Nothing About Us, Without Us

One of my favorite groups out there is ASAN (Autistic Self Advocacy Network). The title of this blog post is their slogan, and I think it is a vitally important one, and not just for Autistics.

See, when I was a kid, I was quirky, weird, crazy, and in some ways absolutely out of my mind. Maybe not so much as a little kid, but definitely as a teenager. Hey, those are hard years, multiplied greatly any time you are different than the rest of the kids around you, and have no real explanation as to why you're different.

I didn't relate well to other kids. I had friends almost all the time, but a small group, and in hindsight they were not really good friends. Some actually had the nerve to be my friend, and do terribly torturous things to me at times. I didn't really have a choice.

The most important people when I was a kid was my teachers. In true aspie fashion, I related well with adults, and not so well with kids my age. This makes things complicated, fast, unfortunately.

In my opinion, it's actually pretty sad that a kid and an adult can't be friends without there having to be "more to the story" or something. And because most people think that, they are MORE than willing to put their own spin, judgement, assumptions, and opinions on it. Other kids are just as bad, if not worse. And unfortunately, aspies are typically the kind of people who want to believe you at your word. And, since we tend to be naive, we also will believe what you tell us about certain things, much to our detriment.

We are a society who is squeamish about sex, or romantic relations of any kind. We are greatly uncomfortable with a kid who self pleasures, we balk at curious questions that our tweens might ask as they are growing up and hearing or reading things, and we panic at the thought that our teens might actually be doing things at their age, even though for the most part we do little to nothing to actually stop or properly educate kids to avoid doing these things. We leave them to their own devices (literally, smartphones are the quickest and easiest way to material kids shouldnt be seeing) and we don't think we have to do the work of preventing kids from doing things. We make excuses like "They're going to do it no matter what we say...." instead of even trying.

We make a big deal when a girl and a boy are friends at ages where they aren't even close to knowing or caring what it even means. Saying your 2 year old has a "boyfriend" or "girlfriend" is not exactly the healthiest thing to say, and will set them up for the confusion that they can't be friends with someone without it HAVING to be romantic. We are putting adult content on simple friendships at ages where they haven't even realized that they will even do those things when they get older, at ages where little girls and boys still want to grow up and marry dad or mom! 

So the minute that an adult thinks from their adult perspective that something they see is a romantic or sexual attraction, we panic and we put labels and our own opinionated judgements on it.

I know I've heard people who were called fat over and over say that the hard part is that once you hear that over and over, you actually start to believe it.

I wouldn't say that is any different with romantic relationships, or, as my topic is heading, "assumed" romantic relationships.

I know I've written before about my "crush" on a teacher in high school, and unfortunately for that guy it was 6 years of madness. The longer I think about things, and examine them in my mind, flashbacks come to me. Seriously, the brain is amazing. I remember talking about him in such and such a way, how his class was exciting and fun or something, and a friend telling me "Oooh you loooooooove him!!" and a "light bulb" went on, and I believed her.

I'm not making this stuff up. And for 6 years to follow, thanks to her, I was repeatedly told, tortured, teased and laughed at for being "teachers pet" (but not enough to give me that in senior superlatives) and "loving" this poor guy. To me he took it very well, and even in senior year, he was merciful enough to tell me I wasn't the first girl to go crazy, there were others with other teachers and everything. I felt he was protective of me, he must have realized how naive I really was and I actually hope he didn't take me too seriously. A counselor once told me he wished it would all just go away, but that didn't make sense in the light of the fact that I could ignore him (most often because some other adult made me feel guilty about the whole thing) and he would still treat me the same way.

Now that I'm an adult, became diagnosed, started following Tony Attwood, and ran across this all important video that I have posted about before, that literally, and I'm not kidding you, LITERALLY changed and rocked my world, right to the core. Starting at minute 5:40 or so, I'll try to write up the words here because they are so critically important, not just for me to explain to you, but for myself as well.

"..We've had a lot of discussion on the difference between special interest friends and intimate friends and how from the outside an NT, looking at a relationship between an aspergian and an NT that could look like as if it's intimate is actually nothing more than a special friendship. One example would be a professor and a student, where the student to some degree looks like he or she is idolizing a professor, but it's a very platonic thing."

