Where to Begin with Processing and Dealing with AS?

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First of all, I am still in the emotional state with this so while I do not intend to offend anyone I may do so unintentionally. If I do, I am sorry and please forgive me.

I do not have AS, but I am 99.9% certain that my grandmother does.

Here is the background. Growing up, I didn't have the best home environment and my grandmother was the only one who was there for me. So her and I were very close--infact she was more of a mother than a grandmother. Last summer, she moved in with my husband and I. We moved her across the country and into our house. Being fully aware that she has never lived anywhere outside of that little town, we did everything we could to help prepare her. She is a big reader so I got her books on the area we live, sent her the local magazine so she could see what goes on from day to day here, gave her a book on culture shock and dealing with people of other cultures, and of course talked with her about anything and everything that she would experience including the basics like "when you get here, it will take time to learn where everything is including the grocery store" (which is literally down the street).

She did read everything we gave her, but she had the weirdest response of "oh I know this already" and to the book about dealing with cultures, her reply was "Well this is good, now I can help change people". We assumed it was stress and figured well she will either listen to us and the move wont be as traumatic or she wont and well it will be the worse experience of her life.

After she moved in, we started noticing the weirdest behavor. Or at least what we thought was the weirdest behavors. Things like she was obsessed with time, numbers, her inability to hold a conversation with anyone. If someone was talking about something she didn't know she would bring up some random topic that she knew a lot about as if that is what we had talked about the entire time and be completely oblivious to the fact that everyone was looking at her weird. She would get mad that we didn't live our lives the way that she does. She is inable to judge the temperature outside without a thermometer to tell her what the temperature is. She can't live if there is so much as a piece of dust in the house--everything must be perfectly cleaned and perfectly manicured. She is offended by sounds and lights that she doesnt like and feels others just agree with her on this. Just to name a few--the list goes on and on!

When we would talk to people about what was going on they would tell us that we are being impatient with her and that she is in her 80's so she is entitled to act this way--its just her age. I'm sorry but that is crap! She is more than competitent and capabile of living on her own. There is nothing wrong with her mentally (there is no alztimers or demensia or anything like that)--it didnt make sense!

One of the hardest things for me to deal with was the realization that she doesnt have a clue as to who I am! How does someone know every detail of who you are, what you've expereinced, and how you think, but not know who you are? To me, it was and is insulting to say the least.

Then the other day I heard an interview on NPR of an author and his wife. They were talking about how she was ready to divorse her husband because of all of the weird obsessive behavors that he had--she was aware of them, but he wasnt. She did some research and discovered AS and it was a perfect fit! When she sat down with him and took the test--she knew the results, but he was floored he had no clue. He then turned around and wrote a book about dealing with AS and learning to be a better husband and father. Listening to this interview described EXACTLY what we have been experiencing with my grandmother!! !

I went and did the research and took the tests for her online. Everytime the result was around 45 out of 50! Every case study I read its like "that is her"! We have ordered books to learn more about it and how as non-AS people can deal with her, but I dont feel we should have to completely change our life because of this--it shouldnt be one sided!

How do I make her aware of this? One of her obsessions is her believing that she is better than everyone. She feels that the "enlightened ones" live just like her and that the rest will change in 2012 to be just like her!

After this past year, I have to admit, that I am very burned out and offended by how she has treated us, me in particular. I never noticed before because I never lived with her. I only saw her for at most a day and a night so she still had her schedule, and I was preoccupied with my own challenges that if there were signs I wouldn't have seen them.

I don't know what to do. I'm angry. I'm hurt. I'm offended. I feel like I've been lied to. I feel betrayed. And quite frankly, I don't know if I want to deal with it.

you do NOT know if she has AS as you took the tests for her.

She is in her 80s? Take her to the doctor and ask them to do a physical. What do you mean she doesn't know who you are? Have you considered she may have had a minor stroke? Could she be suffering from anxiety and trying to control things around her because so much has changed?

You might consider an assisted living center for her. She would be near enough to visit and love on and far enough away not to drive you insane. They have a lot of activities, other people her age, and maybe she would be less anxious.

She's given up everything to move in with you and even if by some chance she does have AS you are not qualified to diagnose it nor does that absolve you of your family responsibility.

So let me get this straight, because you have been diagnosised that gives YOU the authority to say she doesn't and again to just use the same excuse as what I have been hearing "oh shes in her 80's her mind is just going". THAT's CRAP!

Her mind is not going. She moved in with us to be with us--not because she had to. She is more than capable of living on her own. Its a want not a need.

The majority of what I am reading is saying that it is someone else in the person's life that noticed it and called attention to it first. That is all I have done. Until I heard that interview, I was blaming myself figured it had to be me that was doing something wrong. How can I read hundreds and thousands of articles, case studies of people who both have been self-and officially diagnosised --they all say the same thing AND it is identical to what I am experiencing with her?

