The very idea that autism appears in any book called the Diagnostic and Statistical Manual of Mental Disorders is deeply offensive to me. When I venture in and try to make sense of the current split between the diagnostic criteria for Asperger’s and autism, all I can see is that it places autistic people into hierarchies that make no logical or practical sense.
Because this whole subject is really bothering me, I thought it might be fun to rewrite the diagnostic criteria, line by line, so that the text describes us as something more than walking collections of mysterious pathologies. In my rewrite, I have maintained each line of the diagnostic criteria with a strikethrough, followed by my proposed changes. Because the people who wrote the diagnostic criteria reused some of the same text, but didn’t bother to create a consistent numbering scheme, I couldn’t combine the criteria for Asperger’s and autism without adding more illogic to the situation. In a perfect world, people would check their writing for logical consistency before they publish it. Since they didn’t, my rewrite consists of two parts.
Part One
How to Tell Whether Someone is an Asperger’s Awe-tistic
Diagnostic Criteria for 299.80 Asperger’s Disorder
(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
(I) An unusual mode of social interaction, as manifested by at least two of the following:
(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(A) An acute sensory and empathic sensitivity that i) makes eye contact and social interaction intensely difficult and ii) results in the rejection of ambiguous nonverbal behaviors in favor of direct, detailed, and honest speech.
(B) failure to develop peer relationships appropriate to developmental level
(B) Beginning in early childhood, a gift for developing relationships with people of widely different ages and developmental trajectories.
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(C) The understanding, gained uncannily early in life, that i) most people will not appreciate the awe-tist’s interests or achievements, and ii) showing, bringing, or pointing out objects of interest will be met with judgment and/or hostility that manifest in socially acceptable forms of repression (such as social exclusion) or criminal acts (such as physical assault).
(D) lack of social or emotional reciprocity
(D) An acute sensitivity to the feelings of others that causes the awe-tist to refrain from using banal pleasantries or empty words that may hurt or offend.
(E) An altogether eccentric form of social and emotional reciprocity that insists upon fairness, directness, sensitivity, tolerance, substance, acceptance of difference, and mutually interesting subject matter.
(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
(II) Specialized, disciplined, and brilliantly useful patterns of behavior, interests, and activities, as manifested by at least one of the following:
(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(A) A passion for one or more specialized subjects extraordinary in intensity and focus.
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(B) An innate capacity for self-care that manifests itself in the creation of comforting routines and a fascination with patterns of all kinds.
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(C) An innate capacity for sensory self-regulation by means of various stims, which can encompass such soothing activities as joint compression, touching the comforting texture of soft fabrics, watching spinning objects, and so forth.
(D) persistent preoccupation with parts of objects
(D) An exceptional ability to work with objects in an unconventional fashion.
(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
(III) Because the world is not yet attuned to the acute sensitivities and extraordinary gifts of awe-tistic people, being awe-tistic can result in social ostracism, occupational dead-ends, and other disappointing outcomes. For the lives of awe-tistic people to improve, early educational and social intervention in the lives of neuro-typical people is recommended.
(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)
(IV) Whether you started talking at two years old or four years old, does it really matter?
(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.
(V) We are certain that in a different time and culture, awe-tistic people would have places of honor as shamans, dreamers, healers, artists, builders, and trusted confidantes.
(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
(VI) The person’s awe-tistic consciousness is not better accounted for by some other type of hierarchical hair-splitting that results in diagnosing life itself as a kind of disease.
Part Two
How to Tell Whether Someone is Awe-tistic, Period
Diagnostic Criteria for 299.00 Autistic Disorder
(I) A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C):
(A) qualitative impairment in social interaction, as manifested by at least two of the following:
(A) An unusual mode of social interaction, as manifested by at least two of the following:
(1) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(1) A lack of reliance on the use of ambiguous nonverbal behaviors.
(2) failure to develop peer relationships appropriate to developmental level
(2) A love of solitude and solitary play.
(3) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(3) The understanding, gained uncannily early in life, that i) most people will not appreciate the awe-tist’s interests or achievements, and that ii) showing, bringing, or pointing out objects of interest will be met with judgment and/or hostility that can manifest in socially accepted forms of repression (such as social exclusion) or criminal acts (such as physical assault).
(4) lack of social or emotional reciprocity
(4) An acute sensitivity to the feelings of others that causes the awe-tist to refrain from using banal pleasantries or empty words that may hurt or offend.
(5) An altogether eccentric form of social and emotional reciprocity that insists upon fairness, directness, sensitivity, tolerance, substance, acceptance of difference, and mutually interesting subject matter.
