Wednesday, January 19, 2011

Newson Syndrome Possible Criteria

Newson Syndrome, also called Pathological Demand Avoidance Syndrome, is a suggested subtype of autism. It was described by Elizabeth Newson, and it's the type that best describes me.

The problem: She hasn't said how to diagnose it.

Sure, she's published criteria for the condition, but if you look at her reports, it's clear that not all of these kids meet every single criteria. (In fact, it's doubtful if any do.) She does say that all of them show 'manipulative demand avoidance', but doesn't state how many other traits are needed for diagnosis. And I can think of children with manipulative demand avoidance who are clearly not Newson Syndrome kids - some psychopathic children for example.

I'm planning to do some research into Newson Syndrome on my own as part of my psychology training, but since this condition is mostly only diagnosed in England, and I'm not planning to travel to England anytime soon (I'd love to, but I can't afford it), I'm going to need to diagnose children with Newson Syndrome myself. So I need clear criteria.

Fortunately, at the end of Newson's most detailed report on this syndrome, she provides a table of information on 21 children, all diagnosed with Newson Syndrome. Based on these kids, I've thought up several possible criteria to diagnose Newson Syndrome. When I start doing my own studies, I'll determine which of these systems works best, but for now, here they are. (If you're a researcher interested in Newson Syndrome, feel free to try these out.)

System 1 (a & b):

Universal features:
  • resists demands, using at least one manipulative strategy (ie not solely through straightforward refusal, ignoring or social withdrawal) - examples include distracting the adult, making excuses, faking inability, asking repetitive questions, delaying, etc
  • poor social skills when interacting with other children
  • at least some pretend play (only if age 6 or older, three had not yet developed pretend play at 3 years old)
Associated features:
  • switching between love/hate or showing both at once - switching between timid and rude, hugging mother while saying 'I hate you' in a pleasant voice, demanding mother's presence and then attacking her when she comes, etc
  • comes on too strong - too much eye contact, hugging people they've only just met, stroking other children, etc
  • echolalia (also seen in regular autism) - more often seen when very young, or when under stress
  • clumsiness (also seen in regular autism) - gross motor often worse than fine motor
  • identity issues - this one's hard to define, but examples would be never feeling embarrassed, 'doesn't seem to know he/she's a child', confused by mirrors or shadows, treating multiple people as if they're one person (one boy with younger twin brothers called them both 'the twin' without indicating which one he meant), etc
  • speech delay (also seen in regular autism) - often accompanied by a sudden 'catch-up' in late preschool years
  • passive in infancy
  • musicality - talent and/or interest in music, often first noticeable in infancy
  • sociability - when interacting with adults, the child seeks out interaction as much or more than most kids, although many show much less sociability in groups or towards other children
  • lots of pretend play, and/or mimicry or role-playing - they play pretend much more than most kids their age, treat pretend play more seriously (as if real), mimic other people, and/or act out roles such as teacher, disabled person, bartender, etc in social interaction
  • jargoning (also seen in regular autism) - they babble or string words together nonsensically, often seen in kids who can also speak normally
Diagnostic rule 1a - all universal features plus at least 3 associated features

Diagnostic rule 1b (for distinguishing from regular autism) - don't count the four associated features marked as 'also seen in regular autism'; all universal features plus at least 2 associated features

System 2 (a, b & c):

(Especially for distinguishing NS from regular autism.)

For each criteria, classify child as 'NS', 'autistic' 'other', 'NS/autistic' or 'NS/other' based on their mix of features. If their predominant picture is not listed here, count it as other.

