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ASPartOfMe
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05 May 2018, 2:42 am

Is it Time to Give Up on a Single Diagnostic Label for Autism? By Simon Baron Cohen as published in the Scientific American

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Five years ago, the American Psychiatric Association (APA) established autism spectrum disorder (ASD) as an umbrella term when it published the fifth edition of the Diagnostic and Statistical Manual (DSM-5), the primary guide to taxonomy in psychiatry. In creating this single diagnostic category, the APA also removed the subgroup called Asperger syndrome that had been in place since 1994.

At the 2018 annual meeting of the International Society for Autism Research (INSAR), there will be plenty of discussion about diagnostic terminology: Despite the many advantages of a single diagnostic category, scientists will be discussing whether, to achieve greater scientific or clinical progress, we need subtypes.

The APA created a single diagnostic label of ASD to recognize the important concept of the spectrum, since the way autism is manifested is highly variable. All autistic individuals share core features, including social and communication difficulties, unusually narrow interests, a strong need for repetition and, often, sensory issues. Yet these core features vary enormously in how they are manifested, and in how disabling they are. This variability provides one meaning of the term spectrum, and the single diagnostic label ASD makes space for this considerable variability.

The term spectrum also refers to the heterogeneity in autism. There are huge disparities in many areas, such as language development or IQ, and in the presence or absence of co-occurring medical conditions and disabilities. This heterogeneity is also part of what is meant by a spectrum. And some autistic people also have very evident talents. This is another sense of the term spectrum, and the single diagnostic label makes room for this source of diversity, too.

There have been other benefits of the ASD label: It allows the clinician to describe the person without shoehorning them into a rigid subgroup. Its flexibility also allows for individuals who previously transitioned between different subgroups. And it reduced the risk that service providers might exclude a person because they didn’t meet the eligibility criteria based on a rigid subtype. So, the consensus among clinicians is that the addition of the word “spectrum” was helpful and long overdue. Most clinicians therefore find it useful to have the flexibility of the very broad single diagnostic label.

Among proponents of a single diagnostic label, there is some debate about whether we should call it ASD (autism spectrum disorder) or ASC (autism spectrum conditions). This is because some people find the word “disorder” potentially stigmatizing, and argue that the word “condition” is equally effective in signaling a medical diagnosis. But leaving this point aside, many scientists are debating what got lost when subgroups were dropped.

One main reason given by the APA for deleting Asperger Syndrome (AS) was that diagnosis was unreliable. With hindsight, we can see that differentiating AS from classic autism was not the problem. The problem was differentiating AS from high-functioning autism (HFA), a term used by some to refer to autistic people with a history of language delay but with an IQ in the average or above-average range.

Most everybody now agrees that the terms high- versus low-functioning were stigmatizing and therefore should be avoided, but the clear contrast between AS and classic autism might have had value and perhaps should have been retained and likely could have been distinguished with high reliability. And for many, the term AS had even become part of their identity; it felt like more than just a diagnosis.

A widely held view is that medicine makes more progress by identifying subgroups, and AS versus classic autism were two very useful subgroups, because they are quite different in terms of likely levels of independence and educational and occupational attainment. Many parents, such as Alison Singer in her keynote speech in the 2017 INSAR annual meeting, also argued that by lumping AS and classic autism together, the breadth of autistic individuals is not adequately represented—that the single diagnostic category benefits neither subgroup.

For those who may think we should revert to two major subgroups, it is no longer clear that AS would be the right name for one of these, given recently published research about Hans Asperger colluding with the Nazi eugenics program during World War II. Those in the autism community who identify as having AS, and others, are actively discussing this difficult question.

But the main argument against a single diagnostic label is that the inclusion of subtypes will likely lead to greater scientific progress in understanding the precise causes of the heterogeneity, and greater translational progress in understanding what kinds of interventions and support are needed, and for whom.

One obvious way forward would be to do what other medical diagnoses (such as Diabetes) have done, and introduce a typology of subgroups, as in type 1 and type 2. So, it’s not about either having a single diagnostic label or subgroups. One can have both. Under this approach, we could keep the single umbrella category called the autism spectrum and within this have type 1, type 2, etc.

This could maintain the DSM-5’s flexibility, so that a person could transition freely between subtypes as they change across their development. Type 1 could be mapped on to what was formerly known as AS, and type 2 on to what was formerly known as classic autism. Other subtypes will undoubtedly follow, such as the syndromic forms of autism that are due to rare genetic mutations, to become type 3 and so on.

Some may worry that this simply reintroduces the high- versus low-functioning distinction. Others will say it avoids the stigmatizing language while recognizing the value of marking the significant differences within the spectrum. Some may argue that this places too much reliance on IQ tests that frequently underestimate the intelligence of autistic people, who might be mistakenly subtyped as type 2 when they are really type 1.