(B) qualitative impairments in communication as manifested by at least one of the following:
(B) qualitative differences in thought and perception as manifested by at least one of the following:
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
1. Visual and associative thought patterns that the awe-tist has difficulty translating into the more restrictive medium of verbal language.
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
2. An acute sensory and empathic sensitivity that makes spending extensive periods of time with people intensely difficult.
3. stereotyped and repetitive use of language or idiosyncratic language
3. An effort to use language despite the tremendous challenge of transitioning between visual/associative thinking and verbal/linear expression.
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
4. The development of all kinds of unique, idiosyncratic, and interesting ways to spend one’s time.
(C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
(C) Specialized, disciplined, and brilliantly useful patterns of behavior, interests, and activities, as manifested by at least two of the following:
(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(1) A passion for one or more specialized subjects extraordinary in intensity and focus.
(2) apparently inflexible adherence to specific, nonfunctional routines or rituals
(2) An innate capacity for self-care that manifests itself in the creation of comforting routines and a fascination with patterns of all kinds.
(3) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(3) An innate capacity for sensory self-regulation by means of various stims, which can encompass such soothing activities as joint compression, touching the comforting texture of soft fabrics, watching spinning objects, and other similarly enjoyable activities.
(4) persistent preoccupation with parts of objects
(4) An exceptional ability to work with objects in an unconventional fashion.
(II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
(A) social interaction
(B) language as used in social communication
(C) symbolic or imaginative play
(II) Because awe-tistic people often see the world in unusual ways, the difficulty of translating awe-tistic consciousness into the more restrictive medium of verbal language may result in the pathologizing of awe-tistic social interaction, language development, and play.
(III) The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder
(III) The person’s awe-tistic consciousness is not better accounted for by some other type of hierarchical hair-splitting that results in life itself becoming a kind of disease.
© 2009 by Rachel Cohen-Rottenberg
Rachel, you are awesome! I love this post!
That … is indeed awesome.
You know what’s funny? I only barely fit the DSM-IV criteria, and despite the support of my psychiatrist I just cannot convince my family that I’m on the autism spectrum. But with your re-written criteria, it’s obvious.
(Although I strongly suspect that, sadly, my family will not accept your rewrite either. But regardless, I’m happy to have it!)
definitions that i’m a lot more comfortable with than DSM. i understand that classifying people is a way of trying to understand, i just don’t see the point if the people being classified aren’t consulted in any meaningful way. the DSM criteria seem to be another case of ‘majority rules, you’re fucked up’. i mean, i totally get that it’s unrealistic to expect regular folks to understand me, but i would at least have benefited from more understanding from my teachers, parents and people i wanted to make friends with. the DSM as written doesn’t give me any place to go explain things to these people, as i usually try to do.
then again, it was within my short lifetime that there were grossly inaccurate criteria/descriptions of my homosexuality in the DSM or similar, with a familiar slant. most days, though, it seems too much to hope for a world that is increasingly more inclusive of diversity. that the economy is in the crapper makes things worse, as people withdraw and shore up their defences, and don’t feel they have time for understanding others.
great post
Brilliantly written . Refreshing to have a bit of direct communication with out the emotional language loading, (and preconceived notions of those writing the criteria who assume that their nurology is the best ) . Reading most of the pathologising by “professionals” who write about autism, reminds me of the kind of ethnocentric writing that we were taught to mock in collage for their obvious inaccurate biases in labeling other cultures as “Primitive” . “Neurocentric” is the label I hope we see when the next generation reads the “old” descriptions of autism .
When I went for my DX and the DR asked about if I shared my interests with others, I told him that I had learned by the age of 6 that no one actually cared to see the rocks, bugs, fossils or bark I had found so I stopped showing them . (Being persistent by nature, I do have to keep relearning this lesson and am still caught off guard when people don’t want to know the basic differences of wool breads.)
Thanks for the rewrite .
Neurocentric: That’s exactly the word for the vantage point of most of the “experts.” Perfect!
Excellent!
I twittered it to give more visibility
https://twitter.com/lizditz/status/6906506001
Thanks, Liz!
Whoaa! So great post Rachel! I think I will print this off for the Psychiatric Nurse who is coordinating the efforts to diagnose our son…He would appreciate it, I must say. also the teachers…May I? Of course crediting you as the author. I just love this.
Johanna, feel free to print it out and pass it around to anyone who can use it. Glad to help!
Yes I too am going to print it and give to all of my preschool teachers as a guide. They are all wonderful and will surely appreciate the re-write for all of our little awe-tistic ones we work with and highly adore.
Sue–That’s wonderful!
Here late, but I’ve got to say I love this post. I am teetering on the edge of self-diagnosis, but was put off by the DSM definition. Your rewrite has described me perfectly. <3
Alex, I’m so glad this post helped. It’s hard enough navigating in the world with autism; being told that we’re just a collection of broken parts is not exactly the sort of support we need. So it’s fun to turn things around and tell it like it really is.
