2:22am June 4, 2013

About functioning levels.

This is a response to a response to a post someone wrote. It ended up so long that I figured I should post it separately from their own post. Especially because it was a throwaway line in their post that I am responding to, and I seriously doubt that they want a long winded response to one line of a post that had nothing to do with the main topic of the post. Basically they said that everyone they heard from about the autistic person vs person with autism thing was high functioning because low functioning people wouldn’t give a flying fuck about what they get called. And being in a medication induced hypergraphia mode, I apparently had to respond, and respond and respond and respond, for hours. At which point I had the amazing presence of mind to realize that they might find my response quite overkill given the situation and might take offense. But I still think the information in this post is important, so I will post it here separately. I am amazed at the fact that I figured out they may take offense, I never figure stuff like that out before the fact. So here goes:

Only thing I would disagree with is “the lower functioning ones don’t give two flying fucks”. I know plenty of people who were diagnosed as low functioning who have intensely strong opinions on the matter – in both directions. Believe it or not, being considered low functioning doesn’t always mean you don’t care or can’t communicate or can’t understand things. I’ve met plenty of people who were diagnosed as lower functioning who basically had the cognitive skills of a stereotypical aspie with severe motor skills problems that prevented them from showing what they knew for a very long portion of their lives, until they either learned to type or speak. And they revealed that they knew what was happening all along. Meanwhile there are people considered higher functioning who understood less of their surroundings than some people considered lower functioning, but were able to use pattern matching to seem as if they understood more than they did.

I know it was a throwaway comment and I’m not trying to attack anyone or anything. I just know too many people who defy that description to avoid saying something.

Autism isn’t a spectrum from mild to severe. It’s a collection of many, many differences in perception, motor skills, and cognition. Each of those difference can vary in both quality and quantity, on its own, individually, independent of the other skills.

The person I know with the largest vocabulary of anyone I have met, for instance, is a teenage boy who is considered very low functioning by most people. When he was seven he had a bigger vocabulary than his mother, who was a linguist. But his IQ tested in the thirties because sensory and motor issues made him untestable. He worked very hard to learn to use a computer to communicate, because his speech is so unintelligible to anyone who doesn’t know him well that professionals believed it to be merely squealing and gibberish. He now types rapidly and totally independently on his iPhone in order to communicate, uses a MacBook independently, and is an award winning filmmaker who started college when he was thirteen. He was more aware of the meaning of words and of his surroundings than I was, as a child who appeared much more verbal than him on the surface at the same ages as him. He is adamant that autism is an important part of him and that he would not be the same person without it.

Another person I know with a very high vocabulary can’t speak at all, did not type until she was a teenager, and was given an IQ estimated at 20 or below. She now types (independently but very slowly) on a LightWriter. Any time you call her an autistic person she will correct you in a… very intense way. She says she is a person with autism, not an autistic person. Because she grew up with the word autism overshadowing her entire identity, being treated as if she was nothing but a walking case of autism, understood and greatly resented everything that was happening around her as she was placed into a class so boring that she resorted to living in a fantasy world to avoid it. She now deliberately uses a lot of big words to prove to people that she is aware of things and intelligent and has a huge vocabulary. Oh and she has no problem reading people at all and never has. Her comprehension has always been excellent, of everything around her, at the expense of her motor skills which are so bad she can barely type and took years to learn. That’s a common combination in autistic people.

I’m someone whose life completely defies all severity labels I’ve ever heard of. Partly because my skills have shifted around so much and so often that they aren’t the same day to day let alonr year to year, decade to decade. I have both gained and lost a variety of skills, if you could plot every skill on a graph… Each skill would be a range, not a single point, and over time they would all fluctuate up and down, in and out, in such a complex pattern that it would be impossible to assign any single functioning level. I have always had better superficial expressive skills than comprehension skills and that allowed me some degree of camouflage until everything fell apart on me, not enough that I didn’t get noticed as something wrong since early childhood, but enough that I didn’t get diagnosed until my early teens despite some larger comprehension deficits than many people I know who were diagnosed earlier.

