I am not responsible for the results of your assumptions about me based on what youthink I mean when I say something, or look a certain way. In order to shake up a few of those assumptions before they cause trouble, I have made this page.
Let’s Play Assumption Ping-Pong is a good place to start. It deals with assumptions about my communication abilities over the years, and a little bit of assumptions about institutionalization and functioning level labels. I’m going to include more information on those and some other things on this page just in case your brain wants to stereotype me in some other area.
It’s been my experience that when people make assumptions, they think I’ve said something, then they get very angry when they find out anything that contradicts that. But they don’t get angry at their assumptions, they get angry at me. Please bear in mind that it is impossible for me to describe every aspect of my life simultaneously, and that describing one aspect is describing one aspect, at one point in time, and possibly incompletely.
Functioning Labels
When I write long things, that is not a statement that I am “high functioning”. When I appear somewhere, that is not a statement that I am “low functioning” (in fact, my appearace is not a claim of anything — it’s just my appearance, it’s like calling my hair color a claim to anything in particular). If you make an assumption based on one ability or another, about my other abilities, you will be wrong.
I can write long essays some of the time, sometimes can’t write anything at all, I have little to no communicative speech (see the original ping-pong post for more on the history there), I cannot cook ordinary food to save my life (and I’ve been in positions where I’d have to), I can bake a mean Swedish Tea Ring, I’m good at badminton and ping-pong, awful at many ball sports with large balls that require something other than triggered movement, mediocre at flute, a good singer, bad at a lot of self-care and everyday household stuff, great at things that are automatic or triggered, not usually so great (sometimes totally incapable) at things that are voluntary even if they’re the exact same things I do so well automatically, horrible at learning in classrooms, great at learning certain things on my own, and in general you have to have known me for a long time before you know what I can and can’t do at any given point. It’d do you well not to assign me a single, static, functioning level in any area, or to give me any sort of broad functioning level label as if one skill encompasses all the others.
And the way I come at a lot of these abilities, is not how you’d expect necessarily either, so I can do some things without what you might consider prerequisites to being able to do them, and can’t do other things despite appearing to have all the prerequisites.
Nor is it a good idea to assume this hasn’t changed through time. My set of abilities right now is not my set of abilities at 5, which is not my set of abilities at 10, which is not my set of abilities at 15, which is not my set of abilities at 20. I’ve lost some abilities, and gained some abilities, and had some come and go and come and go. I’ve learned and forgotten and learned and forgotten a whole lot of things over and over again. (I was also, to continue the hair analogy, born as far as I can tell with brown hair, which turned blonde for awhile, and then darkened gradually over the years to a brown so dark it looks black sometimes, passing through a few odd shades of reddish-brown on the way. This doesn’t mean I dyed it brown, or that the shifting around is volitional in some way.)
The only official functioning label I got was low-functioning, and I was as shocked as anyone when I read it in my file. This doesn’t mean I claim that label, or its opposite, but I’m likely to mention it — as an official label only, along with a lot of other words I either heard said about me or saw written on paper or found in recorded answering machine messages years later — as something that has been said about me, because it’s said about other people too, and I don’t tend to agree with it as a marker for someone’s future or even their present.
If you ever think, or hear someone claim, that by describing a certain set of abilities at a certain point in time, or looking a certain way, or thinking I look a certain way, I am claiming to be either mildly or severely autistic, think again.
“Placements”
Yes, I was in institutions and special ed. No, not throughout my entire childhood. In childhood I was in regular schools, a combination of public and private, and even went to college early. It was only after a few months of high school and then an attempt at college that I ended up in institutions and then special ed. And yes, in regular school people realized something was definitely up with me, but nobody really knew what.
When my abilities started shifting around right around puberty, school started becoming more and more incomprehensible (including sitting there and not understanding a word of language around me). Because I was thought to be bright, the assumption was that I was bored and acting out from boredom, rather than uncomprehending, so I was accelerated. It was only when I had a total breakdown from stress that anyone realized something more was up than that, although I’d noticed long before (but been unable to articulate anything, so I’d done all the things that had gotten me labeled “bored” instead, as an attempt to regulate the stress and overload). (For reference, the reason I don’t give specific place-names is because some of the bullies never stopped being bullies, and some of my medical records actually contain instructions to avoid people from some of these schools because of the extent to which people from some of them deliberately messed with my head and encouraged me to behave in “pathological” ways for their collective amusement. Some people have changed since then and admitted what they did was wrong. Others seem to have remained stuck the way they were back then, which seems sad to me because it’s been a long time.)