But by allowing flexible transitioning, there may be ways to get around this concern. Clinicians will need to have a very flexible notion of intelligence, and not stick rigidly to any specific test, such as a verbal IQ test.

Interestingly, the DSM-5 does already have the option to recognize subtypes, referred to as “specifiers,” and invites clinicians to use these to capture co-occurring conditions. But there may be value in explicitly recognizing subgroups within the autism spectrum, while keeping the helpful concept of specifiers. An individual could have type 1 autism with ADHD, or type 2 autism with language impairment, for example.

There will be others who argue that we should only subtype on the basis of biology, not psychology, since in other medical conditions such as diabetes, subgrouping into type 1 and type 2, etc., is based on discovering different causal/mechanistic factors, which have different prognostic or therapeutic implications.

I can’t wait to be at the INSAR 2018 annual meeting this year to listen to the arguments about whether we should subtype the autism spectrum, and if so what is the most useful way to do so. And to learn about the latest cutting edge scientific research that can be harnessed to improve the lives of autistic people and their families.


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05 May 2018, 4:25 am

Thank you APOM, that is extremely interesting.



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05 May 2018, 7:32 am

Very interesting. I've been wanting subtypes for ages. I suspect though that the ones I'd like to see would lead to lots of us falling into different subtypes equally and not completely fit any.

Of course the subtypes discussed in the article wouldn't be hard to get or divide into, it would really just be back to LFA and MFA in one group and AS, PDD-NOS and HFA in the other, not so unlike how it was.

I'm looking forward to updates on this.


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The_Walrus
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05 May 2018, 4:15 pm

Not at all interested in bringing back the old AS-autism divide (even with different names). I am not convinced that this is a meaningful distinction. It seems to me that this is principally a divide between people with particularly co-morbid conditions, rather than their autism actually manifesting differently. Perhaps the issue is that people like Alison Singer don't feel comfortable talking about learning disabilities and would rather talk about autism, which I think is a huge disservice to people with learning disabilites (particularly those who are not autistic).

I'd be more interested in seeing whether we can reliably differentiate between shades of autism. Perhaps some people reliably find sensory processing more difficult and have more numerical interests, while others are particularly keen on routine and have more imaginative interests. I'd be particularly interested if we could find biological underpinnings for these. However, I am somewhat concerned that this would simply introduce extra misconceptions - "you can't love routine, you're a green autistic!". Better to just work with a simple model and educate people about the inherent complexities, imo.



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05 May 2018, 4:21 pm

^^^In other words, Autism as a "spectrum."

Many different shades. Many different variations.



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05 May 2018, 4:40 pm

ASPartOfMe wrote:
https://blogs.scientificamerican.com/observations/is-it-time-to-give-up-on-a-single-diagnostic-label-for-autism wrote:
One obvious way forward would be to do what other medical diagnoses (such as Diabetes) have done, and introduce a typology of subgroups, as in type 1 and type 2. So, it’s not about either having a single diagnostic label or subgroups. One can have both. Under this approach, we could keep the single umbrella category called the autism spectrum and within this have type 1, type 2, etc.

Don't we already basically have that with level 1, level 2, and level 3?

So we're just going to change the word "level" to "type"?


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05 May 2018, 5:06 pm

Every time I read about autism nomenclature, I am reminded how these changes are not merely theoretical, but impose real and political influences on the lives of people unlucky enough to be affected by such titles. Do your kids get educational assistance or not; will your insurance cover; and finally, will your psychiatrist ever have heard of what you claim to be?


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05 May 2018, 7:30 pm

The_Walrus wrote:
Not at all interested in bringing back the old AS-autism divide (even with different names). I am not convinced that this is a meaningful distinction. It seems to me that this is principally a divide between people with particularly co-morbid conditions, rather than their autism actually manifesting differently. Perhaps the issue is that people like Alison Singer don't feel comfortable talking about learning disabilities and would rather talk about autism, which I think is a huge disservice to people with learning disabilites (particularly those who are not autistic).

I'd be more interested in seeing whether we can reliably differentiate between shades of autism. Perhaps some people reliably find sensory processing more difficult and have more numerical interests, while others are particularly keen on routine and have more imaginative interests. I'd be particularly interested if we could find biological underpinnings for these. However, I am somewhat concerned that this would simply introduce extra misconceptions - "you can't love routine, you're a green autistic!". Better to just work with a simple model and educate people about the inherent complexities, imo.



The author's proposal is at most continuing the AS Autism divide. Aspergers was a completely separate diagnosis, these are ideas for subtypes of the autism diagnosis.

I would prefer dominant "trait" or "symptom" based subtypes. The author does briefly flirt with the idea with his "with ADHD" language.

