Posted in Developmental disability, Developmental disability service system, HCBS

My assessment scores, for reference purposes.

Howard Center has several divisions.  There is Mental Health, which it is best known for.  There is also Substane Abuse.  There is Children and Family.  And then there is Developmental Services, DS for short.

I get services through Developmental Services, through a Medicaid waiver program called the Home and Community Based Services (HCBS) program.  In the state of Vermont, to get developmental disability services you must have either autism1 or an intellectual disability or both, and have limitations in certain life skills.

So proving the autism diagnosis wasn’t hard, but they wanted a current assessment of my life skills. So I was 24 years old, almost 25, when this assessment was done. It was done using the ABAS, the Adaptive Behavior Assessment System, the “Adult Form, Rated By Others,” meaning that my staff person (who had worked for me for 3 years at that point and knew my skills very well) rated how often I could do a long series of tasks listed. She asked specifically about whether it should be as I do with or without assistance, and was told to rate me as without assistance so they could get a true estimate of my abilities. My case manager from Easter Seals was there in the room the whole time. I was too nervous to even look at the test so I just sat there doing nothing. The test basically asks how often a person successfully does a series of specific tasks, from always/often to rarely/never.

An important thing to understand about this test is that it is supposed to test your abiliities as they are applied to the real world.  That’s why it asks how often you actually do these things.  Because it’s not about whether you have a theoretical understanding of something, it’s about whether you can actually do it.  At least, that’s how the test is meant to be applied.  Obviously it’s subject to the interpretation of whoever’s filling out the forms.

So these are the scores I got in the different areas.

First are the scores in each specific skill area. These are out of a scale that runs from 1 to 19, with 10 being average, and 1 being the least capable in this area and 19 being the most capable.

  • Communication: 1
  • Self-Care: 1
  • Self-Direction: 1
  • Community use: 2
  • Home living: 2
  • Health & Safety: 2
  • Leisure: 2
  • Social: 2
  • Functional Academics: 3

They then divide that into three areas:

  • Conceptual: 5
  • Social: 4
  • Practical: 7

Conceptual has a possible score between 3 and 26, Social has a possible score between 2 and 51, and Practical has a possible score of between 4 and 64.

Then you’re given a Composite Score that sums everything up.

  • Composite Score: 47

The composite score is from a range of 40 to 120.  My score is in the lowest percentile range for this test which is given only as <0.1.  The numbers are meant to mirror the numbers on IQ tests, so 100 is average.

It’s also important to know that at the point in time this test took place, I was much physically healthier relative to now.  The majority of the stuff I couldn’t do, that this test measured, was due to cognitive disabilities related to developmental disabilities.  I did not suddenly and recently become unable to do these things because of physical illness or disability.  I have been unable to do these things for quite a long time.

As far as how I see the accuracy of the test, I think it was pretty accurate.  There’s only one area that I find misleading, and that’s the communication area.  I got the lowest score possible for communication.  This didn’t make sense to me, or to the tester given that she had a coherent conversation with me.  But I asked my staff person what happened, and she told me that the test just happened to ask questions about the parts of communication that, especially at the time, I was the worst at:  Small social nicety words.

So things like please, and thank you, and hello, and things like that.  And while I’ve gotten better with those, at the time I really did never say those things to anyone.  So she had to mark it down as rarely/never.  So even though I was a writer, I got the lowest communication score it was possible to get.  But I can’t say it was totally inaccurate, because for what it measured I really didn’t say those things.  But it gives a very misleading idea about my communication skills, that the test didn’t even bother to clarify how well a person did things other than really basic words.2

The rest of the test just seems pretty accurate to me:  Left to my own devices, I can do very little for myself.

The important thing here is that this was documented back in 2005 by Howard Center.  As part of the intake process.  So acting like I am suddenly capable of doing these things, or acting like my difficulty doing them is new and entirely due to physical disability, goes against stuff they have in their own files about me.  I mean, in order to get into HCBS services in Vermont I had to prove both that I had a developmental disability of the sort they serve in Vermont, and also that it limited me in a certain number of life areas.  And this was the limitation part.  And it definitely showed that I was very limited in every single one of the life areas tested.

And there are specific reasons for that, but that’s a topic for another post.  I just want to document the fact that my inability to do this crap is well-documented and was known to be related to cognitive developmental disabilities thirteen years ago, so none of this should be a surprise to anyone.  Nor should the fact that skills training was tried extensively in California and didn’t take.  And all the other things they used to know and have conveniently forgotten.

Also I hate assessments.  They make me feel like a collection of deficits.  It’s a very icky and medicalized feeling.  Like having the important parts of you disappear like they never existed.  No depth.  But I’m glad I have documentation of this nonetheless.

 


1 By which they mean any label connected wth autism, so Asperger’s and PDDNOS count, unlike in some states.  Which is not as much of a moot point as you’d think, because people still have old diagnoses from before the DSM-5, and also large parts of the world don’t use the DSM and have not merged all the diagnoses into one.

