as small as a world and as large as alone, Temple Grandin is wrong, but she’s right about...

5:17pm October 24, 2014

Temple Grandin is wrong, but she’s right about more than I expected. (Image description is near the end of this post, it’s really long and I couldn’t put it up at the front.) Warning: This is a very long post, I can’t even read it myself, and the tl;dr summary at the end doesn’t completely cover it because I suck at summarizing. It’s taken me all week just to write it.

My relationship to her work has changed a lot over the years. I was diagnosed because of her. When I was diagnosed, I wasn’t told her name, and I wasn’t told my diagnosis, not right away. I was told, “You remind me of a woman I know. She doesn’t think in words either. She thinks in pictures. She can watch entire blueprints and make them run in real speed in her mind. And she designed most of the cattle handling facilities in the country, because of her ability to think outside of words.” Of course I’m not a picture thinker either, but I hadn’t got far enough communication-wise to convey that to this excited psychiatrist who was diagnosing me.

A little over half a year later, I got hold of a copy of Thinking in Pictures. I read it. Most of it went over my head in the same ways that words like autism and developmental disability went over my head at the time. But I rarely let that stop me from reading or listening to someone – if I did, I’d never read or listen to anything, because most words went over my head even at my best. But Temple Grandin’s words went over my head in a particular way that I didn’t learn to recognize as a pattern until I met lots of other autistic people much like her, who just think differently than me and their words go over my head a lot and that’s okay.

So that time, I didn’t even register all her stuff about autism subtypes and stuff. I was more keying in on the sensory issues, because that was what I could identify with most in any book by an autistic person. And she had gone beyond what most autistic people did – she’d written about the sensory issues of autistic people other than herself – Jim Sinclair, Donna Williams, Therese Joliffe, to name a few I vaguely remember. People whose sensory issues were much more complex than “this kind of input feels like nails on a chalkboard” – which gets old after awhile, when the “nails on a chalkboard” thing is all you hear, with occasional hyposensitivity thrown in.

Jim Sinclair and Donna Williams, Lucy Blackman and Tito Mukhopadhyay, these are people in whose sensory experiences I can see myself. And she wrote about people other than herself, and that put her a step above other autistic authors of the time for the most part. Donna Williams also wrote about people other than herself. But Donna Williams – like me, and unlike Temple Grandin, is very subjective in how she evaluates other autistic people, and sometimes that’s to our advantage and sometimes it’s very much not and can even cause trouble. I don’t think Temple Grandin is as objective as she believes herself to be, but she tries, and it does make a difference. Anyway, so the first time I read Thinking in Pictures, I really didn’t register most of it. My eyes went through the words and like a good classic meaning-blind hyperlexic I didn’t really take much of it in.

The next time I read it, I had progressed to the point where I was realizing I was autistic, but I thought everyone else autistic was both more authentic and more authoritative than I was. So I took her words on a lot of things as gospel. And then I moved into the phase where I got royally pissed off about functioning labels (I’m still in that phase), and there was a section of her book that made me so angry I couldn’t read it. So I didn’t, much, except when torturing myself. I just reread it again today and she’s onto something for once. She hasn’t got it right by a long shot, but she’s actually seeing something I’ve seen.

She sees the autistic spectrum as a continum from the “Kanner/Asperger type (usually HFA)” of autistic person, to the “Regressive/Epileptic type (usually LFA, and bizarrely enough neither epilepsy nor regression are required elements of this type she’s made up)” of autistic person. Given my dislike for functioning labels and one-dimensional spectrums, you can see why this would just piss me off too much to want to read about it, for years. But. Something is real here. She talks about “Kanner-Asperger” autistic people as people who differ greatly from the norm in cognition and often in emotion. But their sensory issues tend to be limited to a few hypersensitivities or hyposensitivities. Often, like Temple, their emotions are ‘simplified’ – she feels joy,anger, etc. but not complex emotions.

My brother could be the poster boy for the Kanner-Asperger type.

