AS Community vs. Doctors on AS

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I have begun to think that I have developed a distorted view of the severity of Asperger's Syndrome from this forum, and, to a lesser extent, from people who write about their lives with Asperger's outside of WP. Now I feel a bit stupid and somewhat regret ever going for assessments. I didn't take what people said as the gospel truth, but I did give it weight because I believed that at least some of them had been diagnosed and knew other Aspergic people.

For example, there have been numerous posts about the supposedly good or even superior verbal IQ and general verbal abilities of people with Asperger's, and a tendency to do well in school, not for everyone, but for a significant proportion of people with Asperger's. I was therefore somewhat shocked when a psychology resident I was seeing told me that my academic record (B.S. in a STEM field and no history of special education or learning problems) suggested that I did not have Asperger's, and then surprised when the psychology student who conducted my assessment told me that my WAIS verbal IQ seemed too high for autism (this latter episode occurred after Asperger's became absorbed into the ASD category).

I thought to myself, "maybe these proto-shrinks just don't know what they are talking about" or "they've got Asperger's mixed up with classic autism" (neither one of them specialized in autism). Yet, as the weeks go by and I find myself more and more frustrated with the difficulty some WP members seem to have with verbal inference and clarity of expression, I'm wondering if there wasn't more truth to what those two people seemed to think about autistic verbal abilities.

When I read the Asperger's autobiographies (and sometimes blogs), the way the condition is described always seems less severe than the way it is described in professional non-fiction on the subject. I don't know if I get that impression from the focus of the writing, or maybe mainly mild people are writing this stuff (and of course can only portray what they know), or maybe they just have a rosy perspective on AS.

Is this perhaps the crux of the cure vs. no cure, parents vs. autistic adults, difference vs. disability, and over-diagnosis vs. not (or even over-diagnosis vs. under-diagnosis) debates? Some people, even or especially some diagnosed people, somehow have an unrealistic perspective on the severity, or range of severity of the less severe cases of autism (mainly Asperger's)?

I was just thinking about this myself the past few days.

I think the problem is when you have people self-diagnosed explain their experiences. People looking into it see this and connect with it. And so more and more pour in with the same feelings and so they all feel as though they've confirmed what they thought and become more and more sure they have autism. What they're not acknoweledging is that none of them are diagnosed and so these agreements between them don't mean anything.

They then start to expand what autism is and their traits start becoming symptoms. They make links with anything and everything.

And then when they go to a professional and and they say they're not autistic it's the professional's fault because online they all agreed and they fit the "symptoms" for autism. They then say that they know more than these people who have trained in autism and go to another who says the same thing. They become fixated on this idea they have autism and just cannot be told otherwise.

Inevitably when you have people repeatedly told they're not autistic by people who know best who then self-diagnose themselves on AS communities, Asperger's becomes less and less severe and instead becomes "quirky" and "nerdy"

I agree with this but I don't think self-diagnosis is especially relevant. Those that have an official diagnosis also falsely attribute traits to autism. Social confirmation goes a long way in determining what a person's idea of something is, and a person can become entrenched in an incorrect idea because of that.

The thing about the VIQ being too high for autism is wrong, as there is no too high cutoff for VIQ to rule out autism.
On this particular point, the student is wrong, and you should dismiss that statement.
Amongst research participants with tested IQs, I have seen ones with VIQ > 130, similar to yours.
In many studies, I have seen the range go above 140.
Usually, VIQ > PIQ for most ASD adults who participated in studies.
Usually, the difference between VIQ and PIQ is not large within individual participants, either autistic or normal.
These people are a mix of AS and HFA diagnosed clinically, then again by DSM/ADOS/ADIR.

The idea of what is autism being changed from the clinical/scientific definition seems common on forums and blogs.
Sometimes, important traits that indicate autism are dismissed as not needed for classifying oneself as autistic.
Other times, traits are added that are irrelevant to autism or not core traits but things like anxiety/depression/EF problems/physical symptoms that are common amongst non-autistic people as being important indicators that an individual has autism.

Point taken And because they have an official diagnosis behind them they assume everything is part of autism when in fact a lot of it is just general parts of their personality.

But when I write here on WP about traits which assessors and therapists have pointed out to me that they are autistic traits, I get hardly any replys to that on WP.
Btbnnyr replies to my threads, but hardly noone else.
But I remember in the time I registered on WP I had more conversation, like people could relate more to what I was writing.
But most of them are gone now.
But maybe it's my wording, because English is not my native language or whatever.
I also got pointed out traits the assessors called autistic traits where I am not entirely sure if they are autistic traits (eg. "no sense of self", where about two years ago someone started a poll named "Who I am" and assessed (a grad student psychology) the level of "sense of self" and many people had a normal "sense of self", even in a social sense).
So I doubt this is an autistic trait, yet it is written on the paper as autistic trait.

I would presume that it meant 'sense of self' in reference to social identity. I remember reading a thread like that and those that were tested as having a sense of self were told that their resulted was expected of NTs, rather than autistics.

Can't really comment outside of that. I'm not a researcher like btbananabunny is.