T.A. "It is, but those with aspergers might idolize intellect, not physique. In other words, they're not necessarily having a crush, in terms of wanting a sexual relationship, they're admiring the intellect of that person. Another component is the tendencies to assume that people are sexually orientated. Many people with aspergers are what I call asexual, they're not interested in a sexual relationship with someone. They're interested in an intellectual relationship and may be very enthusiastic and for that, but people will project onto that person, that their motives are sexual. 'NO! It's the brain I'm interested in, it's the ideas that I'm interested in, not physical.'"

"That frames up her question nicely. She's wondering how to protect these people that are involved in this non romantic special interest relationship. So it is in her best interest to say 'This is my sister the student, she is not looking at him as a sexual object, she is admiring his intellect."

T.A. "Oh, absolutely. And in aspergers intellect can be one of the most important, if not THE most important, personality characteristics that you admire in people. So it's the intellect I'm interested in, not that person in terms of a sexual relationship. And in fact, the person with aspergers is then horrified, that people would, 'But no! I'm interested in his ideas, I'm interested in what he says because it's so fascinating.' But the degree of passion for the ideas is assumed to be a sensual/sexual passion. But it's an intellectual passion. Now, I don't know whether you're allowed to do this, but I would say it creates an intellectual orgasm. Whether you can actually put this on youtube, or whether, I don't know. But that intellectual orgasm is so enjoyable it's better than an interpersonal orgasm."

"Well, okay, is that something that we try to explain to other NTs?"

T.A. "Yes, because otherwise they'll misinterpret. The person whos the focus of this usually recognizes its not sexual, it's not sensual, because they just sense that it's the mind that's being explored. And other people think 'Oh with that degree of adulation, there must be a hidden agenda, she's doing this so she can appeal to that person to get higher grades, to use a bit of the sort of strategies that could be used to tempt someone', and that's not their intention."

"Why are we as NTs sometimes so disgusting in the conclusions we draw?"

"Because we're looking at ourselves and what we would do in that situation, and realize there can be completely different motives."

That was a lot of work, but so important.

I can see almost every piece of that fits into the situation in which I found myself. I wish someone had had the knowledge in which to explain that to me, to him, back then. I wish someone had had enough of an ability to diagnose me with aspergers! Give me some answers, give me some reasons, give me some explanation for so many things.

But, even though this was above and beyond one of the greatest times of my life, it was, at the same time, one of the most confusing.

He is absolutely brilliant. He knew what he was teaching, he didn't just read it out of some book. And he loved it and made me love it, which is great because now I love Biblical history too! 

I wasn't horrified at the suggestion that it was romantic because I didn't know any better. I believed what I was told, because that's what happens to naive people in school where you honestly sense you aren't as "street smart" as everyone else, so you believe what they are projecting onto you, your friendships/relationships, and your life. And to hear Tony Attwood say "The person who's the focus of this usually recognizes its not sexual, it's not sensual, because they just sense that it's the mind that's being explored." is amazing, because like I said, he never treated me differently, no matter what I was told by other adults, no matter what it seemed like. It's almost like he knew and understood what it was, but didn't really have the words or explanation for it himself, so it must be what everyone is saying... maybe they even projected onto him what it was, because no one had the words, insight, knowledge or sense to see it any other way. Though, parts of me hesitate to assume he thought anything, I'm just thinking of it from my angle both as the student involved and the adult looking back with more wisdom and just plain knowledge than I had back then.

And the only reason I'm bringing this all back up is because it comes up from time to time. I am doing some different things - counseling/life coaching style things - and a phone group discussion I was faced with "other people's projections" as someone who apparently knows me made the comment of how they were "afraid for me" during that time.

Afraid of what, exactly? That's what I would like to know.

And unfortunately, as I think about it and roll it around in my head (because that's what I do with everything in my life), I realize with a sinking feeling in my stomach that every single person who knew, every single person who was around in my life back then, every single person in the school, they all knew, and they all projected onto me their assumptions of what was going on. And further, they talked about me behind my back, whether to him or not, I may never know. And they haven't forgotten, and they still think of me on those terms. They were worried. I don't know if they were worried I'd get hurt, or if they were worried I would embarrass myself, or if they were worried that I would come on to him, or do something inappropriate, I don't know what they were worried about. I was a rule following, card carrying perfectionist, but I would break ranks to come on to a teacher because, in their eyes, I was in love.

And, even if I were in love with him, even when I believed it was true, I followed the rules. I knew what was right and wrong, and I don't think that I would have ever done anything that I would have viewed as crossing the line. I knew and understood there was a line. Others made no mistake to remind me of the line as well, as if they thought they were telling me something I didn't already know.

The problem, maybe, is that what I did do they viewed as crossing some line.

