Other Autism... formal dx this week

[DogwoodTree]

About a year and a half ago, I started suspecting I have autism. Spent all these months learning more about it, and finally decided to get a formal assessment. The evaluator said I'm most definitely on the spectrum. My score was very high.

I feel relieved to have this question settled, but knowing that my neurology prevents me from connecting emotionally with people almost puts me in a panic. How am I supposed to live all of my life feeling this alone inside?

I asked her about how this could inform the work I'm doing with my regular therapist. She suggested EMDR, even though I'm concerned I won't have enough contact with my own emotions to give relevant feedback during the sessions (I have delayed emotional processing issues). She also suggested neurofeedback, although finding an affordable way of doing that is a challenge. She also felt CBT was a really good match--that's the bulk of what my T is already using.

Anyway, I don't have any questions or anything. I've mentioned AS here before, and I guess just felt like posting an update.

I told my regular T this past week, if I can't do connection with people, then I'll learn how to do inner solitude really well. (I've actually signed up for a weekend retreat at a monastery.) The look on his face when I said that (I read body language and facial expressions pretty well, but I don't know what to do with the information)...he looked sad and disappointed, concerned even. Is it appropriate to ask a T, when you've said something in a session, "how does that make you feel?"

It hurt, because I'm trying to find what I can do well, and how to make myself useful in some way. I've always prioritized seeking connection and intimacy, and I feel like I'm giving up on a lifelong dream, kind of like someone dreaming to be a dancer and then being diagnosed with something like MS where they'll never be able to dance, but then they find they're excellent at something like public speaking, and still find themselves having fun on stage. If I can't connect with people, then I'll learn to connect with myself in the form of self-knowledge and inner solitude in a way that I can maybe bring insights to other people's journeys into self-knowledge. But in some ways, that seems like such a pathetic, idealistic, naive goal. And the way my T looked at me...I realized how deeply I'm hurting, and how hopelessly alone I feel inside.

I'm focusing all of my relational efforts and energy on my DH and kids. Pretty much giving up on all other relationships. Well, there are 3 friend-like people who I don't think will let me give up completely with them. But I'm always careful with them not to say too much, so as not to burden them or scare them. I'm afraid that, if I tell them how little connected I feel with them, and how much that hurts, and how desperately I wish I could connect with them, that I would scare them off. Whenever I "open up," people tend to run away. It's one of the fastest ways to shut down a relationship. So now, whenever I feel that urge and desire to connect with people, I turn back inwards and remind myself that I'm not made that way...I'm not wired in a way that lets me enjoy and rest in relationships with people. I don't even know why I'm posting this. Just needed to put some stuff into words, I guess.

 

[shimmerz]

I know since I had my meltdown 10 years ago, I started up with very autistic type behaviours that I never had before. I don't know yet what that means to me. I am glad you posted! I would be very interested in anything else you have to post and suspect others will too.

Is it appropriate to ask a T, when you've said something in a session, "how does that make you feel?"

lol. Yep! Tit for tat! :whistling:

 

[Friday]

if I can't do connection with people, then I'll learn how to do inner solitude really well. (

It's the "can't" here that concerns me.

Autism doesn't equal an inability to connect with other people. It can but there is a spectrum for a durn good reason.

All of the things you mention don't lead me to believe that's something you don't want & are incapable of. To the contrary, they lead me to believe that connection with people is something you cherish & care deeply about, even if it's something that you struggle with.

 

[Friday]

There is a man I know. He spends maybe 99% of his life alone, on the surface. Boat-People. He loves being alone, loves the solitude. (To be clear, most Boat-People don't, it's a tight community of friends you haven't met, yet). But every once in a while the urge strikes him to meet up with people, and so he heads to port. That's where I met him. He can -barring his boat getting f*cked up and needing repairs- spend years without seeing another person. Other times he's more social. He's spending time in port, making new connections (c'est moi, perfect example of type), strengthening old ones, keeps up a lively correspondence (snail mail, back when I knew him, although I wonder if he's switched to email I rather doubt it. It's nice to have an excuse to go somewhere, and needing to be in Portugal or Brazil or South Africa to pick up his mail is a destination).

I love this man very deeply. He's good people. Does his connection to people look the same as most people's? Nah :) It looks like him. Suits him down to the ground. <grin> & on the water that's a long long way! Suits those of us who love him, too.

...

My cousin is LFA. He only loves one person in the whole world, is only connected to one person. No matter how much his parents tried, no matter how many therapists, he simply doesn't do connection. But he can. With one person. His sister. Who loves him right back.

...

Connection to others, it's not this static "This is what love looks like". Even in the vast ocean of "This is how most people do it" there is a huge range of variation.

