Death of the Syndrome

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I don't know, I have not read as widely or for as long as you, Verdandi, so that may be a big factor in this.

I am not saying that the new diagnosis will prevent people from understanding, I am saying that without supplementing it with something like the old AS/HFA idea, you are requiring people to look through much more material before they can find things that are relevant to their situation--if they are fairly close to the stereotypical AS description. In those cases, the stereotype for AS has been useful.

I don't know what else to say. It was useful to me, I know others for whom it has been useful and I have heard form diagnostic clinicians that they found it useful, too. Therefore I don't see it actually going away anytime soon, even though the official diagnosis will now be ASD, mild. I still expect people will say "Tony Attwood's guide is useful" or "Aspergirls is useful" etc.

Are you aware that in addition to the list of symptoms to be used in diagnosis, there are also dimensional severity scales used to describe how severe each particular realm of autistic impairment is, and that they've at least stated they will discuss various presentations in the DSM-5, such as "Asperger's profile" and the like? And that the DSM is not the beginning and end of diagnosis. It is a reference manual - much of what we know about autistic spectrum disorders does not come from the DSM-IV, nor will it come from the DSM-5. It will come from the many other sources that already exist.

I would also dispute the assumption that AS automatically means "ASD mild." This is one of the ways in which AS as a diagnostic category has fostered an inaccurate perception of what "AS" means, to the point that many Aspies participate in spreading such misconceptions - that is, that an AS diagnosis is automatically "mild." For many, it is not.

Despite the fact that I am diagnosed with AS much of my understanding of myself and my difficulties was derived from reading accounts written by people diagnosed with autism or PDD-NOS, and that much of what I identify with that is "AS" seems relatively superficial to me, and that I run into people who assume that because my diagnosis is AS that I have traits and behaviors that I do not, or that I do not really have traits and behaviors that I do. I have found the AS label exceedingly frustrating and occasionally limiting because of the "mild autism" assumption that people sometimes seem to expect me to meet.

My AS is extremely mild, as I seem to blurt out stuff, and be better at making friends. I'm always the oddball that everyone wants to keep around, I enjoyed college so much! I wish I went back! I go outside and exercise for 30 minutes at least everyday. I mean to group any case of AS, or ASD is like grouping a were wolf with a vampire, each case is unique.

What is so difficult to understand about high functioning autism that it must have a Asperger label for people to understand it? How does the Asperger label help more than the HFASD one?

Are you aware that in addition to the list of symptoms to be used in diagnosis, there are also dimensional severity scales used to describe how severe each particular realm of autistic impairment is, and that they've at least stated they will discuss various presentations in the DSM-5, such as "Asperger's profile" and the like? And that the DSM is not the beginning and end of diagnosis. It is a reference manual - much of what we know about autistic spectrum disorders does not come from the DSM-IV, nor will it come from the DSM-5. It will come from the many other sources that already exist.

I would also dispute the assumption that AS automatically means "ASD mild." This is one of the ways in which AS as a diagnostic category has fostered an inaccurate perception of what "AS" means, to the point that many Aspies participate in spreading such misconceptions - that is, that an AS diagnosis is automatically "mild." For many, it is not.

The longer I am on this forum, the more convinced I am that people diagnosed with Aspergers (and their families) are too accustomed to having their own specific status. This has little to do with science or special needs funding, it is a percieved stigma associated with the word "autism" and more preciesly the historic stigma associated with labelling (i.e. low functioning) that Aspies would (without saying it) like to avoid in our socially stratified, heirarchical society.

It's a little like telling white people in the USA that white people no longer exist and that from now onward all human races will all be called Homo Africanus as scientifically (under the rules of the Linneaus biological classification system) humans originated in Africa. We all know what the repsonse to that would be.

I noticed two eggstremes in HFASD population. One is the Asperger-special group of some people with AS who believe that AS is special and distinct from other HFASD and have problems relating even to HFA. Then, there is another group of people with various HFASD diagnoses who try to relate too much to eberryone on spectrum, such that their relations of themselves to more low-functioning/less verbal people are highly inaccurate and reminds me of NTs saying that they do that too eberrytime an HFASD person mentions one of their social problems. Like parent of severely autistic child says something about problem of child, and HFASD adult says something relating that problem to their problem, but the problem is really not same or not same scale, which ackshuly makes relating worse than just not relating at all and saying that oh that is indeed a big problem for the child and what are some idears for solving it instead of oh they are just like the child when they are not and never have been. I think that trying to relate too much is bad for eberryone. In the US, the two big autism organizations represent these eggstremes. GRASP is dominated by people in group 1, and ASAN by people in group 2.

It's always great to see the black and white thinking meme appear on WP.

It's always great to see the black and white thinking meme appear on WP.

Yes, and this is one of the reasons I think it's premature to announce the death of the syndrome. The disorder will no longer be diagnosed, sure. But the syndrome will still be used to help clarify what part of the spectrum they are talking about--and of course this doesn't work for everyone, but it does work for a range of PDD-NOS, AS, HFA and similar people.

The issue of the severity scales seems a bit cloudy, too--over in the thread about the impact of the DSM V in the UK/Europe, they quote a professional view that the severity scale is "not fit for purpose." I don't really have a sense of what it means yet or how it will be used.

Maybe the DSM V will be an unqualified success and serve better than the DSM IV in all respects. Even in the event, I don't see the term Aspergers, aspie or AS disappearing from use in the autistic community--patients and therapists--for years.

I think you are displaying black & white thinking--you must be autistic!

