Thoughts on Relatives, Risperdal, and Life

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There seems to be a lot of angst and debate around the question of "acting NT." A pretty sharp divide appears to exist. Those who can, do. Those who can't, resent it.

I have the same divide in my own mind. To a significant extent, I can. I do. And I resent it.

Aspies aren't the only ones with idiosyncrasies. My DH is a video game junkie. My FIL is a television addict. My MIL likes to b***h, b***h, b***h. My NT BFF sleeps with anything that moves and thinks men are for playing with. Ad infinitum.

I am expected to tolerate their idiosyncrasies. I don't mind. People are just people. What I mind is, the tolerance is not a two-way street.

I don't like making business calls. For 13 years, I've made the vast majority of them anyway.

I like big words. Not because they're big, because sometimes they are the right words. I try not to use them because I know hearing unknown words offends people.

I like gardening and self-reliance. It's one of my special interests. I try not to talk too much about it because I know others think it's dumb. Silly.

NT people get to draw a line somewhere. "You can talk about what you want, and then I get to talk about what I want." "You can do what you want, and then I get to do what I want." "It's my turn."

Why does it seem like AS means it's NEVER MY TURN??? When I ask for my turn, I'm being difficult. I'm perseverating. I'm being autistic.

I'm supposed to try to go along to get along. NT people don't have to do this all the time. For them, it is give and take. For me, it is all give. If I take anything, it is going to be resented. Why???

I try not to think about this. Most days, I succeed. I keep busy-- three kids, housework, calling my grandmothers, talking to my in-laws. I make the kids one of my special interests. Most days, I can suppress or avoid the wondering why.

Not all days, though. For about two years now, it's been the subject at the center of a miserable depression. WHY, WHY WHY????

People get angry when I ask why. So I try not to talk about it. Back to the daily routine. Suppress. Stay busy. Hang on to your happy thoughts.

When I tell people I have AS, I can't tell you how many of them (the ones who know what it is anyway) say "You manage it so well! I can hardly tell!"

No s**t you can hardly tell. That's because whatever else I do, the cardinal rule is Do Not Be Yourself. Go along with what others want to talk about, never bring up what you want to talk about. Do not allow being anxious or upset to show. Smile, smile, smile. You know that blank. wooden face that is so commonly associated with AS?? For me, that face is a smile. It makes people happy, so it's the default setting. Do not show that the bright lights. the sheer volume of noises, the press of people is getting to you. If you can't pick one voice out of the crowd, pretend you are a little hard of hearing because that is socially acceptable.

I don't think I could "be myself" if I had to. I don't know what "myself" is. I'm just a hole into which people input whatever it is they want me to be. And if I am anything else, I am rejected.

I brought this up to a psychiatrist about a year ago. My Dad had just died (alone, because he had AS too and the rest of his family thought he was too much trouble and I wanted to go be with him but DH didn't want me to so I didn't go). I had tried to take care of my stepmom and kids-- all by myself, because no one would help me-- and failed. I was so sick of it all that after five years of smiling and repressing everything all the time I was sobbing and yelling.

I think anyone would have a meltdown after five years of repressing 95% of everything they thought and felt. I told the psychiatrist that I needed to learn a new way-- a way that is not demanding to get my own way all the time but is not being everyone's doormat who asks for as little as humanly possible either. I told him I needed some help to find a middle ground. Middle ground-- that's what we're supposed to be striving to identify, right?? For an Aspie, learning to find middle ground is as good as it gets.

What did I get?? Risperdal. A psychiatrist who told me to take 2 mg and go to bed when I start to get upset. And two therapists (and another psych) who told me to take 2 mg 3 times a day for the rest of my life, on the grounds that it would help me not to feel things. I didn't even yell with these people. I looked at the floor, spoke in a lower-than-conversational tone of voice, kept my hands folded in my lap, and never shed a tear (I very seldom allow myself to cry-- I used to go hide in the bathroom and punch myself in the stomach for crying because I was tired of being teased because of crying easily and now I almost can't cry).

