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Subtyping the Autism Spectrum Disorder

crp

New Member
It's My Birthday!
I've studied tons of the professional materials and I have to tell you that the so-called high-functioning autism (HFA) is probably not the Asperger's syndrome only (according to the current classification) but there is also another subtype of HFA that takes place accurately between the Kanner's syndrome and the AS.

HFA is not a term used in the DSM, but it is commonly used to identify patients diagnosed with Autistic Disorder or PDD-Not Other Specified, with average or above average intellectual abilities (IQ higher than 70). HFA differs from low-functioning autism (IQ lower than 70) in terms of clinical presentation, prognosis and need of support and assistance in daily life.

Why is this important?
1) I'm just confused and disoriented with my actual diagnosis (AS) cuz I do not really fit in. I have much more severe autistic symptoms like severe sensory overload etc., dyslexia, very high dependency on auto-stimulation (sensory and motor-sensory), I have the huge problems with empathizing and the 'theory of mind' thing.
2) i'm so bad at communication and social interactions that I completely can't work with people, I don't have any friends and I do not communicate with my relatives.
3) I need more support than AS 1 level, and during the regress of my state I sometimes need even the 3 level. I mean, literally, im very helpless in my daily life although I am an adult age of 25+ and have all the skills and even some professional talents.

Take a look at this research: Subtyping the Autism Spectrum Disorder: Comparison of Children with High Functioning Autism and Asperger Syndrome
doi: 10.1007/s10803-018-3689-4

All in all, I find it valid and extremely accurate. It completely explains my situation.

tl dr:
- HFA are worse in unawareness of the unwritten rules of social play
- HFA tend to avoid social contact more than AS
- more excessive amount of reassurance
- less eye contact when in a conversation than AS
- HFA are more uninterested in other side of the conversation
- HFA demonstrate the exceptional long-term memory for events/facts but poorer working memory
- lower performance in school learning abilities: reading, writing, mathematics etc.
- HFA are often comorbid with ADHD but not the depression and anxiety, compared to AS

Other studies underlined qualitative differences in the grey matter distribution between AS and HFA; these findings not only support the hypothesis that the two disorders might have different neurobiological basis, but also the evidence that mixing individuals with autism and AS may sometimes obscure important characteristics of one or the other condition alone

So what do you think about this problem? Have you identified with HFA?
also, I really think that 'HFA' needs another label as the Asperger's is definitely high-functioning subtype too.

Applying DSM-5 severity levels, 95% of AS subjects were classified as Level 1; 55.7% of HFA subjects were classified as Level 1 and 44.3% as Level 2.
 
I know that
In the latest edition of the DSM, the DSM V, neither the term HFA of Asperger's Syndrome is used and instead, an umbrella term Autistic Spectrum Disorder is used.
HFA & Asperger's Syndrome were most recently included in the DSM IV, which has been replaced by the DSM V.
bt the problem is still
Other studies underlined qualitative differences in the grey matter distribution between AS and HFA; these findings not only support the hypothesis that the two disorders might have different neurobiological basis, but also the evidence that mixing individuals with autism and AS may sometimes obscure important characteristics of one or the other condition alone.
 
Hello and welcome @crp

Why is this important?
1) I'm just confused and disoriented with my actual diagnosis (AS) cuz I do not really fit in. I have much more severe autistic symptoms like severe sensory overload etc., dyslexia, very high dependency on auto-stimulation (sensory and motor-sensory), I have the huge problems with empathizing and the 'theory of mind' thing.

Maybe it would be helpful for you to stick around the forum for awhile and read the variety of experiences shared here. There’s a chance that diagnostic criteria and the minutia of autism classifications are less relevant than being able to deeply relate to and understand the challenges faced by other autistic people.

I think one’s level of functioning is not a stagnant thing. As you noted yourself, it can change from one situation to the next. But also, it can improve over time. When autistic people are able to get themselves into the right environment with the right sort of supports and understanding of themselves, it seems as though sometimes their level of functioning can substantially increase. That is one of the things that I have learned from people here through the stories they have shared.
 
Hi and welcome.

