tag:blogger.com,1999:blog-5841910768079015534.post1013200048694008925..comments2024-03-25T17:14:36.888+00:00Comments on BishopBlog: Are our ‘gold standard’ autism diagnostic instruments fit for purpose?deevybeehttp://www.blogger.com/profile/15118040887173718391noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-5841910768079015534.post-16782809731528381772012-07-25T14:57:44.431+01:002012-07-25T14:57:44.431+01:00What a great blog and an intriguing discussion. I...What a great blog and an intriguing discussion. I applaud you for questioning the "Gold Standard". Our lab has been skeptical about this claim for some time. My question is this: What exactly is the criteria for "gold standard"? As someone with a background in evaluating tools and tests, I would think that psychometric evidence (e.g. how a test does compared to others, size of the norming sample in terms of # of items, and ability to discriminate between similar conditions) might be some of the criteria in a gold standard (our review discussing some of these considerations for adult asperger syndrome tools can be found here-sorry it is not open access, but email me if you'd like a copy of the paper: http://www.tandfonline.com/doi/abs/10.1080/13854046.2011.559482. <br /><br />In perusing the manual for the ADI-R, one notes some very basic issues that do not uphold "Gold Standards" in test development and this leads to questions about what the term really means in the field of autism research and practice. How did these tools become the "Gold Standard"? Was it language used to market the test in the early stages? Did expert consensus put it forth? If so, was this a research-based consensus, or just a prevailing opinion? Or did people just say "Gold Standard" enough times that is was accepted? I am so pleased to see others questioning this claim-though to be clear, I would have no difficulty with it if the actual criteria were detailed. What is it about these particular tools that makes them "gold standard"? Can we test this claim out (yes, and our lab is working on it)? It really is time we sorted this issue out. Thank you for some great posts!<br /><br />Now, just a quick response to Anonymous:<br />People with ASD can certainly have intact empathy. Indeed, many individuals I see clinically report such intense feelings in emotional interactions that they avoid situations that may 'trigger' intense emotional reactions. In my doctoral work, I examined Emotional Intelligence (EI) in young adults diagnosed with Asperger syndrome, and we found that while some aspects of EI were problematic (particularly real-time social interactions that involve EI and feelings about those interactions), actual complex understanding about emotions was intact, and actually significantly better developed than typically developing controls and norm groups. While this is not a direct assessment of empathy, it points to the same conclusion you present: that people with ASD do indeed have empathy. It is, however, how they respond in 'real-time' that seems to be a bigger issue. If you are interested in the study, an early article is here, tho more recent investigations are available thru libraries: http://cjs.sagepub.com/content/23/1/70.abstract (we are working on plain language summaries on my webpage-feel free to check it out: http://home.cc.umanitoba.ca/~montgom0/index_files/Page1657.htm )<br /><br />Thank you again for this great blog!Janine Montgomeryhttp://home.cc.umanitoba.ca/~montgom0/index_files/Page1657.htmnoreply@blogger.comtag:blogger.com,1999:blog-5841910768079015534.post-562435340183805892011-11-06T13:22:37.424+00:002011-11-06T13:22:37.424+00:00Hi, I am late coming to this discussion and the qu...Hi, I am late coming to this discussion and the question I have doesn't relate precisely to the subject that is being addressed here. <br /><br />My psychiatrist has suggested that I may have 'mild/high functioning autism'. I am a female adult with lifelong severe anxiety, OCD and eating disorder. These behaviours started when I was very young and I do recall that as a child I found eye contact very difficult (too intense, frightening and intrusive). I didn't participate in pretend play with other children and found other children puzzling. I did make friends in primary school, but at puberty I 'fell apart' mentally. I couldn't cope with the changes that were happening to my body and I couldn't understand why my female peers became interested in clothes, make up and boys. I isolated myself and ended up developing anorexia nervosa.