Why I believe Asperger's is is still relavent

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Glflegolas
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02 Feb 2019, 10:25 am

As practically everyone here knows (or not? Maybe I shouldn't make assumptions.) the DSM got rid of Aspergers as its own diagnosis, and lumped it together with autism, renaming it "autism spectrum disorder". As far as I can see, this was a mistake. Here's why.

The new term is too wordy.In the age of texting and Twitter, words are getting shorter. "Autism Spectrum Disorder Level 1" is a bit of a mouthful. Asperger's is much shorter. Why use four words when one will suffice?

The criteria of Asperger's described (and still do) a sizable proportion of the population very well. Looking at this thread, started by ASPartOfMe, it's stated that autism with only one spectrum isn't the most accurate view, and that three separate spectra: Social interactions, communication difficulties, and repetitive behaviour actually exist.

My view of Asperger's is somebody who doesn't have any difficulty communicating at all, and has significant trouble with social interactions. Restricted/repetitive behaviour is moderate. Additionally, they are likely to have what Paula Prober calls a "rainforest mind" by that, these individuals are quite complex, highly sensitive, intense, multi-layered, and misunderstood. They're also curious, idealistic, highly intelligent, creative, perfectionistic, and they love learning.

Asperger's is widely understood, and is seen as more positive by society. No, I don't agree with the negative stereotypes perpetuated by agencies such as Autism Speaks (Those clowns need to zip it). Unfortunately, neither I, nor anyone else here, is going to build Rome in a day. If you tell most people about Asperger's, they might think of a very successful scientist, who doesn't understand social rules very well. But autism? Most people picture a boy who won't talk, is intellectually challenged, and is extremely sensitive to light/sound/etc.

Asperger's may be more closely related to specific learning difficulties than more "severe" autism. In an article published by the British Dyslexia Association (which I can't find; this is the closest thing there is, they claimed that Asperger's may be closely related to the specific learning difficulties than the more classic autism. Natalie Williams also explores this concept in her blog.

Would I call myself autistic?

No.

Would I consider myself an Aspergian?

Maybe.


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jimmy m
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02 Feb 2019, 10:46 am

I quite agree. How can you treat a problem if you create a definition that is extremely broad in scope. The traits of Aspies are very distinct. They are not broad in nature but well focused.

A low functioning Autistic is very different than an Aspie or High Functioning Autistic. These differences not only obviously different, they also show up in brain scans. So why lump them together. Why handicap an Aspie with a title like disability.


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Epicrose86
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02 Feb 2019, 11:35 am

As somebody who’s been recently diagnosed with Autism Spectrum Disorder, It doesn’t bother me at all. If I tell anyone about my diagnosis I either say I have ASD or just that I’m autistic. I don’t see the need to worry what opinions others have about autism. If somebody assumes I’m not capable because of it, their just being ableist and their not worth my time. Tho I’m cool if anyone feels more comfortable with the aspergers label This is just my opinion :)



DanielW
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02 Feb 2019, 11:44 am

ASD 1 2 or 3 is short enough for me. I personally don't think the levels actually mean much. I can be level 1 or 2 depending on situation or stress level etc.

I've never cared for High or Low functioning terminology either - too subjective.

Asperger's isn't exactly a good description either. After all, If you've met one person with Asperger's...You've met one person with Asperger's.

I guess I really don't care one way or another one label is just as inaccurate as another



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02 Feb 2019, 2:28 pm

Glflegolas wrote:
DSM got rid of Aspergers as its own diagnosis, and lumped it together with autism, renaming it "autism spectrum disorder". As far as I can see, this was a mistake.

Glflegolas wrote:
My view of Asperger's is somebody who doesn't have any difficulty communicating at all, and has significant trouble with social interactions. Restricted/repetitive behaviour is moderate. Additionally, they are likely to have what Paula Prober calls a "rainforest mind" by that, these individuals are quite complex, highly sensitive, intense, multi-layered, and misunderstood. They're also curious, idealistic, highly intelligent, creative, perfectionistic, and they love learning.

