Coming soon, the DSM-V. No more “PDD-NOS”, no more “Asperger”

11 Feb

Yes, a new version of the Diagnostic and Statistical Manual (DSM) is in the works. You’ve probably heard “DSM-IV” or read it a number of times. It is the manual used to describe the various “mental disorders” and the criteria for diagnosing them. (Pervasive Developmental Disorders or PDD’s are described there. These include Autistic Disorder, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Asperger Syndrome, Rett Syndrome and Childhood disintegrative disorder. If the proposed changes go into place, all that will be left is Autism Spectrum Disorder.

It isn’t that people with diagnoses of Asperger or PDD-NOS will no longer will no longer be recognized as having a diagnosis. It is just that the diagnosis name will be replaced with Autism Spectrum Disorder.

Here is are the proposed DSM-V criteria for Autism Spectrum Disorder (299.00)

Autism Spectrum Disorder

Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a. Marked deficits in nonverbal and verbal communication used for social interaction:

b. Lack of social reciprocity;

c. Failure to develop and maintain peer relationships appropriate to developmental level

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors

b. Excessive adherence to routines and ritualized patterns of behavior

c. Restricted, fixated interests

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

Compare this to the DSM-IV criteria

299.00 Autistic Disorder

1. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
1. Qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
4. lack of social or emotional reciprocity
2. Qualitative impairments in communication as manifested by at least one of the following:
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied spontaneous make-believe play or social imitative play appropriate to developmental level
3. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least of one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole body movements)
4. persistent preoccupation with parts of objects
2. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
3. The disturbance is not better accounted for by Rett’s disorder or childhood disintegrative disorder.

For a good discussion, there is an op-ed piece in the New York Times by Prof. Roy Richard Grinker. Prof. Grinker discusses about how the separate category of Asperger Syndrome really is not necessary in today’s culture. The reduced stigma attached to Autism makes it less helpful to have a separate name for “less severe” autism.

Professor Grinker was also interviewed for the United States’ National Public Radio. You can read or listen on their site.

Autistic Disorder, PDD-NOS, Asperger Syndrome and Childhood Disintigrative Disorder will all be a part of the new “Autism Spectrum Disorder”. Rett Syndrome will not be in the DSM-V at all.

One thing this will change is access to services–or possibly. For example, the State of California has “autism” as an eligibility category in the Department of Developmental Disabilities. This was put in place before the DSM-IV and the diagnosis of Asperger Syndrome was used. The state has interpreted the law to mean that only Autistic Disorder is a qualifying diagnosis, denying people with PDD-NOS and Asperger diagnoses unless they meet the criteria for the “other category”. This has put pressure to diagnose “Autistic Disorder” over PDD or AS.

Given the current budget crisis in the State of California, it isn’t as though having a diagnosis of “autism” is a key to great services anyway.

That all said, it will be interesting to hear the discussion of this change. One point that is interesting is the removal of the age 3 limit. Before, there had to be onset of symptoms before age 3. Now it is a more general statement: “Symptoms must be present in early childhood”. I find it interesting that the lack of imaginary play statement is gone as well.

The DSM is not a checklist. In the end, it will be the diagnostic instruments like the ADOS that will determine whether someone qualifies for a diagnosis. I wonder how they will modify these instruments? The “imaginary play” requirement seems to be in the ADOS as it stands now, with the birthday party section for example.

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50 Responses to “Coming soon, the DSM-V. No more “PDD-NOS”, no more “Asperger””

  1. Katie February 11, 2010 at 02:44 #

    Sensory Issues!!!!! Where the $#@% are sensory issues???

    • Austin June 8, 2012 at 06:19 #

      Sensory as in sensations interpreted by the brain through our senses, sight, smell, sound, touch, and taste. Behaviors regarding the senses generally manifest themselves as a stim (self-stimulatory behavior) and guess what- we all stim, not just people on the spectrum. In some individuals their need for sensory stimulation can lead to SIB (self-injury behaviors). In other’s, they have trouble processing large amounts of stimulation that happens in quick succession- such as going from a nice quiet car into a loud crowded mall. Here is a perfect example, I wiggle my foot when I’m sitting (rather intensely sometimes) I do am not diagnosed with an ASD but that foot-flapping is no different than the hand-flapping many people with an ASD exhibit. Now just sit back and think, do you tap your fingers? Maybe sing to the radio in the car? Play with your hair? All of those are sensory issues, they just happen to be socially acceptable. I hate to be the bearer of bad news but we all have Autism. We are all on the spectrum, either at the high functioning end or the low functioning end. I challenge you to try hand flapping, I did in order to see what it felt like, to better understand why it occurs- guess what it feels really weird and I totally get why someone who needs that physical stimulation would engage in hand flapping.