Just brilliant. So glad you shared on Dave’s blog.
Thanks, Tamara!
I love your post. I like how your critera highlight the differences using positive or neutral examples and without the usual negative language. So much of what people currently label disorders or disabilities are really just differences.
Only complaint:
> (V) We are certain that in a different time and culture, awe-tistic people would have places of honor as shamans, dreamers, healers, artists, builders, and trusted confidantes.
You need to add scientists, engineers, computer programmers, inventors, and other technological wizards. Animal empaths seem to be a common theme as well (re: Temple Grandlin)
(C) The understanding, gained uncannily early in life, that i) most people will not appreciate the awe-tist’s interests or achievements, and ii) showing, bringing, or pointing out objects of interest will be met with judgment and/or hostility that manifest in socially acceptable forms of repression (such as social exclusion) or criminal acts (such as physical assault).
Whoa x100!
I couldn’t particularly identify with this one the first time I saw it, but in the two days since I have been noticing it all the time!
If someone asks how I am or how my day was, it seems like the first things that come to mind (Great! I listened to obscure music on Youtube and there was a bird in the tree outside my window!!) are really not the “right” answer. Bright idea: maybe I’m working against myself by having one kind of life with its particular values, and always trying to “fit in” and look like I’m living another one entirely?
Good post.
[...] Why I dislike “person first” language and Rachel Cohen-Rottenberg’s If I Could Re-write the DSM-IV Criteria for Autism. Soon after this I read more of Rachel’s blog, and discovered Am I More Than My Autism? I [...]
Thank you!!!
I am from Brazil and I am a student of psychology and attend two patients with Aspergers and your blog has helped me a lot, thank you for being able to put into words your feelings.
Renata
I’ve read so many books that describe being on the spectrum in negative terms (yet clearly consider themselves to be taking a clinical objective approach). I’ve badly wanted to write something that describes NTs to people on the spectrum in such terms.
e.g.
A nearly pathological preoccupation with other people’s opinion of themselves even when such an opinion is clearly uninformed, counterproductive and/or self limiting.
The trouble is it’s hard to write such a thing without it coming off as “sour grapes”. Your post rode the line on “sour grapes”. Though use of the phrase “awe-tistic” kind of pushed it over the line.
It may be enough to get some people to sit up and take notice.
[...] Cohen Rottenberg blogs at Journeys with Autism. If I Could Rewrite the DSM-IV Criteria for Autism appears here under the terms of this Creative Commons [...]
[...] Cohen-Rottenberg blogs at Journeys with Autism. If I Could Rewrite the DSM-IV Criteria for Autism appears here under the terms of this Creative Commons [...]
This is so true. The DSM criteria is so rigid. Each individual, autistic or not, is different in their own behaviours. That’s why it’s becoming difficult to diagnose people with it. Lots and lots of people will go undiagnosed even when they know they had it. Yess!! Neuro-typical people need to be educated instead of wandering around labeling others as weird or loners or retarded.
hi i have autism an learing disiblitys i try reading your blog it alot i cant write or read like that i got some of it /.buit your way closer to nt land them most of my friends .i struggle with alot of social stuff an need scripts to get by so i dont sound dumb or insentived an i struggle with theroy of mind i have a haerd time understand all that stuff .im an artist now an do gust gust speaking to parent an teacher on how an what help me out ofg the darkenness of autism to become a hf persons though im not cklose to nt think i can poass sometime witch is more then before but there are alot of parent on these site who get mad when we voice are oppion like we have none maybe they dont want to nio how there kids feel /.it really there loss
This is incredible and gave me goosebumps. I am in awe with an awe-tist. He is bright, funny, quirky, interesting, deeply ecological and is one of the most self-aware people I’ve met. While we’re at it, I can’t think of a single person in my life who I would consider “neuro-typical.” This whole system needs challenging. Thank you so much for this post!
This is fantastic. I wish all the so-called ‘experts’ could read it, and turn their pre-conceived notions around.
Oh, and i am going to put a link on my blog about it, and my FB page. Hope that’s okay with you Rachel.
Of course! Please, go right ahead.
Rachel,
I love this and God knows I am extremely grateful for you on so many levels! I am going to post this to my fan-page wall on Facebook.
you are awesome
The feeling is mutual, K.
Finally someone says it in a non-society kind of way. Thanks. This explains me to the fullest!
I am afraid though. I have been waiting a long time to get insurance so I can go get diagnosed and I really need it. :/ Why are they trying to get rid of the diagnosis? Don’t they understand that a lot of people could really use it and get the help they need?