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One very good reason why I find ABA an inappropriate thing for an Aspie kid. But it gets used..... Nice to see you back, by the way... got worried.
"'Remember, language is sometimes the barrier, it puts up a fence.' She said it was a mistake to think that children who could speak were necessarily more able. 'Language can also be a false friend. The danger is that you over-estimate a child's comprehension.'" Also this one, "He says he appreciates autistic people because they 'have no choice but to be strong individuals'." Which is interesting because that's usually the reason people are offended by us. We're not "right", ergo we should be pathetic. When we don't co-operate by being pathetic, great anger ensues. The author misses the reciprocity problem in communication; it's more accurate to say that autistic people have difficulty with non-autistic communication, and non-autistics have difficulty with autistic communication. I was a bit horrified with Lovaas-style ABA being used on the AS boy, to teach him the one "right" way to interact with other people.
I don't know if I should be worried about Michelle's absence from here for two days. No worries; the Supreme Court discussion has moved to the corresponding board (see Michelle's post): http://www.quicktopic.com/25/H/aDxhLNmfnRfKw
Now I'm worried....
*Hi oddizm (fuckin luv that name....) >I forgot that was in there. He said that there was a study that showed many of them moms (or a significant amount...) were immigrants. But he said that what he thought it was that AS Swedish men went overseas, found a girl who said, "oh, his strangeness must be because he's Swedish." *I get that, I s'pose.... certainly prevented me from being fully "British"...... >He didn't say it applied to Brits. :-) *Trust me, it does..... only ever found two females I could really comfortably love, and one of them wants rid of me now. >I'm sorry about your marriage ending. I was in raving raw pain for a very long time after I got divorced. *Thanks. Sorry about your one, too.... I was with one other person that I lived with who was basically taking the piss the whole while.... even that hurt when it ended... even though when it was the very end, I said so, and not her. >There are some weird parts in my notes that I can't explain... *I wouldn't worry. I can never understand my own lecture notes.... not the one's I take in lectures... I mean the ones I write for the fuckers! >I know there's tons that is old news to you, but he was talking
to a bunch of dumb dumbs in Sacramento, I think, who needed to hear that
girls are very underdiagnosed, for instance.
*Eeek.... not a great many really. I should ask him about this because it's germane to my study...... >He also said that girls might be totally into make-up instead of computers. That was amazing to me. *What? Now that's where he can fuck right off..... I can tell him that I don't know many Aspie/Autie females who are into make-up..... they usually hate the fucking stuff... don't you? >Also he said that in Sweden the girls were likely to be bonkers over "my little pony" and you could dx a boy with AS in Sweden if he said, "I have no interest in riding a bike." (though I suppose he probably would say it in Swedish) That was a joke, but he said it was common for AS boys not to be able to ride bikes, or not be interested in it. *Oh? I know Aspies in UK and Finland who love to be on a bike.... great way to get out of town and into the country.... I did it all the time. >Now, Michelle doesn't want it widely known, but when she was a girl she had a large, carefully categorized tiara collection. (I'm gonna lay low for a while now.) :-) *She's gonnae smack your arse, oddizm.... and I'm gonnae video it ;) >oddizm
I forgot that was in there. He said that there was a study that showed many of them moms (or a significant amount...) were immigrants. But he said that what he thought it was that AS Swedish men went overseas, found a girl who said, "oh, his strangeness must be because he's Swedish." He didn't say it applied to Brits. :-) I'm sorry about your marriage ending. I was in raving raw pain for a very long time after I got divorced. There are some weird parts in my notes that I can't explain... I know there's tons that is old news to you, but he was talking
to a bunch of dumb dumbs in Sacramento, I think, who needed to hear that
girls are very underdiagnosed, for instance.
He also said that girls might be totally into make-up instead of computers. That was amazing to me. Also he said that in Sweden the girls were likely to be bonkers over "my little pony" and you could dx a boy with AS in Sweden if he said, "I have no interest in riding a bike." (though I suppose he probably would say it in Swedish) That was a joke, but he said it was common for AS boys not to be able to ride bikes, or not be interested in it. Now, Michelle doesn't want it widely known, but when she was a girl she had a large, carefully categorized tiara collection. (I'm gonna lay low for a while now.) :-) Oddizm
I did that. Look where it fucking got me. Nowhere.
