Preliminary draft DSM-5 released

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I've noticed this subtle shift occurring already, here in Australia.
I think the ASD clinicians are preparing themselves for the change.

I actually prefer the term "autism" because of the situation in my family where there are a few on the spectrum and it is unifying for us all to be under the one banner. Less divisive.

With regard to the categorisations ...high functioning and low functioning etc....Well, my presentation is all over the place. My sensory issues are extreme, but I have learned to deal with conversational reciprocity face to face, for short bursts (even though IT EXHAUSTS me.) I cannot work in groups, have never really worked full time in office situations for anything longer than a few weeks, and yet I am hyper-verbal, which makes people think I have NO impairments at times, whatsoever. I really work best alone with my own special interest pursuits. That is really the only option for me. I am back on a pension and studying a new special interest at present. I work hard at whatever I do and am not a bludger or a slouch.

I am one of the most routined aspies I know of - and every day is the same - lived at home and people visit me and only occasionally (like yesterday) do i visit someone else (and i have to know them REALLY well to do that.) It is mostly one on one. I might go out at night twice a year. I can go out to things if they are special interest related (ASD conferences) and I can go interstate if they are special interests related. (occasionally.)
I have NO prosopagnosia and I cannot follow words and faces at the same time. My eye contact is poor to average and I have learned to disguise it by looking at chins and teeth if i know people well. If I do not know them, i find it hard.
I can read emotions on their own in face reading tests, but cannot keep up with them in real life.

I still line up toys, must have my teddy on my bed each morning, must have my elephant collection set up nicely, and I must have a specific house routine covered and performed each morning before I start in on special interests. I eat the same foods all the time (luckily i am a health nut who does not smoke or drink alcohol or take any drugs and the foods I love are fresh and protein based and vegetables and fruits. I am glad I do not live on cigarettes, processed foods and coca-cola as my cravings!)


I need six hours a day minimum on my own to manage or cope with my son or his dad and their exchanges or needs for talk. And that is exhausting. If I have those six hours totally alone, I can really do well with my son and that means a great deal to me.
In the past decade I have learned how to have some real friends - equal relationships that factor in the inconsistency that is part of being human - and whilst I do not visit them much, and they visit me, I am glad they are in my life.

If I do go out as I did yesterday to a friend's house in the bush, one on one talk , everyone else around me in the afternoon pays. I have to go to bed as I am already way beyond the threshold of human contact processing that I can do in a day. I cannot live a normal life around people each day. There is just too too much information for me to process and I end up with terrible meltdowns.

So...i fall into high functioning in some areas and low functioning in others. It's so important each individual gets to really understand the details of their trait presentations rather than just believe a label given by a clinician. We are delightfully complex and rich and if we understand the specifics of our traits, we can manage them better and go on to enjoy life.

I've noticed this subtle shift occurring already, here in Australia.
I think the ASD clinicians are preparing themselves for the change.

I actually prefer the term "autism" because of the situation in my family where there are a few on the spectrum and it is unifying for us all to be under the one banner. Less divisive.

With regard to the categorisations ...high functioning and low functioning etc....Well, my presentation is all over the place. My sensory issues are extreme, but I have learned to deal with conversational reciprocity face to face, for short bursts (even though IT EXHAUSTS me.) I cannot work in groups, have never really worked full time in office situations for anything longer than a few weeks, and yet I am hyper-verbal, which makes people think I have NO impairments at times, whatsoever. I really work best alone with my own special interest pursuits. That is really the only option for me. I am back on a pension and studying a new special interest at present. I work hard at whatever I do and am not a bludger or a slouch.

I am one of the most routined aspies I know of - and every day is the same - lived at home and people visit me and only occasionally (like yesterday) do i visit someone else (and i have to know them REALLY well to do that.) It is mostly one on one. I might go out at night twice a year. I can go out to things if they are special interest related (ASD conferences) and I can go interstate if they are special interests related. (occasionally.)
I have NO prosopagnosia and I cannot follow words and faces at the same time. My eye contact is poor to average and I have learned to disguise it by looking at chins and teeth if i know people well. If I do not know them, i find it hard.
I can read emotions on their own in face reading tests, but cannot keep up with them in real life.

I still line up toys, must have my teddy on my bed each morning, must have my elephant collection set up nicely, and I must have a specific house routine covered and performed each morning before I start in on special interests. I eat the same foods all the time (luckily i am a health nut who does not smoke or drink alcohol or take any drugs and the foods I love are fresh and protein based and vegetables and fruits. I am glad I do not live on cigarettes, processed foods and coca-cola as my cravings!)


