tag:blogger.com,1999:blog-33052404.post5786017858561179564..comments2024-02-13T21:31:57.980-04:00Comments on Facing Autism in New Brunswick: Autism and Intellectual Disability in the DSM5: My Submission to the DSM5 Neurodevelopmental Disorders Work GroupAnonymoushttp://www.blogger.com/profile/05838571980003579163noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-33052404.post-9250835047876513902011-08-04T15:28:16.147-03:002011-08-04T15:28:16.147-03:00After reading this I thought it was very enlighten...After reading this I thought it was very enlightening. I appreciate you taking the time to put this piece together. Once again I find myself spending way to much time both reading and commenting. But who cares, it was still worth it!uk pharmacy onlinehttp://www.ukpharmacylive.co.uknoreply@blogger.comtag:blogger.com,1999:blog-33052404.post-30861082301692617502011-07-21T15:23:19.879-03:002011-07-21T15:23:19.879-03:00Harold - your point is well taken. I'm going t...Harold - your point is well taken. I'm going to have to go back and take a closer look. I appreciate the dialogue. <br />DennisDennis Dixon, Ph.D.https://www.blogger.com/profile/05769980729312246087noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-63363848802687297562011-07-19T21:06:55.357-03:002011-07-19T21:06:55.357-03:00Excellent letter Harold, and you are right that we...Excellent letter Harold, and you are right that we should be concerned about how these changes can/may impact our children.<br /><br />My daughter was in the IBI program (in Ontario) after sitting on a wait list for 3 years. She was removed from service 1.5 years later, despite some outstanding progress, because she flunked her 45 minute cognitive test and was too low-verbal to meet the verbal bench marks. And of course because she "flunked out" of IBI, the school board has no reason to believe she is "teachable" either (they don't look at where she was BEFORE the program). She may have ID or maybe she's JUST severely autistic but the professionals aren't worried about the distinction... "tomato- tomatoe, potato-potatoe". <br /><br />Two years ago, I (and a couple other parents) had a meeting with Minister Broten to discuss the matter of "autism services, the importance of good service across the continnum, and the many pitfalls" and although MB seemed very receptive to the issues face- to-face, I have seen little improvement- at least for the lower-functioning children. In fact, most children like my daughter don't even qualify for IBI now and they're being pushed off onto a school board that lacks qualified teachers. <br /><br />This new wording only makes it easier for those who don't assign any value to the 'more challenging' children, to go on disregarding them. The good news is the stigma that goes along with autism is lifting (and will lift much faster when they dump the low-functioning). The bad news (for us) is the stigma that goes with ID is NOT lifting and probably never will.<br /><br />Ironically, it's the parents who need support the most that are far too stretched to advocate for themselves. I believe that those of us who see the challenges, and have the ability to fight, need to do so. Keep up the good work! I'll do what I can here.trainspotterhttps://www.blogger.com/profile/07808920446636134809noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-41431074666799347762011-07-19T18:30:40.725-03:002011-07-19T18:30:40.725-03:00Dr. Dixon
I thank you for commenting on this post...Dr. Dixon<br /><br />I thank you for commenting on this post. I respect the work you and your organization do to help autistic children. Having said that I am, respectfully, still in disagreement with your assessment of the effect of the wording of the DSM5's new Autism Spectrum Disorder.<br /><br />One fundamental point you overlook, or give too little weight to, is the requirement that EACH of criteria A,B,C,D MUST be met. That will in my humble opinion lead to the exclusion of many and perhaps all persons with intellectual disability form receiving an ASD diagnosis. <br /><br />It is not a question of putting criteria A,B,C and D in a pile and seeing what diagnoses best apply. EACH must be present for an ASD diagnosis. Thus failure to meet criterion A by itself will lead to a rejection of ASD diagnosis. When a persons is intellectually disabled they will suffer from general developmental delay by definition and they will, again by definition, have social deficits see the definition of IDD A00 in the DSM5. What would distinguish my son, to pick an example, as being autistic, are his behaviors such as his unusual persistent, perseveration. That behavior would not necessarily result in an autism diagnosis though because EACH criterion must be met for an ASD diagnosis and the social communication and interaction will be easily accounted for by general developmental delay which will not in the case of someone with such delay be easy to describe as being attributable to autism rather than the general developmental delay.<br /><br />Respectfully,<br /><br />HLDAnonymoushttps://www.blogger.com/profile/05838571980003579163noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-57320289804296115232011-07-19T11:51:36.356-03:002011-07-19T11:51:36.356-03:00This comment has been removed by the author.Dennis Dixon, Ph.D.https://www.blogger.com/profile/05769980729312246087noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-40585931166063947512011-07-19T11:50:04.729-03:002011-07-19T11:50:04.729-03:00Hi Harold,