  2. Lisa February 11, 2010 at 02:45 #

    Would you agree that the criteria seem to be awfully broad and undifferentiated? IMO, the description covers a lot of folks who are not now diagnosed with an ASD.

    Meanwhile, it seems to ignore all we’ve learned about sensory issues, comorbid physical and psychological issues, etc.

    I think the new criteria will just fan the flames of controversy and frustration without having any particular positive impact on anyone except, possibly, some subgroup of clinicians.

    Don’t like ‘em.

    Lisa

  3. RAJ February 11, 2010 at 03:23 #

    It follows the trend that has taken place over several decades promoted by child psychiatry that redefines autism as a personality disorder. The concept obscures the boundaries between a profoundly dibilating neurological disorder and normal common trait variances that extend very broadly across the general population.

    Look for another spike in autism prevelance rates skyrocketing up to 5 to 10 per cent.

    Dr. Silva a pschiatrist will now have his concept of what autism is coded in DSM-V

    http://www.ncbi.nlm.nih.gov/pubmed/12455663?

  4. julia February 11, 2010 at 04:23 #

    “…promoted by child psychiatry that redefines autism as a personality disorder.”

    citations needed !!

    I highly doubt that there is ANY such trend.
    This is only part of your specific beliefs unique to you.

  5. Adelaide February 11, 2010 at 05:23 #

    Actually there are big changes in the Personality Disorders part of the DSM-V, which would be relevant.

    It is now going to be personality traits and types. Rather, trait domains.

    Here are some of the suggested revisions for Personality Disorders.

    And here are the general diagnostic criteria

    Seems like the Personality Disorders criteria are tighter.

    And the Autism Spectrum Disorders are getting simpler.

    (For example, I was happy to see only: lack of social recipriocrity. You will remember that in the DSM-IV-TR there were three more words in that criterium).

  6. Is Autism Treatable? February 11, 2010 at 05:30 #

    Thanks for sharing this trend, but I do not believe autism is really a personality disorder.

  7. Kev February 11, 2010 at 12:22 #

    Lisa, I think for something to be diagnostic it has to apply to _all_ people in that category. Not all (or even a majority?) of autistic people have comorbidities.

  8. Alan February 11, 2010 at 12:45 #

    Criteria 3 seems somewhat redundant IMHO.

  9. farmwifetwo February 11, 2010 at 13:10 #

    My family Dr claimed you could dx anyone with anything in the IV… looks like the V will be no different.

    I’m not convinced it’s going to help any of those on the HFA end of the spectrum except give gov’ts and school’s the excuse to refuse services. My eldest no longer fits that criteria. YET, still requires sensory programming for his severe claustrophobia, his token program to teach social and behaviour skills – he passes for “normal” but they still work on skills (group work being one, personal space and organization skills etc). Little things, but make a HUGE difference in the classroom and skills for life. He has a fusion (keyboard) for his desk since his fine motor skills are poor.

    All of these things he’d lose, under that criteria. BUT, he won’t.. b/c the diagnosis reads “a mild form of ASD”… deliberately. Just like his younger bro’s was changed this past summer from “severe PDD” to “autistic disorder”… CYA… CYA…

  10. Lisa February 11, 2010 at 13:20 #

    Kev – I agree completely with your point, which is why I personally would like to see distinct diagnoses for people with what seem to me to be distinct disorders. IMO, the new ASD will be much closer to PDD-NOS – not a very useful diagnosis.

    In my happy world, I’d like to see separate diagnostic categories for separate constellations of symptoms – which of course would require that we’re able to actual IDENTIFY such constellations of symptoms. This is in process, but not complete.