1. Infant development (birth to 2 years):
  • passivity (NS) - child is inactive, doesn't show interest in playing, doesn't show much emotion, limp handed with toys, etc
  • lack of social response (autistic) - child avoids eye contact, doesn't socialize, resists physical contact, etc (if child's unresponsiveness seems due to passivity, don't count it)
  • irritable (other) - child cries a lot, seems easily upset, poor sleep (can coexist with passivity)
  • hyperactive (other) - child is busy, highly active, very curious, etc (may alternate with passivity)
  • normal (other) - child doesn't show any of the above, or any other abnormalities in behavior
2. Reaction to demands:
  • demand avoidance (NS) - child rarely, if ever, complies with direct commands
  • manipulative (NS) - child uses manipulative strategies to avoid demands, eg distracting adult, faking inability, etc
  • direct refusal (autistic) - child says 'no', shakes head, or otherwise clearly communicates refusal
  • compliant (autistic/other) - child usually complies with direct commands (the opposite of demand avoidance)
  • ignores (autistic) - child acts as if he/she hasn't heard the command
  • tantrum behavior (aggression, crying, etc) is seen in both regular autistic and NS children, and so is not counted
3. Social interaction:
  • sociable (NS)
  • identity issues (NS) - parents say 'doesn't know he/she's a child', confused by mirrors or shadows, etc
  • comes on too strong (NS) - excessive eye contact, overly familiar, etc
  • aloof (autistic) - ignores or rejects social advances and rarely initiates social interaction (the opposite of sociable)
  • poor nonverbal communication (autistic) - lack of eye contact, flat facial expression, lack of communicative gestures, etc
  • variable sociability (other) - sociable only towards certain people or in certain situations
4. Mood, attention and consistency:
  • mood swings, switching between love/hate (NS)
  • strong need for routine (autistic)
  • consistently distractible (other)
  • distractible only in certain situations (NS) - usually poorest attention when demands are made, best attention in areas of interest such as role-play
5. Pretend play and role-playing:
  • plays pretend (NS) - child spontaneously acts out events and/or stories using objects and/or self
  • role play/mimicry (NS) - child imitates another person (not just echolalia) or reacts in a situation as if they were someone else, often the child can describe who they're being
  • echolalia (autistic) - child repeats a word or phrase heard, immediately or after some delay
  • no pretend play or scripted pretend play (autistic) - child either does not play pretend, or acts out the exact same thing over and over (scripted pretend counts for both this and pretend play)
  • confuses reality and pretend (NS) - child seems confused by pretend objects, treats them as if real to an excessive degree, shows fear/ambivalence about pretend, etc
6. Speech development:
  • speech delay (counts as either NS or autistic, if sole feature rate as 'NS/autistic')
  • speech anomaly (autistic) - pronoun reversal, speech regression and/or other autistic language features not counting echolalia
  • catch-up speech (NS) - after initial speech delay, child's rate of speech development suddenly speeds up
  • repetitive questions (NS) - most commonly due to demand avoidance
  • normal or advanced language development, without any of the above abnormalities (other)
7. Obsessiveness (note: both role-playing and demand avoidance are typically obsessive, but are counted elsewhere):
  • social obsession (NS) - harrassing a certain person, obsessive interest in certain people or categories of people (eg public figures, disabled people), etc
  • order, sensory or informational obsession (autistic) - lining up toys, listening to music, numbers, etc (in children with multiple obsessions, can coexist with social obsessions)
  • not obsessive, or only demand avoidance and/or role-playing obsessions (other)
8. Neurological involvement:
  • clumsy (counts as either NS or autistic, if sole feature rate as 'NS/autistic')
  • normal/agile (autistic/other) - the opposite of clumsy
  • skipped crawling (NS) - child either went straight from sitting to walking, or used some replacement for crawling such as bottom-shuffling
Diagnostic rule 2a - criteria 2 must be 'NS', 'NS/autistic' or 'NS/other'; count up all other criteria with 'NS' scoring 2, 'NS/autistic' or 'NS/other' counting 1, and 'autistic' or 'other' counting 0; score of 5 or more means NS

Diagnostic rule 2b - same as 2a except criteria 2 also counted; score of 7 or more means NS

Diagnostic rule 2c - counting all criteria, child must score 'NS' on at least one and either 'NS', 'NS/autistic' or 'NS/other' on at least 5 criteria; criteria 2 must be 'NS', 'NS/autistic' or 'NS/other'

3 Comments:

Blogger Adelaide Dupont said...