Told that "This is the recommended treatment for Asperger's, so don't be argumentative." "Being argumentative" seems to be defined as "Not shutting up and doing what we say." I did not yell. I did not cry. I did not interrupt. I simply waited my turn and said what I thought. This was "being argumentative" and "not complying with treatment."

DH said those people didn't know what they were doing. After a few months of Risperdal, he begged me to stop taking it and try a different therapist. He said this time I should not tell them about the AS, just about the depression and anxiety.

So that's what I did. And I did get treated a lot better. She really listened to me. We talked about compromise. I thought, "Ah, we're getting somewhere." We were just about to start talking about what is the appropriate way to handle someone who refuses to compromise (stepmom's sisters)...

...and then I had a complete and total nervous breakdown. Hiding the AS drove me crazy-- not that acting NT was too much effort, with the therapist I did not have to do that much hiding. Just remember to look at her eyes and not get too long-winded. I was paying her to talk about what I wanted to talk about, after all, so that was appropriate. Just the fact that I had to hide it to get treated like a person.

I tried to commit suicide, couldn't go through with it, went to the hospital instead. Spent a week on the psych ward-- nice place. As long as I didn't pester people to Talk With Me About It, me and the staff got along great. They gave me a broom and a washcloth and let me clean. They gave me rules to follow and left me alone. They gave me a notebook and encouraged me to write. They gave me a copy of Gentle Ben and let me read. They gave me Prozac in the morning and Remeron at night and when I told them I was not violent or delusional they told me I did not have to take the Risperdal.

As long as I stayed passive, I could be myself in there. I wish I could live in the psych ward. I like playing board games with schizophrenic women who have no family that cares about them. I can do it all day. They don't mind when I say strange things-- they are just glad someone is talking to them. I don't get upset when they think demons are chasing them. I just say that I don't see any, but I'll get a nurse and stay with them until she comes. They like that. I wish that could be my life.

But it can't be. I have a husband and three kids and I can keep myself clean and dressed and I know right from wrong and I am capable of more. A residential facility is for those who cannot, do not, and are not.

So I spent five weeks in an intensive outpatient program. Then I flew to Florida to help my in-laws with their needs and the kids until we close on a house so I can take my kids home. I called my therapist and told her about the AS. I try not to do anything to irritate my in-laws-- like read too much or talk about how I feel or talk about the garden and the orchard and the berries and the ducks and the rabbits I want to have when we get our house. I can talk about working with wood because my FIL likes that. I can talk about the kids because they agree that the kids are important-- but I have to do it their way, not my way.

As long as I am in their house, I accept that. But how is it going to be in a few years when my MIL retires and they come to stay with us (the house we are buying has an in-law suite, that's why we picked it)?? Am I going to be 36 years old and letting others dictate my every move in my own home???

Where do I go from here?? How do I manage to cope?? How can I find a balance so that I'm not "being a bad Aspie" but I still get to be a person, I get to have and defend the same rights that it seems like NTs get to take for granted??

sounds like you could use a course in assertiveness. or just even read a book on it. sounds like your family is using your asperger's diagnosis as a reason to try to control you. that's totally not fair. when you first start sticking up for yourself, no matter how respectfully you do it, the controllers will act worse than ususal to try to maintain the status quo. after they see that you will not back down, they will make some sort of peace with the new you.

That's what I'm hoping. That's what the people at the intensive program said. That's... sort of... what my husband says.

It is a place of a lot of gray areas that I am still having trouble seeing.

And yeah, a lot of my relatives are dickheads. My dad's people at least have an excuse-- it's a PTSD thing, I found out while I was studying it.

My mom's people and my stepmom's people are just dickheads. They're from Fairmont. I know I'm imposing false categories, but I think there is something wrong with people from Fairmont, West Virginia. That's where I got bullied as a kid while the staff looked the other way. That's where I had trouble with the stupid nurse, too. I have not had very many good experiences with people from Fairmont.