Then she describes the regressive-epileptic type as having potentialy a much more normal and complex form of emotions, but with severe sensory scrambling that means that these things don’t get expressed. She also mentions severe receptive language problems stemming from the severe sensory chaos. She put herself very near the Kanner-Asperger end, and Donna Williams about midway in between the two ends. The only person she put very near the Regressive-Epileptic end at all was David Eastham. I was glad to note that she’d heard of him (he’s the first autistic person to publish as an autistic person, ever, as far as I can find) but puzzled sometimes by her choices of where to put people. Anyway, I have traits of both types, but I identify way more with Regressive-Epileptic than Kanner-Asperger.

I also love how she uses Kanner-Asperger to mean high functioning. I don’t like the idea of high and low functioning, but if you have to use it, then Kanner is as hgih functioning as Asperger ever was. In terms of his patients I mean. Most people just haven’t read about them with their normal to high IQs, going to college, and all that. They assume – and this assumption seems to be somewhere around 15-30 years old – that Kanner autism means low functioning autism. That’’s not how the term Kanner was used in the literature, and I should know, I’ve done enough time reading that literature in university libraries. It was frequently used to mean high functioning.

And I like that Kanner and Asperger are put together like that, because they really were looking at the same, or at least a highly overlapping,, group of people. I do have to WTF at the name Regressive-Epileptic. If I were to give names to these two types of autism, I would call one Cognitive-Emotional and the other Sensory-Motor. In fact, I’ve been working on trying to write something up about the way autism varies. And I already had it divided up into Cognitive, Emotional, Sensory, and Motor as far as the four main areas autism affects. Then I was going to write up the huge number of ways that autism can affect each area, and the way the areas can combine.

Temple Grandin’s Kanner-Asperger group is meant to be people whose main autistic differences are in cognitive and emotional areas: Concrete thinking Rigid thinking. Flat affect. Uncomplicated emotions. If motor problems are present, they’re generally coordination problems – gross motor or fine motor. If sensory issues are present, they’re generally uncomplicated hypersensitivities or hyposensitivities. Most autistic people have differences in all four areas, regardless of what type of autism they have, but it’s a matter of degree.

Meanwhile her Regressive-Epileptic type is supposed to be people with enormous sensory problems that dominate everything, as well as possibly much more complex motor problems. And severe receptive language problems. When I’ve been describing “my type of autism” over the years, I’ve inadvertently been describing lots of traits that go with this subtype. The sensory issues this group deals with aren’t “birdsong makes my ears hurt,” it’s more like “everything is a complete jumble of sensory information that I can’t even make sense of” combined with “I have to use conscious effort to make sense of sensory information”. Motor problems are likely to be complex motor planning problems of the sort you see with autistic catatonia: A person may have seemingly perfect coordination, balancing on fences like a cat, but then be unable to type or feed themselvees. This is because coordination is different from the sorts of motor problems that this sort of autistic person tends to have. And as Temple Grandin says, cognitively and emotionally the person may actually be much more “normal” than in Kanner-Asperger autistic people. They may have much more cognitive flexibility, for instance, and much more complex emotional states.

What I’d want to do if I were doing this: Cognitive. Emotional. Motor. Sensory. Then list a long list, under each one, of traits that can be associated with each, in autistic people. Given the way autism works, that would likely mean that each trait would have an opposite trait listed, that was just as much an autistic trait as the first one. And then there might be some list of the way that these traits interplay with each other, because in reality these are not totally separate domains of thinking, they all overlap and intertwine with each other in the functioning of the brain..

I do wonder if there’s a reason that Cognitive-Emotional and Sensory-Motor seem to clump together so often, though. Because the more I read about her take on all this, the more I realize I’ve seen these two configurations more than I’ve seen other configurations. It’s like one configuration has to do with the inner thoughts and feelings of the person,, and the other one has more to do with the input–output systems. But even so, every autistic person I’ve ever met has had differences in all four areas. It’s a matter of degree.

And that’s why even Temple Grandin, who tends to oversimplify things in any way she can, has put theem on a continuum to show that people can have traits of both. Of course reality is much more complicated. There are more than two types of autism on a continuum with each other. Each area that can be affected, can be affected in many ways. A person can move between different “types of autism” throughout their lifespan or throughout a day. These aren’t fixed traits. They interact with one another in extremely complex ways. Etc. Anyway…

Here’s what Temple Grandin writes about her ideas on these subtypes by the way:

These subtypes are on a continuum that merges together. Information in the table is based on scientific literature and interviews with autistic people, teachers and parents.

