Mid-Life Diagnosis -- Help

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I am a 45 year-old adult female. I just got the AS diagnosis a week ago. My son's school wanted to do a special ed evaluation on him and, in my research, learning about AS was like an AHA moment for me. We both have AS. My life, my shortcomings, and the reason my son has always seemed different from the other children, suddenly make sense to me. Doc confirmed it.

One would expect this to make me happy, but instead I'm feeling very depressed on a few counts. First, I feel a loss of a sense of individuality. All those little eccentricities that I thought were just me, well, it turns out they are not my personality, they are my disability. I don't know how to distinguish between the two, don't feel like I know where AS ends and the "I" begins. Second, I feel a sense of hopelessness that I now know I'll never be able to pull my life completely together and be "normal." Don't get me wrong -- I've learned to manage over the years, found a job that fits, found a way to deal with the chronic lack of organization and inability to plan, found hobbies that interested me enough to make up for my lack of friends, etc. But knowing that certain things will never come easily to me (as if I could honestly expect some big change to come this late in life anyway), that shred of hope is completely gone. Finally, I feel like so much of my life has been wasted trying to figure myself out and overcome hurdles when, had I known the "why" from the beginning, I could have concentrated on a more productive approach.

The other thing is my family. I thought they would welcome the diagnosis but instead my father (who is pretty clearly AS himself) made the comment that "being a lazy slob is a medical diagnosis now?"

I've always said that every lesson in life, I had to learn the hard way. Maybe the point of all of this is to teach my son all I have learned, on my own, about dealing with this disorder.

I apologize in advance if any of my terminology has offended anyone.

How did you deal with a later-in-life diagnoses? Do you think a local AS support group can help me deal with these issues? It's easy to type about but I'm not much of a talker.

Donna

Welcome to WrongPlanet.

For me it was just sort of a "aha" as well - a, "so that's what all that was about", and then I moved on.

Your father sounds abusive. I'd avoid him.

I have never found any sort of "group" thing to be in the least helpful. (I attended several when I was younger, as they were very much in style as a way to sort out any sort of problem). It's all in my head, and someone not in there couldn't possibly deal with it. I did have some one-on-one counseling that I found extraordinarily helpful, when I was entering adulthood. I don't know how helpful the same would be at this stage of my life (I'm a decade older than you), but at that point it was nice to have a neutral party to explore issues with. Perhaps you might go that route?

Welcome to WP. Wow, I think I've expressed those exact thoughts and feelings in very similar words several times over the past couple of years. I, too first learned of AS at 45, accidentally (and with some excitement) fell into a formal diagnosis at 49, and once I had the confirmation in hand, I found I had very mixed feelings about it. On one hand it was wonderful to know that the difficulties and shortcomings I'd struggled with all my life were in fact a physical handicap and not personal defects. On the other, it gradually began to fall across me like a shadow and made me feel in some indefinable sense...broken, as if the quirks and eccentricities that made me 'unique' weren't, as I'd always believed, 'special' affectations I'd chosen, but hallmarks of a psychological 'disorder'.

Well, I've decided that's a pantload of defeatist nonsense (which I am prone to on bad days). Okay, I definitely fit the Aspie profile, but having come to know some of the characters here, I realize now that we're as different and individual as any other mass of humanity you want to cluster together, we just happen to have the same sort of 'hitch-in-our-getalong(s)'.

As far as knowing where AS ends and 'you' begin...yeah, that can kind of nag at you for a while...but the truth is, you'll probably never really be able to pinpoint that. The wiring schematic in your brain is a slightly different setup than the norm, so from day 1 you have been seeing and experiencing the world a little differently than most of the people around you. Now, at 45, everything you are and all the ways in which you think, feel and construct ideas are influenced by that wiring. The "I" that you're looking for is routed through that wiring, so they are ultimately inseparable. The important thing to understand is that while AS is listed as a 'disorder' because we are a minority in the overall population and it does cause us certain specific handicaps in functioning within a society that was constructed by and for people whose thought processes are not the same as ours, it's actually more of an alternate design than a flaw. For all the difficulties it gives us, we're often gifted with higher than average intelligence and problem solving abilities. Spock and ET might have appeared strange in comparison with the people around them, but they were far from useless. And having been exposed for half a century to what's considered 'normal'...eeeww. I would never want to be that. It's so...pedestrian...



Eh - maybe - the so-called experts seem to think intervention with Behavioral Therapies will help young Aspies integrate. You can ask them if it helps. To my mind, Behavioral Therapy just means brainwashing, and in fact, uses a lot of the same techniques. Forcing someone to alter their behaviors does nothing to change the way they form thoughts. As for me, life has been what it's been - I don't know if being diagnosed as a teen would have helped me, it might have just given me an excuse for not trying. I think I had as normal a life as I was capable of having. But I feel fortunate to have received the label at this point in life, when every year makes me less employable, but identifying the disability makes me eligible for assistance. I'd have been hopelessly screwed without it.