Neither one of my grandmothers liked it there either.

Even my husband says his parents are just bossy, and that's why he picked a college that was 1000 miles away and only talked to them twice a month and saw them twice a year until he got through engineering school and got a job and got some self-esteem. He also says that's why his dad has three other kids, and they all went back to Indiana as soon as they finished high school (the IL's moved to Florida in 1982). He also says that's why out of four kids, they're planning to live with US. Because we're the only ones who put up with it.

He says that's what I need. Self-esteem. A Sense Of Self. OK. I'm trying. How do I get some? One?

i use two books with the folks i work with:

the self-esteem companion by McKay, Fanning, et al

the self-esteem workbook by Schiraldi

the first book helped me personally, as did al-anon, whose first principle is to take care of yourself. i have better self-esteem now as a part-time social worker than i did as a full-time doctor. i attribute that to growing up and realizing that all humans are equal.

I've heard of the one. I'll look the other one up.

I have built so much of myself around "being good." Avoiding conflict.

There's got to be something else.

What's the difference between being assertive and being a self-serving dickhead?? They say at therapy that assertiveness is simply stating your point of view. In an ideal situation that's true. In the real world, the step that follows Stating Your Point of View is Being Told To Shut Up, More Or Less Politely.

So what's the difference?? How do you be assertive when the evidence suggests that the last thing anyone wants to deal with is Your Point Of View, and what would be appreciated is if you'd just shut up and stay that way??

Is it being AS that makes it this way?? Like, everyone gets X amount of tolerance for differences, and I use mine up just existing?? Or, I'm less entertaining and therefore less valuable, so I get less?? Or is this simply the way people treat each other Out In The World, and I need to learn to cope with it???

I don't think that's the way people treat each other. Except-- I'm starting to think that that's just not the way I was TAUGHT to treat people. And thinking that that means people do not treat each other that way is evidence of the lack of a Theory Of Mind, at least on that subject. Could this be the case???

I wonder how "normal" people deal with this. Most of the women I know cope by putting up and shutting up. Except one of my cousins-- but she's beautiful and has exceptional social skills and so at least in the little world of the Upper Monongahela Valley can do whatever she wants. And one of my friends-- but she's brilliant and raised three kids on her own and doesn't need anyone's help for anything. Seriously-- five years out of grad school with an MSME, she's already a department manager.

Maybe the two things are related...

being assertive is saying things in a way that respects both you and the person you're speaking to - looking for the win - win situation.

being purely self-serving, caring only if you're needs are met no matter the cost to others is not assertive, it's aggressive.

an assertive statement ususally starts with "I". "I feel hurt when you _______." not, "you are inconsiderate."

it's an art that takes some time to master. no one is perfectly assertive all the time. we just all need to be assertive enough to get our needs met. my ex-fiance told me to be more assertive with everyone except him. he wouldn't last a day with me now.

some other assertive statements are:

"i could use some help with ______. when will you be available?"

"i don't have to put up with being called names. if you don't stop, i will leave the room. we can continue the discussion when we're both calm."

there are lots of books on the subject with more suggestions and examples. i recommend getting a book and practicing the suggestions you think would work for you, first in private or with a sympathetic friend or therapist, then with your family.

I get so mad sometimes. I think anyone would get mad in my shoes. I do not let it show-- but I think about it. I want answers.

I read about being Aspie in an NT world. I think about my own experiences.

If we tell people-- school officials, mental health professionals, medical personnel-- that we have "IT," hoping that disclosure will explain us and help them to deal with us and us to deal with them, we risk becoming less than human. Unqualified to have opinions about our treatment and care, unqualified to raise children, unqualified to be unattended in the outside world.

If we do not tell people, how are they supposed to deal with us?? I would never hand someone a brand-new high-tech smart phone without the user's guide and expect them to program it. I would never throw two strangers into a room with no background information and expect them to create a working relationship.