Most people? None of us need the way most people do things. We need the way we do things. We don't always get to do things the way we want to, the way that suits us best. That's loneliness, right there. Being alone? Isn't lonely. Feeling alone can & does happen surrounded by people. When what suits us best simply doesn't happened to be present. When we make do, and get by, until we can build the connections that do suit us, each of us, down to the ground.

 

[Deleted member 20978]

@DogwoodTree You really don't sound so far on the spectrum that you can't connect. From just your one post here I can see you have a lot of access to your own feelings, are expressing a desire to connect to others, and are making lots of emotional sense, meaning, you are not incapable of connecting.

I have suspected I'm on the spectrum for years -- I have tested as "neurotypical" but am skeptical. My father was definitely Aspie and my wife was diagnosed as this too. I've had a few close friends with the Asperger's diagnosis. No two are ever the same. Even in cases where understanding social cues is most challenged, every one I have known enjoyed real connections with others, albeit sometimes with eccentric ways of connecting.

Is it appropriate to ask a T, when you've said something in a session, "how does that make you feel?"

LoL. It sounds like he was maybe expressing disappointment thinking you were selling yourself short insofar as being able to connect with others.

There is a difference between being lonely and disconnected versus lacking the capacity to connect to others. Silent retreats are also good, as is solitude and connecting with the deeper things. Everyone I've known on the spectrum has a pretty rich inner world, and that can be a good thing too.

 

[DogwoodTree]

I haven't found a way to explain this yet that anyone seems to really get it. But I'll try again here.

I do have emotions, deeply so, and a burning desire to connect with people. It just never works. Those emotions inside...it's like they're locked away or something. I can feel them, but I have no way of expressing them on the surface. Like when I feel sad...I can't cry. My body and my emotions aren't in sync enough to create genuine expressions of what's inside. Everything that comes in or out must pass through the logic filter part of my brain. Emotions can't make it through this filter, so they're "lost in translation." If I express emotions at all, it's either a fabricated replication of some kind, or it's (in rare cases) a system overload that I just couldn't control any longer.

I watch other people interact, and they seem to genuinely enjoy it. I thought everyone was faking that enjoyment just like I was. I practiced faking it better, the way I saw everyone else faking it. It's only in the last couple of years that I've slowly begun to realize...most people aren't faking it. They actually do enjoy interacting with each other, for the most part (with some exceptions, but these are exceptions, not the rule). Even still today, I have a really hard time accepting this concept. I'm not completely convinced...I kinda suspect people are faking enjoying each other, but they're somehow not aware they're faking it. They're just so fully invested in convincing themselves that these interactions are a good thing, that they can't be honest with themselves and realize how little all of this matters.

At the same time (and I now realize this is incongruent with what I just said, but it took me a very long time to see the inherent contradiction here)...at the same time, I thought that if I could just learn to fake interaction well enough, that at some point I would get good enough that I actually would start to enjoy it. I kept thinking, I just haven't learned to do this well enough yet. I have to keep trying, keep practicing, and eventually this will work the way it's supposed to. Eventually, I'll feel whatever it is other people seem to feel from being with each other. But it never happened.

So then I thought my problem had to do with the quality of people I kept trying to connect with. So I set myself up with the most ideal relationships and circumstances I could put together...one on one...with the expectation of deep conversation...with people who seemed to do relationship really well. And yet...even when everything else goes perfectly and we talk openly about things that really matter (not just small talk)...I still feel no connection with that person. I still walk away feeling more alone than when we started. I've kept at it. One friend, we've been meeting for serious conversation every 4 to 6 weeks for 2 years now...and still, I walk away with no sense of having connected on an emotional level.

There's just no emotional connection for me. Like...compliments seem to feel good to other people. To me, a compliment or criticism either one...doesn't really matter. So long as the person is giving an informed opinion, both are equally useful to me. The compliment might feel better in the sense that I'm pleased that something I've done was useful to the person. But it doesn't make me feel warm and fuzzy inside. In fact, most compliments I just ignore because they're offered in an attempt to "make" me feel good, instead of given as honest, useful, informed feedback.

Being around people is a challenging intellectual exercise for me, just like doing calculus would probably be for most of you. Everything about interactions with people is processed intellectually, through a series of algorithms, in an attempt to appear somewhat normal and interactive. From the way I walk, to the facial expressions on my face, to my tone of voice, to the words I choose and even the sentence structure...all of these factors and more must be carefully considered and crafted. It's exhausting. And yet, any time I try to let down the facade, the whole thing starts falling apart and people think I'm uncomfortably strange and weird, and they pull away from the relationship. They either avoid me, or they talk AT me like I'm a stupid child. I'm tired of it. It takes too much effort to be interactive, and there's too little payoff. I feel at a complete loss and don't know what else to do.