Institutions (of various sorts, and certainly not just one) happened at that point, and “in” was the same as “out” to me a lot of the time (since “out” was mostly confinement at home), but it gradually became more and more “in” as I realized I could not fit their criteria for “out”, which seemed to be becoming “normal,” which I was fully aware I couldn’t do (but which some other people held out “hope” for, while others wanted to write me off entirely, and those were seen as the two only choices).
I was “transitioned” out of institutions so gradually that I’m not sure where the dividing line is. I lived in two cities for awhile so that I could still go to one of them, and then I was in a weird combination of special ed and day programs after that that ensured that I was pretty much as segregated as I’d been on the inside, only with longer driving distances. Then I was out of special ed but still in the day programs, and then I was out of all of them but simultaneously didn’t realize I was out or that I’d ever been in. If that doesn’t make sense, I mean I still had all the same reaction patterns from when I’d been on the inside, but I did not believe I’d ever been institutionalized because the threat to send me indefinitely to the state hospital (which was the only place I thought was an institution) had never materialized. A man at a Center for Independent Living set me straight on that one when I was 19.
Diagnosis
I’m diagnosed as autistic. I was initially diagnosed as autistic in 1995. Because of a number of other things (seizures, personal distress, echolalia, things people had insisted were true about me and got me to repeat, statements made under duress, doctors who still believed autism was a “childhood psychosis”, confusion about how I communicated, an active fantasy life that both appeared and disappeared later than it does in most children, prescription drug side-effects including paradoxical effects, developmental delays in understanding certain things about the world, some fairly uneducated guesses I’d made about how things worked based on reading a lot of fairy tales, etc) I was diagnosed and often made to play along with a number of other things, mostly after that diagnosis. Those include bipolar, schizoid personality disorder, dissociative disorder NOS, psychotic disorder NOS, depressive disorder NOS, adjustment disorder, developmental disorder NOS, schizophrenia, schizoaffective disorder, cyclothymia, etc. I can’t easily remember them all. Contrary to people’s opinion, it’s only unofficially that I’m ever considered to have an intellectual disability, and at the time the only label I got was that I had a severe and complex neurodevelopmental disability that included autism and a lot of other things. I did well on a test of the “wisdom of the body” and was thus labeled as having “idiot savant features”. I can remember being made to say things that went along with them, whether I understood it or not, whether I agreed with it or not. (See the initial assumption ping-pong post if that confuses you.)
This was a matter of continued survival, but it hurt. It hurt because I had a growing awareness that none of this had anything to do with my real experience of the world. I developed a belief that I was deeply evil, but I had no idea how to communicate what Iwas really experiencing. I in fact had many genuine problems going on at the time, that I had nobody to talk about because I could only use things other people created for me.
When I became an adult, and was more able to communicate my own wishes (as opposed to someone else’s wishes for me and beliefs about me), I asked to go off all of my medications under a doctor’s supervision. I did this. After an initial painful withdrawal period, I had no hallucinations, no delusions, none of the other things that had been used as an excuse to put me on heavy-duty drugs for a number of years. Some of the “symptoms” I had even turned out to have been side-effects of the drugs that disappeared as soon as I was off of them. (I was on Phenergan, a chemical relative of the neuroleptics I was on for so long, recently for nausea, and it caused hallucinations.)
After that point I have tried to live my adult life with as much communication that isabout me, not about someone else’s ideas of me as possible. It has been a gradual process of honing communication skills, gaining more self-awareness and self-confidence, and learning that some things are even possible to communicate about (I suddenly had many medical conditions treated as an adult that I had no chance to treat as a child because I couldn’t say much if anything about them). I have also attempted to say what was going on during the many years when I had no words or only other people’s words, and was considered variously non-communicative or totally out of it.
What I say now sometimes conflicts with both some other people’s opinions of me and anything I would have said (when able to say anything) at the time, but it is to the best of my memory what happened. I take this very seriously, especially since I know there must be others trapped in the same strange way I was. Anyone claiming to know better than I do what is and was happening inside my own mind probably needs their telepathy checked and should not be trusted if they insist they know better than I do.
Anyway, my doctor (who initially diagnosed me) and I looked over everything and he decided the main labels that still fit me were autism, PTSD, and CNS disorder NOS (which was used to code the gradual loss of certain abilities I’d been experiencing since a bit before he knew me and continuing to adulthood). The rest were discarded as irrelevant, and they have remained irrelevant. His initial diagnosis of autism had been an oral one to my parents, while he wrote PDD-NOS on a piece of paper for the insurance company, because at that time (as is pointed out in Unstrange Minds, the author of which has a daughter diagnosed in that same time period) autism still meant no hope and he knew I met the criteria but (unlike several other professionals at the time) didn’t want to claim I had no hope, especially since there was serious talk about putting me in an institution indefinitely instead of temporarily. He re-formalized the oral diagnosis in adulthood, now that it would not be used against me.