Kanner/Asperger Type (High Functioning)

* No obvious motor problems, but some Asperger Types tend to be clumsy. * Have receptive speech and can understand what is said to them (Grandin, 1986). * Many children with partial receptive speech are echolalic. They repeat phrases because they only hear parts of them.

* Sensory over-sensitivity to sound, touch, or visual stimuli (Grandin and Scariano 1986; Grandin 1992, 1995; Stehli 1991; Volkmar and Cohen 1985; Bemporad 1979).

* Seldom have epileptic seizures and EEG readings are usually normal, but may have cerebellar abnormalities (Courchesne et al. 1988; Bauman 1991). Brain stem development is more normal.

* Rigid concrete thinking, no common sense, and lack of affect (Kanner 1943; Asperger 1944; Hart 1989; Bemporad 1179).

* Young children respond well to gently intrusive teaching methods, such as forced eye contact; and some three-year-old children respond well to intense intrusive methods (Lovaas 1989; 1993).

* Afraid of certain noises because they hurt the ears, but may be attracted to other sounds and visual stimuli, such automatic sliding doors or flushing the toilet. * Some individuals may have severe anxiety problems (Grandin 1986; 1992l 1995; Volkmar and Cohen 1985), while others are calm (Hart 1987).

* Teenagers and adults often respond to low doses of anti-depressant drugs, such as clomipramine and fluoxetine. Clomipramine is the recommended first choice if the individual has severe obsessive-compulsive symptoms. Fluoxetine has fewer uncomfortable side effects and is preferred by many individuals. These medications are usually not recommended in children unless there is a severe behavior problem that does not respond to sensory

Regressive/Epileptic type (Often low functioning)

* Sometimes have obvious body movement problems or difficulty with stopping and starting hand movements.

* No receptive speech (Allen and Pain, 1992), or incoming speech sounds may fade in and out. In severe cases, incoming speech may be a jumble of sound. More likely to be mute (Volkmar and Cohen 1989). May have difficulty determining speech is used to communicate (Joliffe 1992). * Sensory information from the different senses may jumble and mix together into noise or patterns (Sands and Ratey 1986; Cesaroni and Garber 1991; Painter 1992). Very slow sensory processing (Gillingham 1995). May learn best by touch. Give them letters and objects to feel.

* Often have epileptic seizures, abnormal EEG readings, undersized brain stems, and immature central nervous system development (Gedye 1991; Hashimoto et al. 1992; McClelland et al. 1992; Bauman 1991; Bauman and Kemper 1994; Canter et al. 1986).

* May have more normal thinking and emotions (Cesaroni and Garber 1991; Williams 1992, 1994).

* Respond poorly to intrusive methods due to sensory overload (Williams, 1993). When they become stressed or overstimulated, incoming stimuli becomes jumbled and mixed together. Intrusive teaching methods that work with young Kanner/Asperger children may cause confusion and pain.

* May be able to attend to only one sensory channel at a time. During teaching, distractions should be minimized and information should be presented to only one sensory modality (Cesaroni and Garber 1991; Williams 1993). Will actively avoid sounds and stimuli that may be attractive to less severely afflicted individuals.

* Some individuals have severe anxiety problems.

*Teenagers and adults with rage and aggression tend to respond best to inderal, clonidine, fluoxetine and buspirone. Epilepsy medications such as carbamazepine and valproic acid are also helpful. In children, B6 and magnesium and DMG are some- times helpful. If speech fails to develop by age four, ethosuximide or valproic acid may helpful. (Pliophys 1994, Gillberg 1991).

Image Description (with sources)

Also, here is a very long but accurate image description for the image I used above. I’m putting it at the end because it was too unwieldy to put at the front: There’s a line drawn across the screen, from left to right, showing a spectrum of autistic people.

On the left end of the line, there’s a big label saying “Classical Kanner’s/Asperger’s Syndrome."

Underneath that in smaller letters and parentheses, it says ”(Asperger 1944; Kanner 1943).

