Report of the DSM-V Neurodevelopmental Disorders Work Group

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Meanwhile, there was a small change in the proposed diagnostic criteria (more details and added severity levels):

http://www.dsm5.org/ProposedRevisions/P ... spx?rid=94

It was my understanding that the DMS V is not going to include aspergers at all, let alone subcategories of it...? Maybe there has been a break through that I missed but the "experts" who I have heard speak bemoan that it has not been possible to subcategorize autism either. While they can say that certain treatments seem to be effective for some autistics and not others, they cannot find correlations that predict which treatment would be effective. It continues to be hit and miss.

I think the main issue is how important DSM participants consider investing time in thinking of this. Also it is quite confusing when you have other disorders involved. The ability to give details in the description is what makes diagnosis valid and accurate. In order to provide a better understanding, rather than simple categorization, about Asperger DSM V has to provide different possible symptoms, and how certain mixtures of symptoms can describe a certain type of Aspie. This is important for those who do not enjoy the syndrom, because we, Aspies, know ourselves, but the rest doesn't.[/quote]
That’s why I say that "experts" frequently dont get autism at all. They truly need our input. However, I also realize that they do not generally consider us a reliable source.



I think this is improved...but would it mean that as a level 1, I would finally get some support???

The problem I have with removing/amending this diagnosis in the DSM is that it covers too BROAD a subject area. There's also the problem that not everyone will fit into the same diagnostic criteria.

On a personal level, my latest testing review would be vastly different from the one I had done back in middle/high school. A lot of what would be classified as "repetitive behaviors" I don't do anymore, because I have learned to be more adjustable. That's not to say though that I'm completely over the disorder (which would be such a blatant lie on my part lol).

I've looked over what the "proposed revision" is, and my biggest problem is that from the sounds of it, people like me potentially have been completely eliminated from the diagnosis.

This is the criteria listed for level 1:

Now if you look at how this is worded, it sounds like they're talking about a case where the person's impairments are much more visible. Ok, so these days the only criteria that would apply to me would be difficulty initiating social interactions, demonstrates examples of atypical or unsuccessful responses to social overtures of others. Now those 2 pieces are starting to fade out more and more these days (most in part to my parents, doctors, and friends i've made over the years).

RRB's cause significant interference with functioning in one or more contexts (to my knowledge no one has made a CLEAR explanation of what is considered functioning and what is not), so this is debatable if it applies to me or not. Resists attempts by others to interrupt RRB's or be redirected from current task (by this are they saying like it's extremely hard to be redirected/interrupted, or is it something more like its not easy to stop or do something else, but not hard?); that doesnt really apply to me either these days. I mean sure I have things I do everyday before I do other things (i.e. eat, take meds, shower, get dressed), but its not like my parents/friends dislike these things, in fact this "morning routine" of mine was encouraged by my parents from when i was a little kid.


The main problem with Autism, Autistics, and people with ASD's, is that you are constantly evolving ways of dealing/coping with your disorder. People who "grow out" of it, are in a sense, what most people strive for. However it takes years and years and years of hard work, maturing, and talking with doctors/therapists to get to a point where outwardly you look normal. The truth though is that being a disorder that affects one's mind and behavior, you don't really ever "Grow out" of being Autistic or ASD. That's the main thing that I think politicians and doctors fail to see, is that no matter how "normal" we look on the outside, its a different thing inside. So for example, despite the fact that while I might not have a lot of RRB's and resistance to changing tasks, that doesn't change the fact that on the inside, mentally I'm still autistic. It's taken me my entire life to get to the point I'm at today, and there are still a lot of aspects of Asperger's Syndrome that I still deal with every day of my life.

I think that any revisions to the DSM need to reflect this, and politicians need to realize this too.

Ok now to insert some of my own personal politics here lol. Am I proud to be Autistic? I don't really care; Do I think there's a definitive cure for Autism/ASD? This is a little harder to pinpoint. I'd say there's a possibility that at some point in time we can uncover the true cause of this disorder, how it works, etc. But to say there's a "cure" for it, is to say that it's a disease, like Chicken Pox. I think all of us here know for a fact that Autism/ASD isn't a disease. Do I think that there's a way to go from low-functioning Autism to High-Functioning? absolutely, it just takes a lot of time and effort (if you want a more detailed explanation as to why I think this, send me a PM and I'll explain).


Well, thats all I have to say for now anyways.

I feel the ASD diagnosis in the DSM-5 is heavily slanted towards the autism side, not (mild) asperger's. This is the problem, they want a tightening of criteria, but they have broadened ther diagnosis. By JUST dealing with AS or autism or whatever you can be more specific without eliminating people who should be diagnosed.

