My dad challenged me the other day to start putting more of my story in the blog. I had been purposefully focusing mostly on Anna's recovery and frankly avoiding mentioning much of mine. Mine is so much more lengthy (more history to it) and still full of uncomfortable feelings and failures as I find my way out of it and gain footing on this new ground of normal. I am confident for example that I lost most of my recent volunteers because of overwhelming them with information in classic Aspergerian style. I have changed the training by taking giant strides in prioritizing/ summarizing large amounts of information (something I like others with Asperger's have struggled with). It's less flattering to talk about successes for me because they nearly always follow unflattering and unpleasant failures such as in this example. But since what makes our story unique is our both progressing together I've committed to posting about myself much more often no matter how it exposes things I might wish didn't happen for all the world and myself to relive.
I just now recognize their roots in Asperger's and then use what I learned at the Option Institute/Son-Rise Program to decode and address and make progress on them. Interacting with people is now surprisingly (to me anyway) easy and pleasant and mostly "successful" according to my objectives of the interaction since I went to the Option Institute / Son-Rise Program and have used their dialogues and consults.
This is in stark contrast to the old pre-Option/Son-Rise pattern of my objectives mostly failing when it came to interacting with most people. By this I mean I might now decide I'd like to get to know someone to befriend them and have a meaningful taste of who they are as a person, enjoy their perspective, and begin the process of friendship, and I just dive right in and accomplish this almost 100% of the time, whereas I used to fail nearly 100% of the time in the past. These are a testament to my new skills.
But before started this recovery from Asperger's, I used to spend lots of time filled with anxiety before deciding whether or not to approach another person for anything (every time!), then handle the interaction very awkwardly and watch it unfold "badly" with horror, as that person would make squinting faces like "What? I'm having trouble figuring out what are you saying. Why would you be saying that? There is something wrong with this and with you." You could make out these thoughts watching someone in a foreign language or pantomiming it, they're universal, it's what you see when someone is talking to a crazy person as they are figuring out there is something "special" or "off" about them. Like an out-of-body experience, I watched these interactions unfold and felt escalating embarrassment about the whole thing and increasingly wanted out of the interaction, which at this point so did the other person. I might get some point across, like what I wanted from them, but knew they wanted no part of interacting beyond that after that. It was pretty much guaranteed the interaction would unfold that way.
Normal people who are reading this, I want you to imagine right now how that would feel, and how your life would have unfolded differently if that's how it always went, both by how you would have chosen differently and how many opportunities others would not have given you if you had been like that. That's the life I had and I did not like living in it.
While I could "fake it" well with situations I know super well and language I knew well and was super prepared for, because the script was very well developed, like going to a restaurant has a certain pattern. So did family events around holidays, or interviews for college, or doing well in class. There I could ace things. But in cases where there was no script, like at a party, I just avoided those because I just didn't know what to do with myself. But even in a situation where people would act and talk somewhat predictably, there was that inevitable moment - perhaps not early on but eventually - when something happened well off the script and that person realized that there was something different or wrong about me they couldn't put their finger quite on (neither could I until recently). I always dreaded and waited for that moment and it always came. Once the secret was out and it was time to move on to another unsuspecting person, as if looking for the unicorn, the person who would feel comfortable around me and vice versa. (They did exist but were extraordinarily rare.)
Again, normal people out there who are reading this, I want you to imagine that interactions with other people always came with the scheme mentioned in the paragraph above - sticking to situations where interactions are heavily predictable - like a class room - and avoiding those where people just being themselves like at parties or just in a group enjoying each other or some event where you felt freaked out and just lost at to what to do. Always checking your script for what someone would/should say or do if they were normal (not you!) and waiting for the inevitable screw up that would end that "friendship" based on such shakey ground.
I'm sure more normal people would instantly recognize that situation I described and say, "Hey, no big deal, that happens to me a lot". Of course, challenges "high functioning" autistic persons face are very similar to normal people, its just the pervasiveness and severeness that make it a syndrome - like a cage you're always looking out of from behind bars - and not just a regular person on a bad day or with some handful of situations they don't like. Also, it may be a factor that normal people can and have shared extensively with one another over years and epochs of their lives so what seems extraordinarily strange and isolated to someone like me may be common but since I've been so socially isolated it seems more unique and worse to me and others like me.