As an aspie, again, I related better with adults. And that made other adults uncomfortable. They just didn't know what they didn't know.

Which brings me to my title: Nothing About Us Without Us. 

It's just good life principle to not make assumptions about other people's intentions, motives, thoughts, words, actions, without first checking with them, and clarifying if necessary ("I hear you saying ______, is that right?)
How much difference would it have made, in both my life back then, and as a whole, if someone had just asked me what my intentions were, what I liked him for? And maybe I wouldn't have had the words to tell them either. But I still feel there would have been a drastic, clear difference between someone who literally wanted to get him into bed with him, and me who just wanted to pick his brain, have deep conversations about things that mattered, and learn from him! It should have been obvious to any logical adult, but I guess they had already made their minds up what it was, and didn't think it was necessary to ask

I think everyone who reads this needs to be aware of this human tendency to make assumptions instead of asking. We need to not talk about people as if they are unable to be a part of the conversation, whether autistic or NT. I don't care if they are nonverbal, we need to stop putting words into the mouths of others, our thoughts into their brains, our motives into their motives. From kids to adults, disability or not, we need to make no judgements on people, and allow everyone the benefit of the doubt. For the most part, I believe that most humans are just trying to do the best they know how. Obviously there are exceptions to that, and that's too bad. But we shouldn't let those exceptions be the rule for all people, especially not people we know, especially not our friends. And even more critical to teach those things to kids, so they don't have to be adults who have to change.

Nothing about ANYONE, without THEM. Let the subject of the rumor have the voice. Don't be afraid to ask people, using discretion to privacy when possible or necessary. Catch yourself when you are starting to make judgements about someone's intentions (yes, I did catch my own judgements above, I don't really have the ability to go back and ask every single one of those people what they think anymore - I'm talking when you do it in your present life, with your current relationships.) And stop others from doing it. Give people the benefit of the doubt. Give people the other side of the coin. Be the one who says "Well, maybe it's not like you say."

You might just change someone's world that way.

Special VS Intimate Friends and Autism Part 2

So, I'm going to touch on another bit of comments on this video clip. Please watch the video before reading. 

Start watching this video at minute 5:40 through the end of the video, around 4 minutes of content.

"Ask Dr. Tony"

So far, I think that I have kinda covered the fact that I was indeed interested in intellect, and not physique. It made me feel so good to be connected to these people who just increased my love for learning and the enthusiasm they had just inspired and attracted me to them (and the subject, to be honest).

So this time, I will speak on the next thing the video mentioned, and that is projection.

First of all, I think that this is very true for ALL children, but we project our adult understanding of life onto them far too early and far too often. What I mean by that is it seems like as soon as kids start interacting with other children, we seem to pressure them into this whole "is she your ____friend?" kind of teasing! These kids are still discovering friendship, and we are already pressing adult situations on them? And this only gets worse as they get older, we tease and we poke fun and we have to start having "dates", or something. I don't know what age this really starts in this country, and a part of me doesn't want to know because I would probably be horrified at it being the age my son is or something.

But the fact is that we are pushing our adult relationship understanding onto children who are just barely making friends and working that whole social situation out.

Now, we have to go back to our focus on aspies or autistics. First, we have a rough social life. We have a hard time with the way that the world works, socially, so we likely don't have huge social circles or friendships. It's likely we are already being teased for this difference, or that difference. I believe that kids who are teased by their own parents will tease other kids in likewise, so those kids who's parents are teasing about ____friends will likely also put that teasing pressure on each other, autistic or not, even those people who are not friends.

Second, I feel that autistics have a huge amount of naivety in life. We "don't get it" when we are picked on sometimes because we think that they must not mean it that way, no one would mean to do that, right? We tend to believe people when they say things, we don't "get" the idea of sarcasm most of the time (unless we know the person really well, sometimes not even then). So when someone tells you that the sky is pink, you might start believing them because others, especially adults, must know better than we do, so they must know what they're saying, right? Why would they lie about things? What would they stand to gain?

So when someone tells you that you're in love with someone, you believe they must know what they're talking about. Especially for someone of 12-13 years old, you've lived a while and realized that you have certain weaknesses when it comes to social or friendship relating, so you do tend to trust others, especially if they're your (so called) friends. You don't spend a lot of time telling yourself that they must be wrong - you're the one with the social weakness, they must know what they are talking about because they don't seem to have that problem. After all, you've never experienced love like this before, so you don't really have an idea of what to compare it to. They've had ____friends, so they must know what they're saying right? 