<br /><br />I am now recovered from anorexia nervosa, but I still have OCD. I accept that I do show a number of characteristics of ASD, but the one thing that confuses is me about this suggested diagnosis is that I do not lack empathy. I recognise that empathy is complex, but if, for example, I see a person or animal in pain, bullied or badly treated it causes me terrible distress. I can feel that other being's pain and I want to stop their pain. I don't always know the right response to other people's distress, but I certainly feel it. Many people with ASD deny that they lack empathy.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5841910768079015534.post-26582289261676471822011-08-05T15:58:20.966+01:002011-08-05T15:58:20.966+01:00The more I understand non-autism the more I can se...The more I understand non-autism the more I can see that the symptoms of autism are secondary and there is an underlying representational theme. Communication difficulties are due to lack of shared context, specialised interests and physical symptoms are due to information filtering, etc. All these symptoms can vanish in the right circumstances, and are mitigated to varying degrees in individuals.<br /><br />Maybe diagnosing autism is meaningless if you aren't asking for government money to treat symptoms, but out of scientific curiosity I'd like to find out more about what appears to be two distinct strands of humanity in our recent development. I LOVE this two question test that seems to probe semantic substructure: http://www.psychologytoday.com/blog/experiments-in-philosophy/200811/do-you-have-aspergers-syndrome - if anyone can work out what's going on there you'd get close to far more efficient testing.nerkulhttps://www.blogger.com/profile/04927301561819474314noreply@blogger.comtag:blogger.com,1999:blog-5841910768079015534.post-69525355669798235502011-06-05T09:16:30.612+01:002011-06-05T09:16:30.612+01:00I do agree that the term "autism" is hel...I do agree that the term "autism" is helpful as a shorthand for communication, just as the term "Broca's aphasia". If someone said to me "The person you are about to meet has Broca's aphasia", that gives me a clear picture of what types of language symptom I am likely to encounter.<br /><br />So these terms are clearly clinical useful. I was saying that they aren't scientifically useful. If there is no symptom that everyone with autism shows, then there is no particular part of cognition which is affected in all cases of autism, so what do people think they are studying when they are studying cognition in autism?<br /><br />In contrast, if you select a group of people with autism on the basis that they ALL exhibit a difficulty in understanding pragmatic aspects of language, then there is at least a chance that all of them have the same part of cognition affected, namely, that part of cognition which controls our ability to understand pragmatic aspects of language. So studying this group might tell us something about this part of cognition. Just as studying a group of people in whom head injury has impaired the understanding of pragmatic aspects of language. Studying these two different groups might even inform us about the same part of language cognition, even though the etiologies are so different.<br /><br />MaxMax Coltheartnoreply@blogger.comtag:blogger.com,1999:blog-5841910768079015534.post-12365880408784543312011-06-04T20:56:38.118+01:002011-06-04T20:56:38.118+01:00Not sure quite what services a diagnosis gives acc...Not sure quite what services a diagnosis gives access to, Dorothy, not in the UK at least.<br /><br />And even if everyone with a diagnosis of autism manifests the syndrome (the three overlapping domains of impairment), what they need support wit, surely, is their specific social, communicative and behavioural signs and symptoms - not the signs and symptoms of the average person with autism. So I'm still unsure of the purpose of a 'diagnosis' per se.Sue Gerrardnoreply@blogger.comtag:blogger.com,1999:blog-5841910768079015534.post-31994359860731719792011-06-04T16:51:50.546+01:002011-06-04T16:51:50.546+01:00thanks for all the comments. I do have a piece on ...thanks for all the comments. I do have a piece on the Korean epidemiological study in the pipeline at Guardian science blogs, which I hope will be posted soon. But I'm interested in the different perspectives revealed by the 3 commentators; isen101 regards autism as a real condition but isn't happy with current diagnostic methods; Max and Sue seem to question whether autism is a single coherent condition. I think that etiologically it's becoming clear that there isn't one cause, and there's certainly much heteroegeneity in presentation, especially if you add developmental change into the mix. But I nevertheless think that if you have someone where all 3 domains of impairment overlap then an autism diagnosis