I need six hours a day minimum on my own to manage or cope with my son or his dad and their exchanges or needs for talk. And that is exhausting. If I have those six hours totally alone, I can really do well with my son and that means a great deal to me.
In the past decade I have learned how to have some real friends - equal relationships that factor in the inconsistency that is part of being human - and whilst I do not visit them much, and they visit me, I am glad they are in my life.

If I do go out as I did yesterday to a friend's house in the bush, one on one talk , everyone else around me in the afternoon pays. I have to go to bed as I am already way beyond the threshold of human contact processing that I can do in a day. I cannot live a normal life around people each day. There is just too too much information for me to process and I end up with terrible meltdowns.

So...i fall into high functioning in some areas and low functioning in others. It's so important each individual gets to really understand the details of their trait presentations rather than just believe a label given by a clinician. We are delightfully complex and rich and if we understand the specifics of our traits, we can manage them better and go on to enjoy life.

^ Great post, Millie.


M.

Thank you.
I think that is the REAL issue. Get to know our own presentation of traits, learn how to manage them on a very specific level. find out where one struggles more and where one finds things a breeze.
If we can somehow tailor our lives to that whenever possible, we can live so much more happily.
This is PRECISELY the topic I am addressing at the ASD Conference I am speaking at next week with Tony Attwood, and a few other AS people. It is vital for our personal and individual joy.

If there is a transcript of your talk or recording after the conference, I would be keen to see it. The differential between levels of functioning for me is one of the greatest challenges I had in being able to reconcile my being on the spectrum with the differences between myself, my son, and those few others on the spectrum that I have met in person... eye contact, for example - I get distressed without it now, although as a small child I stared into corners and objects and away from people. It's still challenging, but it has become so ingrained that to -not- look (at their right eye, inner corner, as a general rule) that it has become more of a problem not to meet their gaze. I've learned a degree of vocal modulation and inflection, but still have a great deficiency when it comes to interpreting that same information from others. I can plan and write long pieces of music with an expansive instrumentation, but when it comes to planning and reacting to daily events... well, it can well be traumatic. Understanding that I've utilized who I am in order to overcome certain obstacles is just as important as recognizing that there are still areas that I have to continue to struggle to master or at least maintain.


M.

Amen Millie!

It's a journey of self-discovery and the labels do not live in our world.

M - You sound a lot like a family member of mine who is a composer and undiagnosed AS. (my mother agrees he is also, but it is up to him to pursue it and he has no interest in doing so.)

If there is a transcript I will let you know. Asperger Services Australia often films their conferences, so I will let you know of that also.

I think the issue and example you raise above is so very real in so many cases with regards to adults with ASD's. We may learn to master some things, but we may remain extremely vulnerable to real world demands in other areas. It is so complex. I don;t believe clinicians fully understand this in ASD adults yet. There is a guy called Dr. Stephen Gutstein in Texas (RDI therapy) and he actually talks about fluctuations of traits - improvements and deteriorations over the course of a life - as opposed to what Temple Grandin says (which is that there is most often improvement with age.) I like a lot of what Grandin says, but I think Gutstein has hit the nail on the head with the complexity and variation of ASD traits - the shifts and changes - over the course of a lifetime. I have improved in some areas, similar to you. In other areas I struggle enormously. (I do not agree with Gutstein's approach in totality, but he has some far more progressive ideas than many others.)
I am also giving a talk to the Minds and Hearts clinical team about all of this in April. (they are very open to learning about specifics from ASD people which is very refreshing, to say the least.)

The good clinicians need to listen to us on these matters. Then the younger ones can be helped more effectively in terms of self-acceptance and living better quality lives.

If you have a dx of Asperger's would you need to be re-evaluated for this? Or can you simply take the name of autistic disorder? I mean that in a way to get special assistance from the the government. I wouldn't want to say I have autistic disorder when it's not official.

But this I'm having problems interpreting:

Does that mean not talking at all, or not talking much? You know, with small talk and such.

I think with my moderate AS I've got nothing to worry about, but still I am worrying.

Interesting. I like the new criteria. It just makes me wonder a bit how the people who currently are diagnosed are going to have their records changed over. Hm.