Changes in Self-Awareness Over Time
I used to honestly and sincerely believe that I looked totally normal. I would tell people online that I passed for normal, and I honestly believed it at the time. I am nearly incapable of seeing people stare at me (although I’ve heard “Don’t you see people are staring?” for a good chunk of my life), and I thought the assorted random comments I got calling me a “retard” and such were, well, random, or even not directed at me. I had an internal image of myself that did not totally match my external appearance, and was thus always surprised when people reacted to my external appearance.
Then I started casually saying that I could pass for normal, to people who actually had met me. Their reaction was usually stunned laughter and “You can’t be serious.” Even this didn’t sink in. It wasn’t until I was at the Community Imperative conference in California that I totally grasped the extent to which my appearance differed from most people’s. I had, without thinking of it, not really said anything all day, I’d mostly been watching things and taking them in. Once I finally typed something, several people responded as if a potted plant had suddenly said “Hello. How are you? Nice day today, isn’t it?” And that’s when it finally fully sunk in that I don’t really pass.
Thus, it’s always possible that at some point I might have said something like, “I look totally normal,” and at a later date said “I don’t look normal at all,” but nothing might have changed about my actual appearance. What’s changed is my understanding of how my appearance is perceived by non-disabled people. Similarly, as I said, I used to claim never to have been in institutions, because to me an institution was only a state institution. So don’t necessarily assume that something has changed if I appear to have changed my mind, sometimes my mind is all that’s changed.
The Drug Thing
I did experiment with drugs for a brief period of time (a few months). People thought I was on drugs already, because of the manner in which I responded to my surroundings (see above about “not appearing normal”). This led to, among other things, offers of drugs, when I was both young and gullible. Many people around me thought that I hadstopped taking drugs when I started taking them, because I had a paradoxical reaction, as many autistic people do. At any rate, I eventually realized they were a bad idea and stopped.
I have had no lasting effects of any kind. My perceptions have not appreciably changed. There was question among doctors as to whether there was a long-term effect of the drugs happening at one point, but that was discarded eventually as it became obvious from my history that I had already had unusual perceptions which were not significantly altered in any long-term way by drug use. The only drugs that did have long-term effects on me were legally prescribed neuroleptics which affected my motor skills permanently. Also note that most people who were around me at the time have done more illicit drugs than I ever have, because I actually stopped pretty fast.
The fact that I was already and continue to be neurologically atypical and atypical in my perceptions and responses to the world (as well as the fact that much of what I could say at the time was vastly misinterpretable and heavily influenced by other people) has contributed to a myth that drugs are why I am weird, but it’s a myth. I did some dumb things as a teenager, like many people did, but like many people, they did not totally alter me for life.
So if you want to get to know me…
…read what I write here, and talk to me here. We may agree, or disagree, I may be right, or wrong, change my mind, etc, but I try to be accurate to the best of my ability. And over time you’ll see me as a complex person and not a strange set of assumptions that either are or aren’t being followed, and hopefully vice versa.
Ballastexistenz 
Thanks for this and my apologies for making simplistic assumptions about you in the past. Us NTs, with our (allegedly) much vaunted superior theory of mind skills should learn to take what autistics tell us at face value. If it challenges our ideas we should change our ideas and not try to bend your words to fit our pre-conceptions.
Thanks.
I do remember reading anonymized descriptions of myself written by you, and thinking it was just as well that they were anonymized, because while I could vaguely recognize they were about me, and I could imagine them to be absolutely true of someone else, they certainly were not how I remembered things, even though I’m sure something I said gave you the impression they were true.
Because I was thought to be bright, the assumption was that I was bored and acting out from boredom, rather than uncomprehending, so I was accelerated. It was only when I had a total breakdown from stress that anyone realized something more was up than that, although I’d noticed long before (but been unable to articulate anything, so I’d done all the things that had gotten me labeled “bored” instead, as an attempt to regulate the stress and overload).
Urgh, that sounds… similar to our experience in “gifted programs,” and I’m not sure that we wouldn’t have had a complete breakdown if we’d been kept in an “accelerated curriculum” beyond junior high. There were a lot of skills we just didn’t have that we could compensate for, for a while, through things like having a really good memory, but after a while that couldn’t keep things together.