That's horrible, what an ugly thing to say. I suppose there are a lot of people who think that way about me, because I seem quite intelligent and capable on the surface, and I'm sure they've never had the faintest notion just how helpless I really am on so many levels, so they probably think AS is just an excuse, or some 'disease of the week' affectation for attention. My family, however actually hasn't seemed surprised at all. Of course, they've seen firsthand for years how limiting my quirks have been. I think my parents were relieved that it was a neurological handicap and not bad parenting.




There are a few real-life AS support groups, but like you, I'm not one for group anything. Wrong Planet here is a support group and for my money the perfect one for Aspies. Be forewarned: It's addictive. I'm supposed to be doing other things right now. Welcome, best wishes, congratulations on the DX and enjoy your stay here - I hope its a long one!

IT is terrible that your dad said that! It makes me so mad. My sister is like that too. I think they are negative and just want to be negative. God forbid there really be a REASON why you have troubles in life. They just want to blame you and see it as your personal shortfall. That way they wont feel guilty for calling you lazy or sloppy.

so take heart- you can now move forward while the negative people stay stuck in the past blaming and insulting. I felt a similar sadness when I was diagnosed with fibromyalgia. I felt that I should feel a little better because there was a reason why I had so much pain other than being just crazy, but i was depressed about it too.

I hope you feel better soon and can find help and support. I just joined here myself. Welcome to the community!

Thanks for your thoughtful response. There are moments now when I feel so tremendously relieved to know that it hasn't been just a perception/excuse that everything has been harder for me to handle. There was really a roadblock, or mind block as the case may be. When I spoke of a more productive approach to life, I'm not referring to integration or assimilation -- I've done that myself probably as well as any therapist could have directed -- but more about making choices that were in keeping with my limitations (which is what I hope I'll be able to do for my son). Example, I successfuly studied for a professional career but failed miserably at the actual practice of it because I couldn't deal with people and I couldn't keep myself organized. Maybe if I'd known then that these were hurdles that would require such a tremendous amount of effort overcome, I would have realized it wasn't worth it and looked in a different career direction. As far as my dad ... well, my family has always recognized achievement far above effort. To my father, it's not how hard you try, it's how far you get, so they will likely never understand that you can't win a marathon in a wheelchair. But I can credit his critical nature with helping me develop a very thick skin, which has definitely been a key to survival.

As far as the likelihood of me becoming addictive to this place? It would be against my nature NOT to become addicted to something that interests me!

Welcome to WP!

Welcome! I also am 45.

My career experience was something like this, although my 2nd choice of career has worked out much better than the first. I too have those "if I had known" questions, but I think I acquired some knowledge and skills by trying it, that I otherwise might not have. (If that makes sense.) This is not meant as a "silver lining" kind of observation, just that my time was not entirely wasted. I also think that, in my early life, I might have unnecessarily limited myself in some ways if I had known.



Ha - sounds like my dad, and if they are anything alike, his comment about your diagnosis was his idea of a joke. My mom always used to tell us that dealing with him was good practice for the real world. It may have been true, but it did not make me feel any better at all.

Anyway, try not to be too hard on yourself (easy to say, I know). Knowing yourself and your limitations is good, but don't beat yourself up about the limitations. I think of traits rather than disabilities. I also agree with the comment that we have a different way of seeing and dealing with the world, not necessarily an inferior way.

JSB

Your post resonated with me in many ways.

My family, whether they are NT or on the spectrum themselves, have all refused to acknowledge even the existence of AS. I bring it up, and...silence. But I'm not surprised - I learned long ago not to count on most of my family for any kind of support.

I also picked the wrong career, decades before I knew about AS. I'm still trying to figure the career thing out. On good days, I can imagine functioning extremely well (at this point I'm considering a PhD program), and on bad days, I want to go on disability for the rest of my life.

You might want to check out certain threads/forums here. The "You might be an aspie" thread is great in that you'll see things that make you go "Wow! I do that too" and will maybe give you more insight. But you will also see things that you don't recognize in yourself, and you will see that no two aspies are exactly alike - that there is great variation in all of us.

I also have an AS child, and knowing about my AS is helping me to understand her better. So you have that as a positive - you can help your AS child better.

Ditto, sort of.

I had a great career in high tech (in the old days of hi-tech) and did an excellent job - except when it came to personnel interactions. As long as I was alone in the room doing my job, it was fine. Once the social aspects slipped in, it was a disaster.

I spent years training for another career -which should have been perfect for me as I am an information ferret. Unfortunately, although I'd gotten much better with the "people" part of things by then I still just didn't have enough of the BS-quotient to make it in that field.

I spent several more years studying for yet another career at which I should have excelled - I am an excellent analyst and contingency planner. I breezed most of the classes, wrote great papers. Same demon raised its head.

Eventually I found a niche, but I could have saved myself years of hurdle and hoop jumping, and half of this grey hair, and a five-figure student loan debt had I had a clue early on that there was no way it was going to work....

Remember that AS is a developmental disorder so a lot of these eccentricities are you and not the disability and are in fact your personality which developed in response to some underlying structural issue. For example it has been experimentally demonstrated that making certain lesions in the brains of monkeys lead to autism symptoms developing,but these symptoms do not appear immediately indicating that these behaviours develop as a response.