There is an easy answer, of course. "Become neurotypical." "Make yourself normal." Be, in short, something you are not. Do it all the time, for the convenience of others.

This is something that no one will say outright. No one would dare say something like that, because they do not want it for themselves. They know it is inhuman.

Yet it is implied. It is implied in a lot of the books written for the parents and partners of HFA individuals. It is implied in a lot of the treatment plans. It was implied in stuffing me full of risperidone-- despite the fact that it worsened my depression, despite the fact that I was never violent but merely once expressed a reasonable frustration, despite the fact that I was not complaining of sensory issues.

Why is it implied?? Why do they assume?? If I tell them I have Asperger's, the assumptions begin. When I say my spouse and I have a decent relationship-- why is it assumed that it is all because of his effort?? When people see happy, functional, unbeaten and reasonably well-groomed children-- why is it assumed that it is through someone's agency other than my own?? When I am frustrated with a situation-- situations that have driven NTs to adultery or divorce, situations that have for decades been written about as being unhealthy-- why is it assumed that it is my "low frustration tolerance" and that the solution is not problem-solving skills but sedation??

I am coping. I am living. I am doing what they say is the goal, the highest an individual with AS can aspire to. I am living a normal life. So why?? Why do they assume, and iterate and reiterate and reiterate the assumptions until I force myself to accept them as true?? Why??

anger is a sign that we need to change something. in your case, it sounds like you need to let people know you're tired of being taken for granted. you're ready for some give and take. say it calm, but say it firm and when they up the ante to keep you in your place, stand firm. they'll gradually get used to the more assertive you.

As much as anything at this point, I think I am arguing with myself.

My own low self-esteem, my own ingrained belief that different=bad and must be suppressed.

It's just-- FRUSTRATING!! !! Off-pissing.

I look to experience to justify my argument against myself, against the paradigm I hate-- and I end up seeing justifications for the paradigm instead. I look to authorities for justification for the need for a new paradigm-- and I seem to be confronted with a lot of justification for the OLD paradigm.

That got me into this mess.

I used to be someone that held her head up-- at least halfway up. Then bad things happened and this paradigm took over. I tried to challenge it-- it got reinforced.

Relatives I understand-- they get used to a single way of being and that is how they think of you. It is not only Aspies who have a hard time with the idea that people change.

When I get it from strangers?? People who are supposed to be there to help with healthy choices??

I guess I shouldn't be surprised-- I'm talking about people deep in the Bible Belt and people in the same f**ktard place that produced my relatives and the kids (and parents and teachers) who 20 years ago said it was OK to bully me because I was a weirdo, my grandfather was a psycho, and my mother was a tramp.

I get out of those areas, I get a different response.

Others' stories of having their fitness to parent questioned because of their or their child's diagnosis, others' stories of having to fight the mental health system to get decent advice and the right care, my own experiences with the same...

...it makes me wonder. How are you supposed to feel?? What are you supposed to do?? One cannot hide from the stigmas and stereotypes-- to do so is to cater to them and become a victim of them. How does one effectively challenge them, especially when one is not a paragon of imitative superficial perfection?? Obviously anger isn't productive. In their eyes, it just proves that they're right. Sublimation seems to make them happy-- it also lands you (or anyway landed me) on the inpatient psych ward (on a 201, and with a rather strong desire to take up permanent residence).

okay, you vented. that's a good step. you sound like you have a very level head on your shoulders. change therapist. do whatever it takes to be taken seriously in your desire to learn how to stick up for yourself effectively.

Yeah, I guess that makes sense.

It just--- GRRRRR.

Something I wouldn't wish dealing with on anyone.

A person needs a lot of self-confidence just to survive in this world.

And to be able to tell themselves that it's justified simply BECAUSE IT IS.

It's that simple, isn't it??

private message me with your progress, please. i'm 100% behind your work to find your voice.