Believe me, I am not one that goes running for an excuse. If anything I am on the other spectrum and tend to believe that people over diagnosis so they have an excuse not to face life. But I am also not ignorant enough to know that something doesnt add up and if ALL of the symptoms fit, then there has to be something worth considering.

Your post may have intended to help, but honestly it offended.

I think the point was, although rather blunt, that really a psychiatrist or other medical professional "officially" diagnosis a person with Asperger's. Going down a symptom list can be dicey, and we wouldn't do that for a medical illness and then medicate ourselves based on our research. We would go to a doctor!!

The second thing is you said your Grandmother does NOT have dementia or Alzheimer's, yet go on to mention that she "hardly knows who you are." That's a bit confusing, and implies that there is some sort of memory loss happening. This would NOT be an indication of Asperger's, but something else.

The key is that you've known your Grandmother your entire life. If these behaviors are new, then something else is going on, such as a stroke, brain injury of some type, Alzheimers, etc. Asperger's is generally something one is born with. They may not get the "official" diagnosis until adulthood, but all aspies have symptoms from the time they are two years old, if not before then.

@angeltail please don't take this the wrong way but your description does not sound right for AS. Autistic spectrum disorders are developmental. In other words you are born like that. From your description your grandmother suddenly changed. This is why kate123A queried your conclusions.

The stress of a sudden change in living conditions could make existing symptoms more exaggerated but they should have been noticeable before the move. Think back over the years you have known her. Is her behavior just worse than before of has she changed completely? No matter what, if her behavior has changed enough to be a cause for concern I think you should seek a professional's advice. It could just be a stress reaction or it could be something more serious.

@RazerEddie, actually no she didn't suddenly change. I did exactly as the advice recommended I looked at her past--her patterns--her relationships. Its been there her entire life. She will tell you that everyone in her life has always told her that she takes things to seriously, that she has no sense of humor. She isn't able to hold a conversation unless she is talking AT you. I was saying that *I* didn't recognize the symptoms as a kid, because 1-AS didn't have a name then or when she was growing up--so how could she have been diagnosised by age two, and 2-as a kid your not looking for things like that.

And yes these things were noticeable before the move, but again *I* didn't look at them as symptoms because I didnt know anything about AS and it didnt directly affect me. I had heard of it in passing, but it was nothing I looked into. She was and is more than capable of living on her own (as are most people with AS) so why would I worry about things like that?

Listening to that interview and that guy explain his symptoms was EXACTLY like him describing what we watch her do. Listening to his wife talk was exactly like listening to my husband and I describe what we didnt understand in her.

Your right I didnt correctly explain the "she doesnt know me" thing. As a non-aspie you get to know people, feel people emotionally. You get to know how they think, what they feel, what makes them happy or sad--the neuances of a person and of a relationship. To me, when you spend that much time with a person and you are that close--both parties should / would know that information about the other. Looking back, there were signs of this my whole life, but one of her coping mechinizisms is assuming that her and I are "just alike" so she has always thought that I did everything just like her even though she heard me and saw me not live my life like her.

I know the symptoms are not much more than a check list and I down scored everything on the test--partly becasue I didnt want it to be and partly because I know its not my place. But she does live with me. So if there is something I need to know or learn how to do, then I have that right.

Well, you're probably not going to like this either, but...

If an 80+ year old woman DOES have AS, from the point of view of someone who figured it out when she was 19 with plenty of time and life and energy to change her personality (and still ended up deciding not to because it just cost too much in terms of stress, effort, and lost enjoyment of life)...

...your best bet would be to learn to live with it. Understand that it's her brain, not something you've done, and don't take it personally.

As best as I understand it, from a neurotypical point of view, "dealing with" the symptoms basically involves learning not to act like yourself. After 80+ years of being who she is-- not to mention a lifetime of hard work-- is it really fair to her to ask that?? For that matter, is it really fair to you to drag the whole family through all that fighting and effort?? Imagine that, even at your own age, someone told you you need to radically change pretty much your entire personality, right now, or else. That's a MAJOR process. What would that do to you?? To the people around you??

What I'll bet that fellow and his wife on NPR didn't talk about is the fact that, in a lot of ways, Aspies (like anyone else) are who we are. We can pick certain traits to alter (often one at a time, with great effort and limited success). Like anyone else, we cannot turn into something we're not, or stop being who and what and how we are. No one would ask that of someone who didn't have a diagnosis-- having some "syndrome" shouldn't suddenly make it OK to demand that a person stop being themselves.

There are medications that can, in effect, mute or erase her personality and replace it with something much more docile. They're hard on young people. They'd probably kill Grandma, or turn her into a virtual vegetable. Most of them have a black-box warning about use in the elderly. If you really want to do that, I'd be inclined to wonder if you're not still too wrapped up in your own life, your own pains and problems, to pay much attention to Granny.

