as small as a world and as large as alone, What is autistic catatonia?

3:03pm September 1, 2014

Anonymous asked: What is autistic catatonia?

adhdandcats:

neurodiversitysci:

withasmoothroundstone:

http://bjp.rcpsych.org/content/176/4/357.long

That’s the article that got me diagnosed.

Criteria for catatonia

There are no generally accepted standardised criteria for diagnosing catatonia. In this study, a diagnosis of catatonia was given when exacerbation of certain features of behaviour occurred in sufficient degree to interfere with movement and everyday functions of self-care, education, occupation and leisure. The essential features were:

increased slowness affecting movements and verbal responses;

difficulty in initiating and completing actions;

increased reliance on physical or verbal prompting by others; and

increased passivity and apparent lack of motivation.

Other abnormalities of behaviour often associated were:

e. reversal of day and night;

f. Parkinsonian features: tremor, eyerolling, dystonia, odd stiff posture, freezing in postures, etc.;

g. excitement and agitation; and

h. increase in repetitive, ritualistic behaviour.

Basically catatonic features exist in autistic people in general, most people don’t know what catatonia is, but it’s a complex condition affecting movement in complex ways, basically.

Here’s a description of catatonia compiled by Martha Leary and Anne Donnellan:

The possible connection between symptoms of movement disturbance and “mental” disorders was first discussed in 1874 by Ludwig Kahlbaum a German physician. A summary of Kahlbaum and others’ descriptions of patients can be seen in the list below. In the nineteenth century the term catatonia was used. Later, catatonia came to be defined more narrowly as a kind of schizophrenia characterized by absence of movement. Regardless of the terms used, there has been a continuing awareness of these behaviors in persons diagnosed with a variety of psychiatric and neurological disorders, including autism/mental retardation.

Characteristics of Catatonia

Simple Disorders of Movement

Repetitive movements — self stimulation, repeated actions

Abnormal facial movement — expressionless, flaccid or fixed expression, abnormal eye movements, grimaces, teeth grinding, facial tics, lip movements

Abnormal gait — too fast, slow, halting, peculiar, stiff walking

Mannerisms — posing, unusual manner of eating, tic-like movements

Blocking and freezing — lack of movement, difficulty starting movement, stopping during on-going movement, difficulty completing actions

Unusual postures — odd hand and body postures, flexion of neck, trunk or limbs

Abnormalities in muscle tone — too little or too much muscle tone, rigid, floppy

More Complex Disorders of Volition

Automatic obedience — excessive compliance, follows commands instantly

Echopraxia — forced imitation of another person

Lack of imitation — unable to imitate others

Negativism — does the opposite of what is expected or routine

Stripping

Extreme suggestibility

Difficulty initiating actions, postures, thoughts

Difficulty stopping or switching actions, postures, thoughts

Very Complex Disorders of Overall Behavior

General overactivity — continuous movement, difficulty stopping

Impulsiveness — action without consciousness of motives, easily aroused without inhibiting components

Frenzy — explosive or violent movement episodes

Destructiveness, aggression

Self mutilation

Extreme response to minor changes

Decreased activity — motionless, stays in one place for long periods, difficulty initiating

Decreased responsiveness — little or no response to others, aversion to contact with others, stupor or arrest, deepening and intensification of attention

Maintenance of postures — including thought and perceptual postures

Disorders of Speech

Vocal or verbal tics

Stereotyped verbalizations

Mutism — lack of speech or decreased use of speech

Slowness or delay in answering

Labored speech

Unusual vocal melody — lack of intonation, stereotyped intonation, monotone voice

Unusual loudness of volume — shouting, screaming, whispering

Disturbance of rhythm of speech — talks too fast, too slowly, with unusual stress patterns

Outbursts of speech

Swearing

Falsetto voice

Repeats names of places, cities, towns

Unmotivated laughter

Echolalia

Repetition of words, phrases, topics

Unintelliglble speech

(Sources include Kahlbaum (1874/1973), Bleuler (1911/1950), Abrams and Taylor (1976), Wing and Attwood (1987), Sacks (1990), Realmuto and August (1991), Lund, Mortimer, Rogers, and McKenna (1991), Johnson (1993).)