People have unofficially labeled me as both low functioning and high functioning. But on paper the only thing I’ve seen (since many skills took a prolonged nosedive due to autistic catatonia) is low functioning and maybe mid functioning, and my doctor calls me severe these days. I don’t like any of the functioning level words for myself, though, because I feel like its impossible for them to fit me. All you can say is that I can do this one thing, or can’t do it, at this one point in time. You can’t add up all the things and come up with a meaningful average or total. My IQ has tested as both high and borderline low at different times in my life, but I don’t put much stock in IQ tests either way. I also have a number of other disabilities that probably interact with autistic traits in ways that can’t be measured easily.

At my least capable, I have some combination of no voluntary movement (but may have less voluntary/more reactive movements, some of which are complex), no language (understanding or making), no abstract/conceptual thinking, no comprehension of the objects in my environment, no understanding of sensory input, sometimes even no ability to feel sensory input, like it’s all off in the distance somewhere where I can’t reach it.

At my most capable, I can do some things but not others. I can never do all of my best abilities at once, I can usually only have one to four of them and the rest of them drop off. But at my most capable, I can obviously write, I can’t speak communicative anymore though except very rare and brief occasions that I have no control over. I can do some motor skills well, but other ones I have trouble with, so that I can do a movement like touch typing but may have much more difficulty transitioning from sitting in bed to standing beside the bed, crossing visual boundary lines, controlling stimming, and things like that. I generally do better with movements that are a reaction to something, than an initiation of something. I have very few self-care skills. I can sometimes use the bathroom and sometimes can’t. I need help with at minimum initiating most self-care things (like I can brush my teeth sometimes but only if you hand me the toothbrush loaded with paste first), and at most I need it entirely done for me (like bathing). I find it difficult to process sensory information and often have agnosia-like problems, but can overcome it when I’m at my best, by a lot of cognitive effort. Language comprehension is a strain at my best and drops out the moment I stop working at it. I’m better at expressive language than receptive, but I have problems there that can be more subtle to an observer (like I can’t summarize and end up writing in too much detail, I can only communicate about a limited range of topics unless I’m really lucky, I can’t say more than a fraction of the things I know, but I can be so good at what I can say that you wouldn’t know it). Expressive language is a strain too though and sometimes I can’t do it. Sometimes I need to use the picture symbols on Proloquo2go instead of typing the words out. Sometimes I can’t do either one. Abstraction is also a strain but I can do it if I work hard. My appearance is one that people usually take as having an intellectual disability until they get to know me. I used to look less like this (although I’ve been bullied with the word retard and the like my whole life, even when I was classified as having a high IQ and people knew it) but I’ve gotten more and more hard to control my body as I’ve gotten older.

Some autistic people make permanent tradeoffs where they have one skill really good and others really bad. Because autism is largely involving problems of where to put limited resources, splitting them between various cognitive, perceptual, and motor skills. Other autistic people make temporary tradeoffs and their skills shift around, either slowly over time or frequently on a daily basis.

I’m much more to the end of making lots of temporary tradeoffs. I have kind of a baseline set of skills, but they shift around a lot. I never have all of my best skills at once, and I only have limited control over where the skills will go that day.

So for instance I am frequently able to write very long things, like this, but either unable or barely able to read my own writing to check it over. Sometimes unable to read at all, sometimes able to decode without comprehension, sometimes able to comprehend what I read. At my very best of each, my expressive vocabulary is much larger than my receptive vocabulary. So I can use far more words than I can read. I often have to look up words I’ve used correctly, because I pick up words as patterns associated with situations, more than as things with meanings I know. I frequently make tradeoffs between being able to control many of my body movements without comprehending much of my environment, or being able to comprehend my environment without being able to control many of my body movements.

