Karen A Report post Posted April 28, 2009 At both my son's assessment and my own we were asked about any other family members with any dx's, so it's obviously of some significence to the medics... Bid Hi.Do you know I had the same thought this morning. CAMHS spent several sessions looking at the incidence of dyspraxia,speech delay and possible ASD traits [i know you all hate that phrase I don't like it either it is the only shorthand I have for the two pages of notes I had regarding rigid routines,lack of social understanding,inability to take turns in conversation etc etc ] within my family CAMHS did document these in the report and they were read by the psychiatrist who eventually did the 3di.The original psychiatrist who had 25 years experience in diagnosing children with ASD considered them relevant. Incidently the CAMHS psychiatrist who has specialist knowledge in ASD was very clear that she thinks ASD is a genetic condition.She said it is only a matter of time before there will be a blood test that can show whether an individual has ASD.She says things will then be much more straight forward as the current methods of assessing by documenting specific observed behaviours will no longer be needed. On the other side I have to say that the psychotherapists who are also very experienced do not have the same view. Karen. Quote Share this post Link to post Share on other sites
baddad Report post Posted April 28, 2009 At both my son's assessment and my own we were asked about any other family members with any dx's, so it's obviously of some significence to the medics... Bid Absolutely! I don't think anyone is arguing (and i'm certainly not - in case anyone has misinterpreted) that there isn't evidence of a genetic predisposition and/or that 'traits' won't be visible in other members of a family... All I'm saying is that 'traits' aint autism, and (like bottoms) everybody has got 'em, and if you're looking for something that's pretty much a universal ('traits') it's odds on you'll find it. it's like saying, I'm going looking for four leaved clovers, and then qualifying it by saying 'well -I'll count any that have three or more... 'traits' is the qualifier... L&P BD Quote Share this post Link to post Share on other sites
Mumble Report post Posted April 28, 2009 I'm probably going to word this badly and make no sense - struggling a bit today , but... Is there not a difference between a proposed genetic link (which I think has some fairly solid evidence although this is by no means everything and having the genetic difference wouldn't automatically make someone autistic) and looking for characteristics in a family and saying "ooh, something going on here"? A genetic link has a medical basis and you are unlikely (purely on a statistical basis) to find it in every family member. Some recent research suggests generation skipping, parents may have the gene and pass it on without being affected themselves (as is the case for many genetic conditions - I have a genetic mutation (gawd I hate that word... ) that makes me far more susceptible than the general population to a particular disease but I don't have the condition and may never have), and/or some siblings inherit or do not inherit that particular genetic variation. A genetic variation/mutation is something you either have or do not have - there is no in-between. The outcomes for an individual with that variation may be different. Characteristics/traits on the other hand are observable and located within our perceptions. Characteristics are not always specific and open to a degree of (mis)interpretation (intended or not), and as I've said before can be worked to fit what we see (or we fit what we see to what we read). Given the huge lists of characteristics set out within, for instance, the AQ and EQ tests, if you present me with anyone I would be happy to bet that I could find something (or perhaps quite a lot) to fit in some way - enough to 'raise doubts' - provided I can ignore what would go against my claims. I'm not saying at all that people do this purposely but when an idea is put in our head we do tend to hone our observations based on what we think we should see. Take all the posters in doctors surgeries - you don't need to be a hypochondriac to think, oh, I have some of those symptoms, perhaps I have Mumbleitis E621 (green-polka dot strain)* In terms of diagnostic assessment, I think it is helpful to look at family - this serves many purposes: ruling out other conditions, bringing other possibilities to the discussion, and giving the person being diagnosed an opportunity to talk without a sole focus on themselves as well as to support diagnosis. *Mumbleitis E621 There has recently been an outbreak of Mumbleitis (variation Green-polka-dot) Make sure you know the symptoms: look out for your friends and relatives If you have three or more of these symptoms contact your doctor immediately: Increased chocolate consumption on any day within the last month Difficulty deciding which chocolate to buy A green tinge to the skin - especially after mowing the lawn or gardening You have subconsciously decided to wear an item of green clothing Decreased appetite Looking outside the main colour you see is green Either: Polka dot skin marking, a desire to wear polka dots or seeing at least one person wearing polka dots (excluding ABBA tribute band members) Increased irritability with at least one member/group of the public Forgetfulness Falling asleep more easily than usual No change in appetite when you have experienced change in the past Repetition (or feeling you need to repeat yourself for others to listen) Increased chocolate consumption on any day within the last month Dropping non-chocolate based food items - particularly vegetables (there is a belief Mumbleitis sets up a magnetic field which may repel certain food items) Feeling tired Wishful thinking Daydreaming or thinking about a 'better place' Increased appetite Hyperactivity and not feeling tired Difficulty sleeping Increased memory capacity Aversion to polka dot patterns Aversion to green - in food (i.e. peas, celery), clothes, accessories etc. Preferring to be fed fish from a bucket Desire to go swimming Need for group touch/cuddling Quote Share this post Link to post Share on other sites