Links to studies please
hi and thx
I was afraid that links are prohibited for the newbies, so I provided the doi number in the original post. you can search it and get the article at the scientific journal or Pubmed
  • DOI: 10.1007/s10803-018-3689-4
 
Hello and welcome @crp



Maybe it would be helpful for you to stick around the forum for awhile and read the variety of experiences shared here. There’s a chance that diagnostic criteria and the minutia of autism classifications are less relevant than being able to deeply relate to and understand the challenges faced by other autistic people.

I think one’s level of functioning is not a stagnant thing. As you noted yourself, it can change from one situation to the next. But also, it can improve over time. When autistic people are able to get themselves into the right environment with the right sort of supports and understanding of themselves, it seems as though sometimes their level of functioning can substantially increase. That is one of the things that I have learned from people here through the stories they have shared.
hello and thank you! I have to explore the forums more, your reply seems reliable to me
 
Welcome!

I’ll start by acknowledging the spirit of the first half Rodafina’s post that what brings us together is our commonalities – while there are many things in that we all differ in, since we each are after all, unique, there are many shared experiences and interests through which we can relate with one another.

One such interest being that many of us have an interest in the spectrum itself. With that being stated, as you’re well aware, one of the main changes for us in DSM-5 (from DSM-IV) is that Asperger’s Syndrome and PDD-NOS were both folded into the general ASD (I recognize that some may prefer ASC, to avoid use of the word “disorder”, but here I’ll use ASD since that’s the term most commonly used in the literature) umbrella, and that three categories, based on perceived level of need, were introduced.

Part of what’s interesting is that those with any of the former diagnoses (AS, PDD-NOS, ASD) could find themselves in any of the three new groupings ASD-1, ASD-2, and ASD-3. Even more so, is that DSM-5 provided for grandfathering, so that anyone with the former AS or PDD-NOS diagnoses would be recognized as ASD, even if they do not meet the DSM-5 criteria for ASD-1.



When I look at the article you posted, which is quite interesting, one of the first things I looked for where the subjects were drawn from.

Two groups of patients were sampled for the present study: a group with a diagnosis of AS (n = 80; age range 5–18); a group with HFA (n = 70, age range 3–18, including 7 patients with a diagnosis of Autistic Disorder and 63 patients with a diagnosis of PDD-Not Otherwise Specified).

Participants were recruited from a consecutive case series of children and adolescents (aged 3–18) assessed at the Neuropsychiatric Child Unit of the University of Bari, over the course of a 2-year period (2012–2013). Inclusion criteria: a clinical diagnosis of PDD, according to DSM-IV-TR criteria (APA 2000); intelligent quotient (IQ) average or above.

There are two things that immediately jumped out at me:

The subjects were drawn from those assessed at one clinic in a two-year period.

This means that there’s a relative level of consistency in the assessments since they were done by the same team. For study/research purposes, this is very good, as it eliminates one of the variability problems. But that also means that the study’s findings are really only applicable to those who were assessed at this specific clinic (and around that time / by the same team). I’ll explain later why this is significant.

There is a very high number of persons with a PDD-NOS diagnosis, making up almost all of their sample of those with a non-AS diagnosis. I find this unusual since PDD-NOS was used where someone met most but not all of the criteria for a diagnosis of ASD, and who didn’t meet the criteria for AS either, and I’ve very seldom encountered persons with a DSM-IV diagnosis of PDD-NOS.

The authors note that in cases where someone met the criteria for ASD and AS, that they would be given a diagnosis of ASD. This is important, and likely underlies one of the study’s findings – that a larger proportion of those with a DSM-IV diagnosis of ASD are likely to be ASD-2 or ASD-3 under DSM-5.