So one thing I will do is I will plan out my writing while totally unable to move. Then the writing sort of sits in my head until I’m able to move again. Then at just the right moment, which I have little control over, my body will type out all the things I wrote, without being able to comprehend what it is I’m writing. Each skill I use takes away from other skills, and I can’t usually just decide I want that skill now but not that other one, so it’s sort of like being a bird waiting for the air currents to move me up. Often when I appear to do something well, it’s because of years and years of behind the scenes practice in my head while unable to do it at all. Until finally the skill, or the words, or whatever, sort of burst out.

And it’s not just that skills trade off from each other. I also have times of generally better skill and times of generally worse. So there are times, when everything is at its worst, where I sort of… I call it disappearing. I experience something at those times, but I’d be hard pressed to know what it is.

I also have times, like right now, where skills go into overdrive. I’m having a medication reaction right now that is making me really hyper and more verbal skills than usual so that I have been writing really long stuff all day, but at a cost. Extreme pain and exhaustion and a feeling of disconnection from everything. But I can’t stop, it’s out of my control, it’s like hypergraphia overload. That’s why I’m likely overloading you with more text than you ever wanted to see about this topic.

Anyway when tested on a test of daily living skills I got one segment up from the lowest possible score, scoring at the bottom of the test in several areas. But I have good skills in other areas. I get services every day where people assist me with just about everything, ranging from a little assistance to total assistance. I qualify for a full time roommate but haven’t got the apartment for one yet.

My actual best skills, most consistently best, are often not ones you can actually see in a person. They are hard to describe. Basically they involve a way of understanding of the world that is more perceptual than conceptual. Concept thinking is sort of a second cognitive language for me and very difficult and painful to do, even though I make myself do it a lot to stay in practice.

But my best thinking is more like patterns of sensory perception, it’s not visual and it’s not verbal. It comes out a lot in my paintings, which have lots and lots of layers of texture and color in the background (which is the most important part to me), and the foreground is usually people or cats, but not realistic, more a sketch of their pattern of movement. That’s how I perceive the world best, in layers and layers and layers of texture from all of my senses, with awareness of movement and pattern being the most important parts. Not pattern as in concept logical pattern things, but pattern as in things moving together fitting together things like that. I have trouble understanding what I see, as in this is a table this is a chair, and my vision is often fragmented and other problems, but I see colors and shapes and textures and movement very well.

I’m sorry to describe myself in so much detail. It’s just hard for me to explain in brief words… Anything, really. But especially hard for me to describe why many autistic people could not be fit into the categories of high or low functioning no matter how you tried, and I am the nearest example at hand. Also I prefer to explain why what you see in the Internet does not necessarily show what you would see offline. (Online people tend to grossly overestimate my skills because they see my writing at its best, a skill I have spent my life honing. Offline people tend to grossly underestimate my skills because I seem to have an intellectual disability and can’t do more than echolalic speech anymore, and move either way too little, or in very odd ways. I once overheard a doctor at the hospital say I had the cognitive functioning of an infant, because he saw me at a time when I couldn’t type. I often tell people that high functioning means people overlook your deficits and low functioning means people overlook your strengths. That had been my experience with what happens when people call me one or the other. My doctor tends to call me severe, but I think it’s in his case more because my support needs are pretty high and he needs my documentation to reflect that. At one point I found medical records referring to me as low to mid functioning at a time when I was usually but not always verbal, and had other appearances of higher skill levels, so I really honestly don’t know how doctors judge such things in me.)

Anyway my skills have gone all over the place. They do it day to day. But they have also gone up and down and up and down my whole life starting in infancy. I’ve gained skills, gained superficial appearances of skills, lost skills I really used to have, lost the appearances of skills I never really had, and every combination of those things, over time. And my baseline in each skill has changed around a good deal.