And yeah, the whole “bright kids act out because they’re bored” assumption screwed us over several times. There seemed to be this prepackaged assumption that whenever anyone labeled gifted acted in a certain way, it was always because they were “bored and needed more challenging work.” We weren’t even actually ‘acting out’ in the traditional sense, until we started kind of mirroring the behavior of a classmate who did– some of it was just stuff like coming close enough to shutdown that we’d basically sit there and stop responding to almost anything. And this always inevitably somehow meant that we were “bored” or “needed to be challenged more.” (The worst thing to us, actually, was when they thought we weren’t doing well for some psychological or manipulative reason, and started trying to therapize us– “You’re actually really good at this, you’re just afraid of success.“)
We’ve had to tell several people over the years “If what we currently say about ourselves seems to contradict what we said in the past, take the more recent version as the more accurate one.” Mostly about plural-related matters, but about a few other things as well. And there are times when we worry that others will get the impression of us as flaky or untrustworthy because of that, but seriously, in a society that seems to frequently go to extreme lengths to keep people from being able to have any knowledge or awareness of how they work, and try to replace that with some generic ideal or fantasy with pre-chosen motivations, likes and dislikes, it seems surprising to us that more people don’t do it.
Yeah. In my case it was mostly overload-type things and ‘stimming’ that got me in trouble.
My brother made an interesting point related to this, that he thinks it would have been a lot more useful to him to be taught how to handle boredom, rather than to teach him that his boredom should be immediately assuaged by something interesting.
Hi. I got here from your link on YouTube. Thank you for sharing all of this – if you don’t mind, I’m going to create an RSS feed on Livejournal (my primary journaling place) so that I can keep up with and communicate with you. I appreciate that which I’ve seen you share so far and would like to get to know you.
Again, thanks.
I arrived via Andrew Sullivan’s Daily Dish. I am awed! Your video has left me feeling humbled by the depth of our ignorance about the potential around us. Thank you for reinforcing so vividly that cognition need not follow any prescribed form.
Ballastexistenz wrote: “I was diagnosed and often made to play along with a number of other things, mostly after that diagnosis… [missing text] …I did experiment with drugs for a brief period of time (a few months). People thought I was on drugs already, because of the manner in which I responded to my surroundings (see above about “not appearing normal”).”
I can relate to that as one of the millions who have been diagnosed with ADD. Stopping the medications (legal and otherwise) and learning to defend my “eccentric” learning methods was very difficult but ultimately the best thing that I could have done for myself.
The big assumption with ADD is that I must be hyperactive and flighty in order for me to have attention deficit disorder. They think I’m trying to pull some kind of trick on them when I lose my car keys for the 3rd time in a month – because I’m “too smart” to do that kind of thing without an agenda or motive.
The next assumption is that I should medicate myself to fit their idea of “functioning”. A few discussions with people in Crystal Meth Anonymous can reveal where that approach has led an alarming number of ADD diagnosees.
The medications available would indeed allow me to remember where I put my keys but that would be all I was focused on… then you start the balancing act because nature has a way of raising the stakes on you. Yesterday’s cure becomes today’s nightmare addiction. I believe the road to hell is paved with Ritalin and Day Planners.
There seems to be a lot of misguided blame in the world for things that most people should be able to forgive as they have experienced it on some level themselves. Why is it so incomprehensible to allow people to think differently?
When people excuse themselves for forgetfulness with a statement like “I’ve just got a lot on my mind today” – I welcome their brief visit to my world with a chuckle.
Thanks for the insight and perspective. I am enjoying learning so much on here.
Thank you for sharing your world with everyone. Your website and videos have helped me to understand and be more open on the way people communicate with one another. It has also helped me understand other people and the way they may percieve the world they live in.
You are truly an inspiration. I am designing a medical brochure for autism for a class I am in and I immedicatley remember seeing you on Anderson Cooper. Do you mind if I use your name?
Thank you
Sandra Lee
I am speechless and humbled. I learned, I hope. I apologize to you and every other person with whom I have encountered with Autism, who I misunderstood or made assumptions about. I will be better for this I thank you.
Deb H
Michigan
I don’t know why, but after reading your blog and about you, I thought I’d share my story:
I used to work in a group home for developmentally disabled adults. When I started, I was given the low down on everyone. “This person has behavorial issues.” “This person can’t learn.” But lo and behold, in the morning when I was the only staff: The person who was “regressing” would sit at the table while I gave her words to write. The person with “behavorial problems” would sit and draw. The person who “wouldn’t come out of his room” would be in the front room dancing to music videos. The person who “couldn’t learn” and “couldn’t do anything” did everything himself, including shaving.
