Has anybody heard of this?

[Guest guest]

> but I still think in my heart that Dillion has experienced

> problems from the HSP like a stroke. Let us know how it goes. Hugs.

This still hasn't been ruled out. I am so sick of waiting on freaking

doctors I don't know what to do.

Sissi

[Guest guest]

PATHOLOGICAL DEMAND AVOIDANCE SYNDROME

http://www.cafamily.org.uk/Direct/p13.html

This is so like Dillon (but he fits so many things).

PDA is a pervasive developmental disorder related to, but significantly

different from, autism and Asperger syndrome (see separate entry, Autistic

Spectrum Disorders including Asperger Syndrome). First identified as a separate

syndrome at the University of Nottingham, research has continued at the Early

Years Diagnostic Centre, which now holds a database of more than 150 children

and adults. These children would previously have been diagnosed as having

'non-typical autism/asperger' or 'pervasive developmental disorder not otherwise

specified'; but it is important to diagnose them separately since they do not

respond well to the educational and treatment methods that are helpful with

autistic and Asperger children, and since appropriate guidelines for education

and handling are now available from the Early Years Diagnostic Centre.

As in all pervasive developmental disorders, the underlying cause of PDA is

believed to be organic brain dysfunction with genetic factors. A provisional

diagnosis is possible before the age of four, but diagnosis is more difficult

than in autism because the child usually shows more social interest, more normal

language development and better imaginative play by four or five than autistic

children do. The following are the defining criteria for PDA (more detailed

descriptions, with examples, are available from the Early Years Diagnostic

Centre):

a.. Passive early history in first year: ignores toys, often delayed

milestones, 'just watches'. This passivity becomes active resistance to the

ordinary demands on small children; a few actively resist from the start.

b.. Continues to resist and avoid normal demands to a pathological extent;

seems to feel under intolerable pressure from these, does everything on own

terms. This is not a 'difficult phase' but continues into adulthood (so far as

follow-up research has yet shown). As language develops, strategies of avoidance

are essentially socially manipulative: this is an important diagnostic feature.

If frustrated in avoidance, major outbursts occur, often violent, apparently

panic attacks.

c.. Surface sociability, but apparent lack of social identity, pride or shame.

Seems sociable, but doesn't identify with other children, and shocks them by

complete lack of normal boundaries. No sense of responsibility, seems very

naughty, but parents and others recognise as confused. Praise and punishment

ineffective.

d.. Lability of mood, impulsive, led by need to control situations. Many seem

constantly on the edge of violence or loud excitability. May apologise but

re-offend at once, or totally deny the obvious. Rules and routine do not help;

better with variety and novelty.

e.. Comfortable in role-play and pretending: some appear to lose touch with

reality. May take over roles as coping strategy; parents often confused as to

'who s/he really is'. May behave as teacher to control other children, or as

baby or disabled person to avoid demands; often more animated when pretending

than in real life. Interest in fantasy persists in adulthood.

f.. Early language delay, perhaps result of passivity: good degree of

catch-up, often sudden. Eye contact often over-strong, and facial expression

over vivacious. Speech content usually odd or bizarre.

g.. Obsessive behaviour. Much of child's behaviour carried out in obsessive

way, especially demand avoidance and role play. This results in

underachievement. Some target other people obsessionally, either harassing or

showing overpowering liking.

h.. Neurological involvement. Soft neurological signs: clumsiness,

awkwardness; many never crawled. Some absences, fits or episodic dyscontrol.

Most show barely controlled excitability and impulsivity. Research currently in

progress on PDA combined with epilepsy.

50% of children with PDA are girls; this compares with about 20% girls in autism

and less than 10% girls in Asperger syndrome, both clearly significantly

different from PDA figures.

Inheritance patterns

It seems likely that genetic factors are similar to those in autism, but refer

to inheritance of a pervasive developmental disorder rather than PDA

specifically: thus perhaps 6% of children with PDA are known to have a sibling

with either PDA or Autism/Asperger. Preliminary research is currently underway.

Pre-natal diagnosis

None at present.