Sorry Granny's a bit of a b***h. I know that's not an easy thing to live with. I have a stepmother who had a stroke in infancy and has, literally, half a brain. She's got a terrible temper and the impulse control of a three-year-old. After 30 years as a bartender, she also has a knack for pushing peoples' buttons. Being around her can be very painful. She drives a lot of people away.

Loving her is hard. But it got a lot easier when I realized it wasn't (exactly) something she had full control over, thought about my own struggle to change myself, and then visualized her going through that.

You've got all my sympathy. Really. I also come from a place where extended family households are statistically much more common than they have been in mainstream society for the last 75 years-- I know all about this; I believe in it (to the extent that I've spent the past six months living with my in-laws to care for them, and I'm going home to a house with an attached apartment that they'll be moving into in a few years) but I will be the first to tell you it's anything but idyllic or easy. It is, in fact, a massive adjustment, a painful process, a huge inconvenience, and a gargantuan pain in the ass. Having anyone move into your life is very difficult. It's a major adjustment-- not just for them. Also for you. It brings up things you never thought about, it brings out the worst in people, it's stressful as all bloody hell.

It's kind of like having a new baby. Only, with all the stress (times ten, because the person in question already has quite an established personality), and without all the cute bits.

Good luck.

Last edited by BuyerBeware on 04 May 2012, 3:26 pm, edited 1 time in total.

As my bf and I have reunited, I am making a point of learning "radical acceptance." There are some things about his behavior that leave me feeling challenged and confused, but I can see that is at least 50% attributable to my preconceived *expectations* as an NT, about relationships.

I have a new and unique relationship with him that forces me to learn and grow as a person. I love him so much, and respect him so deeply. Anyhoo-

While we NT's express frustration with the supposed lack of "theory of mind" that is present in Aspies, the truth is that we are also guilty of the same thing to a degree. We are all guilty of a certain degree of egoism, know? Since as an NT, you're supposed to have an easier time with empathy, try to see the world through the eyes of someone who just does not comprehend the emotional impulses and hinting that we take for granted. Try to focus on the fact that somewhere inside, she must crave your presence, or she would not have moved in. Think of how hard it must be for an Aspie to suddenly need to feel connected and safe even MORE than they need to solitude and control of their own familiar home.

I'm not trying to belittle your struggle. Just to soften it. I, personally, could not do what you are doing, and would have said so. To that end, YOU are the bigger person...

So, why not spend some time thinking about what really matters- what you can live with and what you absolutely cannot deal with. And based on that, find some solutions. If the home becomes resentful, everyone will suffer. At 80, a person is not likely to change much-- so it is upon us younger folks to learn coping skills, or find an alternative situation.

And if your Grandma *is* an Aspie, she will appreciate a logical approach anyway. Good luck!

Like it or not, I have already come to terms with that fact--that we will have to be the ones to change and just "deal with it" but what's hard for me, is I don't have any clue where to begin. What are things that I can do differently so I am not driven further down the rabbit hole of insanity? I know everyone is different, but one thing I have always tried to do when presented with a situation is to look first at how I can change to improve it. I see no point in blaming, but having said that, I see no starting point. Perhaps the reason her and I got along so well for all these years was our relationship was based on her teaching me and always talking at me. She never wanted to hear what I had to say and she was giving me answers to things that no one else would or could--so it was a win-win situation. Now the dynamics are different, I dont need a teacher, she does--if for nothing else than to learn the area. But she doesnt want it. She would rather do everything to prove me wrong then get mad and frustrated that she couldnt and blame the area. So I have stopped offering her that advice and have adopted the mentality of 'give advice only when asked'--which is never.

That is what I don't understand--and to me is a contradiction. What does it mean to learn to not be yourself? How does the thinking work? I don't expect her to stop being who she is, but at the same time, what comes across as insulting and condescending is down-right rude. Am I suppose to give her a 'get out of jail free card' because she doesnt see it that way, but I am suppose to go 'straight to jail' because I offended her? She/they have the ability to learn to adapt and develop cooping mechanisms so I apologize if I am having a hard time understanding why this needs to be one sided. I can accept its something she is not aware she is doing, but it still leaves me lost as to how to interact with her.

And no I have no intentions of putting her on medication--never did and would do what I can to avoid any medication for her! And good luck with your upcoming situation!



You are completely correct--we all do have our own egos. And yes I agree with the empathy, but that's where I struggle. I cant figure out "her logic" or "her thinking". She is convinced that she is the most logical person in the world and understands emotions--everyones emotions better than them. I can assure you she's not! In her mind yes, it makes complete sense, but anything she feels she projects onto us. When we tell her "no that is how you are feeling" it flips her out for a few days. But if we don't then she obsessively brings it up in every conversation for days/weeks/months/years. So in my opinion, it is something we need to address and correct her on.

And yes that is another point that I have forgotten, "she must crave your presence, or she would not have moved in"; I just don't know how to make it work. I don't understand how she thinks to change what I am doing.