However, as I noted before, this study is really only applicable to those diagnosed at this clinic / team. Why? Because there never has been a standard for how autism diagnoses are done. Each administers their own battery of tests as they see fit. Some get a diagnosis after one interview, with only the person themselves interviewed. Others may go through a series of tests and interviews over a period of weeks or months, including multiple interviews with family members or others who knew them as a child. Nor is there a standard for who can perform diagnoses. Where I live, only PhD psychologists and MD psychiatrists and generalist medical doctors can make them, though the vast majority of those with a diagnosis received it from a PhD psychologist. But yet I’ve met people from other places who received a diagnosis from a MA psychologist, a nurse, or even a counselor/social worker, and which were recognized in their state/province. Finally, to add to my anecdotal commentary, is that in the US, in states where AS and ASD both qualified for (funded) supports and services, parents tended to push the clinician to render a AS diagnosis on the basis that it would be less stigmatized, and in states where ASD qualified for supports but not AS, parents would tend to push the clinician to render an ASD diagnosis so that they could qualify for supports. And so I would argue that the division between AS and ASD is rather muddied, and that the lack of an uniform standard in assessment (though there are some tests like ADOS that are relatively common) means that until or unless everyone was reassessed under one uniform standard, that studies such as the one quoted, drawn from a very specific pool, will only be applicable to those in said pool.

Bringing things back to your quote, in my general experience and opinion (and again anecdotally), much more than 5% of those with an diagnosis of AS would likely meet DSM-5 criteria for ASD-2 (not unusual) or ASD-3 (very rare).

And to bring things back to Rodafina’s post – how each of us is able to cope with demands and stressors really depends on the exact environment one is in, and it’s not static – there are times where we are better able to cope, and times where we are less able to cope.
 
I've studied tons of the professional materials and I have to tell you that the so-called high-functioning autism (HFA) is probably not the Asperger's syndrome only (according to the current classification) but there is also another subtype of HFA that takes place accurately between the Kanner's syndrome and the AS.

HFA is not a term used in the DSM, but it is commonly used to identify patients diagnosed with Autistic Disorder or PDD-Not Other Specified, with average or above average intellectual abilities (IQ higher than 70). HFA differs from low-functioning autism (IQ lower than 70) in terms of clinical presentation, prognosis and need of support and assistance in daily life.

Why is this important?
1) I'm just confused and disoriented with my actual diagnosis (AS) cuz I do not really fit in. I have much more severe autistic symptoms like severe sensory overload etc., dyslexia, very high dependency on auto-stimulation (sensory and motor-sensory), I have the huge problems with empathizing and the 'theory of mind' thing.
2) i'm so bad at communication and social interactions that I completely can't work with people, I don't have any friends and I do not communicate with my relatives.
3) I need more support than AS 1 level, and during the regress of my state I sometimes need even the 3 level. I mean, literally, im very helpless in my daily life although I am an adult age of 25+ and have all the skills and even some professional talents.

Take a look at this research: Subtyping the Autism Spectrum Disorder: Comparison of Children with High Functioning Autism and Asperger Syndrome
doi: 10.1007/s10803-018-3689-4

All in all, I find it valid and extremely accurate. It completely explains my situation.

tl dr:
- HFA are worse in unawareness of the unwritten rules of social play
- HFA tend to avoid social contact more than AS
- more excessive amount of reassurance
- less eye contact when in a conversation than AS
- HFA are more uninterested in other side of the conversation
- HFA demonstrate the exceptional long-term memory for events/facts but poorer working memory
- lower performance in school learning abilities: reading, writing, mathematics etc.
- HFA are often comorbid with ADHD but not the depression and anxiety, compared to AS

Other studies underlined qualitative differences in the grey matter distribution between AS and HFA; these findings not only support the hypothesis that the two disorders might have different neurobiological basis, but also the evidence that mixing individuals with autism and AS may sometimes obscure important characteristics of one or the other condition alone

So what do you think about this problem? Have you identified with HFA?
also, I really think that 'HFA' needs another label as the Asperger's is definitely high-functioning subtype too.
A few thoughts here:
1. I think you are trying to separate the two (HFA and Asperger's) as distinct entities when most likely there's some cross over. Think of a Venn diagram.
2. Even within the subtype of ASD-1/Asperger's, none of us present the same. Spend any time here on the forums, and it becomes quite clear that we all have our "own thing going on", hence the old saying, "If you've met one person with autism, you've met one person with autism." There's likely more neurodiversity within the autism community than within the neurotypical community. There are over 100 identified DNA genes and over 1000 RNA (epigenetic) associations with autism. Imagine dumping a bucket of 1000 or so dice with (autism) and (normal) written on each dice. Each single dice represents an autistic trait or sensory condition, some severe, some mild. Every time you dump the dice, another mix of conditions reveals itself. In other words, we may all have some common things that the DSM would identify as autistics, but beyond that, we are all individuals.
3. I can empathize with the need to understand, but I think this is a bit of a "fools errand" trying to sort it all out and categorize yourself, as mentioned in #1.
 