[Guest guest]

This sounds alot like alec. But he doesnt have speech yet. Or at least not much.

Weird. How is Dillion doing?

Jacquie H

Has anybody heard of this?

PATHOLOGICAL DEMAND AVOIDANCE SYNDROME

http://www.cafamily.org.uk/Direct/p13.html

This is so like Dillon (but he fits so many things).

PDA is a pervasive developmental disorder related to, but significantly

different from, autism and Asperger syndrome (see separate entry, Autistic

Spectrum Disorders including Asperger Syndrome). First identified as a separate

syndrome at the University of Nottingham, research has continued at the Early

Years Diagnostic Centre, which now holds a database of more than 150 children

and adults. These children would previously have been diagnosed as having

'non-typical autism/asperger' or 'pervasive developmental disorder not otherwise

specified'; but it is important to diagnose them separately since they do not

respond well to the educational and treatment methods that are helpful with

autistic and Asperger children, and since appropriate guidelines for education

and handling are now available from the Early Years Diagnostic Centre.

As in all pervasive developmental disorders, the underlying cause of PDA is

believed to be organic brain dysfunction with genetic factors. A provisional

diagnosis is possible before the age of four, but diagnosis is more difficult

than in autism because the child usually shows more social interest, more normal

language development and better imaginative play by four or five than autistic

children do. The following are the defining criteria for PDA (more detailed

descriptions, with examples, are available from the Early Years Diagnostic

Centre):

a.. Passive early history in first year: ignores toys, often delayed

milestones, 'just watches'. This passivity becomes active resistance to the

ordinary demands on small children; a few actively resist from the start.

b.. Continues to resist and avoid normal demands to a pathological extent;

seems to feel under intolerable pressure from these, does everything on own

terms. This is not a 'difficult phase' but continues into adulthood (so far as

follow-up research has yet shown). As language develops, strategies of avoidance

are essentially socially manipulative: this is an important diagnostic feature.

If frustrated in avoidance, major outbursts occur, often violent, apparently

panic attacks.

c.. Surface sociability, but apparent lack of social identity, pride or

shame. Seems sociable, but doesn't identify with other children, and shocks them

by complete lack of normal boundaries. No sense of responsibility, seems very

naughty, but parents and others recognise as confused. Praise and punishment

ineffective.

d.. Lability of mood, impulsive, led by need to control situations. Many

seem constantly on the edge of violence or loud excitability. May apologise but

re-offend at once, or totally deny the obvious. Rules and routine do not help;

better with variety and novelty.

e.. Comfortable in role-play and pretending: some appear to lose touch with

reality. May take over roles as coping strategy; parents often confused as to

'who s/he really is'. May behave as teacher to control other children, or as

baby or disabled person to avoid demands; often more animated when pretending

than in real life. Interest in fantasy persists in adulthood.

f.. Early language delay, perhaps result of passivity: good degree of

catch-up, often sudden. Eye contact often over-strong, and facial expression

over vivacious. Speech content usually odd or bizarre.

g.. Obsessive behaviour. Much of child's behaviour carried out in obsessive

way, especially demand avoidance and role play. This results in

underachievement. Some target other people obsessionally, either harassing or

showing overpowering liking.

h.. Neurological involvement. Soft neurological signs: clumsiness,

awkwardness; many never crawled. Some absences, fits or episodic dyscontrol.

Most show barely controlled excitability and impulsivity. Research currently in

progress on PDA combined with epilepsy.

50% of children with PDA are girls; this compares with about 20% girls in

autism and less than 10% girls in Asperger syndrome, both clearly significantly

different from PDA figures.

Inheritance patterns

It seems likely that genetic factors are similar to those in autism, but refer

to inheritance of a pervasive developmental disorder rather than PDA

specifically: thus perhaps 6% of children with PDA are known to have a sibling

with either PDA or Autism/Asperger. Preliminary research is currently underway.

Pre-natal diagnosis

None at present.

[Guest guest]

Interesting. I can see some parallels to , but not enough to say 'Hey,

that's him!' Is this something that seems to fit Dillon or just something

you found interesting?