[…]

In contrast to the view that catatonia is a type of schizophrenia, the literature contains documentation of a wide range of causes of catatonia including infections (e.g., encephalitis lethargica, herpes simplex); vascular events; brain lesions; metabolic differences (e.g., porphyria, carbon monoxide poisoning); drugs (e.g., alcohol, neuroleptics, lithium); and epilepsy (i.e., non-convulsive epileptic status).

In Characteristics of Catatonia, above, we list some of the symptoms that have been associated with catatonia. Our interest is in understanding the symptoms, rather than the label, syndrome, or diagnostic category. Many of these symptoms have also been identified as problematic for people with labels of autism/mental retardation.

Most autistic people have some catatonic traits. But some autistic people develop more of them in adolescence, and that’s what the first article deals with. It can be slowly progressive, it can happen really fast, or it can be an intermittent thing. For me it was like a slow back and forth with things getting more and more difficult over time, but at any given time things could be fluctuating a lot. Like a wavy line going downwards overall but wavy over the shorter distances. I started showing signs when I was about 12 (and had some traits before that), but was not diagnosed until I was 20, which is when the above article came out and was brought to the attention of a psychiatrist who had known me for 6 years at that point.

A lot of behavior discussed when diagnosing autism (stimming, difficulty speaking and acting, compulsively imitating everything or not being able to imitate at all, echolalia, unusual intonation and volume of speech, “mutism,” lack of speech, lack of responsiveness to others, overactivity, impulsivity, suggestibility, repetitive movements…) sound like catatonia/movement difficulties that are described as if they were social or motivational problems. Go down the DSM list of traits and you will see a great deal of overlap. Why do we still see autism as a primarily social rather than sensory/motor disability?

Yes. I think that many of the social problems ultimately stem from overstimulation. When you are overwhelmed by the cool breeze and a bird passing above and slightly too-bright sunshine and two kids playing across the street and scratchy clothes and a bumpy tongue and the uneven sidewalk through your shoes and a faraway siren, it’s really hard to focus on someone else’s facial expression and also that person’s body position and also think about what those things might mean and also listen to the words that person is saying and also understand the literal meaning of the words working together and also interpret the subtext of the words working together with the facial expression and body position and past interactions with that person and also think of an answer to what the person said and also mentally check whether that answer conforms to a memorized set of social conventions relative to a brief chat with a neighbor at the mailbox and what you have inferred about the person’s mood and also edit the answer to better conform to those things and also coordinate your mouth muscles to make the sounds necessary to express the answer you formulated in your head within a reasonable interval (three seconds) of when the other person stopped talking.

The motor skills are also often a huge problem in autism. Evidence suggests that speech difficulties often occur with motor coordination problems. I think that speech difficulties in autism are usually a problem with coordinating mouth muscles rather than not understanding how words work. It would explain why so many people with autism can communicate well by typing, when the mouth muscles are out of the picture. If the problem were just not cognitively understanding how to use words, those autistic people would not be able to communicate with words in any medium. (I understand that there are probably a few autistic people who can’t expressively or receptively communicate with words at all, but I’m pretty sure that’s an extremely tiny minority.)

(I’m trying to move my conversations with Tumblr people to this blog. But it really bugs me that this is not about ADHD or cats. I can’t win.)

I think speech difficulties in autism can be very complicated. Like motor problems with the mouth are one aspect of it. But for me there was and is also the fact that I grew up with very screwed up receptive language, so all the expressive speech pathways that got made in my brain (as I imagine it, anyway – not being an expert in neurology) were made wrong. So that once I became old enough to more consistently understand words and use words to communicate, I was able to make the switch in typing, but I was never as able to make the switch in speech. (By “the switch” I mean, from using words in less consistently communicative ways, to using them in more consistently communicative ways.) I think having learned typing at an older age when my language skills were better had some part to do with it. But there’s also a huge part of autistic catatonia (a motor problem) in my speech problems. So it’s very complicated, nothing about it is simple.