is helpful as a shorthand for communication and getting them to appropriate services. I wonder why we need quite such a time-consuming method to demonstrate this. As I've argued elsewhere, for the cases outside that central area, labelling has huge implications, both for how seriously any impairments are taken, and for access to services.deevybeehttps://www.blogger.com/profile/15118040887173718391noreply@blogger.comtag:blogger.com,1999:blog-5841910768079015534.post-6130285225945344712011-06-04T05:52:20.150+01:002011-06-04T05:52:20.150+01:00If I’ve understood Max correctly, he's saying ...If I’ve understood Max correctly, he's saying that signs and symptoms are the specific characteristics shown by individuals. <br /><br />The syndrome is impaired social interaction, communication and repetitive and stereotyped behaviours - the intersection in Dorothy’s Venn diagram. <br /><br />Sometimes individuals exhibiting the syndrome have very similar signs and symptoms - sometimes they don’t.<br /><br />But the syndrome is often conflated with the signs and symptoms - people talk about impaired social interaction, communication and repetitive and stereotyped behaviours as ‘the symptoms of autism’.<br /><br />In addition, the syndrome is often conflated with the underlying cause – people showing the syndrome are implicitly assumed to have some causal commonality. So researchers end up looking for factors common to everybody exhibiting the syndrome, regardless of their individual signs and symptoms.<br /><br />What researchers keep coming up with is findings such as individual differences in displacement of foveal fixation, auditory filter bandwidth, auditory ERPs, urinary peptide profiles etc etc but if these differences do not discriminate between people-diagnosed-with-autism-as-a-group from controls-as-a-group, a promising line of research gets abandoned.<br /><br />Today, we need naming of parts….Sue Gerrardnoreply@blogger.comtag:blogger.com,1999:blog-5841910768079015534.post-34653632164775462272011-05-31T08:23:45.245+01:002011-05-31T08:23:45.245+01:00As Dorothy said "Autism has three key definin...As Dorothy said "Autism has three key defining features: impairments in communication, social interaction and behavioural repertoire" and as Jon's blog says, autism symptoms do not necessarily all go together. So if scientists say they are studying autism, what is it that they are studying?<br /><br />This issue was dealt with re acquired dyslexia and aphasia in the 1970s and re developmental dyslexia in the 1990s In these fields many people came to the view that the proper topic for scientific study here is the symptom, not the syndrome. So for example many people stopped saying they were studying Broca's aphasia and began instead to study agrammatic sentence production, or agrammatic sentence comprehension.<br /><br />Will there come a time when scientists interested in autism stop saying "I am studying autism" and start saying "I am studying the kind of impaired communication that is often seen in people with autism: what is the nature of this impaired communication and what causes it?"<br /><br />And can one really refer to the three features listed by Dorothy as "defining features" if none of them is always present in every child with autism?Max Coltheartnoreply@blogger.comtag:blogger.com,1999:blog-5841910768079015534.post-75784326947283992262011-05-30T21:05:30.640+01:002011-05-30T21:05:30.640+01:00Bravo, Dorothy! In addition to making "gold s...Bravo, Dorothy! In addition to making "gold standard" diagnoses unreasonably onerous, insistence on ADOS/ADI data also makes it difficult to confirm diagnoses of relatively high-functioning children as they develop. With cases we have followed from toddlerhood, we find that high functioning children who were clearly ASD at 2 often fail to meet ADOS criteria at 5, when their relatively strong verbal skills and the relatively low demands of social interaction at this age level allow them to "pass." Often, they will meet criteria again at later ages.