If it comes to me you are right.


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02 Feb 2019, 3:58 pm

It was ass backwards to try to solve the problem of Asperger's being too broad a category by subsuming it into a much broader category.

Some of your reasoning revolves around stigmas/ What will the NT's think? Fear often makes for poor decisions.

"Aspergers" is not coming back as an official diagnosis, that is a pipe dream. Too much time effort money and consternation went into the decision to take it out. There will not be the desire to go through all of that again to reverse course and say "Oops, we were wrong". IMHO in light of the revelations by two historians that Hans Asperger was complicit in Nazi eugenics, the diagnosis should not come back under that name anyway.

The link of mine you reposted is indicative of the direction we should go. Dominant trait(s) subcategories, I am thinking something like "Executive Dysfunction Autism". That is how its done with most diagnosis and things in life in general. For some reason in autism subcategories get people all triggered. It's either Aspergers and Autism as separate entities or "just Autism".


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Last edited by ASPartOfMe on 02 Feb 2019, 8:42 pm, edited 2 times in total.

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02 Feb 2019, 4:16 pm

I attended a seminar recently where an MD who works with neurodevelopmental disorders referred to autism as "brain malformation" in the context of brain scans

I think that's how the medical/psychiatric community see autism so lets not kid ourselves.

Having a label like Aspergers was more to benefit the general community so they can deal with people with this classification. I don't think it was designed to protect folks who function ok in society from the social stigma of disability.
To "alpha" neurotypicals any type of weird (not normal) behaviour is enough to give people labels.

Having said that I agree that for diagnostic purposes the separation of autism from Aspergers should have been maintained as the needs of people who function poorly should be medically separated from "uber" Aspies who "blend in" and (in any case) don't want to be lumped with the aforementioned folk who get the "low function" label these days.



Joe90
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02 Feb 2019, 4:42 pm

I feel Asperger's syndrome should still be a valid and existing label. I hate it when people argue that "autism is autism and there is no high-functioning or low-functioning end". I am high-functioning, end of. I feel autism is too 'serious' to describe me. I have more complex symptoms that are ADHD, autism, anxiety and neurotypicality all merged together.
My impulsiveness, short attention span, disorganisation, inability to sit still, and hyperactivity is ADHD.
My sensory issues (with loud noises and low pain tolerance), social awkwardness (but I'm not socially clueless), and past obsessions I've had, is autism.
My tendency to overthink, oversensitivity, irritability, easily startled, frequent panic attacks, and complaining is anxiety.
My ability to read body language, understand jokes, have TOM, enjoy friendships, express emotions and feelings to people, have conversations, desire to be involved with people, interest in gossip, self-awareness, can hold a healthy relationship with NT partner, have ependence and can appear 'normal' are neurotypical traits.

When I have panic attacks or meltdowns, I don't express it in an 'autistic' way. I immediately know that it's a panic attack, breathing becomes difficult, I normally cry, I don't rock backwards and forwards or flap my hands, I prefer to be touched, cuddled and spoken to during a panic attack/meltdown, and I am verbal; I can tell others what I'm feeling and why I'm having a panic attack/meltdown.


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02 Feb 2019, 5:16 pm

Here in Australia Aspies still use this label in social circles and with their NT friends, associates and work/classmates. That's not going to change.

However expecting the label to be valid (AKA the OP's use of the word relevant?) with professionals or government bodies is not going to happen.



Glflegolas
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02 Feb 2019, 7:13 pm

Joe90 wrote:
I feel Asperger's syndrome should still be a valid and existing label. I hate it when people argue that "autism is autism and there is no high-functioning or low-functioning end". I am high-functioning, end of. I feel autism is too 'serious' to describe me. I have more complex symptoms that are ADHD, autism, anxiety and neurotypicality all merged together.


There is no question. Asperger's syndrome should still be a valid and existing label. Yes, functioning labels can be harmful, but, at the same time, I feel autism is too 'serious' to describe me. Just like Joe, I have more complex symptoms that are autism, dyspraxia, neurotypicality, and possibly dyslexia, all merged together.