So, people project their opinions, or assumptions, on others. They do it to NT kids, and they do it to autistic kids. Though all kids are likely to believe what is being projected onto them, I think that autistics are especially prone to this because they are already socially vulnerable. Even when it's coming from people who are not kind to us, and who are being mean, we still might believe it because they must know what they're talking about, they don't seem to struggle socially!

I think we have to be careful what we project on our kids. I think kids are far more innocent in their intentions than we think they are. I think kids get pushed into things far before they are ready. I think that this makes them uncomfortable and insecure, and can cause a lot of problems as they grow up. Kids need to just be kids! And kids with autism, diagnosed or not, need to not have to feel pressured into a box of "this is how you feel" - let them define their own experience. 

I have been thinking back about this quite a bit and I think that it all started with me saying that I really liked him a lot. Though that may be NT language for a crush, romantic love or whatever, I don't think that was what I meant. The more I try to redefine what I felt into this kind of intense intellectual interest, the more things just click. 

Someone who knows me from that time might think that I'm just trying to "excuse" my behavior, or deny the past. That isn't it at all. All through this blog and this journey, I'm trying to understand myself through what I am: autistic. I'm trying to make sense of my world, past present and future. Sometimes that means that I redefine what I felt, or experienced, through the autistic lens. All the things that I couldn't make sense of from my childhood makes sense now through the lens of aspergers. This topic is one of the biggest revelations I have made about myself to date. I'm sure there are many other things I have yet to discover, and I am finding this quite fun to see myself in a new light. 

Here comes my echolalia: "I'm not Josie Grossy anymore!"
Because that's kinda how I feel. I wasn't a freak! There is a reason for this or that, and it isn't what it seemed to be!

Special VS Intimate Friends and Autism Part 1

(I apologize for stealing the title from THIS youtube video.)

In order to better understand what I'm talking about, start watching this video at minute 5:40 through the end of the video, around 4 minutes of content. Please, don't skip this part.

Okay. Today I think that I have a bit of time here to go into some discussion on this little piece of info that has, quite literally, rocked my world. The fact that the video went into such detail, specifying a teacher/student relationship, really went directly after my specific life experience! This has completely changed how I think about myself, about my childhood, and about the people I fixated on in those years. It makes me wish I had known this then, and had the tools to share this information with them. Who knows, maybe they're out there reading my blog without my knowledge. Either way, I realize now that I am not the only person who has been here in this situation, and I feel honored to be able to write about it from my deeply personal perspective and experience! And perhaps this is my place to write about it, because a quick google search only resulting in showing me a couple of places to find this video, and not much else! Apparently, few people have written about this. 

As far back as I can remember, I have always had some form of fixation on certain people. Of course, all kids at one point or another have crushes on people, and that can range from peers to teachers, and this is usually quite normal for some children. I feel that it is important to some children, in order to feel safe in school, that they bond with the staff. Whether that comes from my life experience or if its normal, I don't know for sure, but I suspect it can be quite normal.

However, my feelings for some of my teachers were rather intense. Unfortunately, the world is very quick to jump in and tell you that what you're feeling is a crush, a fancy, sensual admiration and love. Movies, stories, and even peers confirm that this is what it is you are feeling. The minute your peers catch wind of your admiration, they are rather quick to start the teasing. It can start with defending the teacher from the normal complaining kids do about something the teacher did, or a simple comment of like or admiration. In my case, I have no idea where it started, I don't know what I said or did, but my guess is that I am not very good at hiding my feelings, so it was probably something they could read in me that I wasn't even really aware I was showing so openly. 

When everyone around you is telling you what it is you're feeling, and you already have struggles naming or recognizing emotions as is normal in autism, then you are likely to believe those things being said. Everyone must know what they're talking about, right? Of course, being an avid reader of stories like Babysitters Club and Sweet Valley High/University, the world reaffirms the judgement that what you're feeling is that romantic, passionate feeling described in books and movies, and your peers are not shy at all in teasing you that you must be in love, according to their rules and judgements. Don't get me started on the over romanticized opinions on love and relationships that the world constantly spreads!

However, aspergers and autism should be held separately from those conventional and "normal" social rules and judgements, because our brains are different, and work differently. We see the whole thing differently. The rules on normal relationships don't apply in the same way to autistics.