Regardless of which it is the outcome is the same: a person who is very socially uncomfortable, acts or speaks unusually, then gets nearly universal undesired and unsatisfying results from that social interaction, a cycle that never seems to end. The difference between most normal people and me is that the little drama I described between me and other people was nearly 100% of the time, and that's NOT exaggerated. That meant I was uncomfortable approaching or interacting with people in my class, people I worked with, neighbors, family gatherings, people at church, people I ran encountered anywhere and anywhen (a new word I made up!) I was. Normal people might feel distance from people at work but not a the gym, with some people at church but not all of them, with some neighbors but not with others. And among the ones normal people like you enjoyed, you didn't feel you had to be on a script, you could just be you, whereas the few people I was least uncomfortable with I still had to use a script (not be myself or say what I was thinking) to be at all understood. I was feeling uncomfortable and frankly fearful of interaction with people always, like stain I could never remove.
It's exhausting to live that way.
People with Asperger's like me usually end up giving up and choosing to tout and cling to their generally high smarts (of a limited type - more on this later) like it's the most important thing in the world (not an exaggeration), deride / ridicule others who don't have it as much, and isolate themselves in various intellectual ghettos where their severe short-comings normal people beat the at are less damaging. Like me they end up choosing careers or jobs that don't depend as much on interpersonal skills, humor, and other things Aspergerians lack, such as organizational skills (in space and in time), flexibility, and others so they can botch those a lot and still not get fired too quickl.
I put myself in a career ghetto and avoided things for social anxiety and dysfunction reasons, but never lost the desire to connect with and be myself the way I had been able to with my grandmother. Many people "lightly" on the spectrum like me who had poor attachment to people (not having my strong connection to anyone like my grandmother, for example) just do away with any interest in liking or loving other people, and fall in love with their intellectual delights and obsessions and are often very impressive in what they accumulate there. They are often openly hostile to people they usually condescendingly call "normals" and have no interest in having meaningful connections to them or understanding them.
But make no mistake about it, interpersonal skills is just the shallow tip of the iceberg of what is different or missing when you're on the spectrum. If you pick an intellectually challenging field where you can beat out most normal people with your mental skills but annoying or alienating people off will generally not cost you your living, stay on it without changing, and don't try to do anything much that would require skills people on the autism spectrum are weak at you could look "successful". But you know that you can't go off that path - it's again like a fence you know you can't survive outside of. You are a prisoner and you know it. I did anyway. People with autism spectrum have many skills that can't be assembled in the proper timing, amounts, brought to bear in the right situations, flex around obstacles and find opportunities, find a balance of focus and openness and more. It means you can't succeed at what you want to do in life and it's crippling.
My husband used to often say I was like a person in a wheel chair but it's like a wheel chair you couldn't see, and that people would be more sympathetic to me if they could see my wheel chair. Well now the world can, it's called autism.
Since I've been going to Son-Rise Program and Option Institute classes I've been bringing my life into focus, feeling like I can be myself nearly all the time with no script, and feel like I'm awakening as if from a dream or a coma (or just from being drunk) in my 40's wondering how I could have been living how I've been living all these years. I built a life where I could avoid all the difficulties and repeated failures I've described in preceding paragraphs - an isolated stay-at-home mother, in a super-closed household (essentially no visitors), with a husband constantly at work (not around much), home schooling, essentially socially disconnected (not regularly attending any organizational meetings, church or anything else), essentially no friends, and having entirely dropped my professional side and career prospects where I was underperforming in classical Aspergerian style. I had almost giving up having goals at all, but still not enjoying myself, which if often a trade-off normal people made but I was too uneasy about too much for that to happen (people with Asperger's are typically more anxious that normal people, and it can make it impossible to relax). It was just no goals AND no fun! Yuck!
In contrast I am now voracious for meeting and interacting with new people, very excited about and seeing opportunities to create companies or do projects that could generate careers for myself which I'd love to do and feel like "me", have volunteers coming to my house 7 days a week to work with my daughter, and now notice I'm often the most socially comfortable and ambitious person in the room at any given time. Where set backs or blocked paths used to send me into weeks or months of depression or unhappiness - my adult form of the autistic child tantrum which is super severe because it seems there are no other paths (normal people see more branches to any path they're on and reroute easier) - I can usually find alternatives much sooner or cope with the changes easier.