<br />In addition, the use of ADOS/ADI criteria across cultures can be problematic. Kim et al.'s (2011) recent epidemiological study of ASD in Korea, using ADOS/ADI, reports 1 in 38 children have the syndrome! It seems possible that cultural differences in talkativeness and rules for relating to adults might be influencing this figure. In addition, we have often seen children who are extremely shy, or who have some psychotic symptoms score high on the ADOS, although clinical judgement by experienced clinicians does not see them as ASD. Just as in the case of SLI, we have some distance to go before really finding a gold standard for these disorders.isen101https://www.blogger.com/profile/05925577538389910202noreply@blogger.comtag:blogger.com,1999:blog-5841910768079015534.post-66212727297423746562011-05-30T20:41:01.359+01:002011-05-30T20:41:01.359+01:00This discussion is incredibly brave, important and...This discussion is incredibly brave, important and also overdue. Lets face it: there is no gold standard for the diagnosis of ASD. This applies to all currently available diagnostic instruments, including interviews and behavioural observations. <br /><br />I like the suggestion of a separation of diagnosis for different purposes. For clinical purposes, time taken to interview parents and observe patients should not be curtailed by considerations of efficiency. For research purposes however, efficiency is a critical consideration. The suggested procedure of using quantitative scores on relatively brief questionnaires is a most useful start. <br /><br />We should not pretend there is a gold standard for diagnosing ASD. Nevertheless, I urge researchers, clinicians, parents and affected individuals to work together to develop more sensitive tests, adapted to different ages and abilities. I for one have not given up hope that the 'wisdom' of clinical and introspective experience can be translated into objective tests. <br /><br />Thank you, Dorothy, for opening the discussion on this thorny issue. It will surely benefit many struggling researchers and perhaps will educate journal editors.Uta Frithhttps://sites.google.com/site/utafrith/noreply@blogger.comtag:blogger.com,1999:blog-5841910768079015534.post-29556929344915439572011-05-30T20:33:01.773+01:002011-05-30T20:33:01.773+01:00I am an adult with (so-called) "high function...I am an adult with (so-called) "high functioning autism" (HFA) or, if one asks a different person, I have "Asperger's Syndrome." I am 46 years of age, and autism was first applied to me by a PhD clinical psychologist around 1990. Prior to that, I had discovered a category that seemed a lot like me, but there were differences significant enough that I knew that "Schizoid" was not exactly "it." When I learned of the CORE issues of autism (whether "high" or "low" functioning), I knew that the clinical psycholigist had pegged my case.<br /><br />Of course, the bane of my existence has too often been the horribly subjective definitions of "functioning." While a level of physical functioning is rather obvious, and an IQ can be assessed, the adjectives are much, much trickier to apply to the parts and processes of a person that are invisible. In fact, even if the end result passes as "normal enough," the result can be a huge lie relative to the wretched anxiety, terror, painfulness and confusion, etc., of the process endured that produced that "normal enough" result.<br /><br />All of that to ask:<br /><br />After all of the diagnostic tools (e.g.,the ADOS-G)and the "expert" opinion, at what point does the testimony of an adult regarding their own lifelong experiences enter the diagnostic conversation? Should it ever enter? What might be the implications of excluding it?<br /><br />I would, for example, have much to say about how adjectives are applied, and why. I would argue, for example, that "normal enough results" (e.g., some eye-contact is made; some casual social interaction occurs on some days; a 'special interest' isn't a WEIRD topic or object, etc.)DO NOT suffice to ascertain one's true "level of functioning." In fact, my true "level of functioning" seems to occur in realms that are not "measurable" because it occurs much less with my body than it does with my brain and my soul.<br /><br />In fact, my true "level of functioning" is so intangible and deep that I am accused of lying about the extent of my difficulties. Also, I am usually told that I am "too smart" to possibly have such difficulties.<br /><br />If only what researchers and diagnosticians can see or measure objectively and(they presume) properly interpret is considered valid for confirming or disconfirming autism in a person (forget the gradations of "functioning"; I am referring to the CORE elements of autism as expressed here: 'Autism has three key defining features: impairments in communication, social interaction and behavioural repertoire. The latter encompasses both repetitive behaviours such as stereotyped movements, and restricted interests, e.g., an obsessive fascination with aeroplanes.'), then I submit to you that most of what is "autism" will forever be beyond your reach. Therefore, what people with autism TELL ABOUT THEMSELVES must gain genuine and substantial validity with professionals.<br /><br />Will some people lie? Probably. As for me, I could never have made this up.Anonymousnoreply@blogger.com