Thank you, Millie - that was very insightful. Just to share, my personal opinion on adaptation, age and the progression/regression of skills is this:

Those of us on the spectrum tend to learn on an experiential basis instead of intuitively when it comes to social interactions and expectations. When we are in our youth, those change so frequently and inexplicably (at least in my own life) that it seems that as soon as there is an inkling of comprehension the standards for what is age-appropriate or expected from others, those very things change before us... leaving bewildered individuals who don't understand where the floor went, much less the directions how to find it again. As one matures (late 20s, 30s, early 40s), the pace of this change slows somewhat, which allows some on the spectrum who have a special interest in studying their own problems to attain a level of normalcy. But as that period passes, there are not only differing expectations from peers, but there is a new generation with unfamiliar experiences who also now projects their expectations and behaviors onto society and by proxy onto those on the spectrum. It is the shifting, tectonic nature of individual progression within a larger social framework that leads to these peaks and valleys in functioning, acceptance and understanding - in my opinion, and opinion alone.

Some people who know me immediately saw the characteristics (albeit muted through years of practice and adaptation), while others either do not, can not, or choose not to see these rather distinctive aspects of my personality as being anything other than "being me"... which perhaps indicates that they haven't had much exposure to others on the spectrum. One student was surprised to know that I was on the spectrum as they were, but after talking we realized the number of shared experiences we had, but with different expressions of it physically and were triggered by different things.

As for your family friend, perhaps it is a niche we find ourselves in... while I have two doctors who concur with the assessment, I do not have a formal diagnosis as neither feels qualified to diagnosis in adults, and an official diagnosis (at this time, I stress) would likely do more harm than good for me personally. But composition is a wonderful part of my life, to get lost in the web of harmonies and rhythms for hours and explore... without it, I don't think I would have found my way as well as I have.


M.

I imagine that some people who have AS today will note new criteria:

today, you need 2 in 4 social symptoms and 1 in 4 repetitive symptoms; accordind to new criteria you will need 3 in 3 social symptoms and 2 in 3 repetitive symptoms

It means the "to and fro" of conversation that NT people may deal with more effectively, is an area of difficulty.
You could be mute and also be lacking reciprocity or you could be a monologuer and lacking reciprocity!
I think the issue is that the to and fro ability is lacking or impaired in some way.
In my case, I cannot process the to and fro easily because two different parts of the brain are used in verbalising AND then in comprehending. My static AS brain finds the gear shifting from one to the other to be tiring and also very painful. So I talk too little, OR I monologue at people too much.
I've learned some social scripting that enables for short bursts of to and fro-ing, but I find it very tiring. But scratch beneath the surface and it all falls apart...

SO, it can mean either. Hope that helps to explain it a bit.

Yes that does, thank you.
I just make comments and can't carry a conversation past 'how are you?' 'good.' 'Oh that's good." "umm.....". Then the other person makes an excuse and walks off.

My mother likes the criteria, and I don't mind it either, as it's more fitting to how the DSM-IV is written in its text, whereas the criteria of that edition repeats itself several times, and they actually say that in this new one.

RE: social reciprocity,

It's just lacking the appropriate to and fro of normal social conversation, which can be talking in a one-sided manner about your interest, passively accepting approaches by others (answering questions but not initiating anything), or total indifference. Small talk can often be learned by rote memory, i.e., the "how are you?" stage.

Look up the three levels of social severity by Lorna Wing, and it explains it all.

Last edited by Danielismyname on 10 Feb 2010, 7:29 pm, edited 1 time in total.

Just got a chance to sit and compare IV-R to V-Proposed. Interesting shift in approach; reduce the scope of possible symptoms and increase the percentage of corresponding symptoms to the DSM. However, the new criteria are really too incompletely refined or explained for me to develop a real sense of opinion on their impact. Also curious to note that many of the "stereotypical" traits used as part of the DSM IV-R have been eliminated under the proposal shared here.


M.

Re: social reciprocity, isn't the give and take of conversation covered in 1a? I was thinking social reciprocity was more along the lines of being able to initiate and return social interactions. In other words can you (or do you want to) call someone up and invite them to do something with you. I wished for social interaction when I was younger but was always a failure so I've just come to accept who I am and stopped trying. As far as conversation, with people I know well and feel safe with, I'm fine, with others I'm virtually paralyzed. The criteria seems both too vague and too specific at the same time. Can't they give examples?Where are the descriptions of severity levels? Who decides what constitutes clinical impairment? If you can work but only below what's expected for IQ and education level does that count as impairment? Do you have to experience meltdowns if your routine is altered or does just screwing up your whole day count? What about executive dysfunction? What about sensory issues? Is there more to read on that page that I'm missing?