It would be good to look at alternative inventories, like the Psychodynamic and the Chinese classification of mental conditions [which latest revision was done in 2001]. I do know that Newson is diagnosed in other countries than England and Canada.

Love the way you have universal and associated features.

One symptom is not a syndrome! It is a sign!

I notice that you've modelled it on genetic conditions like Angelman syndrome.

And the second system = differential?

Normal - other abnormalities of behaviour. (We often say of people with complex health needs: "They are normal in their abnormalities" or "abnormal in their abnormalities").

There was something in The exceptional child through literature which talked about the behaviours typically developing and autistic people share.

Greenspan (the late) studied "disorders of regulation".

How does echolalia come into role-playing? It seems to be the role-playing which distinguishes Newson from other forms.

Have you seen the Checklist for Behaviour-Disturbed Children [Rimland and the Autism Research Institute: get hands on 21st century version - 1980 checklist roughly contemporaneous]?

And are these criteria for diagnosis, assessment or both? Those are two distinctive stages and objects.

And there's the whole norm-based/criterion-based evaluation.

It is going to be an interesting project, which I support with my whole heart.

11:43 PM  
Blogger Adelaide Dupont said...

PS:

How is this developmental coding disorder distinguished from other conditions of psychological identity compromise: like reactive attachment disorder; borderline personality type; temper dysregulation disorder?

Mimicry = uncertainty of identity... [Newson 4]

11:47 PM  
Blogger Tarquin Mahoney said...

i dont give two shits if you are a doctor or not, this is my family, all of them...
well done, the obsessiveness of the roleplaying?
is the same as the immortal inpenetrable narcissism , lack of innate empathic mirror response too seems to be a biological feature thats indicated but the obsession with echolalic scripting allows them to hide it.
I cannot talk to my family anymore,,,i unlearnt the scripted echolalically trained responses they use...i was diagnosed as a psychopath for my troubles they are that convincing in their apparent "normality" that is in reality a carefully scripted scoietal structure all its own...they literally apeak in code to each other in the presence of others, they are far moe candid and sexualised and obviously base in their needs, food sex etc when im personally not around..
If untreated ? PDA is not "borderline" psychopathy!
It is psychopathy.
and to them ?
as they have an autistic sort of club or clique within the family?
the autistic clique IS the family , the scoiety , the moral authority, my all, my etc etc etc my everything...
to them this is "just caring about your family" to control the perceptions of each other so finely the role play becomes "real" for them.
As a neurotypical child trying to play this game??
in amongst them?
but seeing it as a game?
not as the reality it must be for them?
i can understand why my emotional intuition and reactivity was attempted to be tortured out of me..
The really sacry part?
Is i dont think ive met anyone in a position of power in menatl health services who DOESNT have specifically this disorder and it not only presents as but is primary, pathologically psychopathic...
Its so horrofcally antiscoial and self approving of its antisocial aspects as true social function?
the role playing becomes real in this act of self deception so horrific,,,
i realise that who i am?
to them?
is an imaginary friend,,,,
and this doisrder itslef?
splits ight down the middle of empathic and unempathic...just like psychopathy...
i can happily wear this label and use it to gain insight,,,but its not a label i can actually wear ...

just like my whole medical history being accused of being apsychopath when im not,,,
i was just copying avoidance language and not avoiding developing,,,
just avoiding peopel interfering with my development...
and where im late to the party so to speak?
my family?
well some of them ca never come,,,,
the more sinister self approving and sadistoc amongst them control the schooling of the echolalic scripts,,,
they are all very very very nasty and dismissive to interact with...
and theres a feature thats missing from this list,,,,
its the silence....
they will let you talk an talk and talk,,,,pour your heart out,,,,they are purely information gathering...
learning more scripts they can reprodcue... but as theyve aged?
the mask has dropped,,, the scripts make no sense,,,,they are roleplaying agmes that you no longer even know....
it causes them greaty anger and distress when you wont "play|"...


it psychopathy or psychopathic autism under any other name.

11:25 PM  

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