At 7:30, another staff would come and make her rounds saying good morning to everyone. Everything would still be fine. But then 8:00 would come and everything would change when the rest of the staff starting showing up. These were the people who “trained” me.
It’s so frustrating to try and make a positive influence in these people’s life just to watch in all go down in drain in a matter of minutes. How could these staff members who have worked with the disabled for years have such horrible attitudes?! Of course so-and-so has a “behavioral issues” — look at how you just talked to him! Of course so-and-so “can’t do anything” — you don’t give him a chance! So what if he moves a little slow, your cigarette break can wait. Look at him, he doesn’t want you to do things for him! He’s crying because you treat him like a baby, not because he has “issues.” Just because he can’t talk, doesn’t mean he’s not communicating with you. Pay attention!
Well, you get the idea of how things really were. There were a handful of us who really thought that the purpose of the home was to get the “clients” out–whether it be on their own or in assistant living. But no, I’m sure you know that’s not how it is. They stay and nothing happens to them. Their whole life becomes waiting for family to pick them up and get them out of there–even if it’s just for a few days. And what could I do to change it? Apparently, nothing. Everytime I would bring something up, I was told that I just didn’t know anything. I was just a “kid.”
Unfortunately, I ended up taking the whole situation home with me–I couldn’t get the wrongness of it off of me. After a while, I quit for a job in my field. Needless to say, I still feel guilt to this day for quitting. I’ve always wondered if my boys and girls thought I abandoned them. Do they really need me like I’m afraid they do? Does someone else know who likes what type of music or who likes to color and who likes to tell stories? Do they even know all their names? I still know all their names and they know mine — everytime I visit, I hear someone yelling “April is here!” The hardest part of visiting is always when they ask me when I coming back.
Sorry this comment is so long, feel free to read (or not) and delete it. I guess I just wanted you to know that some people really care — not out of feeling sorry, but because they see disabled people as what they really are: individual people trying to make it through life the best they can — just like anyone else.
Hi,
I have relatives who make major assumptions where I’m concerned. Just yesterday, I realized my own grandmother’s assumption about me when she referred to me as ‘Mentally Retarded’ in speaking directly to me. Although the shock has subsided, I do now understand her assumptions about me.
I suffer from Asperger’s Syndrome; my Nurse Practitioner diagnosed me two months ago. My grandmother has noticed the symptoms for years, and has assumed I’m automatically stupid and therefore, not worthy of being treated like the 36-year-old adult that I am.
Also, I’ve had friends forbidden to speak to me recently, by others who have told them I am ‘Evil’, but will not give them or me a reason that I’m supposedly evil. They just look at me and assume I’m bad, which I must myself assume has something to do with my mannerisms and my facial expressions.
At least I now know what I suffer from, and have a chance because of this knowledge to learn to cope with how others view me. But I think what hurts me the very worst, is being treated like a child because I’m not what others consider ‘normal’. This is especially devastating when I am treated this way by family members and close friends.
Ironically, any time I gain a close friend, I automatically assume I’m not going to have that friend for long, because someone, somewhere, will do everything in their power to keep me from forging a strong relationship with those who identify with me. Because of this, I usually have almost no friends, at least of the kind who I talk to face-to-face. Online, I have lots of friends. But I wish people would look at me and see a human being instead of a potential danger.
Thank you kindly for listening. I really needed someone to talk to, who would actually understand where I’m coming from. All this stuff with Aspergers is just so new to me, and I really do not have anyone to talk to who understands my situation, other than my Nurse Practitioner.
Thank you for starting this blog, and thank you also for posting this article on assumptions. Have a good day, and I’ll be sure to read as regularly as I can. I want to know as much as I can about my disorder, and how it will affect me as well as others.
Very cool. Not even I have gone that deep into myself.
Keep writing.
Well written and insightful. Your continual updating of your ideas is valuable and necessary to understanding the events of autism. Thank you. Wayne
From what I’ve read you seem absolutly amazing. The people you know personally in your life are truly blessed to know you and I hope they are greatful that you exist.
You have blown my mind today. There was me before seeing your videos and reading your blog – and then me afterwards. Know that you are doing something really valuable. Thanks
April……..I can totally relate to your comment about the group home. I volunteered at one for a while, but one of the staff bitches sexually harassed me, so I had to leave. I had a particularly close relationship with one client specifically………I mean to say that I connected with him in a way that I don’t think anyone else there could have…..except perhaps the other clients. I miss all of them terribly………I can’t stand to think they’re in the hands of people who call them crazy and bad and stuff like that. I’m STILL ashamed of myself that I haven’t been back there yet.
The Integral