And there are lots of people like me. I meet them all the time. I’ve read some books on autism that suggest that such things are far more common than most people think. For instance losing skills in adolescence happens to, at the highest estimate, a third of autistic people. I know people who unlike me were originally diagnosed with Asperger’s because they’d always had excellent speech and self care skills, who developed autistic catatonia like I did, and by some point in adulthood they had no speech and needed 24 hour care and were referred to officially as low functioning. In my case I had a speech regression in infancy (but gained speech again later) and severe receptive delays and my self care was never all that wonderful, but I also developed autistic catatonia (or rather the losing motor skills phase got triggered) and lost a bunch of stuff.

Anyway… I’m sorry again to say all this stuff in response to a tnrowaway comment that likely wasn’t intended to provoke a reaction. I’m not writing all this because I’m mad, I’m writing it because I have trouble being concise on command, even if my life depends on it. And also because it’s a very important topic to me, because people look at me frequently and believe that I couldn’t possibly have any understanding or awareness of things like that. And I’ve known lots of autistic people who unlike me were regarded as low functioning their whole lives, but had really good comprehension, much better than mine, and were always aware but couldn’t make anyone know.

People think people who look and behave and test a certain way don’t understand or care, and are oblivious to everything. And sometimes that’s absolutely accurate. But sometimes it’s absolutely not. And it’s very hard to tell from the outside which one is which, because severe motor issues can conceal very good cognitive skills.

There are also, to many people’s surprise, people who look fairly competent but are extremely oblivious to a large number of things, and wouldn’t care at all about things like this. I was like that for parts of my childhood. I knew much less about the world than almost anyone except the psychiatrist who diagnosed me seemed to be able to guess. I had a few talents that blinded people to both my real skills and my real deficiencies, even when they showed up on testing. (Back then they actually said that it made no sense at all that my comprehension scores were my lowest scores on the test and expression scores much higher for instance. Even though that’s actually classic for certain types of autism.)

So I don’t feel like I can give myself a functioning level. And there are many other people in the same boat. So I would appreciate people not assuming that just because I can type well sometimes on the Internet I am high functioning, or just because of my appearance and self care skills and the times when all my skills dip as low as possible, I am low functioning.

I actually think that in just about every autistic person, the idea of high functioning and low functioning will do more to hide their actual capabilities and deficits than it will to explain what they need.

Also the other reason I don’t like them is… There is a person I know who is more like me than anyone in the world. Our friends say we share a brain. It’s uncanny how similar we are. Our skills are almost identical except in a couple areas that are mostly superficial appearances, and except in the fact that I have far more health problems than her and that affects non autism related skills. We finish each others sentences. We think the same things at the same time. I think we are about as similar as it is possible for two separate people to get. In terms of

Except.

Everyone says she is high functioning and everyone says I am low functioning.

In fact she was (mis)diagnosed with Asperger’s at one point, whereas nobody has ever even considered giving me that diagnosis. (She qualifies for an autism diagnosis but because she was an adult before she was diagnosed, she was only diagnosed with PDDNOS and AS at different times. I have been diagnosed with autism and PDDNOS at different times, though like her I fit the autism criteria easily.)

I’ve known hundreds of autistic people – most not very well, but I’ve known them, both on and off the Internet, in a wide variety of settings from institutions to community. I have learned, largely through my ability to spot sensory patterns in movement, to spot similarities and differences between different sorts of autistic people. Like a man who moved into my building several years ago strikes me as extremely similar to my brother who is also autistic and I spotted it very quickly. I’ve developed quite an intuitive sense of a wide variety of sorts of autistic people, and when I meet someone I automatically start seeing who they are like, who they are different from. Parents have told me I should be in the autism screening business because I pick up things about their children that doctors miss. It’s because the sensory and motor and cognitive systems of autistic people are pretty intuitive for me and I have known so many people from such a wide range of backgrounds. I don’t claim to be perfect at this or anything, but people have agreed with me when I have told them “You should really meet this other person who is just like you”, or have told them about traits they didn’t disclose to me.