My impression of GRASP & ASAN so far doesn't fit either of those descriptions--and 100% of the people I know in ASAN are also in GRASP, so I don't quite see how that dichotomy works. Maybe my sample is skewed, though.

Regarding the stigma attached to the word autism, I think that is likely a real issue. but people are deluding themselves if they think there is not a stigma attached to the word aspergers, too. I thought it was interesting that the issue of stigma was mentioned in Dr Perry's comments and in the logic behind the DSM V changes. If the idea is that stigma will get better because everyone is under one diagnosis, I think there has been some misunderstanding of human nature and the inevitable NT response to deviance from expected norms.

It's always great to see the black and white thinking meme appear on WP.

Then, there is another group of people with various HFASD diagnoses who try to relate too much to eberryone on spectrum, such that their relations of themselves to more low-functioning/less verbal people are highly inaccurate and reminds me of NTs saying that they do that too eberrytime an HFASD person mentions one of their social problems.

"Labeling - High and low functioning
We start this process when we seek a diagnosis to begin with. For parents with young children (1-3 years of age) who are seeking a diagnosis, I often recommend that they don't wait for the diagnosis. Forget about the label and begin supporting whatever developmental delays the child is showing. However, the diagnosis of "autism" doesn't say much about the degree of disability. There is too much variability in strengths and skills. When a diagnosis is not descriptive enough, people look for more specific ways to categorize the severity of disability. Not that high and low functioning are that descriptive.

In the medical field, diagnoses are categorized by symptoms and how much they impact the person's daily "functioning." It is the impact the disability has on the person's "functioning" that drives a lot of the services. For the most part, "high functioning" usually refers to good expressive speech, fair to good receptive understanding, and fair ability to function independently in their daily settings. "Lower functioning" is usually reserved to very limited verbal skills, often nonverbal, lower intellectual abilities, extreme difficulty understanding daily instructions, and needs a lot of assistance in doing their daily routine.

The confusion among parents and professionals is between "level of functioning" (intellectual ability), and "severity of autism." I know of children who are labeled "high functioning" who have severe autistic traits (very rigid/inflexible thinking, very resistant to change and uncertainty, and meltdown over simple snags in their day.) However, they are considered "high functioning" because they are very verbal, get good grades in school, and can do personal care independently. I have also met children who are considered "low functioning" because they are nonverbal, have difficulty with performing personal care, and difficulty with academics, but who's autism traits are less severe; more flexible in their thinking, handle daily transitions easier, can reference others better, and have fewer meltdowns. So, level of functioning doesn't also correlate with the severity of the autism. Just because a child is labeled “high functioning”, doesn’t mean he doesn’t have severe autism. Many people confuse the two, which can often exclude some from treatment, or lower the expectations for others.

We also have to be very careful when we equate “lack of verbal skills” with low intellectual abilities. The single largest characteristic used in labeling the child “high vs. low functioning” is the degree of spoken language they have. This also can be very deceiving! Although there is a strong correlation, there are many children who are nonverbal that have much higher cognitive abilities than we first recognize. They simply cannot express it in our customary ways. Once we find them a “voice”, whether through pictures, written words, manual signs, etc, we find they have much stronger cognitive skills, than we had anticipated. It isn’t until we find the right medium of expression do we begin to understand what they truly know. So, our best bet is to always assume “competence” to learn, if the right supports and teaching style can be identified. Don’t get too hung up on “low vs. high functioning” labels.

Low/High Functioning vs. Severe/Mild Autism
The last post discussed the problem with labeling someone high vs. low functioning in regards to their diagnosis. The problem comes from the fact that a person can be high functioning (verbal, good academic skills, fair to good personal care), but have moderate to severe autism (rigid inflexible thinking, strong sensory issues, poor emotional regulation, delayed processing, and impaired ability to relate with others). Also, a person can be considered low functioning (poor verbal skills, limited academic skills, and minimal personal care skills) but only have mild autism (more flexibility, calmer emotionally, less sensory sensitivities, and more socially connected).

This appears contradictory at first, but when we look closer we see that these labels actually represent two different dimensions. The first, level of functioning dimension, represents the degree of cognitive functioning, or intellectual disability. The second dimension represents the severity of autism symptoms. You could look at these two dimensions as crisscrossing on perpendicular planes, with the dimension of intellectual abilities (high, moderate, low) running vertically and the dimension of autism symptoms (severe, moderate, and mild) running horizontally. The moderate levels of each dimension meeting at the intersection of the two dimensions. Consequently, you can have people who are very high functioning verbally and intellectually, and be moderately to severely impaired in autism symptoms. This can be confusing for many people who initially see the very bright, verbal child, and not initially see the severity of the autism. Or, assume that the nonverbal child is severely autistic. It is not that easy to diagnosis.

Making matters even more complicated, is the variable of verbal skills. Although verbal skills are highly correlated with intelligence, it isn’t always the case. Do not assume that the child who is nonverbal has poor intellectual abilities. There are some children who find it difficult to talk due to auditory processing and motor planning difficulties, not lack of cognitive skills. People often assume that the nonverbal child is severely impaired and place lower expectations on them. The same is also true for the child who is very verbal, but most speech is hidden in scripting and echolalia, and appears to have higher cognitive abilities then he actually may have. So, even for the two basic dimensions (intelligence and autism symptoms), the mixing in of verbal abilities can be deceiving.

The use of labels like high and low functioning, and severely and mildly impaired, are not diagnostic terms, but used more as descriptors when people try and categorize level of impairments. Hopefully the diagnostic criterion in the new DSM will be more descriptive and accurate. Until then, and probably for some time, people will be adding their own descriptive labels to the diagnoses.