"Occam's Razor" ?

Over the years I've pondered that the rationale behind the DSM-V may have a great deal with coming up with a nebulous spectrum allowing for medical professionals "to play fast and loose" with a diagnostic process that is anything but standardized, let alone specific. That the DSM-V may have deliberately classified autism as being on a spectrum of traits and behaviors precisely to avoid considerations of formalized subtypes. Neatly doing away with all the ramifications of what used to be referred to as "Asperger's Syndrome".

In a scientific bureaucracy where it's heresy to state or imply, "We just don't know at this point in time".

Which works for them professionally....just not necessarily for us personally.
 
A few thoughts here:
1. I think you are trying to separate the two (HFA and Asperger's) as distinct entities when most likely there's some cross over. Think of a Venn diagram.
2. Even within the subtype of ASD-1/Asperger's, none of us present the same. Spend any time here on the forums, and it becomes quite clear that we all have our "own thing going on", hence the old saying, "If you've met one person with autism, you've met one person with autism." There's likely more neurodiversity within the autism community than within the neurotypical community. There are over 100 identified DNA genes and over 1000 RNA (epigenetic) associations with autism. Imagine dumping a bucket of 1000 or so dice with (autism) and (normal) written on each dice. Each single dice represents an autistic trait or sensory condition, some severe, some mild. Every time you dump the dice, another mix of conditions reveals itself. In other words, we may all have some common things that the DSM would identify as autistics, but beyond that, we are all individuals.
3. I can empathize with the need to understand, but I think this is a bit of a "fools errand" trying to sort it all out and categorize yourself, as mentioned in #1.
thank you for the informative reply. great metaphor with the dice btw. and thanks for the reference to Venn diagram, that's really helpful
 
oh I love this method. bt in this case I got stuck on the deducting stage I guess
The simplest explanation being the most plausible one.

Where most if not all bureaucracies are ultimately self-serving first and foremost. Even if and when they appear to have the most noble societal goals in mind. Business first, science second. And above all, "CYA".
 
I've studied tons of the professional materials and I have to tell you that the so-called high-functioning autism (HFA) is probably not the Asperger's syndrome only (according to the current classification) but there is also another subtype of HFA that takes place accurately between the Kanner's syndrome and the AS.

HFA is not a term used in the DSM, but it is commonly used to identify patients diagnosed with Autistic Disorder or PDD-Not Other Specified, with average or above average intellectual abilities (IQ higher than 70). HFA differs from low-functioning autism (IQ lower than 70) in terms of clinical presentation, prognosis and need of support and assistance in daily life.

Why is this important?
1) I'm just confused and disoriented with my actual diagnosis (AS) cuz I do not really fit in. I have much more severe autistic symptoms like severe sensory overload etc., dyslexia, very high dependency on auto-stimulation (sensory and motor-sensory), I have the huge problems with empathizing and the 'theory of mind' thing.
2) i'm so bad at communication and social interactions that I completely can't work with people, I don't have any friends and I do not communicate with my relatives.
3) I need more support than AS 1 level, and during the regress of my state I sometimes need even the 3 level. I mean, literally, im very helpless in my daily life although I am an adult age of 25+ and have all the skills and even some professional talents.