My tendency to occasionally say inappropriate things in social situations before realising my mistake too later is autism.
My difficulty with depth perception, inability to keep rhythm, and lousy spatial awareness is dyspraxia.
My tendency to reverse letters and misread things is likely dyslexic.
My ability to enjoy socialising, be able to relate to many other people, have conversations, being aware of my thoughts and feelings, and talk about things that aren't necessarily what I am most interested in are NT.

And, FYI, there are differences in brain structure between those formerly diagnosed with Asperger's syndrome, and those diagnosed with autism. See here, here, and here for what I am talking about.


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02 Feb 2019, 9:16 pm

The diagnosis was not created because Aspergers was thought to be a separate condition but for public relations reasons, the product being sold was "Autism" Diagnosis, the target audience was parents.

Asperger syndrome: a clinical account by Lorna Wing

Quote:
In the light of this finding, is there any justification for identifying Asperger syndrome as a separate entity? Until the aetiologies of such conditions are known, the term is helpful when explaining the problems of children and adults who have autistic features, but who talk grammatically and who are not socially aloof Such people are perplexing to parents, teachers and work supervisors, who often cannot believe in a diagnosis of autism, which they equate with muteness and total social withdrawal. The use of a diagnostic term and reference to Asperger's clinical descriptions help to convince the people concerned that there is a real problem involving subtle, but important, intellectual impairments, and needing careful management and education.


There is no question the label "autism" has many bad stigmas starting with "ret*d". These stigmas often hurt people diagnosed with autism by creating expectations too low. "Aspergers" has its stigmas also and they hurt people with that label in that people do not recognize the difficulties. "You're so smart, you don't need benefits paid from my hard earned tax money, figure it out, stop being lazy, up, toughen up and deal with it like the rest of us".

"Aspergers" was a diagnosis that was a positive turning point in my life. I will always be grateful for that.

Aspergers is a less overly broad label then Autism. That does not make it good, just a placeholder until something more accurate comes along, something will, research is just in its infancy, there is so much we do not know.


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02 Feb 2019, 10:05 pm

I agree people with Aspergers present differently than people like me with classic Kanner type autism.



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02 Feb 2019, 10:15 pm

Sometimes I feel like autism, aspergers, adhd, dyslexia, dyspraxia are all spokes of the same wheel. What is the wheel? If diagnosis was from our perspective of what it feels like to be us and not behavior analyzed by an outsider, it might make more sense. Is anyone here just one of those things? We are each unique in how we present, but what is the source?



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02 Feb 2019, 10:26 pm

Honestly I don't really know what all the fuss is about?

Here in Australia health professionals can diagnose a person using either DSMV or ICD10 (both are acceptable for seeking financial assistance)

If your doctor diagnoses you Autistic using DSM (and you feel embarrassed about it) then find another one who will use ICD10 and give you a formal diagnosis of Aspergers (It exists formally in the ICD10)
F84.5
Asperger's syndrome. F84.5 is a billable/specific ICD-10-CM code that can be used to indicate a diagnosis for reimbursement purposes.
2018/2019 ICD-10-CM Diagnosis Code F84.5: Asperger's syndrome
https://www.icd10data.com/ICD10CM/Codes ... F84-/F84.5

Glflegolas wrote:
Asperger's syndrome should still be a valid and existing label. Yes, functioning labels can be harmful, but, at the same time, I feel autism is too 'serious' to describe me.

see above (Problem solved)



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02 Feb 2019, 11:06 pm

The only low functioning individual I spent some time with is my cousin's daughter.... Lots of differences including the fact she says words sometimes but cannot have a conversation with you.


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02 Feb 2019, 11:34 pm

I have read most of Tim Attwood's book "The Complete Asperger's Syndrome", which includes updated material post DSM-V (version 5). I have also spoken with a number of experts in clinical psychology who specialise in Autism Spectrum Disorder when receiving my official and late diagnosis of ASD.