Sue

[Guest guest]

> Interesting. I can see some parallels to , but not enough to say

'Hey,

> that's him!' Is this something that seems to fit Dillon or just something

> you found interesting?

> Sue

Fits him to a T. My brain is reeling because it's so much like him. I didn't

even know this existed! I've been reading everything I can find and this

really hit home.

> > a.. Passive early history in first year: ignores toys, often delayed

milestones, 'just watches'. This passivity becomes active resistance to the

ordinary demands on small children; a few actively resist from the start.

Dillon was like this somewhat.

> > b.. Continues to resist and avoid normal demands to a pathological

extent; seems to feel under intolerable pressure from these, does everything

on own terms. This is not a 'difficult phase' but continues into adulthood

(so far as follow-up research has yet shown). As language develops,

strategies of avoidance are essentially socially manipulative: this is an

important diagnostic feature. If frustrated in avoidance, major outbursts

occur, often violent, apparently panic attacks.

This is very much like Dillon except for the violence. He is never violent

towards people. When he was small he always wanted to fight, but he's not

like that anymore. He hits things instead of people.

> > c.. Surface sociability, but apparent lack of social identity, pride

or shame. Seems sociable, but doesn't identify with other children, and

shocks them by complete lack of normal boundaries. No sense of

responsibility, seems very naughty, but parents and others recognise as

confused. Praise and punishment ineffective.

Completely like Dillon.

> > d.. Lability of mood, impulsive, led by need to control situations.

Many seem constantly on the edge of violence or loud excitability. May

apologise but re-offend at once, or totally deny the obvious. Rules and

routine do not help; better with variety and novelty.

This is also compeletely like Dillon.

> > e.. Comfortable in role-play and pretending: some appear to lose touch

with reality. May take over roles as coping strategy; parents often confused

as to 'who s/he really is'. May behave as teacher to control other children,

or as baby or disabled person to avoid demands; often more animated when

pretending than in real life. Interest in fantasy persists in adulthood.

This is the part that really got me. I always said that when Dillon was

little he didn't just " have " imaginary friends. He BECAME his imaginary

friends. He would leave a room and come back in with a different persoanlity

and tell you his name was something different. His favorite personailty was

" Speed " the rock star, but he had many others. I think he has actually

" become " Speed in real life because that's the personality he presents the

most. Our yard was la-la land and he was constantly battling the " la-la land

bad guys. " His swingset was not a swingset. It was a great ship in the

ocean. Dillon was imaginative to an extreme degree. He still is, actually.

He's always been a mimic. I could go on and on with this.

> > f.. Early language delay, perhaps result of passivity: good degree of

catch-up, often sudden. Eye contact often over-strong, and facial expression

over vivacious. Speech content usually odd or bizarre.

Dillon did not have language delay, in fact his language was advanced. That

may be due to high intelligence. The EYE CONTACT thing. Oh my God, that was

one of the things (besides strong imagination and sociability) that has

always made me think Dillon was not on the spectrum even though he has other

traits that are rather spectrum-ish.

Look at this eye contact. It is overly-strong. You can almost " feel " Dillon

looking at you. It's eerie. I know he can get some people people to look

away like this:

http://home.isoa.net/~nitetrax/dillonpic.htm

> > g.. Obsessive behaviour. Much of child's behaviour carried out in

obsessive way, especially demand avoidance and role play. This results in

underachievement. Some target other people obsessionally, either harassing

or showing overpowering liking.

This SO like Dillon it's not even funny.

> > h.. Neurological involvement. Soft neurological signs: clumsiness,

awkwardness; many never crawled. Some absences, fits or episodic dyscontrol.

Most show barely controlled excitability and impulsivity. Research currently

in progress on PDA combined with epilepsy.

Dillon walked two weeks after he learned to crawl. So did Boone. Everything

else fits too.

Some other stuff from other sites:

http://www.nottssnn.freeserve.co.uk/oaasis/page30.html

They have no respect for 'authority'. Because of their social identity

problems, they see no differencebetween adult/child, teacher/pupil. As they

fail to commit to the other children in their year group, they will tend to

lean towards you, the adult.