And what I’ve seen is that more often than not, judgements of functioning levels and severity are not based on what type of autism a person has. As in, how similar they are to other people like themselves. They are instead based on a small number of traits, often between three and five, out of dozens of autistic traits any one person might have.

So let’s say two people have thirty autistic traits, and have 27 of them in common. If the 3 they don’t have in common are among the traits used to judge functioning level, they will be told they have different functioning levels even if everything else about them is nearly identical in ability and type. More than that. Let’s say they are both twenty years old, named Alice and Maria, and Maria’s mother Barbara is taking to Alice. It’s very likely that Barbara will say to Alice something like, “I can’t even imagine what you think you have in common with my daughter Maria. I look at her and I can’t even fathom how you could be similar. It really offends me that you think you are like her in any way, you are so totally different. She can’t even do this, that and the other thing, and you can do all three!” Because everyone looks at those same three to five traits to judge which autistic people are similar to each other, and ignores all the deeper similarities other people have.

Them you get someone else, Lindsey. And those three traits of Maria’s that are (or just appear) very different from three traits of Alice’s? Lindsey happens to share those exact traits with Maria. But she has 27 other traits that have nothing remotely in common with Maria. Not even close. But those 27 traits are not the ones people use to judge whether autistic people are similar or different, high or low functioning, mild or severe. So enter Lindsey'e mother Susanna.

Susanna meets Barbara. And suddenly they are gushing to each other about how much in common Lindsey and Maria have, how they are so similar and it’s amazing. And now both of them are talking about how their daughters are so similar, and how their daughters are so totally different from Alice that they are almost offended that Alice even claims to have the same condition as Lindsey and Maria.

Meanwhile, Lindsey and Maria may themselves know they have very little in common but be unable to tell anyone that. Alice may even be able to tell that she herself has lots in common with Maria and almost nothing in common with Lindsey. Alice and Maria may immediately understand each other and bond and communicate well. Possibly without Barbara even being aware that the two of them are communicating. Alice, having better verbal skills, may attempt to explain the situation, but get brushed off by both of the mothers as someone who is totally and offensively unaware of how different Alice is from both of their children. (When Alice is very different from Lindsey but almost identical in terms of autistic traits, to Maria.)

I’m talking about that scenario because I’ve seen it play out over and over again. I’ve also seen parents who were not exactly offended, but baffled by the connection between their children and autistic people who were considered either much higher or much lower functioning. When the reason was that the bulk of the autistic traits they had in common were simply not among the tiny number of ones that people usually use to tell mild from severe, autism from Asperger, etc.

That is the sort of thing that explains the responses parents often don’t understand. “Why is my child, who never approaches anyone socially, gleefully running up to this autistic adult who seems nothing like them?” Often because “seems nothing like them” is an illusion. It may be that the two of them only appear different on the surface. It may also be that at the age of the child, the adult appeared just like the child does now. But whatever it is, it is usually the answer that the two of them have more in common than people understand when they use functioning levels, or autism vs AS, as their main way of understanding who is similar and who is different.

That’s why I don’t really trust functioning levels. They seem to divide up people who are very similar, and put together people who have very little in common. You get kids who are the stereotypical aspie in every single way, except that their motor skills are so bad they can’t talk and may not be able to type, and have a lot of involuntary movements that make them look by odd. Yet because they are labeled low functioning, they are separated from, well, stereotypical aspies, and told they have nothing in common with them at all. And you get people in the opposite position too. The variation among autistic people is incredibly complicated, far too complicated for these categories to work.

Worse, I worry about my friend. Her self care skills are as bad as mine. Left to her own devices, she would probably starve to death. Luckily she has a boyfriend (yes, that does happen, especially to autistic women) who helps her eat, keeps her from accidentally walking into traffic, and all the other things that my staff people do for me.