2 There’s a larger problem at work here that I don’t want to get too distracted by, but is huge: There’s an assumption out there that skills run in a line from basic to advanced, and that you have to have the basics before you can do the advanced stuff, and that everyone progreses by first learning the basics, then intermediate level, then advanced.  And that everyone progresses along the same line, with the same set of skills, and so forth.

Which makes absolutely no room in the world for the fact that there are many people who learn skills in a totally different order.  Or who can do something advanced but not the basics, like my friend who is severely dyscalculic and spent her childhood in remedial math because she couldn’t do arithmetic.  Then a teacher found out she was obsessed with division by zero (which her teachers thought meant that she really didn’t grasp math) and told her to take that and run with it, and she reinvented the foundations of calculus.  And got out of remedial math for good.

There’s lots of people who learn things in a different order.  And there are actual disabilitis that cause a person to do something that seems advanced without being able to do the basics at all.  This often confuses people.  For instance, there are people with autism-related language disabilities that cause them to use very long words but have trouble with “simple” language.  And the very long words convince people that they have no language problems.

So it’s actually totally in keeping with that kind of thing that I failed a communication test that tested “easy” stuff, at the same time I was writing long eloquent articles on the Internet.  I really couldn’t do those “easy” words in conversation.  So I feel like the test was accurate to the specific things it tested, but misleading as a test of overall communication because communication is a lot more than those supposedly “easy” parts.

 

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Posted in Being human, Things I try to hide

Memory is complicated.

A sentence that may be difficult to understand:

I use my excellent procedural memory to hide wild variation in the reliability of my declarative memory.

Procedural memory, or implicit memory, is how you just know how to do things.  Especially physically — the classic example is riding a bicycle — but other ways as well.  Procedural memory is not only rarely a problem for me, but often a strength.  It’s why I’m such a good touch-typist, among other things.

Declarative memory, sometimes called explicit memory, is the kind of memory you’re generally aware of when you remember something.  You remember facts, and events, and words and concepts associated with them, and those sorts of things.  That’s declarative memory.

Sometimes I gloss over the intricacies involved here and just say I have memory problems.  But that’s not entirely the case, even though it basically functions as memory problems  And it’s not a consistent thing even when it does exist.  And it’s not like I just, across the board, have trouble with memory.  Nor do I have trouble with memory along the lines most people know about to divide memory up into different types.

As mentioned, my procedural memory has been excellent for as long as I know.  So much so that I almost overuse it to compensate for fluctuations in declarative memory.  So much so that I use it as a gateway to declarative memory in certain ways.

This is important:  This is the way cognitive abilities shape themselves around patterns of ability and difficulty that are unusual.  Just like physically disabled children may learn to walk in a way that’s completely out of line with how most medical professionals define how walking development should happen, cognitively disabled children learn to think in ways that are completely out of line with how most medical professionals believe cognitive development should happen.  Then if they notice at all, they frame it entirely in terms of what we can’t do, what delays we have.  They never look at it as another variation on what humans can do.  I love seeing physically disabled children who are too young to be self-conscious about the unique ways they get around.

Anyway, back to memory.

So, my memory issues are probably in several areas, but the biggest one is simply a voluntary retrieval issue.  In other words, it’s more about my general inertia than about actual problems with memory.

Inertia, for me, is all about volition.  Which is the ability to do things, directly, on purpose.  It’s not about the want to do things.  It’s not about the ability to do the things if the ability is triggered properly.  It’s about getting from want to do.  Most people have very little idea that there can even be a gap there.  For some people, that gap is so wide that we get various medical labels: catatoniaParkinson’sapraxia.  For some people, the gap is wide enough to cause trouble but it goes unrecognized,

Anyway, one very under-recognized thing about inertia is that it doesn’t stop at the connection between thought and action.  It’s not just the inability to stand up and move when you want to, or the inability to carry out a complex plan.

There’s a handy chart that I always pull out at these times.  It was developed by Martha Leary and Anne Donnellan.  They developed it eons ago to quickly explain movement difficulties — where movement is understood to involve a lot more than just physical movement:

Marked difficulties in: Starting, Stopping, Executing (speed, intensity, rhythm, timing, direction, duration), Continuing Combining, or Switching. May impede: Postures, Actions, Speech, Thoughts, Perceptions, Emotions, Memories. Martha Leary & Anne Donnellan, 1994.
Marked difficulties in: Starting, Stopping, Executing (speed, intensity, rhythm, timing, direction, duration), Continuing Combining, or Switching. May impede: Postures, Actions, Speech, Thoughts, Perceptions, Emotions, Memories. Martha Leary & Anne Donnellan, 1994.