Social identity - thanks!
I too remember that for quite some people it said that their result was expected of NTs rather than autistics.
But question is if this test was any "reliable" test?

There has been little research on sense of self in autism, and sense of self is something that seems quite difficult to study in objective, quantitative ways, so lack of sense of self can't currently be considered a core trait of autism or indicator of autism or associated with autism.

Even EF, which is studied much more and in autism, is not yet solid enough in components important in autism, prevalence in autism, how it appears in clinical assessments, to be considered a core trait of autism. It is more like associated, but not core or indicator.

Social cognition deficits are solid as being critical in autism, super prevalent, and defining of autism, so it is core and indicator.

One's IQ is never too "high" for autism.

You could be an abject genius, and have severe autism.

Asperger's Syndrome/Autism runs the gamut, as far as functioning is concerned. I'm autistic because I was exclusively into myself until the age of 5 1/2. I still have times when I withdraw into myself, and don't hear much of what other people say.

Psychologists/psychiatrists tend to be reluctant to diagnose an Autism Spectrum Disorder, unless it seems evident at first glance. As I've read on WP, there are psychologists/psychiatrists who would go as far as to say the ability to talk in a social matter precludes autism. They would love it, it seems, if the DSM reverts back to the pre-1980's notion of autism.

From what I know "no sense of self" is rather related to Borderline Personality Disorder, but I do not qualify for a full diagnosis of it.



I agree.

Regarding EF:
Are there any studies about EF in regard to low-funtioning autistics? (which should be compared to executive function/dysfunction in people with intellectual disability only in same IQ range to determine if the EF (dysfunction) is due to autism or intellectual disability.
I read that executive dysfunction in autistics is up to 75%, but not further differenciated.

Estimates of executive dysfunction in autism are usually based on questionnaires instead of behavior/cognition/brain studies. This type of study is not enough for classifying EF as a core trait of autism. On lab tasks, results are mixed and inconclusive, with as many studies finding vs. not finding EF deficits in ASD group vs. NT group. Results from newer computerized EF tasks (no difference in EF between ASD vs. NT) generally conflict with results from older human-administered tasks (EF deficits in ASD), suggesting major role for social interaction or its cognitive load interfering with EF tests in autism. EF seems to be affected by intellectual level. Even in normal people, EF is hard to measure and complex tasks like wisconsin card sorting or tower of hanoi are hard to interpret. Relationship between EF task performance and daily life activities are ill-understood in any population. I think that EF in autism is definitely atypical, but there are few if any robust results about its nature and differences from EF deficits in ADHD. EF and other active cognitive tasks are really hard to do with anyone with ID.

I think people not only underestimate the severity of their autism but overestimate it. IE I am a hopeless loser or the NT's are hopelessly dumb and wrong. Not surprising because black and white thinking is a core autistic trait.

A part of the problem especially in the Wrong Plant and autism advocate/blogger group is the colloquialization of Aspergers. Aspergers is now what was the "milder" end of Aspergers leaving somebody like me diagnosed as "moderate-severe" Aspergers, never mind a lot of the people that Hans Asperger diagnosed out of the common 2015 definition. It is ALWAYS written that those who would have been Aspergers in the DSM IV now would be in the DSM 5 as ASD Severity Level 1. This seems as blatantly false as it is universally accepted.

For some reason I fail to understand in the 70 years autism has been known about the notion of moderate severity or moderate functioning is basically a non-concept. This is completely illogical. If there were 10 levels of severity I think it would help the idea of "moderate" autism gain traction.

Now switching gears entirely yes it is laughable what gets labeled Autistic traits around here. Despite this I do believe this comparison of "traits" has its merits. In the DSM 5 sensory issues was added as a diagnostic criteria for ASD. People on this and other forums were comparing these traits for years before the professional picked up on them. I am positive some traits the professionals are dismissing (and I am laughing at) will be recognized at some future date.

Abnormal sensory behaviors have been observed and reported since Kanner's original paper on autism.
It just took time to assess their prevalence in many autism samples from different studies and gain evidence of abnormal sensory processing on lab tasks and brain studies before it was added to the criteria.
Motor abnormalites have also been reported since the beginning, and motor abnormalities are being measured on lab tasks.

I think one of the reasons is, whenever you see some article about parents or curebies treating their kids' autism, they always focus on stuff like eye contact and repetitive movements. One of the "warning signs" is kids lining their toys up instead of playing the same way NT kids do. In some places, people really hate introversion too.

Not to say that those things aren't potentially useful for noticing a kids needs help with something else, but those aren't legitimate disabilities. Those are things other people need to stop being bigotted snots about.

So if you feel like those perfectly okay things are what autism is, and I can't blame people for that perception considering how much attention those traits get, it makes sense to think of autism as a non-disability difference that everyone needs to stop trying to cure.

I think the social/communication problems have to be fairly severe before it becomes truly disabling. Someone who was impaired enough to get a diagnosis as a kid might improve enough to be unimpaired (sub-clinical) as an adult.

I may not completely understand this concept. But, I suspect if my "sense of self" was tied to my "social identity", I would be one unhappy person.