On the right end of the line, there’s a big label saying “Nonverbal, low functioning Regressive/Epileptic Usually lose speech at 18 to 24 months”. Above that, in small letters after three asterisks, it says “*** There are some regressives that partially recover and become verbal."

So there you have the basic outline of the chart.

Now there are notes written below the graph about the characteristics of Kanner/Asperger autism versus Regressive/Epileptic.

For reasons I can’t figure out, each characteristic is written about below a set of arrows pointing in one direction or the other.

The first set of arrows starts at Kanner/Asperger and leads to the middle of the graph. Underneath it are the words; Sensory processing problems and ability to comprehend incoming speech worsen at the Regressive/Epileptic end of the continuum.

The second set of arrows is in the same position as the first one. Underneath it is written: Emotions and affect may normalize as one moves away from the Kanner end of the spectrum.

The third set of arrows is the same as the other two. Underneath it is written: More likely to have epileptic seizures and more abnormal results on neurological tests (Hashimoto et al. 1992) (McClelland et al. 1992) at the Regressive/Epileptic end of the continuum.

The fourth set of arrows starts at the Regressive/Epileptic end, and points left until it reaches the middle of the line. It reads: Thinking becomes more rigid and concrete as one moves toward the Kanner end of the spectrum.

And underneath everything else is written: "Fig. 8-1. Autistic continuum. Position of people described in published literature on the continuum."

The following is a full list of the footnotes referred to in that graphic, in case anyone wants to go look any of them up:

* Hart, C. (1989). Without Reason, New York: Harper & Row.

* Park, C. C. (1967). The siege. Boston, MA: Little, Brown.

* Bemporad, M. L. (1979). Adult recollections of a formerly autistic child. journal ofAutism and Developmental Disorders, 9, 179-197.

* Grandin, T. (1992a). An inside view of autism. In E. Schopler and G. B. Mesibov (Eds.), High functioning individuals with autism. (pp. 105-126). New York: Plenum Press.

* Volkmar, R. R., & Cohen, D. J. (1985). The experience of infantile autism: A first person account by Tony W. journal of Autism and Developmental Disorders, 15, 47-54.

* Stehli, A. (1991). Sound of a miracle. New York: NY: Doubleday.

* Cesaroni, L., & Garber, M. (1991). Exploring the experience of autism through first hand accounts. journal of Autism and Development Disorders, 21, 303-312.

* White, G. B., & White, M. S. (1987). Autism from the inside. Medical Hypothesis, 24, 223-229.

* Williams, D. (1992). Nobody nowhere. New York: Time Books.

* Painter, K. (1992, November 11). Autistic and writing close the gulf. USA Today, Section 0, p. l.

* Lewis, 1. (1993). [Letter to the Editor]. The Maap, Crown Point, IN. pp. 3-

* Eastham, M. (1990). Silent words, forever friends. Ontario, Canada: Olive

* Asperger, H. (1944). Die Autistischen Psychopathen im Kindersaltr, Archive fUr Psychiatier Und Neruenkrankhieten, 11776-136. Translated by U. Frith, Autism and Asperger syndrome. Cambridge University Press, 37-92.

* Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217-250.

* Hashimoto, T., Tayama, M., Miyazaki, M., Sakurama, N., Yoshimoto, Tsutomu, Murakawa, K, & Kurodo, Y. (1992). Reduced brain stem size in children with autism. Brain and Development, 14, 94-97.

* McClelland, D. G., Eyre, D., Watson, G. J., Sherrard, c., & Sherrard, E. (1992). Central conduction time in autism. British Journal of Psychiatry, 160, 659-663.

TL;DR: Temple Grandin at one point divided autistic people into a continuum between "Kanner-Asperger” types and “Regressive-Epileptic” types. I think she gets a lot wrong, but gets a surprising amount right. I would divide the areas affected by autism into Cognitive, Emotional, Sensory, and Motor. Her Kanner-Asperger would be my Cognitive-Emotional,, her Regressive-Epileptic would be my Sensory-Motor. Of course all autistic people are affected in all four areas, it’s just a matter of degree. I’m just shocked to find something in her writing that I agree with this much despite the flaws.