Why hasn't Autism (level) 1 become more used by the general public?

[Crossbreed]

DSM-V is not even recognised in my country.

Which country is that?

 

[SolarPoweredNightOwl]

From what I've read, even medical/psychiatric professionals have an iffy understanding of autism. I don't blame the general public having a poor understanding, because there is a LOT of bad literature out there on Asperger's, autism, ASD, HFA... hell, the sheer amount of names both indicates and fosters confusion on the subject. I've also noticed a general resistance to acknowledging that Asperger's is part of the autism spectrum, both from NT and ND people. I think that's in part due to preconceived notions about Asperger's and "classic autism" (notice the term?), and partly a defensive reaction. As others have mentioned, Aspie is less clinical and more relateable, and "autism" has a much heavier stigma attached. Labels can do damage.

I think level 1, 2, 3 are just sneaky ways to get around high/low functioning labels.

I think the intentions were good, to give people (mainly parents of autistics) an idea of how much help a person needs. But in practice I suspect you are right. As you and others have mentioned, function levels can change, and individuals' needs are different.

Now for the real reason that I do not like the DSM-V. Ever since 2013 it has been much harder to get a diagnosis. Why was the DSM-V set up this way? I believe that it was for political and economic reasons, not the best interest of the patient.

According to Wikipedia, you're not the only one crying foul. I haven't researched it further, but it mentions conflicts of interest, such as people working on it having ties to the pharmaceutical industry. Given that healthcare is for-profit in the US and as a general rule monied interests call the shots in our society, I'm not surprised.

 

[Crossbreed]

Not everyone who had an Aspergers diagnosis was officially commuted to ASD1.

I was surprised to find this clause (emphasis mine) included in the DSM-5,

"Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder."

 

[Baeraad]

For me its about level of stigma. 'Autism' has the greater stigma, regardless of any qualifiers of level.

I dunno, is it? I've always felt like autism is at least seen as a genuinely affliction, and one that you can have and still be a decent human being. Aspergers seems to be mentioned solely to mock it - it seems to be seen as "that thing that unpleasant losers claim to have to excuse their lack of people skills."

 

[zurb]

Of course, as Kanner was American, and Asperger was Austrian, and WWII was waging at the time, there’s always been politics (and a dash of racism) associated with either term.

 

[Nomen Dubium]

I've had the misfortune to encounter people on social media who are convinced autism is an invented illness. No longer are some of them merely misinformed; they're moving towards actual hostility. There needs to be a general conversation about autism across the media that doesn't involve journalists plucking at the same lazy cliches, but actually discussing it properly. Otherwise there will indeed remain a level of stigma.

 

[Progster]

I was surprised to find this clause (emphasis mine) included in the DSM-5,

"Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder."

But how would they define a "well-established" diagnosis?

 

[Sarah S]

But how would they define a "well-established" diagnosis?

I belive It means that you have well documented & diagnosed on well secluded grounds from youre younger years from a certified evaluation

Also the reason they have narrowed the ASD diagnosis is due to (over here (sweden defenetly ) a well known over diagnosing with Autism prior to this new version (we had the same story with ADHD as well )

And as far as i know NOONE objects to Asbergers being a part of ASD as its one of the previously separate diagnosis.

Furthermore as been stated previously the persons that have been previously diagnosed under the older diagnosis now put together in one diagnose (ASD ) are automatically given the ASD diagnose.

And its also well acknowledged that the 3 levels of ASD is a work in progress and as been stated it can be fluid between the different stages (me for ex after reading this thread checked the levels again and to my greatest surprise find out i also fit in MANY cases level 3 even Only Thing i dont have is severely lower then average verbal communication )

 

[Progster]

I belive It means that you have well documented & diagnosed on well secluded grounds from youre younger years from a certified evaluation

So if it's from your younger years, does that mean that adults diagnosed with Asperger's might lose their diagnosis?

 

[Sarah S]

So if it's from your younger years, does that mean that adults diagnosed with Asperger's might lose their diagnosis?

To be diagnosed as ASD under DSM 5 as ASD you have to be able to trace this from youre childhood (as we are born with this ) HOWEVER i strongly dought they can remove youre pre diagnose my friend so i wouldn't worry about this .

As i said this new directions are meant to the NEWLY diagnosed. NOT us thats alredy been diagnosed + its been stated numerous times in us females its more common that we are diagnosed later in life then the guys even if we had it since birth .

Heres the different levels of ASD btw

Level 1 autism
People with level 1 autism have noticeable issues with communication skills and socializing with others. They can usually have a conversation, but it might be difficult to maintain a back-and-forth banter.

Others at this level might find it hard to reach out and make new friends. According to the DSM-5, people who receive a diagnosis of level 1 autism require support.