Take a look at this research: Subtyping the Autism Spectrum Disorder: Comparison of Children with High Functioning Autism and Asperger Syndrome
doi: 10.1007/s10803-018-3689-4

All in all, I find it valid and extremely accurate. It completely explains my situation.

tl dr:
- HFA are worse in unawareness of the unwritten rules of social play
- HFA tend to avoid social contact more than AS
- more excessive amount of reassurance
- less eye contact when in a conversation than AS
- HFA are more uninterested in other side of the conversation
- HFA demonstrate the exceptional long-term memory for events/facts but poorer working memory
- lower performance in school learning abilities: reading, writing, mathematics etc.
- HFA are often comorbid with ADHD but not the depression and anxiety, compared to AS

Other studies underlined qualitative differences in the grey matter distribution between AS and HFA; these findings not only support the hypothesis that the two disorders might have different neurobiological basis, but also the evidence that mixing individuals with autism and AS may sometimes obscure important characteristics of one or the other condition alone

So what do you think about this problem? Have you identified with HFA?
also, I really think that 'HFA' needs another label as the Asperger's is definitely high-functioning subtype too.
As you have found out, there are officially only 3 subtypes of autism: ASD1, ASD2, ASD3. This was not always the case, and many, if not most, autistics do not fit cleanly into these categories. The DSM5 was intended to simplify things, but (in my opinion) was simplified, de-offensivized, and politically corrected to the point of near uselessness. Look up autism in DSM4 and you will see a difference. I know one psychiatrist who still uses DSM4, and only uses DSM5 for official reports.

You don't fit into a neat category. I don't fit into a neat category. There are not many of us who fit into a neat category. Unfortunately, we have to live with it. I am given to understand that in Europe there are more classifications for autism than here (overseas members please correct me). Some of this might be useful if adopted here.

Autism is not a spectrum. It is an offshoot of human behavior, and there are spectrums within spectrums. Because of this, there are no two of us the same (just as there are no two NTs the same). When I was first diagnosed, I tried to work out how many dimensions of autism there are. It is impossible to create a graph showing all of them.
 
I hate when people deny severity levels. It seems that a lot of people are "high-functioning when happy, low-functioning when having a meltdown", so because of that all severity levels have been scrapped from the spectrum and is all just called autism now. It's really annoying for those of us who don't fit the autism mould but are still classed as on the spectrum.
I admit that most people on the spectrum have both high-functioning and low-functioning levels in different areas of their lives.

My autistic friend, for example, is a classic example of a "moderate-functioning autistic". He is verbal and intelligent, and even social, and lives on his own but finds employment difficult so he claims disability support benefits. But he can use buses and trains by himself and likes to socialise (with other NDs, not NTs). But his mannerisms are typically autistic, he finds dating really difficult (he's literally had countless girlfriends, both NDs and NTs, but they've never lasted more than a week), he speaks in a monotone sort of voice and visibly stims a lot (flaps his hands), and is prone to typical autism meltdowns, special interests and sensory issues.
So I'd say he's HFA, or moderate. Just an average autistic person really. His symptoms are quite obvious and he thrives on sameness to a very rigid degree.

Me on the other hand, I'm more complex. I am PDD-NOS and my symptoms have always been atypical for autism. Despite having high anxiety I've never felt the need to rock or flap my hands (I know it's stereotypical but it is a common stim among autistics). I was verbally articulate as a child, had no speech delays, and could interact with my peers OK. I wasn't a little professor though, instead I was often overemotional, hyperactive, sulky, etc. But I was as socially articulate as my peers and had no difficulties or delays in speech.

TL;DR
I think as a rule of thumb a diagnosis of Asperger's or PPD-NOS requires the person to have had normal speech development when they were little. Autism is about social communication delays or difficulties by nature, so it is expected to have such delays/difficulties with speech when you're autistic. Being on the spectrum but having no delays/difficulties with speech can make their case of autism more complex and "odd", which is why it makes sense to give them a slightly different diagnosis label while still falling under the autism umbrella. Usually having normal speech and communication development may provide some other advantages that NTs have, which is why a lot of children with Asperger's/PPD-NOS get missed, because they can sometimes blend in and look almost "normal" to the naked eye.
 
Welcome!

I’ll start by acknowledging the spirit of the first half Rodafina’s post that what brings us together is our commonalities – while there are many things in that we all differ in, since we each are after all, unique, there are many shared experiences and interests through which we can relate with one another.