 

[Deleted member 20978]

I worry this may sound invalidating, but you sound very different than my experience with the ASD spectrum. Perhaps you are on it, maybe. How you describe yourself fits. However this entire thread feels about wanting authentic connection. Maybe you have mastered the mechanics of appearing normal, but that's not that abnormal. You pass the Turing test for me. Maybe you *don't* automatically mind meld with everyone. Maybe you are selective and more complex. I could walk into any sports bar in the world and not connect with everyone there! Sometimes the right thing to do is fake it and show some side that fits.

Anyway. I haven't issued any compliments, just meaning some reassurance and calling it as I see it.

I've spent 90% of my life feeling alone, including in HS when I was nominated and declined becoming president of the student body. There were times I wanted to be diagnosed as on the spectrum, simply to have a coherent explanation. So in that sense, I relate to a lot of your self-description (at least as I read it). But I also know that I feel better, and yes, warm and fuzzy, in those relatively rare spaces where I feel authentic connection. This *always* requires someone at least as freakish as me. In most cases I feel parts connecting to parts, and though this can be painful, I accept it is what it is.

Hope if I'm not having any reassuring effect I'm at least not causing any harm. I don't mean to imply I know where you may be on the spectrum or how you feel about it. Just my attempt to connect to what you're writing.

 

[DogwoodTree]

My understanding is that for people with classic or low functioning autism, there often is not a desire for connection, or not much. But for people with asperger's (I realize that term is retired now, but it's still a useful distinction) or high functioning autism, there usually is a desire...desperately so...for connection with other people, but a lack of understanding on how to make that happen.

Also, women on the spectrum are different from autistic men in that we tend to pick up on masking skills more easily, and society surrounds us with more defined social expectations. Autistic women often become social chameleons, emulating a socially skilled friend's personality and behaviors in order to appear more normal. But it's not a natural, intuitive expression of ourselves. It's just a performance, like an actor on stage.

I have other traits that help place me on the spectrum as well, such as sensory sensitivities and repetitive movements and intense special interests and reliance on routines. I manage to hide a lot of that from most people in my life, but it's very stressful to suppress those parts of myself...it takes a lot of emotional energy to do so. And those things, you can't see about me through an online forum. When writing, I have a chance to think through deeply what I want to say. I'm an author by trade, so this comes more easily for me. But in person, I come across very differently unless I'm actively masking (like at work or at business conferences, where I'm not trying to achieve an intimate emotional connection).

 

[Deleted member 20978]

You definitely read as what I guess used to be called very high functioning Asperger's. Yes, desperately wanting connection and not knowing how to obtain it is hard. But a desire to connect and the ability to introspect is a lot to work with, you know?

Sorry to keep responding despite not really having any answers. Have you tried connecting to any ASD groups at all? For people on the very high functioning end, this can offer a window into ways you are socially aware, and can highlight errors that are more visible in more extreme cases, all of which may be useful in finding how (and when and where) you could find more meaningful connections.

 

[DogwoodTree]

I've only found one ASD group in my area. I checked it out about a year ago. It's a small group, and most of the people were either pretty low functioning, or were parents of low functioning ASD people. The conversation tended toward the lowest common denominator.

I should probably give it another try. I'm also concerned, though, because I don't want this to become public knowledge for a variety of reasons, not the least of which is how invalidating my family would likely be.

I'm also part of a small-group through my church. It's been informative to watch the various characters in this group. I purposely chose a group made up of people who are different from the people I'm normally drawn to so I could see if that would make a difference in my success level. It didn't. I could stop going right now (after almost 2 years of going regularly) and not feel a sense of loss of relationships, just a sense of defeat.

 

[Deleted member 20978]

I went to some ASD gatherings in support of my wife, and had a similar experience. She got a lot out of it, despite being higher functioning than most there. I couldn't stand how out of it and rude some people were being. So yeah.

I know this doesn't help figure it out right now, but I'd bet a million bucks that if you found those peeps who you really felt connected to, authentically being yourself, you'd stop caring if you are ASD or what. The trick is finding those people, not twisting yourself into normal. Imho. And this is assuming you have a million bucks.

I do not mean to dismiss ASD -- knowing about it if it fits can offer real helpful things. Interestingly, people on the spectrum share some traits with people dealing with PTSD, like the stress cup tending to fill more quickly. So managing activation and stress levels are certainly useful and can actually make a difference in how many calories you have to be social.

 

[Ronin]

However this entire thread feels about wanting authentic connection.

Autistic people are people first; how does wanting an authentic connection exclude one from possibly being autistic? That some needs manifest differently does not negate those needs present.

I should probably give it another try.

Have you tried nearing areas, with population more suited toward your needs? Somewhere you'd have possible time commuting to? IMHO trying to fit somewhere very different from your experience just for the sake of community isn't helpful long term and is draining.