pearl Report post Posted April 28, 2009 Now Pearl was it you who spoke some time ago about knowing when to use the x at the top of the screen ? Karen. Nope I think that was Mumble - people are always attributing others words of wisdom to me! (2nd time in this thread!) Don't worry I'll just take all the credit ... Quote Share this post Link to post Share on other sites
Karen A Report post Posted April 28, 2009 (edited) I'm probably going to word this badly and make no sense - struggling a bit today , but... Is there not a difference between a proposed genetic link (which I think has some fairly solid evidence although this is by no means everything and having the genetic difference wouldn't automatically make someone autistic) and looking for characteristics in a family and saying "ooh, something going on here"? A genetic link has a medical basis and you are unlikely (purely on a statistical basis) to find it in every family member. Some recent research suggests generation skipping, parents may have the gene and pass it on without being affected themselves (as is the case for many genetic conditions - I have a genetic mutation (gawd I hate that word... ) that makes me far more susceptible than the general population to a particular disease but I don't have the condition and may never have), and/or some siblings inherit or do not inherit that particular genetic variation. A genetic variation/mutation is something you either have or do not have - there is no in-between. The outcomes for an individual with that variation may be different. Characteristics/traits on the other hand are observable and located within our perceptions. Characteristics are not always specific and open to a degree of (mis)interpretation (intended or not), and as I've said before can be worked to fit what we see (or we fit what we see to what we read). Given the huge lists of characteristics set out within, for instance, the AQ and EQ tests, if you present me with anyone I would be happy to bet that I could find something (or perhaps quite a lot) to fit in some way - enough to 'raise doubts' - provided I can ignore what would go against my claims. I'm not saying at all that people do this purposely but when an idea is put in our head we do tend to hone our observations based on what we think we should see. Take all the posters in doctors surgeries - you don't need to be a hypochondriac to think, oh, I have some of those symptoms, perhaps I have Mumbleitis E621 (green-polka dot strain)* In terms of diagnostic assessment, I think it is helpful to look at family - this serves many purposes: ruling out other conditions, bringing other possibilities to the discussion, and giving the person being diagnosed an opportunity to talk without a sole focus on themselves as well as to support diagnosis. Hi.I think one of the difficulties is that currently the only way to diagnose ASD is by having a picture of particular behaviours across the triad of impairment.So the point at which an individual qualifies for a diagnosis is very much open to professional opinion . Ben is an excellent example.It is also safe to use his case because he has a diagnosis now. One professional with years of experience in ASD dx [a child and adolescent psychiatrist with 20 years expeience] felt after thorough asseessment that Ben did not meet the criteria to qualify for a diagnosis.Another child and adolescent psychiatrist decided having done a 3di that he definitely did. I think that ultimately current diagnosis is dependent on a professional opinion of what is observed.Our current CAMHS team even use the phrase autistic features [although I don't like the phrase].In fact the 3di is based almost completely on what parents describe having observed during their child's early development.So it is in effect based largely on parental perceptions. .However it is not currently scientific in the way a genetic test would be.In our case the CAMHS psychotherapists who have seen Ben for two years still say that they do not think that Ben has ASD because they percieve things differently to the psychiatrists. The 3di is supposed to be a more accurate assessment tool to the ADOS.I observed the ADOS for Ben.As far as I could tell it was even more a matter of an experienced professional documenting specific behaviours that the test is designed to draw out as the professional percieves them.Now before anyone jumps on me. I am not saying that a professional is not much more experienced and qualified to make an assessment on ASD diagnosis than an individual with a list and a hunch who wants to confirm their hunch.I just think that to some extent it does depend on individual perception.Karen. I would certainly not support the view that there is a clear genetic link.Our elder son is just about as not ASD as it is possible to be [don't know that there is such a term but never mind ] Edited April 28, 2009 by Karen A Quote Share this post Link to post Share on other sites