But what if they break up? What if something happens to him? What it he becomes disabled in a way that prevents him from caring for her? What if he dies?

She was in special ed as a kid but she’s never had adult services. I know the service system in her area because I got services there myself. It’s very hard to qualify if you were diagnosed as an adult. I only qualified because I had extensive documentation of multiple childhood developmental disability diagnoses (PDDNOS, developmental disorder NOS, and autism). I know people who simply lost their childhood paperwork and had real trouble qualifying, even when they had conditions like autism or cerebral palsy that by definition begin in childhood. People who were diagnosed as adults have incredible trouble qualifying and usually get denied around there.

Plus, people regard her as high functioning. Her speech skills are somewhat better than mine in a very superficial way (they are much like mine used to be, they come and go and have certain limitations that most people can’t see). She has a part time job. And… Something I can’t even define, that seems to get people to assume she has more skills than she does, some of the time.

Because of the entire idea of high functioning she could die. She could die because she has a small handful of traits that would make people overlook her severe difficulties in a large number of areas. It sometimes keeps me awake at night worrying about her. She is so much like me, that I know she has many of the same needs, but people who don’t know us well only see the differences.

Meanwhile my life has been in danger before for the opposite reason. Because people see me as so incompetent and low quality of life that my life isn’t worth living, and I’ve had to fight like hell to get medical care that I desperately needed when doctors wanted to let me die. It hasn’t just happened once but many times. People see me as a waste of resources that could go to a real person.

It is dangerous to be seen as high functioning because you get denied services that you might need to live. People regarded as high functioning often end up homeless and starving because they lack self care skills that everyone assumes someone as smart and verbal as them would have.

It is dangerous to be seen as low functioning because people deny your potential and your quality of life. It can be stuff that isn’t life threatening but affects your life in extreme ways: Being taught words at a four year old level when your mind is at a college level. Being denied means of communication because they assume you could never learn to use it. It can also be life and death. If you are regarded as low functioning it is very common for doctors to assume that you have no quality of life and therefore your life is not worth saving in an emergency. I’m not the only person I know who has had medical professionals deliberately try and fail to save my life in emergencies. Parents have also petitioned governments for the right to kill their children if they are considered profoundly cognitively disabled, a common label for autistic people considered low functioning. And some parents have taken the matter into their own hands, and literally gotten away with premeditated murder because the court system said that living with a low functioning child for fourteen years is sentence enough and they don’t need jail time. Some parents of children who would normally be considered high functioning have actually deliberately described them as low functioning in order to defend themselves at murder trials.

I know the situations I describe are extreme but they are also quite common. And for every person who survives them there are many who aren’t so lucky.

Even when a person’s actual skills seem to really match the label of high functioning of low functioning, autistic people never have skills that are all one thing across the board. People labeled high functioning always have some skills that are very low. People labeled low functioning always have some skills that are very high. These skills may not always be obvious to someone from the outside, not even to people who know them well, but they are always there. Autistic people never have totally even skills across the board, we always have some that are tradeoffs for others, whether long term stable tradeoffs or short term fluctuations in skills.

OMG I’ve written way too much. I can’t seem to stop. Please something stop me. I feel cognitively the way I used to feel when my body could run around the house in circles without my consent until it dropped from exhaustion.

The problem is this is an area I know quite a bit about. I have even co-written presentations with autism researchers about this topic. They told me that there is a lot of scientific basis to back up my much more informal observations about the matter. That low functioning and high functioning don’t turn out to be good ways of describing just about anyone autistic, because our skills are simply too varied to ever fit neatly into a category like that. And we don’t even know what autism is yet, so we don’t know what mild and severe mean. Using number of autistic traits as a measure of severity though, the researcher told me that they’ve found that people with more autistic traits (more severe) actually function better in a lot of areas than people with fewer autistic traits (more mild). So a lot of how severity is measured may not work the way that is most intuitive for most people when they look at us.