The entire point of a diagnostic system...Hi Harold,<br />The entire point of a diagnostic system is to classify a variety of symptoms and signs into what seems to be the underlying cause. Any system that attempts this will run into the problem of having members of the class vary in how well they really fit that classification. So, one of the things that they do to help prevent misclassification is to put in this “double-checking” at step one. If you look across the entire DSM you will notice that almost every disorder has the qualifier of “not better accounted for by…” such as part B of major depressive disorder (http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=44 ). In the case of Depression, they want to be sure that the actual cause of the observed symptoms is not Shizoaffective Disorder, which can mimic the symptom presentation but presumably has a different underlying cause. In the same way, while Autism Spectrum Disorder and Intellectual Disability are highly comorbid, they are presumably separate things. Many people with ASD have both ASD and ID diagnoses, which is a point you have made a number of times. It is problematic though to refer to them as the same thing. <br /><br />Now I could be wrong about how the revisions will be applied, but the typical way to approach the clinical diagnosis is to look at all of the symptoms and then to parse them into what accounts best for them. Some symptoms will be placed into the ID pile, those that remain (not accounted for by ID) will still need to be explained, and if ASD is the right explanation, then they are placed into that pile. If the individual meets criteria for both ID and ASD then they would receive both diagnoses. <br /><br />The watering down of diagnostic criteria can occur from both directions. First, by making the criteria so loose that anyone can receive the diagnosis. This would result in huge numbers of “mild” ASD cases and relatively few “severe” case. The other way though is to water it down by allowing individuals with other disorders to also receive the ASD diagnosis. For example, none of us would have a problem with an exclusionary criteria to ensure that people with depression are not misclassified as ASD, because we automatically see them as distinct. However, because there is a good deal of overlap between ASD and ID symptoms, we may take issue with the exclusionary criteria. I suggest that if we take issue with it, it is because we’ve essentially assumed that ASD and ID are the same thing. <br /><br />When applied, this criteria may actually do what I’ve read in your posts many times is important to you: to not let those with mild or high functioning forms of ASD to take over the diagnosis and marginalize individuals like your son. This criteria will ask “is what you are observing the result of autism or the result of developmental delay?” When applied correctly, this will remove those with mild DD who were misclassified as ASD and watered down the diagnosis in that direction. It will also remove those with severe ID who do not also have ASD symptoms and thus watered down the diagnosis/specificity of “Autism”. <br /><br />By double checking that the symptoms a clinician sees in a patient are not better accounted for by some other diagnosis, the clinician is ensuring that whatever diagnoses are applied to the individual fit the individual. This criteria requires the clinician to consider what is the cause of the symptom.Dennis Dixon, Ph.D.https://www.blogger.com/profile/05769980729312246087noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-36652726012963385212011-07-19T08:58:12.812-03:002011-07-19T08:58:12.812-03:00Well, the DSM V is certainly clumsily worded, but ...Well, the DSM V is certainly clumsily worded, but I think I see what they are trying to say. If you state, for example, that your 2.5 year old child is not talking, you encounter lots of people recounting how THEIR child wasn't talking at two and a half and how they then starting talking a while later. A speech delay, for example, in a toddler is unfortunate, but it does not always indicate autism. However, if this 2.5 year old does not COMMUNICATE, does not, for example, point to things that interest them, or look to others for a reaction, then that is more suggestive of autism than simply an absence of speech.<br /> Perhaps it would be better if the DSM V stated instead that the social communication difficulties were not SOLElY accounted for by general developmental delays.Bullethttps://www.blogger.com/profile/01063571534578361443noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-22974036580445706742011-07-17T21:02:47.346-03:002011-07-17T21:02:47.346-03:00Lisa I also hope I am wrong about the wording of t...Lisa I also hope I am wrong about the wording of the DSM5 proposed autism spectrum disorder.Anonymoushttps://www.blogger.com/profile/05838571980003579163noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-54936551353626949902011-07-17T20:49:18.000-03:002011-07-17T20:49:18.000-03:00BTW - on the DSM-5 overall, I am not sure that you...BTW - on the DSM-5 overall, I am not sure that you're correct that more high functioning people will wind up on the autism spectrum than every before. <br /><br />I have the sense that an awful lot of people now living with Aspergers and PDD-NOS labels will NOT fit on the spectrum with the new criteria. <br /><br />IMO, the new criteria are so focused on perseveration and sensory issues that ASD becomes almost identical with OCD! Certainly, I have serious doubts that my own son will wind up on the spectrum after 2013, since his issues are mainly social/language/learning and NOT a need for sameness, sensory issues, etc.