    I don’t believe, for example, that a child born with a difference which manifests itself in social/communications delays but has very few or very mild additional symptoms should be lumped together diagnostically with a child who suddenly regresses and develops a whole set of severe physical illnesses. IMO, the second disorder, while rare, is real.

    If diagnostic segmentation is intended to support useful research and treatment, I don’t see the point in creating one catch-all as is suggested. It’s like creating a physical disorder called “headache,” regardless of etiology, severity or potential treatment.

    Lisa

    • Kev February 11, 2010 at 14:26 #

      I see what you mean but I think the amalgamation of AS into autism is acknowledging that autistic people exist on a spectrum (and I agree with Amanda Baggs on the further point that even ‘spectrum’ isn’t good enough a term) and that we know enough about AS to be able to state that with conviction.

      Maybe, in time, we’ll know enough about further sub categories of autism to be able to either do as you suggest _or_ amalgamate more. At the moment we know so little that I think any move away from what we know for sure is dangerous.

  11. Dedj February 11, 2010 at 15:17 #

    “My family Dr claimed you could dx anyone with anything in the IV… looks like the V will be no different.”

    Yeah, your Dr. holds more authourity than all the Dr’s, PhD’s, and numerous other authourities that have input into the DSM. Aren’t you lucky such a powerful, almighty, widely skilled Dr has deigned to remain in family care, rather than the highly paid consultancy post he is obviously over-qualified for.

    Or he could be wrong and making it up. Hmmm. What would a by stander think?

    As I pointed out before, you don’t just need ‘tendencies’ to qualify but ‘excessive’,’pervasive’, ‘clinically significant’ tendancies to qualify for a diagnosis.

    If your Dr holds the honest belief that you can diagnose anyone with anything in the DSM then he’s definetly using the wrong screening tools, if he uses any at all.

    I’d get another Dr if I were you.

  12. Donna February 11, 2010 at 15:22 #

    Seems to me the DSM-V is just agreeing that autism is obsolete and means nothing. The APA doesn’t control the wallet of the US Govt or any other global govts and in order to get services as in $$$ at the age of 18, the United States citizen will need the PC label of an intellectual disabilty or what is AKA MR to collect, which is under the DDD (Dept of Dev Disabilities) and these people can distinguish who is worthy of services and who is not because of the always limited amount of funds available and taking into consideration all the people with other disabilities that pass thru the doors of DDD/Medicaid/SSA.

    PDD/ASD is only a term that opens the educational doors to IDEA and nothing more.

    C’est le vie autism! You had it coming and you got what you deserved with all the fighting from the various camps with their own agendas! There is no reason to advocate for autism anymore or be stigmatized with the label of autism which is just a bunch of arguing by various entrenched camps that at the end of the day means nothing but IDEA and the right to an education.

  13. Theo February 11, 2010 at 16:01 #

    I just posted this on another blog on the hub but here is my opinion.

    “It most certainly does matter! What they are doing is a mistake!!! For many reasons! I understand that parents are wanting services for those with Asperger’s. And this is desperately needed, as I have AS I know this! But we need services that make sense to deal with the issues that we on the other side of the spectrum face! I already have to go through therapies and tests that I don’t need, waisitng tons of state money, because issues that are apart of other kinds of autism. I don’t have these issues. No one that I know with AS does.

    But we are put through the tests and therapies anyway. Meanwhile, in the areas we actually DO need help, there is absolutely nothing!! I see no programs helping the college bound HFA/AS with transitioning from highschool into college. I see no programs to help us find, apply for, learn interview skills for, and keep jobs. As well as communicating with your boss, and your fellow employees. I see no programs that teach us how to budget, how to balance a check book, how to clean, how to cook, how to spend wisely. No programs on how to deal with and live in society and deal with people in a way that would make it easier to live independently on our own.

    I see no help with housing, on helping us learn how to be a part of the community, on helping us cope with anxiety, or helping us understnad what is expected of us by society and why. No, all these services don’t exist. And continue to not even be discussed unless someone like me comes along who forces the issue!

    This cookie cutter stlye of services has got to stop! They already treat almost all of us the same, giving us all the same therapies, same lessons, same benefits, etc. No matter how drasticly different we and our needs are from one another.It’s a waiste of time, money, resources, and continues to allow millions of people to fall through the cracks of our system, with still no help.