One such interest being that many of us have an interest in the spectrum itself. With that being stated, as you’re well aware, one of the main changes for us in DSM-5 (from DSM-IV) is that Asperger’s Syndrome and PDD-NOS were both folded into the general ASD (I recognize that some may prefer ASC, to avoid use of the word “disorder”, but here I’ll use ASD since that’s the term most commonly used in the literature) umbrella, and that three categories, based on perceived level of need, were introduced.

Part of what’s interesting is that those with any of the former diagnoses (AS, PDD-NOS, ASD) could find themselves in any of the three new groupings ASD-1, ASD-2, and ASD-3. Even more so, is that DSM-5 provided for grandfathering, so that anyone with the former AS or PDD-NOS diagnoses would be recognized as ASD, even if they do not meet the DSM-5 criteria for ASD-1.



When I look at the article you posted, which is quite interesting, one of the first things I looked for where the subjects were drawn from.



There are two things that immediately jumped out at me:

The subjects were drawn from those assessed at one clinic in a two-year period.

This means that there’s a relative level of consistency in the assessments since they were done by the same team. For study/research purposes, this is very good, as it eliminates one of the variability problems. But that also means that the study’s findings are really only applicable to those who were assessed at this specific clinic (and around that time / by the same team). I’ll explain later why this is significant.

There is a very high number of persons with a PDD-NOS diagnosis, making up almost all of their sample of those with a non-AS diagnosis. I find this unusual since PDD-NOS was used where someone met most but not all of the criteria for a diagnosis of ASD, and who didn’t meet the criteria for AS either, and I’ve very seldom encountered persons with a DSM-IV diagnosis of PDD-NOS.

The authors note that in cases where someone met the criteria for ASD and AS, that they would be given a diagnosis of ASD. This is important, and likely underlies one of the study’s findings – that a larger proportion of those with a DSM-IV diagnosis of ASD are likely to be ASD-2 or ASD-3 under DSM-5.

However, as I noted before, this study is really only applicable to those diagnosed at this clinic / team. Why? Because there never has been a standard for how autism diagnoses are done. Each administers their own battery of tests as they see fit. Some get a diagnosis after one interview, with only the person themselves interviewed. Others may go through a series of tests and interviews over a period of weeks or months, including multiple interviews with family members or others who knew them as a child. Nor is there a standard for who can perform diagnoses. Where I live, only PhD psychologists and MD psychiatrists and generalist medical doctors can make them, though the vast majority of those with a diagnosis received it from a PhD psychologist. But yet I’ve met people from other places who received a diagnosis from a MA psychologist, a nurse, or even a counselor/social worker, and which were recognized in their state/province. Finally, to add to my anecdotal commentary, is that in the US, in states where AS and ASD both qualified for (funded) supports and services, parents tended to push the clinician to render a AS diagnosis on the basis that it would be less stigmatized, and in states where ASD qualified for supports but not AS, parents would tend to push the clinician to render an ASD diagnosis so that they could qualify for supports. And so I would argue that the division between AS and ASD is rather muddied, and that the lack of an uniform standard in assessment (though there are some tests like ADOS that are relatively common) means that until or unless everyone was reassessed under one uniform standard, that studies such as the one quoted, drawn from a very specific pool, will only be applicable to those in said pool.

Bringing things back to your quote, in my general experience and opinion (and again anecdotally), much more than 5% of those with an diagnosis of AS would likely meet DSM-5 criteria for ASD-2 (not unusual) or ASD-3 (very rare).

And to bring things back to Rodafina’s post – how each of us is able to cope with demands and stressors really depends on the exact environment one is in, and it’s not static – there are times where we are better able to cope, and times where we are less able to cope.
thank you!
im sorry, I may have some problems with text perception and analysis, so I have to clarify smth. in brief, talking about the PDD-NOS you were trying to say that those individuals who seemed too impaired for AS-1 were categorised as PDD-NOS in past but nowadays they are more likely to be diagnosed with AS-2 or even AS-3?
 
I hate when people deny severity levels
so do i. this is why i'm stuck on this HFA level of thinking. I just do not feel myself OK with the AS-diagnosis cuz I function very bad compared to the majority of the AS individuals (that are usually lvl 1)
 

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