<br /><br />Lisa<br />www.autism.about.comLisa Jo Rudyhttps://www.blogger.com/profile/07517170138121456391noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-2066475305816726532011-07-17T20:46:27.389-03:002011-07-17T20:46:27.389-03:00Harold - just an FYI - I didn't talk directly ...Harold - just an FYI - I didn't talk directly to Dr. King. I sent a list of questions to the PR person for the APA, she forwarded the questions to Dr. King, and he prepared the answers.<br /><br />In other words, I don't think he'll have a clue who I am.<br /><br />I know that's not the point of your communication with the APA - just wanted to make you aware. And I will be VERY interested to hear the answers you receive (assuming that you do receive answers).<br /><br />I agree that the wording is pretty questionable, and I honestly don't know what's being expressed by the guidelines. I understand your perspective, but just hope that you're mistaken.<br /><br />Lisa<br />www.autism.about.comLisa Jo Rudyhttps://www.blogger.com/profile/07517170138121456391noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-63666149042558112132011-07-17T19:49:52.599-03:002011-07-17T19:49:52.599-03:00I can't see how they can prove that ICD and ID...I can't see how they can prove that ICD and ID can be mutually exclusive?? You can't prove ID when someone has ICD.<br /><br />I don't know how much Connor talks at this time but over the last year Russ' ability to tell us things has increased dramatically. Unfortunately, when the ACS arrives on Wed we'll probably be "too verbal" - insert eye-roll. So, what his actual ID level?? His interpretations, following of instructions, amazing use of google to find things he's interested in... yet, unable to answer wh questions with more than a "yes, no" will automatically fail him in an IQ test. <br /><br />Some examples of his speech are looking at the calendar, looking at you and saying "Wii games". Parental reply "yes, Russ on Mon we go to the library for Wii games." Or last week in his pool, big tears, rubbing eyes, and when asked to open them a "NO!!" and then rub his head and said "Cold!"... Ice cream headache = water up the nose.<br /><br />This is autistic speech per every SLP we've ever seen. This isn't a delayed speech. According to my eldests last Dev Ped the eldest had delayed speech since it was developing "normally" - although the "crap" that comes out of his mouth at times makes it "autistic" but he is fluent. Is this what they are looking for under their SCD?? Or is this considered a developmental issue??<br /><br />Excellent letter. Very interested in the reply you get. I'd like to know where I stand before it comes into play so I know how to manipulate things to keep our services etc.<br /><br />Just when you think you're finally ahead of the game they toss you another curve, eh?? Sigh.....farmwifetwohttps://www.blogger.com/profile/02680758336779501712noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-78231177910990554632011-07-17T15:41:42.983-03:002011-07-17T15:41:42.983-03:00I hope my letter will have an effect Claire but I ...I hope my letter will have an effect Claire but I am not overly optimistic. <br /><br />From my perspective there is no valid reason to include in the proposed wording of the DSM's New Autism Spectrum Disorder wording which will exclude the intellectually disabled, especially not given the very close numerical association between ID and Autism prior to the addition of the Asperger's Disorder diagnosis to the Pervasive Developmental Disorder category of the DSM-IV.<br /><br />When the history of autism in the DSM is looked at it seems that the APA has essentially redefined autism by diluting it, adding more persons who are lightly affected (Aspergers) and subtracting those at the severe end of the spectrum who are overwhelmingly intellectually disabled.<br /><br />I see no good health reason to do this and no good research reason. It does not add to our understanding of autism and the APA knows that. Research now such as the fMRI brain scans routinely exclude low functioning, intellectually disabled autistic subjects. <br /><br />This substitution of Aspergers for Autistic Disorder in our definition of autism appears to be a fait accompli which serves the interests of some professionals but not the interests of the severely autistic with intellectual disability. <br /><br />Apart from my blog I know of no one else who has even raised the issue prior to Lisa Jo Rudy's recent article. (other than some blogs that responded with hostility to my commentaries on the subject). The APA has not brought this significant change to public attention and probably is closed to any change of heart on this issue.<br /><br />Despite my pessimism I posted my concerns so that there is at least one voice putting those concerns fully on the public record. What they are doing is wrong and I will not remain silent while they do it.Anonymoushttps://www.blogger.com/profile/05838571980003579163noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-73843938805271302582011-07-17T10:43:41.582-03:002011-07-17T10:43:41.582-03:00Excellent,Harold. Thank heavens you are a man of ...Excellent,Harold. Thank heavens you are a man of action. We can only hope your letter will have an effect...and prompt others to write as well.Clairehttps://www.blogger.com/profile/13070297384173508509noreply@blogger.com