Symptoms

• decreased interest in social interactions or activities
• difficulty initiating social interactions, such as talking to a person
• ability to engage with a person but may struggle to maintain a give-and-take of a typical conversation
• obvious signs of communication difficulty
• trouble adapting to changes in routine or behavior
• difficulty planning and organizing

Outlook
People with level 1 autism often maintain a high quality of life with little support. This support usually comes in the form of behavioral therapy or other types of therapy. Both of these approaches can help improve social and communication skills. Behavioral therapy can also help develop positive behaviors that might not come naturally.

Level 2 autism
The DSM-5 notes those with level 2 autism require substantial support. The symptoms associated with this level include a more severe lack of both verbal and nonverbal communication skills. This often makes daily activities difficult.

Symptoms

• difficulty coping with change to routine or surroundings
• significant lack of verbal and nonverbal communication skills
• behavior issues severe enough to be obvious to the casual observer
• unusual or reduced response to social cues, communication, or interactions
• trouble adapting to change
• communication using overly simple sentences
• narrow, specific interests

Outlook
People with level 2 autism generally need more support than those with level 1 autism. Even with support, they may have a hard time adjusting to changes in their environment.

A variety of therapies can help. For example, sensory integration therapy may be used at this level. It helps people learn how to deal with sensory input, such as:

• off-putting smells
• loud or annoying sounds
• distracting visual changes
• flashing lights

Those with level 2 autism tend to also benefit from occupational therapy. This type of therapy helps people develop the skills they need to complete daily tasks, such as decision-making or job-related skills.


Level 3 autism
This is the most severe level of autism. According to the DSM-5, those at this level require very substantial support. In addition to a more severe lack of communication skills, people with level 3 autism also display repetitive or restrictive behaviors.

Repetitive behaviors refer to doing the same thing over and over, whether it’s a physical action or speaking the same phrase. Restrictive behaviors are those that tend to distance someone from the world around them. This might involve an inability to adapt to change or narrow interests in very specific topics.

Symptoms

• highly visible lack of verbal and nonverbal communication skills
• very limited desire to engage socially or participate in social interactions
• trouble changing behaviors
• extreme difficulty coping with unexpected change to routine or environment
• great distress or difficulty changing focus or attention

Outlook
People with level 3 autism often need frequent, intensive therapy that focuses on a variety of issues, including communication and behavior.

They may also benefit from medication. While there’s no medication that treats autism specifically, certain drugs can help manage specific symptoms or co-occurring disorders, such as depression or trouble focusing.

Someone with this level of autism may also need a caregiver who helps them learn basic skills that will allow them to be successful in school, at home, or at work.

 

[Sarah S]

And heres one VERY informative link about making sense of said levels of ASD

Making Sense of the 3 Levels of Autism

And at the end this is stated

What's Missing From These ASD Levels of Support?
As you have probably already realized, the three autism “levels” raise as many questions as they answer. For example:

• What type of “support” did the American Psychiatric Association have in mind when it developed these functional levels? An aide?A personal care assistant? A 1:1 school aide? A job coach? A college advisor?
• In which situations do people at various levels require “support?” Some people with autism do fine at home but need help in school (where demands are specific and intense). Other people with autism do well at school but need help in social and work settings.
• Some people with autism have received sufficient therapy to appear close to typical when interviewed by a single adult but have significant issues when interacting with peers. What type of support might they need?
• Do the levels of support refer back, in any way, to services provided? (The answer, so far, appears to be “sometimes.”)
• Anxiety is a very common trait among people with higher functioning autism, and this can cause extreme challenges in typical settings. If a person is bright, verbal, and academically capable—but anxious and depressed, and thus in need of significant support in order to function in a job or school—where does he fit into the picture

If you find yourself somewhat confused about the new functional levels and where you or your child fit in, you are almost certainly not alone. Over time, the APA and autism organizations will be collecting information from practitioners, insurers, parents, and autistic self-advocates to get a sense of whether and how the new system is working. There is a very good chance that the DSM-5.1 will include changes to the functional levels as information becomes available.

 

[Progster]

To be diagnosed as ASD under DSM 5 as ASD you have to be able to trace this from youre childhood (as we are born with this )

This was also the case for Asperger's under the DSM IV.

Thank you for the information.

 

[Starfire]

@Sarah S Thank you for taking the time to find and post this information. I haven’t seen it before, it’s useful and informative. I thought I had decent idea about what the different levels entailed but reading this I realise my understanding was inaccurate.

I also agree with @china autie that the levels could be seen as a crafty way to get around labelling a persons autism high/low functioning etc which some people seem find offensive or triggering, while others may understand them as what a diagnosed person may be practically and realistically capable of doing, achieving etc for themselves with and without any assistance or accommodations.

 

[Sarah S]

@Sarah S Thank you for taking the time to find and post this information. I haven’t seen it before, it’s useful and informative. I thought I had decent idea about what the different levels entailed but reading this I realise my understanding was inaccurate.