    This will only make it worse. For along with lumping AS under Autism, they are changing the criteria to better fit it under that area. Which means more will fall through the cracks, even though they have genuine issues that need to be addressed!

    I know, parents want to be able to get benefits for thier children. But why are there not programs out there to help and teach us how to transition and help us throughout college or employment so that we can get meaningful jobs and not NEED goverment benefits? Why is it so hard to understand the idea of paying a little now for these services to save alot later when we are able to get along without goverment benefits?

    We have got to stop this cookie cutter one size fits all approach to treating a Spectrum of disorders! Especially one as large with such drastic differences as the Autism Spectrum! We have got to start indivudualizing care based off the needs and the goals of each individual on the Spectrum. And with someone with AS will have needs and issues that are different from someone on the otherside of the Spectrum, to lump us in with those who need different services doesn’t make logical sense and in the end we will be no better off than we are now.

    I think we need to keep Asperger’s seperate. That Special Education should instead widen it’s criteria, and supports that truly need to be finally get put into place. And that care and supports be put in place based on the needs of the individual, not all on the Spectrum getting the same treatment and being thought of the same.

    That is why the system is failing so miserably now, and after this will continue to fail. Because they don’t get it! THey are doing nothing but going in circles instead of addressing the issues at hand. The “at least we are doing something” mentality is total bs. Because if your something is the wrong thing, nothing will ever change.”

    Theo (Advocacy Specialist, MO Autism Commisioner, female with Asperger’s)

    I know it looks braoder, like it will let more in. But it will be more restrictive in state’s like mine, who will instead look at the autism criteria instead of the 299.0 criteria. It will get used against us. And with the label of autism instead of AS, more of us will find it hard to find jobs here. Remember, in the Southwest it is good ol boy town, and the word autism will send employers running in the other direction. And meanwhile, none of the issues that need to be addresssed will be addressed. It will continue to be the same old thing.

    It also will take away from me and many of myfriends the only thing we had to be able to explain the difference between us, NT’s, and those with other kinds of autism. This will just make all the special educators, the teachers, staff, case managers, doctors, and therapists to treat us all the same, with the same therapies, treatments, etc even though we do not have the same issues or in some cases the issues that are in the same areas are not as severe as in other types of autism. No one wants to help with the problems we do have. Everyone wants to treat us for the problems we don’t have.

    Maybe it’s just my state.

  14. Laurentius Rex February 11, 2010 at 16:11 #

    I saw all this coming a long time ago, indeed I have never considered Aspergers disorder (to give it the DSM designation) as anything but a temporary blip in the nosology, something brought about because of the politicking of certain researchers, and even then considered as controversial.

    It was not necessary then, and is not now. I am not even bothering to blog on this, I said it all years ago, you can buy the video.

    http://www.shiningcityvisions.com

    or if you don’t want to line my pockets. http://www.larry-arnold.net/Neurodiversity/Mission/whichever.htm

    and scroll down to Kanner vs Asperger.

  15. Laurentius Rex February 11, 2010 at 16:45 #

    Changed my mind, (see it is possible) thought I would blog on it after all.

    Laurentius speaks:

    http://laurentius-rex.blogspot.com/2010/02/nothing-new-under-sun-dsmv.html

  16. David N. Andrews M. Ed., C. P. S. E. February 11, 2010 at 18:57 #

    “Yeah, your Dr. holds more authourity than all the Dr’s, PhD’s, and numerous other authourities that have input into the DSM. Aren’t you lucky such a powerful, almighty, widely skilled Dr has deigned to remain in family care, rather than the highly paid consultancy post he is obviously over-qualified for.”

    I’d say that a doctor who can say that is basically not one I’d want to be dealing with anyone that I know…

    “Or he could be wrong and making it up. Hmmm. What would a by stander think?”

    Personally, I think she’s doing her usual thing – talking bollocks.

    “As I pointed out before, you don’t just need ‘tendencies’ to qualify but ‘excessive’,’pervasive’, ‘clinically significant’ tendancies to qualify for a diagnosis.”

    Exactly!