The full diagnosis I was given was actually "Autism Spectrum Disorder of the Asperger Syndrome Variety or Variation".
The distinction between low functioning autism and what used to be referred to as plain old Autism and high / very high functioning Autism I feel is extremely important.
As to be mislabelled is offensive and possibly creates various risks of problems or even the possibility of being abused in the health care system and other related areas such as in social housing (imagine having very high functioning autism but being labelled as plain old, old school autism, and for non health care professionals to be given the task to evaluate you for social housing. They will likely look at the Asperger as a fraud, and treat them with contempt! same goes when it comes to employment etc.).

I have read about the main reason why the American Psychiatrist Association decided to amalgamate both disorders under one big umbrella, and I believe the main reasons are as follows:

Originally, when there were two distinct separate categories in the DSM diagnostic criteria, people treated the sufferers of each category different, and generally regarded people with low functioning autism as extremely needy, while people with higher functioning Autism (people with average or above average IQ's) as being not as needy.

i.e. people with low IQ's = disabled.
people with high IQ's = normal but just a bit of a weirdo trouble maker.

This created a pattern of treatment that was based on IQ level rather than a persons disability.

At some point, some of the psychiatrists started to realise that some of the people with Asperger syndrome, who suffered the same or perhaps even worse problematic symptoms that the people with low functioning autism suffered, were not perceived as disabled, and thus were not given the same treatment or opportunities as the people with low functioning autism.

Someone also made the observation that some of the sufferers of Asperger Syndrome actually were hindered by having the disability more, as they were unable to reach their potential for a person with their IQ level and capabilities outside their autism based symptoms, when compared to someone who had low functioning autism, who would be easier to help reach their potential in such areas as employment. So, taking into consideration this observation, the people who made this observation realised that in some cases the person with Asperger Syndrome were actually more disabled by the condition than people who were low functioning.

I also note, the psychiatrists also realised at some point that the deliberating symptoms for both conditions were the same, and include a wide range of symptoms, with no 2 person suffering from the exact same paradigm of symptoms.
So, the psychiatrists decided to amalgamate both disorders, include the entire broad range of symptoms, and at the same time evaluate a person by the amount their symptoms affect them in every day life.

What I have noticed however in terms of treatment, in health care. Is that some of the people who work treating people with autism either treat all people as low functioning (even though in many cases the bright Asperger syndrome sufferer's IQ may be a great deal higher than the health care providers). The other observation is that the health care providers regard the Asperger syndrome people as not needing help without even looking at an individual's symptoms.

I think the reason for this, is that most people involved in health care, which include GP's, occupational therapists, and other carer's who have made their living out of supporting people with low functioning autism for most of their lives who are used to treating people in a certain way, do not understand the new diagnostic criteria nor the impact that this new criteria has on how they should treat their patients and when the new diagnostic term came about, people with Asperger Syndrome were suddenly included in their support services along side the people with low functioning autism, who such care providers previously regarded as not needing any support, so they lumped all the people together and simply treated them as low functioning but the Asperger syndrome people as low functioning but without the benefits.


This, I find extremely frustrating. As I do not like being treated like I am stupid by people who aren't as bright as I am.
Nor do I like being excluded and not given any support or worse still, being abused by the people who are paid to support people with the condition I suffer.

I think that the various ASD charities such as NAS in the UK, should have made more effort to educate the people who are employed in theses areas. Sadly, I feel that the level of education and qualifications required for people to work in health care isn't particularly high in this particular area of health care, and not many people are proactive when it comes to learning about the changes in their own area of expertise and to not keep up to date nor do are they required to do so, so often they do not even know when what they are doing at work in terms of care is correct or whether it could be regarded as abuse.

Lastly, although it is a mouthful.
When i tell people what i suffer from, i tell them i suffer from Autism Spectrum Disorder of the Asperger Syndrome Variety. As that is the most accurate definition in modern terms.

Sadly, only a few people on the planet actually understand what this term truly means in todays world of psychiatry and psychology. I guess only the people who give a dam and have the time and assertiveness will have a clue.

Few and far between unfortunately. Sadly...