I also agree with @china autie that the levels could be seen as a crafty way to get around labelling a persons autism high/low functioning etc which some people seem find offensive or triggering, while others may understand them as what a diagnosed person may be practically and realistically capable of doing, achieving etc for themselves with and without any assistance or accommodations.

Its no problems for me as i have most of it saved in bookmarks already from my COUNTLESS hours of trying to learn about all my diagnosis.

Furthermore the low and high functioning has been removed as criterias from DSM 5 and all that's currently valid is the 3 different levels. And also the difference between high and low ASD is those (incl me ) with what would be low functioning ASD is we have lower then average Cognitive and adaptive functions

Low-functioning autism - Wikipedia

 

[frink]

I am still fairly new to my ASD-1 ("does not need support") diagnosis. So my thoughts very much are evolving and I always try to keep an open mind about everything. Right now, the term "aspie" resonates with me, but "autistic" does not particularly resonate. I'm very hesitant to accept the word "disorder" in ASD. It is largely in conflict with my internalization of my very traits that qualified me for the diagnosis.

To answer the OP question: For me, "Autistic", "Autism", and "ASD" lack precision and are simply too broad. It's been relatively hard for me to identify with. On the other hand, "aspie" carries a bit more precise definition and association with positive qualities in addition to certain deficits. I actually find the term ASD offensive. Indeed, I sought a diagnosis for understanding why I was "different". I did not, and still do not, appreciate being labeled "disordered" because my level of social interaction and restricted interests is different than the NT-defined baseline. It's the flip side of these very qualities that give me some very positive and significant strengths. Is there any positive qualifying criteria on the DSM-5 manual for ASD? Or any acknowledgement of positive qualities, such as ability to focus more deeply on things, or avoid unnecessary and unproductive social interactions?

Again, these are my reactions to these descriptors when internalized to myself. I am not trying to say anything negative about those who identify with any particular descriptor. Indeed, I've found I have much in common with those who use any of these descriptors, and I empathize with so many things posted on this forum by people, regardless of where within the spectrum they may be.

Tony Attwood has such a positive way of looking at things "The Complete Guide to Asperger's Syndrome". After reading that and thinking in many sections of the book "he is literally describing me", with as much attention to unique strengths as weaknesses, how can I not call myself an "aspie"?

 

[Sarah S]

Is there any positive qualifying criteria on the DSM-5 manual for ASD? Or any acknowledgement of positive qualities, such as ability to focus more deeply on things, or avoid unnecessary and unproductive social interactions?

No it isent its all labeled as " tics" Required to be able to be diagnosed as ASD

The problem i see is yes we do have our " gifts" from this & other neuropsychological diagnosis BUT we also have to pay a very high price for this
" gifts "

And lasty i havent so far found ONE statement anywhere that ASD is a form of disorder. Pretty much all i have found is that many comorbid diagnosis too this and other neuropsychological diagnosis are labeled as disorders tho.

 

[Crossbreed]

@Progster , I imagine that as severity levels change, the amount of support required changes. I see ASD1s as being "cured" ASD2s & 3s (if that should happen).

 

[Sarah S]

@Progster

I imagine that as severity levels change, the amount of support required changes. I see ASD1s as being "cured" ASD2s & 3s (if that should happen).

I agree with the first statement 101 % .

Interesting points there Crossbreed (nodding head )

 

[onlything]

Which country is that?

Middle of Europe. If it's alright, I'll keep it at that.

 

[Autistamatic]

Of course, as Kanner was American, and Asperger was Austrian, and WWII was waging at the time, there’s always been politics (and a dash of racism) associated with either term.

Leo Kanner (Chaskel Leib Kanner) lived and worked in America from the age of 30, but he was also Austrian and qualified as a doctor in Berlin, Germany. He served in the German military during the First World War too. The village he was born in, Klekotòw is now called Klekotiv and is in Ukraine after due to border changes. He left Europe in 1924, long before the rise of the Nazis, due to his frustration at the economic collapse of the Weimar Republic that followed the war.

It's a curious coincidence that two doctors should be independently working in the same narrow field at the same time on opposite sides of the Atlantic yet shared the same home country (Kanner's "Autistic Disturbances of Affective Contact" was published in 1943, Asperger's "Die Autistische Psychopathen" (The Autistic Psychopaths) in 1944).

Both men are likely to have based their work on similar work published by Soviet Russian doctor Grunya Sukhareva who first described the characteristics now recognised as autism in her book "Schizoid Psychopathy in Childhood" in 1925.

Rather than politics being the defining factor, language is accepted as the main reason Asperger's and Sukhareva's work was ignored, since English translations of their work weren't available for decades. Sukhareva was arguably the pioneer of the study of autism and yet her work was not translated into English until 1996, although a German translation which would have been available to both Kanner and Asperger, was published in 1926, predating their papers by almost two decades.