    “If your Dr holds the honest belief that you can diagnose anyone with anything in the DSM then he’s definetly using the wrong screening tools, if he uses any at all.”

    I’d say the bollocks isn’t doing anything that would meet the criteria for good practice, that’s for sure….

    “I’d get another Dr if I were you.”

    Why would she give up her excuse to talk bollocks?

  17. Leila February 11, 2010 at 19:00 #

    This will stop some doctors from labeling kids PDD-NOS just to “spare” feelings of parents or if they’re hesitant to apply the autism label to a very young child who can have a lot of progress in a few years. Go ahead, doc, use “autism spectrum disorder” and recommend a new evaluation in a year or two.

  18. David N. Andrews M. Ed., C. P. S. E. February 11, 2010 at 19:01 #

    “Criteria 3 seems somewhat redundant IMHO.”

    Dunno about redundant, but definitely difficult to operationalise (in terms of anything you can use to assess if it’s fulfilled or not).

  19. Stephanie February 11, 2010 at 21:14 #

    Oddly, I just had an appointment today with a mental health/child development professional who reinforced the PDD-NOS diagnosis for Alex, because he was “too social” and “too affectionate” to meet the criteria for autism. That he is is also predominantly non-verbal and has very limited social communication didn’t seem a factor.

  20. Bill February 11, 2010 at 21:21 #

    Medical science used to have morons, idiots and imbeciles to describe people with defective brains, but those words became pejoratives, and mentally retarded was substituted. Then mentally retarded became a pejorative, and that got switched to developmentally disabled. Many parents with children born with defective brains glommed onto “autistic” because it had more cachét than retarded or fetal alcohol syndrome or brain damaged, perverting the word autistic and turning it into a new synonym for retarded.
    So I don’t want to be called “autistic”. I prefer the distinction Asperger’s brings me; that I am endowed with a different brain, not suffering from a defective brain.

  21. Sullivan February 11, 2010 at 21:51 #

    Bill,

    just goes to show, I don’t agree with everyone on the spectrum. Sometimes, in fact, I find their comments to be insulting to my kid.

  22. JB February 11, 2010 at 22:17 #

    I think that “Theo” made some great points…As the parent of a college student with AS, I have been frustrated for years about the almost complete lack of services for post high school/college bound students with AS/HFA. I see no changes coming in this situation, and the proposed changes to the DSM will not help with this in any way. I also share “Theo’s” concern about doing away with the Asperger’s designation in favor of just Autism Spectrum Disorder…Symantics aside, and right or wrong, names of things DO matter to people, and people DO react differently when they hear the word Autism, versus Asperger’s. Dropping Asperger’s, as well as the other commonly used names of disorders on the Autism spectrum, is a mistake, and will make no difference to how those involved will be treated and managed from a medical standpoint. As the old saying goes, “if it ain’t broke, don’t fix it”…I believe changing the designation in this case will do no good, and will very possibly, if not likely, cause some harm.

  23. Leila February 11, 2010 at 23:16 #

    Bill, lots of people who start their life as so-called low functioning autistics grow up to be exactly like you, when they acquire verbal skills. However, the ones who can’t talk aren’t necessarily retarded, and even if they were, you shouldn’t be ashamed of sharing traits with them. We are all part of humanity. I am not insulted or diminished at all for sharing my place in the human race with people who are “defective” as you bluntly put.

    If your diagnosis changes from “Asperger’s” to “Autistic”, that won’t change your endowed brain. The difference is, society will understand that autism is a continuum that includes different degrees of severity but with common symptoms and traits.

  24. Lisa February 11, 2010 at 23:26 #

    Leila, you say “society will understand that autism is a continuum that includes different degrees of severity but with common symptoms and traits.”

    From your lips to God’s ear lol! But I wouldn’t hold your breath.

    Lisa

  25. Donna February 12, 2010 at 00:46 #

    I see no programs to help us find, apply for, learn interview skills for, and keep jobs. As well as communicating with your boss, and your fellow employees. I see no programs that teach us how to budget, how to balance a check book, how to clean, how to cook, how to spend wisely. No programs on how to deal with and live in society and deal with people in a way that would make it easier to live independently on our own.