But this is like turning a ship. I have gotten up such speed and gone so long in the isolated Asperger direction, but not happily, that while I strongly want such a different life vision it's so many things to change in so little time. Every room in my house has decades of decisions made while from that perspectives. I've spent over a year finding messes of accumulated papers, clothing, way too many toys, and other things, unloading things I was holding onto or hoarding really unnecessarily, deciding on things I was avoiding deciding on for months or years, etc.
Other people spent the last 2 decades moving along in their chosen jobs and careers, friendships, associations, goals, even if slowly, they're 20 years ahead of me in experience, earnings, friendships, etc. where I am trying to retool and gear up for various things I've envisioned doing since being reborn and re-inventing myself at the Option Institute and Son-Rise program.
It's such a long road. It's so easy to get over-whelmed with the sheer amount of work required in so many areas to reconstruct my life in accordance with what I want (and love) now. It's often I look wistfully at decades on meaningless (to me now) activities that were used to fill the time because I wasn't ever socially successful. I remember not going to law school because I couldn't imagine being in a courtroom in front of so many people, and not going to medical school in part because I didn't want to be in that one-on-one interaction with patients. I actually got into Johns Hopkins Medical School (arguably the #1 medical school in America) and a handful of other top medical schools and opted not to go substantially for this reason.
What could I be doing with my skills now rather than mowing our lawn, washing laundry, washing dishes, and vacuuming out our car today? It wasn't as painful to make this contrast before I was able to actually easily envision doing the alternatives I would have done if I had found my way to the Option Institute / Son-Rise Program 20 years ago.
And this is just the beginning of it. I didn't do nearly anything socially that normal teenagers do, like I can remember only going with friends to a movie once at any time before college (I hope I remember this wrong but unfortunately I have a really good memory, so it's most likely accurate). Other than prom I don't think I went to a single party. I didn't date anyone except 2 times I went out with someone who was just a friend (it didn't help this was an all-girl's school I was put in). I had no friends outside of school (and the ones from school were only friends AT school; they had not come to my house at all that I can remember, except a handful of team assignments /partner assignments we had to do together for school projects (purely social visits stopped by middle school). I worked at my school work and took on all the extra school related projects and roles I could (like playing sports, writing songs and skits for inter-grade competitions, etc.), ran with my dog long distances every day, and that was basically it. Sure I'd get taken with my parents to events they'd attend or holiday parties, or on vacation, but still felt weirdly disconnected and like I was always acting in a play (faking it) with the normal people. I don't remember just "hanging out" and enjoying other people, hardly ever.
I remember discussing with Raun Kaufman, the original Son-Rise child, what normal people do with each other when they aren't acting a part (like me) or working on something like a project together, and since he's totally recovered he was able to describe it to me rather well, having done it like normal people but also understanding how to explain it to people like me. That was the first conversation when I learned that I could be comfortable with silences and began the process of pulling back the wall of words and ideas I used to erect between myself and other people so they wouldn't see me as much (but had the effect of them seeing me as abnormal even more, perhaps).
There is so much more to this story of change, like falling in love with eye contact (which happened during the Son-Rise Start-Up Program) and more, but it's so many changes and such a long story I'll stop here for the night. Thanks for reading, all those who made it that far! Hope it was worth your effort and time.
Today's photo is of the first child to completely recover using the Son-Rise Program, Raun Kaufman, and me (Barbara) in my home in Texas. He was at my home because I was offered the extraordinary opportunity for him to do an "outreach" with us, where one of the instructors from the Son-Rise Program comes to your home to help train you and your team. He was the first person I remember in my adulthood that listened to one of my Aspergerian-style 40-minute one-sided discussions about myself, with no pause for him to say anything, and when I looked over I didn't see a person bored, annoyed, looking at the clock or rolling their eyes (which was the usual) but instead someone totally focused on me, who had followed with me and was totally engaged and interested in helping me understand me. It was a life-changing moment! One of many that would follow.