I have never liked the DSM asperger's criterion because I believe it is stepping away frorm Hans Asperger's description and makes Asperger's and HFA look nearly identical when in my experiences there are qualitartive tendancies, if not outright differences. I have found those with Asperger's can adapt (in general) far more than autistics. This makes diagnosing aspies particularly challenging. When I was 5 I would need to leave the kitchen a certain way or have to leave precisely at a specific time, now at 22 I may have anxiety or anger about sitting in a different seat from my norm but it isn't something visible and I can eventually calm down, usually pretty quickly. By these new standards I think a lot of us on the mild end will not get diagnosed.

I think you bring up a very valid point here. I too have been concerned about those with mild Asperger's failing to get a needed diagnosis. I am frustrated by change, and I am very concerned what the final draft will look like. I agree with you in how the current DSM-IV moved away from Hans Asperger's original criteria. When I was diagnosed, not only was the DSM-IV used, but also the Gillberg. Even though the DSM-V is implemented, won't some still use other tools like they have been doing to diagnose---such as the Gillberg?

I am curious - Why are you both concerned that those on the mild end will not be diagnosed?

I believe that I have AS (I have not actively sought a diagnosis, and I am too old to have been included in the cohort of schoolchildren who were actively screened - I believe I went through elementary school before the DSM IV was published). I was not put into the "gifted" program, however, because I lagged behind my peers when it came to social interaction (I think they said something like "socially and emotionally immature").

Should my son begin showing the same "signs" that I exhibited when I was younger, I will fight having him labelled with any sort of diagnosis, especially if he is on the "mild end". It may be tougher for him to get through school (as it was for me), but learning how to compensate is, I believe, important. One day, he will need to find a job in a world full of NT's who will inherently not be accommodating.

Or perhaps I am misunderstanding your definition of "mild"?

I have to agree with cave-canem

I see no value in labelling our children other than trying to please the nuerotypes. There seems to be excessive pontificating on this thread about where individuals will be diagnosed on the DSM V criteria? Who cares....

My daughter was diagnosed with ASD when she was 5 because of a delay in pragmatic langauge. Yet she was using echolaic speech with perfect pronounciation from 10 months. At school she carried the Autism tag so that kids/adults can deal with her in an "approporate manner" as she is quite shy. At home she is a chatterbox with an IQ at least 1 year ahead of her nuerotypical peers. So while we are forced to use the label at school, at home my wife and I consider her to be a normal bright little girl who is probably hyperlexic rather than autistic.

I understand DSM V may place hyperlexia as a seperate condition to PDD/ASD/Aspergers. This to me indicates how little we know about childhood developmental conditions in children.

Who cares?

I care.

And many around me care.

Although I have Asperger's, I did very well in school---and I graduated with honors in both my bachelors and masters degrees. My youngest son however was having a bit of difficulty in school. That was until he was diagnosed with Asperger's. He now has an IEP at his elementary school and is doing very well being mainstreamed in with the NTs. He receives some special help as he needs it.

So as a parent of a child who has made amazing strides both academically and in making successful friendships with his peers because of learning social skills from specialists in his school, I care.

Fair enough. Without the proper diagnosis you can't select an appropriate treatment. My wife and I have gone against the specialist advice for 40 hours of ABA therapy and rather are giving our daughter a structured learning environment with emphasis on visual learning through reading and pictures rather than verbal..auditory. She has responded really well. This was due to our own observations at home because she behaves differently at home to how she behaves at school or the pediatricians clinic, they of course base their assessment in the quiet shy little girl who they designate as An ASD child. If thisnsisnthe label she will carry then so be it. It's too complicate to explain hyperlexia to teachers, friends and acquaintances.

I am considered milld by most. Now what does that mean for me? I don't have the huge sensory issus others heree have. I never have really had meltdowns and don't really stim. I hate being touched and some sounds irritate me but that's it. I do have pproblems with rigidity of thinking, but I've adapted with age. Academically I never had many problems, but then when I went away to college my Asperger's became a lot more evident. Not because it suddenly appeared, but because I was put under social pressures I didn't have living at home. Suddenly if I dirdn't shower other people noticed, if I slept during the day because of sleep problems, my roommate told the RA, people noticed I spent all my time alone and never seemed to notice my room was dirty. Everyone thought I was depressed, which as someone who has felt depression, I wasn't at all.

But suddenly it wasn't enough that I could sail through the academic stuff, because the community demanded I be socially acceptable too. I wasn't diagnosed at that time. I knew people thought I was weird, but without the support of home I found I wasn't capable of surviving there. If I had known I had Asperger's, I could have had support to help me transition.

It isn't just about the grades, in high school I had a few friends and being smart made people respect me since we'd all known each other for a long time. But the "real world" isn't like that. Even my nerdy but non-autistic friends seemed to adjust to college, but I had to drop out and now commute to school which relievs me of a lot of social pressures.

But I have no friends, don't have a job, and the fact is...even though I wasn't diagnosed until last July at 22, I don't know how to compensate. If I had access to services, I could have been taught how to more effectively interact with others. In high school I would work on group projects alone because no one wanted to work with me, but you can't do that in a job, you have to be able to work as team.