Hi oddizm "He also said that there were things he used to believe, but that he "grew up" and changed his mind." The guy says that, but can we believe him? "I am putting my very, very bad notes here, from Christopher Gillberg's 2 talks. Some of the stuff may be very vague.Still I was hoping it would give a flavor of what he said....yesterday." Won't hurt even if a bit skew-wiff!!! He's not a very clear or clever person much of the time..... "oddizm" Fuckin' LUV that! "Pdd -highest functioning not pervasive for them
Nor do I. I use it to differentiate based only on IQ but that is a false dichotomy. "Kanner what he described is not the same as in ICD-10 Dsm -iv" No shit! ICD 10 and DSM IV (TR) suck cocks in hell! "childhood disintigrative disorder, sometimes near normal to toddler
age
I have to say this is something that interests me. Is it a separate thing? Is it a variant of autistic development that occurs when someone has just had enough of dealing with the world? "CDD also called Heller sydnrome difficult to separate from regressive autism" May be same sort of thing.... "regressive" being a descriptor rather than a diagnostic term. "PDD nos, in britain= atypical autism" Yes. And the UK term kicks the other's fucking arse. Right the way across town! "in Scandanavia...other autistic-like condition, other autism spectrum disorder" In Scandinavia, the person to watch is Lena Nylander at Lunds Universitet. She is marvellous! "very difficult to dx no operationalized definitions under pdd nos" No shit! "prevalence of ASDs is very much higher than believed then even 10 years ago" Which accounts for FEAT's fuckwitted idea of an epidemic! Pillocks! "if you count the four variants about 1% several new studies" About the same as most "abnormality mental states" "about .2% are (typical low functioning) autistic disorder
Ahaa? "75 to 85% if classical autism" Oh? "for research maybe need homogenous groups (" Yes. That would be obvious..... "mental retardation is not present in most individuals" No shit! They though _I_ was mentally retarded..... "associated with epilepsy in about 10%" I have myoclonics. "35% in AD" Oh? "low and middle 120 over a period of 20 years...epilepsy in 40% of autistics by 24 years of age" Yes. I know. "the epilepsy sometimes arises in adolescence and young adulthood" And may well be a response to stress... will he agree? Doubt it. "classic variants Medical disorders in 5% (25% in AD)
Ahaaa? "fragile x not sent to autism clinics (which is stupid, basically, he said)" Actually, I agree with him there.... not all cases of fX are auties. but a substantial proportion are, so it is a good idea to make the referral...... "they don't want diagnose extra things like autism and aDD once they get one dx..." This happens in Finland purely because the doctors think that one dx ought to be enough and if you want a second you are being greedy. Fuckwits, the lot of them. "skewed male:female
Girls are under-represented in AS particularly. "autism spectrum is severely underdiagnosed in girls." Yes. "High rate of visual, hearing and motor impairments including at birth" Hmmm.... I wonder...... "sibling rate of autism higher than "normal"" This would be a fairly obvious observation. Really. ---
Can happen..... "Tuberous sclerosis, fragile x partial tetrasomy15, down syndrome,
xyy, xo, hypomelanosis of Ito, Rett complex variants, Angelman syndrome,
williams syndrome, CHARGE association, smith-Magenis syndrome, smith-lemli-opitz
syndrome, thlidomide, herpes and rubella infection, valproic syndrome,
fetal alcohol
As a simultaneous thing, yes..... "10% of downs syndrome actually do have autism full blown!" I know the mother of one such case....... the Finnish doctors won't give the autism dx because the child had the Down's dx..... fucking stupid, to my mind! "known medical disorders 25% in autistic disorder proper (unselected samples and 2-5% in Asperger syndrome" Ahaaa? "these are either genetic in their own right, affect autism susceptibily gene areas, or casue brain lesions through direct/indirect" Hmmmm? "tuberous sclerosis"
This TS has been blamed for all sorts... still no serious proof, just conjecture. And psychiatric conjecture is nowhere near as certain as mathematical conjecture..... "dopamine genes on chromosome 9 affected in other Tuberous Sclerosis variant" "autism likely if TS lesions in the temporofrontal regions and if
there are many lesions
May be so..... but recent study at a major centre in US (forget which) suggests otherwise. "thalidomide embryopathy
Hmmm..... "21-23 days post conception --exposure" "5% of individuals with thalidomide embryopathy" "tearing (as in: eyes crying), limbs indicator for severity of autism" Oh? In thalidomaide teratogenesis? "did not have a family history of autism arrived de novo (from chemical exposure)" Ok.... can accept new ideas.... could be interesting..... "Herpes encephalitis
Can do..... "can lead to classic symptoms of autism cases at 14-31 years of age, Man-31 years old with family developed autism in a period 21 days, hand flapping, toe walking, delayed echolalia..." Maybe so..... "several medial temporal frontal lobe damage
"sibs affected 3% in core syndrome" "identical co twins is 60-90% non- is 0-3%
Interesting..... "can't really extrapolate to whole group only a belief that autism is genetic in all forms, there are indications though" Maybe indications but are they unequivocal indications? "affective disorders found in extended families, partic
I have seen this..... "possibly increased in SLI, dyslexia" I'm Aspie and dysexic and dyspraxic too-..... "chromosomes" "2,6,7,16, 17, 18, 22, and x" "clinical findings 15q, at least 3 disorders" But these are not the only things involved..... "prader-willi has lowest rate of autism symptomology
Oh? "Rett syndrome complex many different variants" No shit! "and Fragile X have autism! (this is my exclamation point...makes me mad when they say Frag X is a separate thing from autism)" Not all, but a seriously high proportion, which necessitates a referral to autism services, just in case..... "turner syndrome (x-chromosome)" "neurologin genes on x chromosome mutated" "in some cases, jamain, bourgeron, gillberg et al 2003, laurmonnier et all 2004, chi et al 2004" "neuroligin genes on other chromosome inlcluding 17
"clinical finding"
"acquired brain lesions implicate frontotemporal
But my MRI was no sognificantöy fucked---- ?????!!!!! "thalidomide
"auditory brain stem responses" "decreas in lack of postrota ???" "abberant muscle tone and concomitant squint" "cerebellar dysfunction suggested by autopsy studies" "relationship to ataxia, related to cerebral palsy" It all gets a bit fuzzy here.... "1 in 3 with cerebellar ataxia have full blown autism" "frontotemporal brain dysfunction suggested by
""
"aberrant reading of facial expressions
"He said he noticed many years ago that autistic children will look at your mouth and not at your eyes" "non-verbal learning disability is very common in AS" "more thaqn 50% of AS have nvld" "verbal learning functional deficits" "executive functions will say something about the likely outcome - much more likely to do poorly- in work situations...than those with better executive function (one of my big problems...oddizm)" "central coherence problems - difficulty in separating the whole from parts" "procedure complex learning deficits" "superior fact learning" "early brainstem or cerebellar associated with severe secondary problems" "midtrimester bitemporal lobe damage" "uni- bilateral frontotemporal dysfunction in asperger's usually unilateral in Asperger's" "multi site brain damage
>"I don't like the "high functioning" sounds like the autism is
high functioning, but "high functioning"individuals with autism can be
* >"I know quite a number of "low functioning" who are
* "neurochemistry
"noradrenaline
"some sort of pruning deficit might be connected to GFA protein problem" "gangliosides
"only serotonin and neuroligins have well replicated studies" "only dopamine antagonists have been convincingly shown to affect core symptoms of autism, but risks are too high for children" "sri not selective (he said that SSRI's are not selective so he called them SRI's)" "antiepileptics in certain cases are helpful" "peptides?? and peptide-targeted drugs,
"The pathogenetic chain
"neurocognitive and social" >"we have been led to trust the triad, if it's a diad it's not autism" * "maybe its not as core as we think it is, only Lorna Wing says its a triad." "only social communication and neurocognitive ??" "monad of restricted behaviour pattern as a frequent concomitant?
or three monads with frequent co-existence
>"I have a major problem with the difference between social and verbal" deficits... (I think this is what he said) "gaze problem is labeled "a social problem", but is a communcation problem" "temporally restricted benefits to ABA like therapies (I dont' have the exact quote)..., for six months or so you will see a steep increase in abilities then a plateau" "immigration links? indirect link with genetic factors?" "mothers status because father with AS went travelling find a bride from another culture" "abnormal child triggers unusual interactions with parents" "some parents have autism spectrum disorders themselves- not necessarily a major problem in all cases. Autistics can make good parents." "anxiety leads to viollent behavior that is NOT aggressive." "Should not be called Aggression because it's not actually directed at a person." "He has met fathers of autistic kids and "now he's doing so well in adulthood, you can't believe that they could have been classic autism as child. Now he doesn't come across that way." (made the point that untreated autistic kids grew up to live normal lives and have autistic children)" "you don't know anything about the individual until you've done a thorough work up..." "don't say "autistic people" no one is autistic through and through" "if you've seen one you haven't seen them all
"There maybe 50 or 100 subgroups in reality." "change attitudes," "I have seen this one variant I think I have seen a few more like that, and study them. (look for subgroups and study them as subgroubs)" "change the attitudes of researchers" "see autism as (monolithic - oddizm's term), some say "we know all about autism"..." "show some respect!" "if known underlying disorder: treat it" "if epilepsy treat this, however major avoid benzodiazepines" "comordity adhd" "may need treatment with stimulant" "if the hyperactivity is treated and goes down you will see the autism" "atypical neuroleptics" "don't talk about agression it's a failure to communicate or reaction to over stimulated" "don't talk about violent, agressive behaviors" "ssri's for ocd & depression" "I still think there is no good evidence for diet helping autism, occasionally a child has a milk allergy and that can be dealt with by diet." "lithium for some" "untreated pku would lead to autism" "PHYSICAL EXERCISE, reduces self injury, not used to the extent that it should be!" "very variable
"majority probably live to be old, but increased mortality in subgroup" "specific knowledge and better treatment
"psychoeducation - teach people about how the brain works" "not ONE solution" "acceptance and attitude change!" "people with autism, not autists or autistic" "should be ssucharewa's syndrome, 1926 russian" "Van Krevelen's tried to delineate from autism in 1971
"longer understood in Europe
"tried to get the 20 symptoms to be grouped under 4 categories
"uta frith" "szatmari in Canada...also reviewed Asperger's cases in 1989" "for research purposes, not exactly the same, lists 5 categories, didn't see motor clumsiness as a separate, very strongly stressed by Asperger's" "several years later in icd-10
"miller and ozonoff 1997 submitted cases to clinical researchers for diagnosis, and didn't tell them the these were Hans Asperger's cases" "Not a single case met the DSM-iv criteria for Asperger's" "if you go by the DSM you can not diagnose AS
"where are these cases who were completely normal for the first 3 years? doctors will they will tell you "we haven't seen them."..." "3 out of 200 might be able to be squeezed into DSM-iv definition
"supposed to have normal curiosity about environment, normal development of speech" "2-4 symptoms of abnormal" "1-3 of 3 circumscribed"
"robotic, formal, overly adult, by the age of 5 or 6 have expressive language skills, have understanding problem, if they've heard the question before they can answer it" "AS kids when asked, "how is your day?" get upset...they want to know What exactly is it you want to know? " ".don't like open ended questions" "if they get a written question...can sometimes read before they speak well." "can sometimes respond in writing slowly when they can't answer it verbally" "gaze
"looks very depressed,
"have an odd style with body language" "motor clumsiness" "phenotype is less pronounced in girls" "thus a total of 9 symptoms required, at least 2 of which reflect severe deficits" "atypical autism, and pddnos there are not operationalized" "at least 5 or more of the criteria from DSM for autistic disorder" "at least one had to be social." "diagnosis- definitions" "instruments used" "adir or disco used on thousands of people, the founding studies
that formed the basis for using
"ASSQ - 0 -1- 2
"in the norwegian pop 3% over 19 on the parent questionairre" "DISCO reliable and valid for diagnosing disorderrs in autism spectrum,
more background that ADIR
"as though they were some sort of Bible" "some have trained for 2 weeks with Catherine Lord or Lorna Wing...using ADIR think they can dx autism" "not appropriate, we still always will need clinical diagnosis" "many overdiagnosed and a few cases missed all together" "ASDI
"reliable and valid" "CARS children and adults, very good for low functioning kids with autism. probably the best researched tool for low functioning...has some idea of mild and severe." "adi and disco don't provide cutoff for mild and severe" "SAB 0-2 infants - 130 items" "CHAT - infants 9 items most widely used instrument in screening will miss almost 80% of the moderate and all the high functioning cases" "ASQ 40 item very good for screen classic"
"prevalence
"boy girl ratio 3-5:1 possible that it is much underdiagnosed." "overlap comorbidity (does not like comorbid term)" "very common ADHD, deficits in motor control and perceptual problems in Scandanavia" "ADHD/DAMP" "Depression" "Mania, bipolar than in general population" "will find severe emotional swings
"80% of AS kids have kids" "1 in 4 meet full Tourette's" ""personality disorders" most common misdiagnosis
"100% will meet criteria one personality disorder for instance,
Obsessive Compulsive personality disorder
"gets in trouble" A"S adults have been subjected to strange therapies - group therapy
for years
"selective mutism
"medical disorders" "eating disorders
"substance use disorders - suggested high rate of alcoholism
"forensic psychiatric problems can be severe and can be difficult" "vast majority will never commit any crimes
"terrible conclusions drawn by public because of newspaper reports based on one study" "OCD, washing rituals, contamination rituals not typical of autism" "hyperlexia, clearly associated" "high IQ, mathematicians?" "many cases of NVLD are the same as AS" "right hemisphere syndrome
"semantic pragmatic disorder, some speech therapists say all kids" "only the pragmatic part of the problem
"valid reliable dx
"if no language by age 7 mostly likely will keep autistic disorder dx" "probably some genetic subgroups in AS subgroups" "1) no genetic predisposition in the family small subgroup" "2) child has someone else with autism and someone else with AS in family" "3)it's a different, only individuals with AS and maybe 50% of family members have AS" "it could be that this is a different group, maybe the cases of autism have a second hit" "autism and asperger's are the same, only IQ determines the dx" "tentative conclusion" "AS=autistic disorder in high-functioning individuals
"oddizm"
I am putting my very, very bad notes here, from Christopher Gillberg's 2 talks. Some of the stuff may be very vague.Still I was hoping it would give a flavor of what he said....yesterday. oddizm -------------
Kanner what he described is not the same as in ICD-10 Dsm -iv childhood disintigrative disorder, sometimes near normal to toddler
age
CDD also called Heller sydnrome difficult to separate from regressive autism PDD nos, in britain= atypical autism in Scandanavia...other autistic-like condition, other autism spectrum disorder very difficult to dx no operationalized definitions under pdd nos prevalence of ASDs is very much higher than believed then even 10 years ago if you count the four variants about 1% several new studies about .2% are (typical low functioning) autistic disorder
75 to 85% if classical autism for research maybe need homogenous groups ( mental retardation is not present in most individuals associated with epilepsy in about 10% 35% in AD
the epilepsy sometimes arises in adolescence and young adulthood classic variants Medical disorders in 5% (25% in AD)
they don't want diagnose extra things like autism and aDD once they get one dx... skewed male:female
autism spectrum is severely underdiagnosed in girls. High rate of visual, hearing and motor impairments including at birth sibling rate of autism higher than "normal"
Tuberous sclerosis, fragile x partial tetrasomy15, down syndrome,
xyy, xo, hypomelanosis of Ito, Rett complex variants, Angelman syndrome,
williams syndrome, CHARGE association, smith-Magenis syndrome, smith-lemli-opitz
syndrome, thlidomide, herpes and rubella infection, valproic syndrome,
fetal alcohol
10% of downs syndrome actually do have autism full blown! known medical disorders 25% in autistic disorder proper (unselected samples and 2-5% in Asperger syndrome these are either genetic in their own right, affect autism susceptibily gene areas, or casue brain lesions through direct/indirect tuberous sclerosis
dopamine genes on chromosome 9 affected in other Tuberous Sclerosis variant autism likely if TS lesions in the temporofrontal regions and if
there are many lesions
thalidomide embryopathy
21-23 days post conception --exposure 5% of individuals with thalidomide embryopathy tearing (as in: eyes crying), limbs indicator for severity of autism did not have a family history of autism arrived de novo (from chemical exposure) Herpes encephalitis
several medial temporal frontal lobe damage
sibs affected 3% in core syndrome identical co twins is 60-90% non- is 0-3%
can't really extrapolate to whole group only a belief that autism is genetic in all forms, there are indications though affective disorders found in extended families, partic
possibly increased in SLI, dyslexia chromosomes 2,6,7,16, 17, 18, 22, and x clinical findings 15q, at least 3 disorders prader-willi has lowest rate of autism symptomology
Rett syndrome complex many different variants and Fragile X have autism! (this is my exclamation point...makes me mad when they say Frag X is a separate thing from autism) turner syndrome (x-chromosome) neurologin genes on x chromosome mutated in some cases, jamain, bourgeron, gillberg et al 2003, laurmonnier et all 2004, chi et al 2004 neuroligin genes on other chromosome inlcluding 17
clinical finding
acquired brain lesions implicate frontotemporal
thalidomide
auditory brain stem responses decreas in lack of postrota ??? abberant muscle tone and concomitant squint cerebellar dysfunction suggested by autopsy studies relationship to ataxia, related to cerebral palsy 1 in 3 with cerebellar ataxia have full blown autism frontotemporal brain dysfunction suggested by
""
aberrant reading of facial expressions
He said he noticed many years ago that autistic children will look at your mouth and not at your eyes non-verbal learning disability is very common in AS more thaqn 50% of AS have nvld verbal learning functional deficits executive functions will say something about the likely outcome - much more likely to do poorly- in work situations...than those with better executive function (one of my big problems...oddizm) central coherence problems - difficulty in separating the whole from parts procedure complex learning deficits superior fact learning early brainstem or cerebellar associated with severe secondary problems midtrimester bitemporal lobe damage uni- bilateral frontotemporal dysfunction in asperger's usually unilateral in Asperger's multi site brain damage
I don't like the "high functioning" sounds like the autism is high
functioning, but "high functioning"individuals with autism can be
"I know quite a number of "low functioning" who are
neurochemistry
noradrenaline
some sort of pruning deficit might be connected to GFA protein problem gangliosides
only serotonin and neuroligins have well replicated studies only dopamine antagonists have been convincingly shown to affect core symptoms of autism, but risks are too high for children sri not selective (he said that SSRI's are not selective so he called
them SRI's)
peptides?? and peptide-targeted drugs,
The pathogenetic chain
neurocognitive and social "we have been led to trust the triad, if it's a diad it's not autism" maybe its not as core as we think it is, only Lorna Wing says its a triad. only social communication and neurocognitive ?? monad of restricted behaviour pattern as a frequent concomitant?
or three monads with frequent co-existence
"I have a major problem with the difference between social and verbal" deficits... (I think this is what he said) gaze problem is labeled "a social problem", but is a communcation problem temporally restricted benefits to ABA like therapies (I dont' have the exact quote)..., for six months or so you will see a steep increase in abilities then a plateau immigration links? indirect link with genetic factors? mothers status because father with AS went travelling find a bride from another culture abnormal child triggers unusual interactions with parents some parents have autism spectrum disorders themselves- not necessarily a major problem in all cases. Autistics can make good parents. anxiety leads to viollent behavior that is NOT aggressive. Should not be called Aggression because it's not actually directed at a person. He has met fathers of autistic kids and "now he's doing so well in adulthood, you can't believe that they could have been classic autism as child. Now he doesn't come across that way." (made the point that untreated autistic kids grew up to live normal lives and have autistic children) you don't know anything about the individual until you've done a thorough work up... don't say "autistic people" no one is autistic through and through if you've seen one you haven't seen them all
There maybe 50 or 100 subgroups in reality. change attitudes,
change the attitudes of researchers
show some respect! if known underlying disorder: treat it if epilepsy treat this, however major avoid benzodiazepines comordity adhd may need treatment with stimulant if the hyperactivity is treated and goes down you will see the autism atypical neuroleptics
ssri's for ocd & depression I still think there is no good evidence for diet helping autism, occasionally a child has a milk allergy and that can be dealt with by diet. lithium for some untreated pku would lead to autism PHYSICAL EXERCISE, reduces self injury, not used to the extent that it should be! very variable
specific knowledge and better treatment
psychoeducation - teach people about how the brain works not ONE solution acceptance and attitude change! people with autism, not autists or autistic should be ssucharewa's syndrome, 1926 russian Van Krevelen's tried to delineate from autism in 1971
longer understood in Europe
tried to get the 20 symptoms to be grouped under 4 categories
uta frith szatmari in Canada...also reviewed Asperger's cases in 1989 for research purposes, not exactly the same, lists 5 categories, didn't see motor clumsiness as a separate, very strongly stressed by Asperger's several years later in icd-10
miller and ozonoff 1997 submitted cases to clinical researchers
for diagnosis, and didn't tell them the these were Hans Asperger's cases
if you go by the DSM you can not diagnose AS
where are these cases who were completely normal for the first 3
years? doctors will they will tell you "we haven't seen them."
you'll find alot of people who have the symptoms supposed to have normal curiosity about environment, normal development of speech 2-4 symptoms of abnormal
robotic, formal, overly adult, by the age of 5 or 6 have expressive language skills, have understanding problem, if they've heard the question before they can answer it AS kids when asked, "how is your day?" get upset...they want to know What exactly is it you want to know? .don't like open ended questions if they get a written question...can sometimes read before they
speak well.
gaze
looks very depressed,
have an odd style with body language motor clumsiness phenotype is less pronounced in girls thus a total of 9 symptoms required, at least 2 of which reflect severe deficits atypical autism, and pddnos there are not operationalized at least 5 or more of the criteria from DSM for autistic disorder
diagnosis- definitions
adir or disco used on thousands of people, the founding studies that formed the basis for using assq ehlers-gillberg 1993, ehlers et all 1999
ASSQ - 0 -1- 2
in the norwegian pop 3% over 19 on the parent questionairre DISCO reliable and valid for diagnosing disorderrs in autism spectrum,
more background that ADIR
as though they were some sort of Bible some have trained for 2 weeks with Catherine Lord or Lorna Wing...using ADIR think they can dx autism not appropriate, we still always will need clinical diagnosis many overdiagnosed and a few cases missed all together
ASDI
reliable and valid CARS children and adults, very good for low functioning kids with autism. probably the best researched tool for low functioning...has some idea of mild and severe. adi and disco don't provide cutoff for mild and severe SAB 0-2 infants - 130 items CHAT - infants 9 items most widely used instrument in screening will miss almost 80% of the moderate and all the high functioning cases ASQ 40 item very good for screen classic
prevalence
boy girl ratio 3-5:1 possible that it is much underdiagnosed. overlap comorbidity (does not like comorbid term) very common ADHD, deficits in motor control and perceptual problems in Scandanavia ADHD/DAMP Depression Mania, bipolar than in general population will find severe emotional swings
80% of AS kids have kids 1 in 4 meet full Tourette's "personality disorders" most common misdiagnosis
100% will meet criteria one personality disorder for instance, Obsessive
Compulsive personality disorder
AS adults have been subjected to strange therapies - group therapy
for years
selective mutism
medical disorders eating disorders
substance use disorders - suggested high rate of alcoholism
forensic psychiatric problems can be severe and can be difficult
terrible conclusions drawn by public because of newspaper reports based on one study OCD, washing rituals, contamination rituals not typical of autism hyperlexia, clearly associated high IQ, mathematicians? many cases of NVLD are the same as AS right hemisphere syndrome
semantic pragmatic disorder, some speech therapists say all kids only the pragmatic part of the problem
valid reliable dx
if no language by age 7 mostly likely will keep autistic disorder dx probably some genetic subgroups in AS subgroups 1) no genetic predisposition in the family small subgroup 2) child has someone else with autism and someone else with AS in family 3)it's a different, only individuals with AS and maybe 50% of family members have AS it could be that this is a different group, maybe the cases of autism have a second hit autism and asperger's are the same, only IQ determines the dx tentative conclusion
--- OK that's it, as bad as it is. You should be able to watch the 2 talks on a Real Player from the MIND institute website soon... oddizm
>Or maybe I'm expecting too much of our highest court? Might be expecting too much. Law isn't for the minority. Never has been. never will be. This is why I see myself as an anarchist.
Again.. from me, and Hi oddizm! "I thought your lawyer was supposed to speak for YOU, sounds like he was speaking for himself. too bad." I got that. It doesn't matter if a lawyer has a kid on the spectrum, as long as he or she does the talking for someone other than their client! In other words, it is still MISrepresentation. Check with the Canadian Bar Society or Law Society. "Dr. Gillberg spoke yesterday at the MIND and said some very good pro-autistic things, from my point of view. His talk should be available for viewing on the MIND website in the next month...I think." Odd, since last time I saw him the git was saying rather nasty things about autistics (Oulu Nordic Conterfence on AS/Autism... I had planned to ask him a question, but was overlooked by Marko Kielinen who is a big Gillberg fan and knew that I would ask a challenging question!) Thanks fucking Marko, ya bastard! "I grabbed his upper arm and rattled him back and forth and said, "thank you very much!" - he smiled." I would have smacked the bastard. For not being pro-autistic sooner. "I do believe he used the word "respect" in reference to people with autism....he said "don't call them autistics". I told him I call myself autistic, and he said, "that's fine for you, but THEY should call you an autistic." " About fucking time! But he sounds a bit fuckedon this issue!!!!! "the point being that he believes the doctors, et al are dehumanizing us." Yes they are. But not as much as psychologists like Mulick and Lovaas and Newman. Which is why I still think most psychologists are fucking stupid. "Very nice man." I do hope so. Like I say last I saw of him, he was a proper git. "I hope you agree on this one. :-)" We'll see...... "That's very wonderful that the ISNT made it to the supreme court (Institute for the Study of the Neurologically Typical)" Yes, as long as we weren't having the piss ripped out of us. "Thanks Michelle for your efforts, I imagine that it was pretty overloading." This I agree with, wholeheartedly. No reseverations. "Did you wear a skirt, frilly blouse and jewelry??? Lots of mascara? :-) Did Ralph help pick out your clothes?" Ooh er...... ;) "oddizm" Odditi!
"I'm a bit worried about me too." Oh -ooooo.... "Auton was scheduled for two days, but it only took one, so we were finished yesterday. I've repeated it several times but it's worth saying again that in order to speak at the Supreme Court of Canada, one must be a lawyer. I'm not a lawyer, so a lawyer had to speak for me." This sucks cocks in hell, and worse. Governments who impose such rules are bags of shite. Full stop. "Our presentation was last. This resulted from a lot of jockeying where the parents tried to move us to somewhere they would be able easily to respond to us. Instead, I suggested that anywhere but last was misleading, since I was supporting neither party. This was actually accepted. As a results, the parents' lawyer reserved some of his time for argument for after us." Oh? "My lawyer (who has been a volunteer throughout, and who has an autistic son) warned me that I would be disappointed in what he said, and I was." Did well legally and did well otherise are two different things, on account of how we allow our legal systems to work, which - mostly - they fucking don't! "He believes he did well and I disagree. We have had other such disagreements in the long time we have, in one way or another, worked together. In this case, he had the last word and I found that very hard to take. I am still finding that very hard to take." I am so sorry to hear that. *virtual hug for _our_ Michelle, who does her very best* And you ARE OUR Michelle. Those of us who have gotten to know you throughout this ... we love you and believe in you and what you say. Minor points notwithstanding. I would be over there too, given my current marital status, supporting you. Really. I would. "The parents responded directly to us, and this was a lot easier than it should have been. I was the only intervener singled out, which is interesting," Yes, it is. I think that they wanted it to stand on your ideas. So they could get in with an emotive thing, nothing scientific, just emotive. "because one other of the non-gov't interventions (there were six) was excellent. I practically cried. This was from the LEAF/DAWN group. They actually quoted the ISNT. ISNT at the Supreme Court of Canada! I shook the lawyer's hand and they said they were heavily influenced by what autistic people had written. This is at odds with their original application, so change is possible." Hmmmm... I worry when people do that without actually saying so publically. "Both my lawyer and I were verbally attacked (separate incidents) after by parents." Shit. There is no god! "Decision is about six months down the line." You don't sound hopeful. Anything I can do?
ouch! :-) oddizm
Michelle: In this case, he had the last word and I found that very hard to take. I am still finding that very hard to take. I'm thinking the Supreme Court judges will have the last say. Trusting that they take their job seriously, and your intervention seriously, they'll have noted the difference between what you say and what your lawyer says. Yes? Or maybe I'm expecting too much of our highest court?
Did you wear a skirt, frilly blouse and jewelry??? Lots of mascara? :-) Did Ralph help pick out your clothes? Doctors want a second x-ray - they've never seen a tiara up someone's nose. </flippancy>
I thought your lawyer was supposed to speak for YOU, sounds like he was speaking for himself. too bad. Dr. Gillberg spoke yesterday at the MIND and said some very good pro-autistic things, from my point of view. His talk should be available for viewing on the MIND website in the next month...I think. I grabbed his upper arm and rattled him back and forth and said, "thank you very much!" - he smiled. I do believe he used the word "respect" in reference to people with autism....he said "don't call them autistics". I told him I call myself autistic, and he said, that's fine for you, but THEY should call you an autistic." the point being that he believes the doctors, et al are dehumanizing us. Very nice man. I hope you agree on this one. :-) That's very wonderful that the ISNT made it to the supreme court (Institute for the Study of the Neurologically Typical) Thanks Michelle for your efforts, I imagine that it was pretty overloading. Did you wear a skirt, frilly blouse and jewelry??? Lots of mascara? :-) Did Ralph help pick out your clothes? oddizm
Auton was scheduled for two days, but it only took one, so we were finished yesterday. I've repeated it several times but it's worth saying again that in order to speak at the Supreme Court of Canada, one must be a lawyer. I'm not a lawyer, so a lawyer had to speak for me. Our presentation was last. This resulted from a lot of jockeying where the parents tried to move us to somewhere they would be able easily to respond to us. Instead, I suggested that anywhere but last was misleading, since I was supporting neither party. This was actually accepted. As a results, the parents' lawyer reserved some of his time for argument for after us. My lawyer (who has been a volunteer throughout, and who has an autistic son) warned me that I would be disappointed in what he said, and I was. He believes he did well and I disagree. We have had other such disagreements in the long time we have, in one way or another, worked together. In this case, he had the last word and I found that very hard to take. I am still finding that very hard to take. The parents responded directly to us, and this was a lot easier than it should have been. I was the only intervener singled out, which is interesting, because one other of the non-gov't interventions (there were six) was excellent. I practically cried. This was from the LEAF/DAWN group. They actually quoted the ISNT. ISNT at the Supreme Court of Canada! I shook the lawyer's hand and they said they were heavily influenced by what autistic people had written. This is at odds with their original application, so change is possible. Both my lawyer and I were verbally attacked (separate incidents) after by parents. Decision is about six months down the line.
No heard from you on here for a while... you okay? Bit worried about how it may have gone in Auton court case.
Thank you for the autistics who don't know they are autistic (if I may be so bold). Dr. Gillberg (of Sweden and England) said that the best estimates seem to be that there are about 1% of the population well into the autism spectrum (not counting "broader autism phenotype" etc, but AS and autism, and atypical autism) Oddizm
Hear hear!
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