It is quite a weird thing, being diagnosed. Even though I was expecting it, I hadn't really imagined how it would affect me. No surprise there, lol!

Indeed I do, Ms. Jensen!

I do not have an official diagnosis, but yes, after reading this stuff and identifying myself in it, though I don't have all of it really, it was grief. I've always grieved the loss of normal social interactions and mistakes with people and depression and anxiety and mutism but having an explanation helped me actually finish or nearly finish the grieving process. It was also grieving for the knowledge that there are some things I can't do and likely won't ever be able to do, but that is okay. Journaling about it helped me, but I have almost always kept a journal around since childhood. It was almost a compulsion for several years and I find I still crave it. Mind gets backlogged and I just have to write. Writing gets more out than speaking and offers opportunity to review what you've thought and see where you once were in a thought or grieving process. Sometimes it might be depressing though as you can get into a perseveratory thing, ruminating over some stuff too long. It took a little over a year to grieve it and work things through. It still grieves me sometimes, but I am in a much better place now than I was a year ago. I can't imagine still being in that place where I was just spinning my wheels getting nowhere but deeper in the mud. I can't imagine the horror it must be for people who find out about this later in life. I am 30 now. But I can't really fathom the grief this must entail for someone finding out later in their lives and am so thankful for what is known now. I wish that others could have found out sooner.

Quite the opposite for me in fact, my DX came late into adulthood and to be perfectly honest it was a relief to know what was finally "wrong" with me after so long.

All the why's were finally answered and there were many of them like why I couldn't function socially or why I always said the wrong thing or why I never in my entire life talked to my sibling.

The list goes on and on but the knowledge that I'm not "wrong" but different is good and I am happy now I know the reason for it.


And this should be in a thread marked "who is happy with their dx?"

I was mostly relieved to find out after 35 years that what has been "wrong" with me has a name, (Asperger's and/or HFA) and that it has advantages and disadvantages. After growing up in a loud NT family where I was painfully aware of being out of place, after being the most awkward (and probably most beat up) kid in school, and just plain not being comfortable in my own skin, my diagnosis was a relief and a starting point to better understand and navigate my own wiring. After 10 years of being aware of Asperger's/ HFA I have gained much understanding and pretty much accept the way I am.

I understand that parts of me are missing, or probably better stated, not connected very well. I have a very different roadmap than most people. Generally I can get to the same places, but I have to take different routes. I get to take the freeway to many places that most people have to use the backroads- but there are a lot of places where I have to take the backroads where other people get to take the freeway.

In some ways I am glad I wasn't diagnosed until I was an adult. I don't think I would have done so many things or explored as many educational and professional opportunities. But the sort of pressure to achieve that I lived under for at least the first 30 years of my life wasn't healthy, and in a lot of ways it was dishonest and unfair. I have a laundry list of health issues, most of which are aggravated by stress. Who is to say that had I known more about being HFA earlier in life that my physical, mental, emotional and spiritual health would not have suffered as much? But speculation is exactly that. I can't change the past, only learn from it.

I forced myself to be in social and professional situations that are trying for people on the spectrum, because I thought that everyone was as terrified and awkward as I was and that I just had to soldier on. My parents also decided that because I had an above average IQ and could achieve academically that the standard was to be much higher for me than for my NT sisters. I had to do more, be more, achieve more- and that just might validate my existence.

I think there's a fine line between using an ASD diagnosis for better understanding, for more effective education, and for developing navigational skills, and hiding behind it to keep from doing those things we might find uncomfortable or distasteful. I see parents today whose kids are diagnosed at young ages and the parents have no expectations for those kids other than for them to suck up valuable oxygen. That too is dishonest and unfair. My husband's half brother's daughter is HFA, and her mother would not correct her (when the child was 6 years old, and verbal) for rooting about my house and rifling through my things. When I calmly explained to the child that snooping in other people's stuff is rude, her mother (who doesn't know I'm HFA) got all nasty with me, saying, "Don't you know she's autistic? She doesn't understand 'rude.'" It was all I could to do not to tell this misguided mother that if her daughter doesn't understand "rude" it has nothing to do with her ASD, but everything to do with her mother's failure to teach her proper etiquette. That child is going to have a long, long road. Had I been that child, my mother would have beat me into next week, autism or not. I understood "rude' LONG before I was six.

I can't change my wiring because it's part of who I am- so I have to embrace it and make it work the best way I can figure out. I don't know what "normal" is- and that's OK. I'm a lot more comfortable in my own skin than I've been at any other time in my life, and for the most part that feels pretty good.

When my husband got diagnosed, it plunged him into a major, suicidal depression

He had just lost his job.

Found out his IQ wasn't as high as he thought. (HUGE deal for him)

His issues weren't just a quirky personality, or some form of mental illness that could possibly go away.

That all the grief from 0-50 years was because of a developmental disorder he had no clue about.

His diagnosis put me into a depression too. Mostly that his meltdowns would probably not go away. The major sticking points in our relationship were related to Autism, and those weren't going away either.

I was in a funk for 6 months, and it took Jay two years to slowly come around. He's still depressed, but it's chronic, low grade.

Jay wishes he would have gotten diagnosed as a child, as most of his issues are social skill related. Those are easier address as a youngster. There is no help for adults in our area.

Little bit.

Although -- and this is going to sound like jumping the gun to some people -- I think I did my worst grieving in the time following my first "Aha!" moment.

I was one of those who had already been an adult who had never heard about the traits and symptoms until I came across them online, and recognized every struggle I'd ever had in my life. Note: I wasn't looking them up for myself, I was looking it up because I heard about someone being diagnosed, thought "Poor them!" and just wanted to find out what they were dealing with. Then I found myself reading about "myself."

This was almost eight years ago now. At that time, I was completely shocked -- and deeply horrified. Just to even think "s**t, this sounds like me...and I don't want it to be." I'm not NOW, this was just then I'm talking about. The recognition was profound and shocked me because it was the first time I realized there's no "fix" for all the things I had been trying to fix in myself. I know I was jumping the gun a bit because this wasn't a diagnosis, but what I mean is, even the first suspicion that this is what was really wrong with me shocked me, as I'd just always thought someday I'll be more "normal".

It took eight years for me to actually pursue an evaluation. When I got the diagnosis it was more like a relief, and I think I'd already done the grieving in the previous eight years of coming to terms with the possibility. Again I know that sounds like I got ahead of myself, but since I'm now DXed I guess I wasn't wrong after all. I sort of did the "work" already and the confirmation was just more of a relief than another shock. But yeah there's grieving to know that things about yourself you thought could be eradicated are actually things you can only "work with" but not just stop essentially being.

I actually cried upon reading the final part of my psych report, despite being delighted at the dx -this was less than a month ago.

The dx happened after a string of unfortunate events, including divorce and mortality issues and this may have fed into it. Between the dx and the report was an 8 week wait (though I was told it would be 2), during which I became convinced that the NHS had dumped me.

Yes, it was just like grief, then I was walking on air for a week, now a period of adjustment. There's other things around to depress me, but the dx is like a shield for me and very very good news.

Never was normal, never have been and don't want to be - this makes things easier.

A large part of the problem with dreads about a DX is thinking it actually is a problem.
sure, being on the spectrum has its issues, but calling it a problem is the problem; you are not 'broken', and do not need to be 'cured' (well, no less than, say, a gay person or a transgender).

stop seeing the negatives and focus on the positive parts of being on the spectrum; i can assure you that there are plenty