    The above are all life’s learning lessons and apply to all adults disability or not. Hopefully everybody learns from a bounced check, establishing credit and living within your means is ultimately up to you the buyer, a bad interview, being fired from the job nowadays means you have socially arrived in the world and join the many other Global Citizens who this, being fired, shall to pass, dinner made that you and your dog reject….All these are life leaning experiences and not a disability issue.

  26. Donna February 12, 2010 at 01:02 #

    Theo,

    It’s not the fall or failure that spells defeat, it’s the failure to get up after the fall and learn from it, that spells defeat.

    I took college prep courses in high school and in college I took courses that were required or in my field of study. Learning to cook, balance a checkbook, control my spending and living on what I earned in that apt that was a real dive, cooking bad dinners whether burnt or undercooked was a learning curve, Job interviews that I wasn’t hired, was okay because in hindsight, there was always a better job out there that I did get.

    Now my oldest has to learn all the things that I learned, that the generations before me had to learn and the generations after me have to learn.

    There are no courses for the above that anybody can sign up for. They are called life’s lessons. They are a given that you have to learn from in hindsight.

  27. Corina Becker February 12, 2010 at 14:54 #

    I hear the posts about the lack of supports and programs. The problem is that this is not just a state-to-state issue in the US, but rather an International issue for every country that uses the DSM. A changing of support policies and criteria in one area does not necessarily mean that other countries will do the same.

    While I am glad that Asperger’s and PDD:NOS will be folded under Autism, allowing us to be justified in accessing supports, I also realize that the diagnosing criteria is too vague and relies on a previous understanding of the spectrum. This means that a professional who is not familiar with the extremely large spectrum of autism and holds onto certain views upon autism, will deny diagnosis and supports to people. I see this as being especially true with females, who are under-diagnosed as it is, because of the different manner in which autism manifests in us.

    In other words, I think the criteria needs to be more precise so that professionals unfamiliar with autism are still able to identify it.

  28. Alan February 13, 2010 at 02:25 #

    When will Neurotypical syndrome be put in the DSM V under Autism (as it is an Autistic spectrum disorder, albeit at a complete different axis to AS and Autism). Neurotypical syndrome is a very real disability, and handicaps a great deal of people without their realising it.

  29. Monica February 13, 2010 at 12:02 #

    I agree with Sullivan about Bill’s comments. I find them insulting to my boys. Their brains may work differently than mine but that does not in any way mean they are defective.

    LOL at Alan. You are right it should be. :) My oldest is quite good at showing me just how handicapped I truly am.

  30. lilandtedsmum February 14, 2010 at 18:19 #

    Bill,

    Not only does your snobbery astound me but so does your insensitivity.

    I do apologise if being clubbed together with my daughter under the “Autism” label offends you so much. Frankly, based on the comments you made above, she’s worth 10 of you.

  31. David N. Andrews M. Ed., C. P. S. E. February 14, 2010 at 18:44 #

    LATM: I’m with you…..

  32. Maureen February 17, 2010 at 23:10 #

    Who says the autism stigma is less today?? Certainly not people with children with autism, those with autism, or those who work with people with autism. People were getting educated as to the types–my Asperger’s son is different in many ways from my autistic son. Even the latter’s psych said this is a stupid move. Yes, it is a spectrum, but there are distinct differences among the types.

  33. Lisa February 18, 2010 at 00:47 #

    After reading a lot about this issue, I realize that the DSM is NOT about trying to manage social, political, financial or service-oriented issues. In other words, it’s not about us as a community. It’s merely about defining a very ill-defined disorder. Which they’ve done.

    Lisa

    • Sullivan February 18, 2010 at 01:55 #

      Lisa,

      thanks for coming back and commenting. I meant to reply to your previous comment but a lot of blogging stuff came up.

      The DSM is “Diagnosistic” and “Statistical”. It is not about social engineering.

      I believe your earlier comment mentioned comorbidities. There is no reason to include comorbid conditions in the diagnosis. There is a movement to push for inclusion of GI complaints, but this is, in my view, more of an attempt to get recognition for GI complaints as a comorbid condition than anything else.

      Consider this–probably the two most recognized comorbid conditions to autism are epilepsy and intellectual disability. I don’t see these same groups calling for, say, epilepsy to be put into the DSM for autism.