Some people say "Oh her main problems are social, so she'll be fine" but life isn't seperated into these clear-cut modules. My social problems cause issues for me because it isn't just about making friends. Unless you are truly brilliant, people expect a certain level of social functioning to have a good professional life.

My rigidity isn't as obvioius as it was when I was 8, but I still internally freak out at someone taking my chair in class, get anxious when my mom wants to go grocery shopping at a different time than normal, and spend hours making grocery lists (my current obsession). In some ways, I think appearing normal is worse than people who are more visibly autistic because I am expected to deal with the subtleties of human interaction.

But I do agree with you a diagnosis can also be a negative thing. I see a lot of aspie kids nowadays who have been coddled and are going to learn when they graduate there are very few resources for adult aspies. They will have grown up thinking the world will bend to their needs. One positive for me being not diagnosed tilll college was my parents didn't let me get away with stuff I see aspies getting away with now. This is why I hate the parent's forum here, because as someone with multiplle disabiities, I had to learn from a young age to advocate for myself. That is something I can actually do better than most.

I worry overly involved parents make their kids struggle more, not less. I worry the new generation of aspies will completely define themselves by having AS instead of using the positives to their advantage and learning how to survive in a world they are neurobiologically different from.

Maybe you wouldn't call me mild, maybe you would. But not everyone with AS will obviously need support, some people like me fall through the cracks, probably in large part due to my overly passive nature. Now I do realize some (it is hard to quantify this of course) aspies don't need what I do. Some are able to find jobs, have stable relationships, establish social connections even though they are never normal. Others, like me, everyone expected I would easily do those things too, but I have found more difficulty than I expected. I don't think my life would be drastically different if my speech therapist, or my parents, or my teachers would have pushed for evaluation. I was suspected AS around 14 (by my parents), but I didn't know it at the time. A therapist not in the AS field suspected I had AS at 18. I don't think things would be much different if I'd known back then - I have no disilusions that support services are all that effective. But I do think simply knowing and understanding I may experience more difficulties than the average person would have helped me make more informed decisions.

Hi poppy fields,
I apologise for my preconceived views, I need to read a bit more and post my opinions a bit less.

To poppyfields:

I think I understand what your concerns are now.

Maybe I am more concerned with what you describe as "aspies getting away with stuff". My brother-in-law did not have a learning disability, but he did have a physical disability. He was given many concessions in school, and his overall behaviour (at school, at home, in public, etc) was not critiqued or controlled like his brother's was. I believe it resulted in his life becoming more difficult than it needed to be, and made it difficult for him to get a job. I think it made him feel like he shouldn't bother trying to do certain things because other people told him it would "be too hard for him".

Perhaps I am looking at it differently because I was lucky, in a way, because I believe my mother also has AS, and she was able to provide advice and insights to me when I was young to help me "deal" with social situations. She would try to help me figure out where I went wrong socially (although I think she was guessing a lot of the time, and relying on her own experiences of social awkwardness). Also, she was sure to keep the home calm and quiet (I imagine she wanted it that way too), and did not dismiss my complaints regarding sensory issues (namely, bits of fuzz in my socks that felt as big as rocks to me). But she was able to explain to me (and show me ways to deal with) the fact that other people would not be so accommodating; and so, I needed to find ways to cope outside of the home.

Did you have someone in your family who was able to provide those things for you as you were growing up?

I don't think it's always helpful to be stuck with a label. If I had been, perhaps people would have decided I wouldn't have been able to do certain things on my own (like go to university, or get a job, or live alone). And maybe instead of fighting through it all, I would have listened to them and not even bothered trying.

Upon further reflection, I think maybe I can narrow it down to this:

- I do not have unwavering faith in those who may be charged with helping someone labelled with AS
- I can not discount the potential negative impact a label may have in how others (friends, family, fellow students/workers, teachers, employers, etc) treat (or regard) someone labelled with AS

That is to say, being labelled with AS is, in and of itself, not anything positive or negative (it just "is"). The reaction of others to that label is my concern.

I think you put that quite well

I did a speech in class on my disapproval of the merging of Asperger's with Autism in the DSM-V, however nervous and inexperienced I was.

Totally agree, i'm the same age and well ill tell you in montreal here they had no idea of anything,
they sent me to speech therapy and held me back a bit .. they knew something was wrong but no one ever thought of the idea to send me to a professional. because of that , i stayed in regular school. it was tuff. but not knowing i had a "problem" kinda made me upset at my social short fallings. this pushed me every now and then to try and make friends . it was not an option in school.

i met a few people and really learnt alot about social skills. now i can go along with a convo and not do any thing wrong.
as for doing the right thing ,,, well thats another story lol
actually i have no problem what so ever expressing my self in a professorial atmosphere now. I know that the problem is strictly related to small talk. besides small talk my social abilities may be higher then some.

granted small talk seems to be the most important part.

but if i do meet some one i can often manage to get by well