To all intents and purposes they may seem to become compliant and well

behaved: but this may be a 'role' they are playing because it produces the

right effect as far as they are concerned: they are left alone.

I added !!!!! for Dillon-like behavior.

Language delay, seems result of passivity

Good degree of catch-up, often sudden. Pragmatics not deeply disordered,

good eye-contact (sometimes over-strong)!!!!! social timing fair except when

interrupted by avoidance; facial expression usually normal or

over-vivacious!!!! However, speech content usually odd or bizarre!!!!!!

even discounting demand-avoidant speech. Social mimicry more common than

video mimicry;!!!!! brief echoing in some!!!!! Repetitive questions used

for distraction, but may signal panic!!!!!

Everything here is DILLON

· Distracting adult: eg 'Look out of the window!', 'I've got you a flower!',

'I'm going to be sick'

· Acknowledging demand but excusing self: eg 'I'm sorry, but I can't', 'I've

got to do this first', 'can't make me'

· Physically incapacitating self: hides under table, curls up in corner,

goes limp, dissolves in tears, drops everything, seems unable to look in

direction of task (though retains eye contact), removes clothes or glasses,

'I'm too hot', 'I'm too tired', 'It's too late now', 'I'm handicapped',

· Withdrawing into fantasy, doll play, animal play: talks only to doll or to

inanimate objects; appeals to doll, 'My girls won't let me do that', 'But

I'm a tractor, tractors don't have hands'; growls, bites.

· Reducing meaningful conversation: bombards adult with speech (or other

noises, eg humming) to drown out demands; mimics purposefully; refuses to

speak.

(As last resort) Outbursts, screaming, hitting, kicking; best construed as

panic attack.

COULD DILLON'S LOSS OF SPEECH BE REFUSAL TO SPEAK???? Is he stumbling over

words because it will make teachers call on him less? Is role-playing in

school -- his role being an autistic child?

Also one of the pages I read stated that kids with PDA almost always have a

sibling with autism. This fits him so much better than ODD or schizophrenia.

even the bus thing -- maybe that was his way to avoid riding bus. This all

describes one of my sisters to a T too.

GEEZ, I'm sorry this is so long, but I think THIS IS REALLY IT! I really

really do!!!! And it's not as bad as it could have been.

Sissi

[Guest guest]

> PATHOLOGICAL DEMAND AVOIDANCE SYNDROME

>

> http://www.cafamily.org.uk/Direct/p13.html

>

That is quite interesting Sissi. I didn't see anything in that

description about loss of skills, but they didn't list the entire

description either. I'm wondering how many of our PDD-NOS kids on

the list might fit that criteria. In many ways it makes me think

about , but it's hard to say from just reading that one

page. It could be worth researching that more to see what you could

learn, but I still think in my heart that Dillion has experienced

problems from the HSP like a stroke. Let us know how it goes. Hugs.

[Guest guest]

I have not heard of this, Sissi...but it's very interesting...Food for

Thought.

Penny

Has anybody heard of this?

PATHOLOGICAL DEMAND AVOIDANCE SYNDROME

http://www.cafamily.org.uk/Direct/p13.html

This is so like Dillon (but he fits so many things).

[Guest guest]

COULD DILLON'S LOSS OF SPEECH BE REFUSAL TO SPEAK???? Is he stumbling over

words because it will make teachers call on him less? Is role-playing in

school -- his role being an autistic child?

This is the BIG question. Do you know a Dr. that could work with him to see if

he can figure this out?

Also one of the pages I read stated that kids with PDA almost always have a

sibling with autism. This fits him so much better than ODD or schizophrenia.

even the bus thing -- maybe that was his way to avoid riding bus. This all

describes one of my sisters to a T too.

WOW!

GEEZ, I'm sorry this is so long, but I think THIS IS REALLY IT! I really

really do!!!! And it's not as bad as it could have been.

I guess I hope this is it for you then, but it sounds like an odd wish.

Sue