Anyway, you’ll notice memories at the end of that list.  Like thoughts, perceptions, and emotions, those are not what people normally think of as actions.  But they are actions.  My inertia is across the board, affecting all of the things on the right-hand side of that chart in different, extreme ways.  And memory is far from unaffected.

So I have what seems to be an inconsistency to my memory:  I can’t recall things on purpose, and at any given time I can’t recall most things.  When people see this, and they see it often, they say I have a terrible memory and leave it at that.  And I test badly on most formal tests of memory.

But.

If something happens to jog that exact same memory I couldn’t recall to save my life before, I will not only recall it, but recall it with more precision and accuracy than average.

Since memory is imperfect and fallible for literally everyone, I haven’t just gone by what it feels like.  I have looked for instances where my memory of things can be corroborated by documentation that existed at the time, and compared my memory of events to the memories of other people I’ve known.  Generally — not always — when I have access to a memory, my memory is extremely good.  Including my memory for extremely distant events, earlier in my life than I’m supposed to remember anything.

Good doesn’t mean perfect.  It just means good.  My memory is as fallible and malleable as anyone else’s.  Anyone who thinks theirs isn’t is fooling themselves.  But I often remember details others don’t, and I remember things more accurately on average, when I do remember.

I cover for the lack of access to most of my memories in a variety of ways.  One is by relying on procedural memory for more than most people rely on it for.  This gives the impression of more competence.  I also can often memorize a vague description of something even if I don’t actually remember a thing about it at all.  And I rely on what I can remember — if you can remember something, people assume you can remember everything. And people don’t expect people to have the massive memory gaps I often have, even people with memory issues.  I also find ways to trigger retrieval of memories indirectly, but I can’t always do that.

So there’s a problem of access to memory that has to do with inertia.  And inertia is all about the difference between a voluntary thing and an involuntary or triggered thing.

But there’s more to it.

Sometimes my memory of the world shrinks so extremely that I can’t remember or perceive anything outside of what I am perceiving in the moment.

Often, events and sensory input that are too much for my brain to process, crowd out memory and mess up something about my ability to remember recent events (past few weeks or months at least) clearly.  After a time (days, weeks, months), those recent events come back into memory.

When I’m delirious, I’ve lost memories .  Sometimes even after I’m not delirious anymore they never come back.  I’m lucky I can remember the period around my father’s death, because several months later I lost it all while delirious.  When I got better I got back that period, but lost a couple months in between, never returned.

But at any rate, with all this going on, it is not unusual for the whole world to be new to me, my only guides for how to behave not consciously available to me, some pattern laid down by decades of repetition of this process so that I can normally function.  But where the entirety of time besides now is blank, and the entirety of the world outside here is blank, and I am starting anew, all over again, until memory comes back.

And it does come back.

But the world is a very weird, scary place when most of is blank.

Especially when I can perceive something is supposed to be there, out in the blankness, but all I can find is white nothingness.

I have recently begun telling people about this because my friends have told me to hide less from them.  But it’s frightening.  I am concerned if people knew the extent to which this happened, they’d see me as incapable of making decisions.  And that’s dangerous.  There are reasons i cover for it.

But understand that I am always covering for it.  This never goes away.  It’s never not been there.  There are additional issues over the years what with delirium, but this happens all the time.  It happened to me pretty extremely this week because of an overly long, tense medical appointment.

And I’ve given you the simplistic version.  There’s a lot more to it than this.  Sorry for all the technical language, but it’s more precise than the language most people use for memory, and I needed that.  And I need to be more open about how my mind actually works.  There’s a lot of things I have trouble doing, or do very differently than usual, that I am always covering for out of fear.  I’m tired of covering for thm.

 

 

 

Posted in Things I try to hide

I hide what I don’t know when the blankness is huge.

A lot more of the time than I let anyone realize, most of the world is blank.  Most of what happened is blank.  Most of what is supposed to be background knowledge is blank.  Most of the past is blank. Lots of the present is blank.  Lots of things are blank.

And to let anyone know is terrifying.  Because I don’t want people to ever realize how much I sometimes don’t know at a given time.  I’m afraid of what would happen to me if people knew.

The world starts fresh over and over for me, fresh from a moment.  I start not knowing where I came from or what is happening and I wing it.  Over and over.  I am good at just acting in the moment and not letting on that I feel I just appeared in that moment.

Eventually, eventually it all filters down into awareness, memory, and I can write about it:   I just appeared where I am.  I don’t know how I got here.  I don’t know what led up to here.  Everywhere I look is blankness.  This is a common thing.

And I may not pass as not cognitively disabled but I sure as hell try to gloss over the extent.  And since people don’t expect such level of blankness it works in some circumstances.  I haven’t even managed to convey the half of it.  But I probably never will.  I’ve tried.  Hence this.

So what do I do?

Hold onto a familiar rock and hope that things beyond the rock will be familiar again one day and the world will expand again and not everything will be blank.

Photo on 6-18-18 at 6.24 PM.jpg

When I can remember the rock.