Hello and welcome!

I just wanted to say that I'm pretty much in the same boat as you. I too have been recently diagnosed. I'm still going through the formal 'pen and paper' testing. Hopefully, just one more test to go. But, it's pretty obvious to the therapist and people in my life that that is what it is.

So, with that said, I can relate to the emotions and thoughts that you are going through. I am 38 myself so I'm not too far behind you age-wise. I've been taking it all very hard. And, it was because of that sliver of hope. Snatched away leaving me to wonder what it is I'm going to do, now.

One of the best things, is that I am now allowing myself to be me. All the physical reactions and impulses that I have controlled and managed to hide from everyone, I'm letting them run their course. I am doing this in the privacy of my own home. Not allowing me to be me has caused tremendous amounts of anxiety and distress for me.

I have to agree with the others in what your father said. That was just not very nice. But, then I guess that is to be expected from some people. And, seeing as how you have a thick skin already, I'm guessing that didn't phase you too too much.

So, again, welcome and take comfort in knowing that you are in good company. Just...if you're looking for donuts and coffee...well, there is no refreshment committee. Kinda sucks but it is what it is. lol

Take care.

I love the developmental explanation. It makes such logical sense.

Hi there, I'll answer in your text, if that's okay?

Welcome to WP by the way.

I had a sort of similar experience... I'm a thirty eight year old female. My son is very bright, but also very unique. He's just been diagnosed with AS. The more the process continued, the more I thought, "hang on, this isn't weird, this is me at his age..."

Eventually they diagnosed him with AS, and I spoke to my Dad... who said initially "there's nothing wrong with that, that was what you were like at his age..."

Then he admitted that I got a diagnoses of High Functioning Autism when I started school.

Yes... and I'm not trying to make you feel less of an individual, but I do know how you feel.

My initial feeling was, "how could my Dad have known that for thirty plus years and never told me anything? After all my hassles, and struggles, etc?"
.

Again... I get how you're feeling. I started to realise that some of the things I prized as virtues about myself were considered to be symptoms by others. This really hit my self esteem. An example would be the fact that I have an exceptional memory... it used to make me feel smart. Once I learned my diagnoses, I started to feel like Rainman. And again, the fact that I'm hyperanalytical... honestly, in many situations this is a great gift. But again... it's a sympton. I started to feel less of individual, and more of a collection of scraps stuck together. It's a horrible thing, to look at yourself as an object, not a person. But I think a lot of us go through this.
Find a new hope. You have actually come a huge way. You've raised a kid, held a job, come to know yourself... what's next? The secret to life, the universe and everything?

I'm not meaning to make a joke of it, because again, I do know how you feel... but look at this way, why would you ever WANT to be normal? Has it dawned on you that AS might in fact be a very useful trait in human society? Sure, if everyone was AS, it would be hard, but society does need it's odd bods and visionaries. Einstein, Newton, Mozart... where would the world be without them?

You are simply yourself. You see the world from a unique perspective, and the world is enriched by that perspective. The world would be such a dull place if only perceived in three dimensions... auties and aspies percieve it in different colours. Don't feel bad about that.
I do think if my Dad had told me from the start my life would have been much different. But then... I'd have been someone else entirely. If my life had been different I wouldn't have had my beautiful (and aspie) son. The world would have been deprived of his bright and blundering brilliance. So would I. The world and I would have been poorer for not knowing him. There's a Bible verse that springs to mind, "all things work out to the good for them that love Him." (Him in this case is God, I know this won't resonate with everyone.) But my point is that things do work out to the good, look to what is good and beautiful in your life. Would you change your son? If someone came and said, "I could get rid of your son, and give you someone very like him, only a neurotypical," would you get rid of your child? No... because he is who he is, and he's beautiful, and you love him.

And you are who you are, and you should love you. It's not that bad in the end, honestly.



Just ignore him. My brother was exactly the same, and my Dad is so far in denial that he still refuses to admit either my, or my son's diagnoses. (Oh... I'm in the process of being re evaluated, since it's been thirty plus years since I was initially diagnosed. The doctor has said that I'm "highly likely" to suffer from AS. But as my son's doctor says, autism is a neurological difference, not always a disability.)

Remember what I just said... a neurological difference is not always a disability. If one in a hundred people have some form of autism, there must be some advantage to it.
If you can forgive me quoting the Bible, I'm sure I can forgive you for anything... though I can't think of anything that would have offended.


Donna[/quote]Well, I just told you how I coped... I suppose emotionally it's been a later in life diagnoses, though technically it was very young. My experience, an AS group really would help. When I went to university, funnily enough I hung out with a bunch of guys who were on the spectrum (married one in fact) and when I was able to talk to others on the spectrum I was much happier.

Now that I'm diagnosed, I do feel much better. It helps to meet other mums of AS kids, other AS parents, and just to know that we're not in fact freaks.

If you ever want to pm me, let me know.

Thanks again for all the responses. I like you all already!

im in the process of getting diagnosed definatly know the revelation feeling