It’s hard to even explain to people how screwed up things get when your expressive vocabulary and your expressive communication skills are superficially far ahead of your receptive vocabulary and receptive language skills. Which is how I tested from the age of five onward, and which is apparently classic for some forms of hyperlexia. Echolalia becomes a huge component of speech, speech does not necessarily get used for communication, and things get very, very tangled and weird in ways that you're really lucky if you ever find your way out of. I feel very fortunate that in my late teens, communication began straightening itself out. I have a friend with very similar speech development to mine (except not as severe autistic catatonia, so she still has some speech, although I honestly don’t think she ought to be using it given all the trouble it causes her), and she also experienced a period in her late teens when language came together for her.

I really wish that more autism research went into looking into the dynamics of things like this. Like it’s obvious when you have known enough autistic kids, that there are timetables for autistic development that are every bit as regular as timetables for nondisabled development. Not that there’s one single timetable for all autistic development. But for instance, the age of 4 is a very, very common age to start speaking. So common that if an autistic kid isn’t speaking before the age of four, I don’t even start worrying yet about their speech development, because it’s like a nonautistic kid not speaking at the age of four months or something, it’s just not an age where I expect a lot of autistic kids to have communicative speech.

Donna Williams had a pattern of cognitive development, which the ages at which she learned certain things, very closely map onto the ages when I learned certain things. Anne Corwin even more so, for me. And I see ages where autistic kids are hitting autistic milestones (including cognitive, motor, and perceptual milestones that don’t even exist for nonautistic kids) consistently at very similar ages. Or where like, one group of kids will hit them at one age and one will hit them at another but there do seem to be very standardized ages for things.

Unfortunately, most of the research out there, doesn’t even know what milestones to look for, let alone how to study them. They’d have to have a much more intimate understanding of what autism is like from the inside, which would require talking to extremely self-aware autistic people from a range of different subtypes of autism. By extremely self-aware autistic people I mean people who have made it a point to understand themselves on their own terms, and not just parrot back what the experts or their parents tell them about themselves. Which is hard, because even those of us who have made it a point to do this, are still biased by hearing all about what autism Really Is all the time. I find it very difficult to put my insights about autism into words, because I often need a model for words before I can use them on a concept (otherwise it can take me years to communicate about it), and often there is no model, there is nobody saying what I’m trying to talk about. And I know lots of other autistic people have this communication problem. So even when we have the insight, it can be like pulling teeth to pry the words out of us.

But I seriously think there’s a lot of important research that can be done into autistic development, autistic developmental milestones, autistic cognitive development (including language development), autistic motor development, and autistic perceptual development, that would revolutionize everything we think we know about autism. And very few people are even trying to do it, let alone succeeding.

The most exciting and interesting research I’ve seen has been attached in some way to either Laurent Mottron, Morton Gernsbacher, or Martha Leary and David Hill. (David Hill is on the spectrum himself and has early-onset atypical Parkinson’s, meaning possibly autistic catatonia – which is sometimes diagnosed as a parkinson-like movement disorder. So he’s helped Martha Leary a lot in their joint research into movement disorders and autism, and it was really exciting to see them give a talk once.) That’s not very many people. :-( Laurent Mottron is responsible for the Enhanced Perceptual Functioning model of autism, which unfortunately is cloaked in nearly impenetrable language despite having a lot of promise. Morton Gernsbacher has done a lot of work debunking bad autism science and showing the truth about autistic people. And Martha Leary and David Hill have done a lot of work on movement disorders in autism. Morton Gernsbacher is also a really good source if you want to find out about tiny bits of really interesting research being done in labs around the world, in a very scattered and haphazard way.

And also of course there’s AASPIRE, which is a group of autistic people who team up with autism researchers to do research relevant to our community. But so far that has been more on the disability rights end of things – such as, for instance, a study we did on medical discrimination, which we are following up with a study on a tool we’ve created to make it easier for autistic people to communicate with doctors about our needs. So this is quite necessary autism research we’re doing, but it’s not the same kind that I describe above, it’s not about finding out what autism is and how it works.

I may have gotten a bit off track here, I’m just way interested in real autism research and there’s so damn little of it out there.

Notes: