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Michelle Dawson  725
06-15-2004 10:29 PM 
I usually wouldn't post a link to my own site here, but there were questions about what happened at the Supreme Court. Here's an account http://www.sentex.net/~nexus23/naa_wro.html


MUMCAT  724
06-14-2004 08:53 PM 
Is there anyone in London/England that could attend an Educational Annual Review for a child on July 6th to oppose the whole placement of a non-verbal child in an ABA 'CABAS' school whom has been tortured with SEVEN YEARS of ABA? I can be contacted through my website (below) and appreciate feedback. Thank you. 
www.celebrateautismtoday.org 


David Andrews AppEdPsych  723
06-13-2004 08:44 PM 
>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.

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. 


Michelle Dawson  722
06-13-2004 08:28 PM 
Having read that article (Philip's Observer article) twice with varying degrees of attention, I agree it's mostly sympathetic. I like this observation,

"'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. 


Ralph Smith  721
06-12-2004 12:09 PM 
Edited by author 06-12-2004 12:14 PM 
Philip:

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


Philip  720
06-12-2004 11:28 AM 
I was searching through the archives of the guardian.co.uk website for articles on autism when I found this one http://observer.guardian.co.uk/review/story/0,6903,507912,00.html from The Observer, a British liberal Sunday broadsheet, for 17th June 2001. Entitled 'Is anybody out there? it is well-informed,sympathetic and fairly unsensational article, in spite of asking if we are "on the brink of an epidemic". The author, Kate Kellaway writes that "What autistic people share is a difficulty with communication. Some cannot speak at all..." However non-verbal autistic people can communicate using written or electronic or other forms of communication.
I don't know if I should be worried about Michelle's absence from here for two days. 


David Andrews AppEdPsych  719
06-12-2004 12:17 AM 
No Michelle yet?

Now I'm worried.... 


David Andrews AppEdPsych  718
06-11-2004 01:44 AM 
Edited by author 06-11-2004 01:45 AM 
>Hi David,

*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.
>He said that something like 20 of the girls...or more...ack, can't remember who were referred for social difficulties ended up being on the autism spectrum, only 3 had been dxd ASD before the study.

*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


oddizm  717
06-11-2004 01:25 AM 
Hi David,

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 said that something like 20 of the girls...or more...ack, can't remember who were referred for social difficulties ended up being on the autism spectrum, only 3 had been dxd ASD before the study.

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


David Andrews AppEdPsych  716
06-11-2004 12:41 AM 
>"mothers status because father with AS went travelling find a bride from another culture"

I did that. Look where it fucking got me.

Nowhere.


David Andrews AppEdPsych  715
06-11-2004 12:40 AM 
"Hi David,"

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
He said that the term Pervasive might be misleading for high functioning individuals with autism...doesn't like the term "high functioning autism" grammatically..."

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
late onset autism, no difference from cdd"

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
mental retardation is there in about 15% of all"

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)
tuberous sclerosis"

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
2-4:1"
"not as skewed as people think in reality"
"study of 100 girls in Sweden, I think, with social deficits
only 3 of the 100 girls were previously diagnosed with ASD"

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.

---
"Acquired brain lesions"

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
silver-russel syndrome many have aspergers"

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"
"3-9% of all autism cases, more common in those with epilepsy
chromosome 16p involved in one variant (autism susceptibi genetic are? adhd suscptibibil genetic area...tuberous leads to adhd"

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
more lesions =more autistic symptoms"

May be so..... but recent study at a major centre in US (forget which) suggests otherwise.

"thalidomide embryopathy
autism, abnormal limbs, abnormal tearing (duane syndrome) iwth mild, moderate or severe retardation"

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
affects temporofrontal areas more often than other brain structures."

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 in 10-20% spectrum disorder"

"sibs affected 3% in core syndrome"

"identical co twins is 60-90% non- is 0-3%
only in studies in children with classical autism"

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
social phobia, obsessive-compulsive phenomena, and broader phenotype symptoms"

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
angelman from mother...has high rate of autism 40-70%"

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
other neurodevelopment in neuroligin"

"clinical finding"
"macrocephalus common bayley et al 1997, gillberg & de Souza 2002
probably a bigger subgroup 1 in 5 have clearly larger heads"

"acquired brain lesions implicate frontotemporal
right or left dysfunction in asperger's
brainstem damage"

But my MRI was no sognificantöy fucked---- ?????!!!!!

"thalidomide
moebius syndrome and CHARGE association in brain stem"

"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
autopsy studies
functional imaging studies
neuropsychological studies"

""
"metarepresentation and TOM "
"ASD problems with TOM have been overstated, kids get it later but DO get TOM"
"our lack of TOM is not strongly supported by the evidence, cuts across lots of other disorders,lack of TOM doesn't indicate autism"

"aberrant reading of facial expressions
aberrant unusual face processing"

"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
if every part of the brain is damaged then autism likely there"

>"I don't like the "high functioning" sounds like the autism is high functioning, but "high functioning"individuals with autism can be
exactly as severe in autism as those with low. "

*

>"I know quite a number of "low functioning" who are
more sociable than asperger's have better drive for social functioning than those with asperger's"

*

"neurochemistry
serotonin abnormalities
in MR also found the same"

"noradrenaline
neuroligins
gfa protein in csf glial support for forming neural"

"some sort of pruning deficit might be connected to GFA protein problem"

"gangliosides
endorphins
glycine
GABA
 acetylcholine
 glutamate
immune system"

"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,
striking how little we know about psychopharmacology"

"The pathogenetic chain
genetic or enviornmental insult
damage or neurochemical dysfunction"

"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
  good to document all other"

>"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
their individuality is extremely important"

"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
better with early diagnosis"

"majority probably live to be old, but increased mortality in subgroup"

"specific knowledge and better treatment
symptomatic treatments"

"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
only in 1981 with Wing's book, did it take off as a major part of child psychology"

"longer understood in Europe
Gillberg & Gillberg operationalized criteria, took Asperger's publication and found which symptoms were common to three of the four kids in detail."

"tried to get the 20 symptoms to be grouped under 4 categories
in 1989"

"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
dsm-iv"

"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
nothing wrong for 3 years and then suddenly severely affected"

"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
you only need to have 2 social symptoms and
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"

"1-3 of 3 circumscribed"
"1-2 of 2 ritualism"
"3-5 symptoms of speech and language peculiarties"

"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
kids
look
confused or questioning"

"looks very depressed,
or smiling all the time"

"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 ehlers-gillberg 1993, ehlers et all 1999
27 item questionairre, almost exactly the same for teachers and parents, can also screen for Tourettes"

"ASSQ - 0 -1- 2
scale 27 questions"

"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
focussing not just on classic autism, algorithm, gives various diagnostic"

"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
asperger's syndrome diagnostic interview"

"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"
"AQ - adults simon baron-cohen"

"prevalence
four published community based studies four different"
"2.6 percent
3.6 percent in a community in Gotheburg
Kadesjo 1999 4.8
Bertrand et al 2001 (as/pdd nos) 2.7"

"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
9% Tourettes with"

"80% of AS kids have kids"

"1 in 4 meet full Tourette's"

""personality disorders" most common misdiagnosis
of adults with"

"100% will meet criteria one personality disorder for instance, Obsessive Compulsive personality disorder
most common dx"

"gets in trouble"

A"S adults have been subjected to strange therapies - group therapy for years
break up with their families
doesn't help to be in that kind of therapy"

"selective mutism
should always think that it could be autism or asperger's"

"medical disorders"

"eating disorders
 anorexia nervosa
 1 in 5 anorexics have unidentified autism is what contributes to their poor outcome"

"substance use disorders - suggested high rate of alcoholism
new follow up study does not support"

"forensic psychiatric problems can be severe and can be difficult"

"vast majority will never commit any crimes
desperately would not want to 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
white matter disorder"

"semantic pragmatic disorder, some speech therapists say all kids"

"only the pragmatic part of the problem
don't talk about high-functioning autism say high functioning individuals with autism"

"valid reliable dx
more likely that it
it is more helpful to say an autism spectrum person with this or that language problem..."

"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
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"


oddizm  714 
06-10-2004 10:15 PM 
Hi David,
He also said that there were things he used to believe, but that he "grew up" and changed his mind.

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

-------------
Pdd -highest functioning not pervasive for them
He said that the term Pervasive might be misleading for high functioning individuals with autism...doesn't like the term "high functioning autism" grammatically...

Kanner what he described is not the same as in ICD-10 Dsm -iv

childhood disintigrative disorder, sometimes near normal to toddler age
late onset autism, no difference from cdd

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
mental retardation is there in about 15% of all

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
low and middle 120 over a period of 20 years...epilepsy in 40% of autistics by 24 years of age

the epilepsy sometimes arises in adolescence and young adulthood

classic variants Medical disorders in 5% (25% in AD)
tuberous sclerosis
fragile x not sent to autism clinics (which is stupid, basically, he said)

they don't want diagnose extra things like autism and aDD once they get one dx...

skewed male:female
2-4:1
not as skewed as people think in reality
study of 100 girls in Sweden, I think, with social deficits
only 3 of the 100 girls were previously diagnosed with ASD

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"
---
Acquired brain lesions

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
silver-russel syndrome many have aspergers

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
3-9% of all autism cases, more common in those with epilepsy
chromosome 16p involved in one variant (autism susceptibi genetic are? adhd suscptibibil genetic area...tuberous leads to adhd

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
more lesions =more autistic symptoms

thalidomide embryopathy
autism, abnormal limbs, abnormal tearing (duane syndrome) iwth mild, moderate or severe retardation

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
affects temporofrontal areas more often than other brain structures.
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...

several medial temporal frontal lobe damage
sibs affected in 10-20% spectrum disorder

sibs affected 3% in core syndrome

identical co twins is 60-90% non- is 0-3%
only in studies in children with classical autism

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
social phobia, obsessive-compulsive phenomena, and broader phenotype symptoms

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
angelman from mother...has high rate of autism 40-70%

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
other neurodevelopment in neuroligin

clinical finding
macrocephalus common bayley et al 1997, gillberg & de Souza 2002
probably a bigger subgroup 1 in 5 have clearly larger heads

acquired brain lesions implicate frontotemporal
right or left dysfunction in asperger's
brainstem damage

thalidomide
moebius syndrome and CHARGE association in brain stem

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
autopsy studies
functional imaging studies
neuropsychological studies

""
metarepresentation and TOM
ASD problems with TOM have been overstated, kids get it later but DO get TOM
our lack of TOM is not strongly supported by the evidence, cuts across lots of other disorders,lack of TOM doesn't indicate autism

aberrant reading of facial expressions
aberrant unusual face processing

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
if every part of the brain is damaged then autism likely there

I don't like the "high functioning" sounds like the autism is high functioning, but "high functioning"individuals with autism can be
exactly as severe in autism as those with low.

"I know quite a number of "low functioning" who are
more sociable than asperger's have better drive for social functioning than those with asperger's"

neurochemistry
serotonin abnormalities
in MR also found the same

noradrenaline
neuroligins
gfa protein in csf glial support for forming neural

some sort of pruning deficit might be connected to GFA protein problem

gangliosides
endorphins
glycine
GABA
 acetylcholine
 glutamate
immune system

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,
striking how little we know about psychopharmacology
 

The pathogenetic chain
genetic or enviornmental insult
damage or neurochemical dysfunction

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
  good to document all other

"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
their individuality is extremely important

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
better with early diagnosis
majority probably live to be old, butincreased mortality in subgroup

specific knowledge and better treatment
symptomatic treatments

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
only in 1981 with Wing's book, did it take off as a major part of child psychology

longer understood in Europe
Gillberg & Gillberg operationalized criteria, took Asperger's publication and found which symptoms were common to three of the four kids in detail.

tried to get the 20 symptoms to be grouped under 4 categories
in 1989

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
dsm-iv

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
nothing wrong for 3 years and then suddenly severely affected

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
you only need to have 2 social symptoms and

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
1-3 of 3 circumscribed
1-2 of 2 ritualism
3-5 symptoms of speech and language peculiarties

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
kids
look
confused or questioning

looks very depressed,
or smiling all the time

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 ehlers-gillberg 1993, ehlers et all 1999
27 item questionairre, almost exactly the same for teachers and parents, can also screen for Tourettes

ASSQ - 0 -1- 2
scale 27 questions

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
focussing not just on classic autism, algorithm, gives various diagnostic

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
asperger's syndrome diagnostic interview

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
AQ - adults simon baron-cohen

prevalence
four published community based studies four different
2.6 percent
3.6 percent in a community in Gotheburg
Kadesjo 1999 4.8
Bertrand et al 2001 (as/pdd nos) 2.7

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
9% Tourettes with

80% of AS kids have kids

1 in 4 meet full Tourette's

"personality disorders" most common misdiagnosis
of adults with

100% will meet criteria one personality disorder for instance, Obsessive Compulsive personality disorder
most common dx
gets in trouble

AS adults have been subjected to strange therapies - group therapy for years
break up with their families
doesn't help to be in that kind of therapy

selective mutism
should always think that it could be autism or asperger's

medical disorders

eating disorders
 anorexia nervosa
 1 in 5 anorexics have unidentified autism is what contributes to their poor outcome

substance use disorders - suggested high rate of alcoholism
new follow up study does not support
 

forensic psychiatric problems can be severe and can be difficult
vast majority will never commit any crimes
desperately would not want to 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
white matter disorder

semantic pragmatic disorder, some speech therapists say all kids

only the pragmatic part of the problem
don't talk about high-functioning autism say high functioning individuals with autism

valid reliable dx
more likely that it
it is more helpful to say an autism spectrum person with this or that language problem...

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

---

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


David Andrews AppEdPsych  713 
06-10-2004 09:36 PM 
I'm getting weird things happening here :O 


David Andrews AppEdPsych  712
06-10-2004 08:57 PM 
Hi Ralph...

>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. 


David Andrews AppEdPsych  711
06-10-2004 08:54 PM 
Edited by author 06-10-2004 08:57 PM
"Hi Michelle,"

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!


David Andrews AppEdPsych  710
06-10-2004 08:40 PM 
Oh Michelle....

"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?


oddizm  709
06-10-2004 08:32 PM 
Ralph:

ouch! 

:-)

oddizm 


ralph smith  708
06-10-2004 06:29 PM 
Edited by author 06-10-2004 06:36 PM 
If anyone thinks we should move this to the corresponding discussion board:
http://www.quicktopic.com/25/H/aDxhLNmfnRfKw


ralph smith  707
06-10-2004 06:25 PM 
Michelle:

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?


ralph smith  706
06-10-2004 06:14 PM 
oddizm:

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>


oddizm  705
06-10-2004 03:33 PM 
Hi Michelle,

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


Michelle Dawson  704
06-10-2004 03:17 PM 
I'm a bit worried about me too.

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.


David Andrews AppEdPsych  703
06-10-2004 01:43 PM 
Michelle,

No heard from you on here for a while... you okay?

Bit worried about how it may have gone in Auton court case. 


oddizm  702
06-10-2004 12:23 AM 
Thank you from my being, too.

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


David Andrews AppEdPsych  701
06-09-2004 01:47 PM
As Philip says: "I don't want to embarrass you, but I thank you with all being for what you are doing for autistic people."

Hear hear!
 

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