  34. lilandtedsmum February 18, 2010 at 10:28 #

    Maureen,

    You are doing the people that work/educate people on the spectrum a great dis-service. As it stands now two people that have a diagnosis of Autism can have such differing needs that there is no one system/therapy/treatment that works for all. Each person at present is viewed as an individual and then the approach tailor made – why would that change?

    If you look at Bi-Polar disorder for example, some people experience mostly depression, others mostly manic. Some have auditory halucinations, some visual, some no hallucinations at all. However, if they meet the basic criteria they would all be given the diagnosis of bi-polar, their individual needs looked at and then they would be treated accordingly.

    To say that because two people share a diagnosis means that they are going to be treated in exactly the same way is ridiculous and insulting to the professionals who work with our children and adults.

  35. Moi April 15, 2010 at 03:59 #

    I know I’m coming by this post late….but my 17 yo son just had his junior year ER, and the psych who did it used the DSM-IV as a checklist. So you can say it’s not one, but that doesn’t mean the drs. don’t use it that way…. (sigh)

    • Sullivan April 15, 2010 at 16:03 #

      For a school assessment, they don’t even need the DSM-IV. Educational diagnoses are defined separately from the DSM-IV. For that, a simple checklist is useful.

  36. Laurentius Rex April 15, 2010 at 07:33 #

    Moi There is indeed no accounting for what Dr’s do, or will do, they are effectively laws unto themselves when it comes unto actual custom and practice, and they still give bizarre ‘paradiagnoses’ such as “displays symptoms of” or autistic “tendencies” and anything else non commital for instance.

    In the USA DSM, however comes into it’s own for billing purposes so they will try and conform to it.

    The checklists are of course not supposed to be used to determine the actual clinical diagnosis, they are supposed to determine what category the diagnosis belongs to in the stratification system of DSM. That is not entirely the same thing, though I can see how some people confuse the two.

  37. Kit May 4, 2010 at 17:51 #

    Looks like the DSM V is going to be a complete load of quackery, just like the DSM IV before it.

  38. David N. Andrews M. Ed., C. P. S. E. May 24, 2010 at 18:27 #

    @ Sullivan:
    “For a school assessment, they don’t even need the DSM-IV. Educational diagnoses are defined separately from the DSM-IV. For that, a simple checklist is useful.”

    Not necessarily. Any diagnosis made on the basis of a psycho-educational assessment must identify behavioural manifestations of the category being diagnosed; checklists help to identify these issues, sure, but they are not to be the only evidence brought out in an assessment if the diagnosis is going to be valid for any purposes, let alone educational ones.

    Diagnostic interviews, especially those in which one has to give examples of diagnostically significant behaviours, are practically a must: one cannot use the DSM criteria straight… the room for interpretation is too broad (as it is for ICD criteria). There should also be an assessment of intellectual functioning – but paying more attention to the subtest score profile than to any overall clinical indices (factor index scores on a Wechsler can be useful, but would need clarification from the subtest scores that make up the fact scores).

    Psycho-educational diagnosis is not that simple, really… identification is be a skilled practice, and finding the evidence to support the points identified in order to make a diagnosis is the key thing – that part is very much a complicated procedure.

  39. Cate August 9, 2010 at 01:28 #

    I found a broken link on this page of your website, http://leftbrainrightbrain.co.uk/2010/02/coming-soon-the-dsm-v-no-more-pdd-nos-no-more-asperger/. It points to an Autism page which no longer exists, http://hubpages com/hub/What-is-Autism-and-Its-Signs-and-Symptoms.

    We published a great Autism resource for parents on Guide to Health Care Schools: http://www.guidetohealthcareschools.com/tips-and-tools/autism-resource. It would make a great addition to your resources and replacement for the page that no longer works.

    Sincerely,
    Cate

    Cate Newton
    SR Education Group
    cate@sreducationgroup.org
    twitter.com/CateSREd

  40. Evan June 19, 2011 at 04:36 #

    I work as a counselor at a summer camp for kids with PDD-NOS and Asperger’s. Knowing which diagnosis the kid has really helps us anticipate the situation (though there are ALWAYS surprises) and do our interventions accordingly… It’d be more complicated if everyone is shoved into one diagnosis….

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