There’s also just too many qualitative differences to measure something like this. Like even if you narrow it down to one area, how could you possibly give me a functioning level in the area of language skills?

You could say that I am, at my best, a good writer, and am therefore high functioning.

You could say that I am, at my worst, totally unable to comprehend that language even exists, let alone what it means, and call me low functioning.

You could say that I am, at my baseline level without putting any effort into it, unable to understand language, and all me low functioning.

You could say that when I am able to put the effort in, I am able to write pretty well, and call me high functioning.

You could say that many times I am unable to put that effort in, or put it in only partly, and call me maybe mid functioning.

And my language skills are such that how well I do depends on how much ability I have to climb higher than my baseline. My baseline is no understanding of language. Putting in constant effort is like climbing a cliff. I have to hold on with my fingernails. The only place I have that is ground I can stand on, is very far down, lets say at an elevation of zero. And let’s say I can climb anywhere from twenty five feet some days to two hundred feet other days.

Then let’s say there is another person who has solid ground under their feet at a hundred feet, but the ground is flat all around and there is no cliff to climb. So they will always be stuck at a hundred feet. Except that occasionally they fall into pits that take them down to twenty five feet, but only for a few minutes until they can climb their way out.

So basically, I’m someone with a low baseline who’s often able to climb out of it to a high level.

They are someone with a medium baseline who can’t climb to a high level at all, but who can fall occasionally to a pretty low level, although not as low as my baseline. And they can always climb out quickly and get back onto solid ground at that medium level.

How can you even compare the two of us? Their skills are far more stable than mine, but they aren’t as good as mine can get when I work really hard and all the conditions are right.

To make it even more complicated, their surroundings are different. Mine is maybe in a forest with a really wet climate, and theirs is in a desert with a really dry climate. My language skills are more based in sensory pattern finding, and their language skills are more based in logic. They are more at home in language than I will ever be, but I have the potential to be more skilled at it.

And that’s just one set of skills, language. Imagine trying to measure these things. Both in quality and quantity. Across every single skill and difficulty a person has that is affected by autism.

It’s impossible. You can’t do it.

You can try, but you can’t do it.

And you certainly can’t combine all that information about all those dozens of skills affected by autism, and then assign one single functioning level and expect it to mean anything at all meaningful.

So… Basically yes lots of people diagnosed as low functioning care incredibly much what people say and think about them. Not every accident where a “LFA” person wanders into traffic is an accident. Sometimes it’s suicide. I know of a man who learned his parents would not let him type anymore to communicate, and deliberately got himself run over by a train the next day. LFA does not mean oblivious. It means that in, at minimum, a handful of skill areas, a person appears to have certain difficulties. That’s all. It doesn’t mean they have those difficulties. It doesn’t mean they don’t have other strengths people are unaware of. A person can be considered LFA entirely based on apparent speech or IQ score, yet be more competent in many areas than many people considered HFA. Including social awareness. Including caring deeply what people think about them.

And also, the division between low and high functioning doesn’t actually make as much sense as it looks like it does. For the many reasons I’ve described. There are some people who seem easy to categorize one way or the other (but there are always surprises in such people, always, things that don’t fit the mold), and then there are people like me that any honest person would have to say is totally impossible to classify.

And also, being classified as both high and low functioning is dangerous.

And also, it separates people who are similar and puts together people who have nothing in common. I get so sick of people telling me I will have so much in common with someone, and I find out all we have in common is that we both get fairly intensive support services and can’t talk very well or very often or something. And then everything else is different.

So…. Wow, I did manage to sort of summarize myself, which I’m also bad at, but I only did it after I wrote out gods know how many pages of details and details and details. I have to stop writing. I have to stop. I need sleep. I can’t keep doing this. I have a lot to discuss with my case manager tomorrow and if I stay up all night writing I will be in so much pain I won’t be able to do it. And it is about my feeding tube so it’s really important. Damn it stop writing right now. Now.

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