Probably my most significant and longest lasting fixation began in high school, somewhere in the 7th or 8th grade. I can literally picture in my mind the look on his face during our 6th grade orientation! Photographic memory leaves me with a lot of those memories. From day one it seemed as if I noticed or clung to something about him that I found special and unique. This teacher made history so easy to become fascinated with. You could literally FEEL the way he loved what he taught, and how much he loved teaching and watching kids learn. The only way to make a subject not feel like work is to make it feel like fun, which he was very skilled at doing. He made me feel excited about learning history, and excited about the stories and events in our past. (This carries over to my love of history as an adult, which greatly encouraged my Biblical history studies! I love piecing that together!) 

Through all the 6 years of upper grades (small town, k-12 in one building, 7-12 is upper grades/high school to us!), he also made me feel valued, important, capable, safe, and protected! He (and my other teachers, to be honest) made me feel like an equal. Being the tortured outsider, I needed someone on my team, someone to protect me and give me somewhere to go without hesitation when I needed to. I even received a few serious threats in school, though I barely remember the first (I don't think I realized the severity, or I was too naive to think it would actually happen), the second was when I was a senior and he took me seriously and was there for me when I needed someone to be. How could I not admire someone who stood by me when everyone else was throwing stones, including some of my 'friends' at times? 

Let me tell you, this guy was no hottie. In the video, Tony says we may idolize intellect, not physique. This is TOTALLY true. Though for me, I have seen the most beautiful people in those who are either self critical or others are critical of in appearance. Appearances have no weight on my attraction to people, but there is an inner glow to people who's intellect I admire.

What I loved about this man, and others, so much is their energy, their passion, their drive for learning or teaching. In another case in college, I was in love with a passion for music and creativity and art and creating a fleeting moment of poetry and music that is once created and quickly gone. Deeply in love with the creativity and the passion they had for life and the way that they shared that passion with me. Deeply in love with learning about them or about what they taught me. 

As Tony says in the video, I experienced time and time again the euphoria of an intellectual orgasm. Naturally, you normal people reading this are going to feel grossed out that I just said that. But this isn't the sexual way at all! Not even a little bit. Just as women experiencing birth orgasm isn't the same as intellectual orgasm and that isn't the same as sexual orgasm. It is an explosion of feelings, of such utter happiness in life and learning and a stimulation of the brain that causes feelings of happiness. I desire those moments of deep conversation and talking about things that matter. Sometimes I just long for it so much with this person or that person, but I have to tell myself that not every conversation is intended or able to be deep and passionate and stimulating. Unfortunately, people just don't have time, and to be honest, with kids who ever gets the chance to talk about intense things anymore?

The people who have made me feel  this way are people I want to be around all the time. There is an intensity of connection and emotion that I truly can't resist. Though, because of the complication of the NT perspective and living my whole life thinking I was such an idiot for the things I said and did, things have been awkward whenever I see them, though my heart still jumps and desires that connection. It feels almost like I'm a battery of sorts, and to be with people who inspire me and attract me intellectually make me feel like I've just been plugged into a power source. I don't know what to say or do anymore when I see these people because in the past I was told what I was feeling or experiencing, and now I have even less clue what to say or do than I did then. I've become guarded and afraid.

It has in the past upset me to have the balance interrupted with other relationships and people coming in and out of the picture of me and the subject of that kind of attraction. All it takes is seeing them on the road, on the street, in a store, and my heart feels a jump start. You all would say that this is some kind of love, an infidelity of sorts as I am married! But it isn't like that at all. I miss those people, and those kinds of conversations that made me feel deep and passionate. This doesn't mean to say my husband doesn't stimulate me intellectually, but just overall it doesn't happen as much as I feel I need, and this isn't about specific people I choose to feel this way with, it's just a feeling of connection and intensity that I don't exactly control. 

I may have mentioned before that my level of interest  in friendships usually turns people off and pushes them away. I'm willing to bet that this is where my intensity is coming from. I'm longing for and looking for the intensity and the passion and the connection of this intellectual stimulation that makes me feel so good. I can't explain it, really, and I'm still processing and examining my life through this new information that I've learned from this video, and I haven't even touched on all the content in it yet. I will continue to keep opening up the information and trying to explain it from my experience and my point of view, in hopes to both find out more about myself, but also to be the voice out there talking about this. I'm pretty transparent, and I'm about to become even more transparent.

I love aspergers! Seriously, autism is the best thing that ever happened to me. How would I ever be learning this about myself without autism? I'm relieved that there are more people out there like me who also feel this way. I'm not alone. I'm not the freak everyone thought I was, or even the one I thought I was.

Expect many more posts on this in the future. Ask me anything.