Karen A Report post Posted April 28, 2009 I'm probably going to word this badly and make no sense - struggling a bit today , but... Is there not a difference between a proposed genetic link (which I think has some fairly solid evidence although this is by no means everything and having the genetic difference wouldn't automatically make someone autistic) and looking for characteristics in a family and saying "ooh, something going on here"? A genetic link has a medical basis and you are unlikely (purely on a statistical basis) to find it in every family member. Some recent research suggests generation skipping, parents may have the gene and pass it on without being affected themselves (as is the case for many genetic conditions - I have a genetic mutation (gawd I hate that word... ) that makes me far more susceptible than the general population to a particular disease but I don't have the condition and may never have), and/or some siblings inherit or do not inherit that particular genetic variation. A genetic variation/mutation is something you either have or do not have - there is no in-between. The outcomes for an individual with that variation may be different. Characteristics/traits on the other hand are observable and located within our perceptions. Characteristics are not always specific and open to a degree of (mis)interpretation (intended or not), and as I've said before can be worked to fit what we see (or we fit what we see to what we read). Given the huge lists of characteristics set out within, for instance, the AQ and EQ tests, if you present me with anyone I would be happy to bet that I could find something (or perhaps quite a lot) to fit in some way - enough to 'raise doubts' - provided I can ignore what would go against my claims. I'm not saying at all that people do this purposely but when an idea is put in our head we do tend to hone our observations based on what we think we should see. Take all the posters in doctors surgeries - you don't need to be a hypochondriac to think, oh, I have some of those symptoms, perhaps I have Mumbleitis E621 (green-polka dot strain)* In terms of diagnostic assessment, I think it is helpful to look at family - this serves many purposes: ruling out other conditions, bringing other possibilities to the discussion, and giving the person being diagnosed an opportunity to talk without a sole focus on themselves as well as to support diagnosis. *Mumbleitis E621 There has recently been an outbreak of Mumbleitis (variation Green-polka-dot) Make sure you know the symptoms: look out for your friends and relatives If you have three or more of these symptoms contact your doctor immediately: Increased chocolate consumption on any day within the last month Difficulty deciding which chocolate to buy A green tinge to the skin - especially after mowing the lawn or gardening You have subconsciously decided to wear an item of green clothing Decreased appetite Looking outside the main colour you see is green Either: Polka dot skin marking, a desire to wear polka dots or seeing at least one person wearing polka dots (excluding ABBA tribute band members) Increased irritability with at least one member/group of the public Forgetfulness Falling asleep more easily than usual No change in appetite when you have experienced change in the past Repetition (or feeling you need to repeat yourself for others to listen) Increased chocolate consumption on any day within the last month Dropping non-chocolate based food items - particularly vegetables (there is a belief Mumbleitis sets up a magnetic field which may repel certain food items) Feeling tired Wishful thinking Daydreaming or thinking about a 'better place' Increased appetite Hyperactivity and not feeling tired Difficulty sleeping Increased memory capacity Aversion to polka dot patterns Aversion to green - in food (i.e. peas, celery), clothes, accessories etc. Preferring to be fed fish from a bucket Desire to go swimming Need for group touch/cuddling Very good mumble. I have had practice at assessing symptoms this morning. My son having listened with care to the news and advice by health officials was convinced that he currently meets the criteria for a diagnosis of flu. He was not pleased when I pointed out that although he could describe the symptoms in detail I could see no evidence of any of them.......Karen. Quote Share this post Link to post Share on other sites
Karen A Report post Posted April 28, 2009 Nope I think that was Mumble - people are always attributing others words of wisdom to me! (2nd time in this thread!) Don't worry I'll just take all the credit ... Ah well you speak so much widom that people are bound to attribute any wisdom at all to you. Whereas BD................ Karen. Quote Share this post Link to post Share on other sites
baddad Report post Posted April 28, 2009 Ah well you speak so much widom that people are bound to attribute any wisdom at all to you. Whereas BD................ Karen. oooh... take another look... it's all good - just not the 'received' wisdom. Quote Share this post Link to post Share on other sites
MelowMeldrew Report post Posted April 28, 2009 At both my son's assessment and my own we were asked about any other family members with any dx's, so it's obviously of some significence to the medics... Bid And/or they are just as in the dark as we are... Quote Share this post Link to post Share on other sites
Mum of 3 Report post Posted April 28, 2009 The whole of my DH's family is anti-social, either argumentative (the women), or silent and taciturn (the men). They have always come across as just rude and ill-mannered. My DH, on the other hand, just comes across as shy, as his silence is coupled with a self-effacing nature that endeers him to people (brings out their 'mothering' instinct?). He still has poor social skills, though, and is completely flummoxed when people in shops/restaurants walk off without responding to his requests (he speaks so quietly, and makes no eye contact, so they are unaware he has spoken!). He finds it really hard to understand other people's emotions, and is very poor at relating what happens in one situation to what happens in another, almost identical situation.....i could go on, you get the picture. Before the doctor started to mention As regarding my son, I knew little about it. Once I started reading about it, Everyone had it ! Including ALL DH's family!!! Now, I've relaxed a bit, and have gone back to thinking they're probably just rude and ...well..I have to say it...From 'down South', so what can you expect (Ducks for cover) I've always looked to DH's family for the 'genetic' link, but now my DS is being put in for a test for Fragile X, and that is only passed to boys through the mother!!! Oh dear, Time for some humble pie, methinks Quote Share this post Link to post Share on other sites