With common comorbids a decision has to be made keep them as separate diagnosis or as began by the DSM 5 with sensory issues make them diagnosable traits and subtypes. From reading posts here I am more and more agreeing with the latter course of action. IMHO a lot of things are labeled comorbid because 1. The link between autism and the comorbids are unknown. 2. If one thinks of Autism as only a misunderstood gift having those bad comorbids as something completely separate serves that agenda.

How the subtypes should be divided up is a topic I am very much open to but I do not at all want to continue with the current course. I do not believe all the education about the spectrum in the world is going to end the confusion it just involves too broad a group of people. As the author mentions subtypes are used with diabetes and most conditions. Why is autism so different that it can only be divisive?


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05 May 2018, 10:22 pm

I have been thinking about what your wrote in your last sentence for the past week. And I think it is a really important question that has no simple answer.

Though it needs an answer, with all the shades of grey filled in and the t's crossed, with an objectivity of an unusual standard...



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05 May 2018, 10:32 pm

B19 wrote:
I have been thinking about what your wrote in your last sentence for the past week. And I think it is a really important question that has no simple answer.

Though it needs an answer, with all the shades of grey filled in and the t's crossed, with an objectivity of an unusual standard...

My diagnosis states that I "present as having a typical case of high functioning autism".

What's a "typical case"?
8)


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05 May 2018, 11:18 pm

Now that we have gone to the trouble to lump the meatballs together into one meatloaf lets all....have fun making the meatloaf back into separate meat balls again...just for s**ts and giggles!

WTF?

Totally inane.



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06 May 2018, 9:54 am

ASPartOfMe wrote:
The_Walrus wrote:
Not at all interested in bringing back the old AS-autism divide (even with different names). I am not convinced that this is a meaningful distinction. It seems to me that this is principally a divide between people with particularly co-morbid conditions, rather than their autism actually manifesting differently. Perhaps the issue is that people like Alison Singer don't feel comfortable talking about learning disabilities and would rather talk about autism, which I think is a huge disservice to people with learning disabilites (particularly those who are not autistic).

I'd be more interested in seeing whether we can reliably differentiate between shades of autism. Perhaps some people reliably find sensory processing more difficult and have more numerical interests, while others are particularly keen on routine and have more imaginative interests. I'd be particularly interested if we could find biological underpinnings for these. However, I am somewhat concerned that this would simply introduce extra misconceptions - "you can't love routine, you're a green autistic!". Better to just work with a simple model and educate people about the inherent complexities, imo.



The author's proposal is at most continuing the AS Autism divide. Aspergers was a completely separate diagnosis, these are ideas for subtypes of the autism diagnosis.

I would prefer dominant "trait" or "symptom" based subtypes. The author does briefly flirt with the idea with his "with ADHD" language.

With common comorbids a decision has to be made keep them as separate diagnosis or as began by the DSM 5 with sensory issues make them diagnosable traits and subtypes. From reading posts here I am more and more agreeing with the latter course of action. IMHO a lot of things are labeled comorbid because 1. The link between autism and the comorbids are unknown. 2. If one thinks of Autism as only a misunderstood gift having those bad comorbids as something completely separate serves that agenda.

How the subtypes should be divided up is a topic I am very much open to but I do not at all want to continue with the current course. I do not believe all the education about the spectrum in the world is going to end the confusion it just involves too broad a group of people. As the author mentions subtypes are used with diabetes and most conditions. Why is autism so different that it can only be divisive?

I do think we'll probably discover that ADHD "should" be grouped under autism soon. Diagnosed comorbidity is high, undiagnosed comorbidity is even higher. Almost all of the symptoms overlap, at least in practice if not in theory. I'm not convinced that there's much of a meaningful distinction. A person with ADHD may be just as alike an autistic person as two autistic people are to each other.

I don't think autism is a "misunderstood gift" and I don't think comorbids are "bad". I think comorbidities may better explain some, but not all, of the problems that some individuals have. I think some people with very severe autism have their problems dismissed because they don't have comordities, while some people with mild autism but severe comorbidities may not have their issues addressed by services aimed at autistic people.

Diabetes is completely different to autism because it's very well established that there are two different conditions with different causes that require different treatment but have somewhat similar effects. With idiopathic autism, that's not at all well established (although we have non-idiopathic instances of autism which usually aren't grouped in).

You could also look at bipolar disorder. Most people probably aren't as aware of the differences between the two types. I certainly had to look them up. So I don't think additional types of autism would magically conjure up wider social awareness. It would seem from my limited reading that the two types actually present very differently in something closer to a binary than we see in autism. It's usually quite easy to determine which type of bipolar someone has by examining their history. On the other hand, autism is a spectrum condition with a huge variety of manifestations. Any attempts to impose extra sub-categorisations are probably going to run into difficulties with setting the boundaries.

If evidence emerges that we can reliably identify sub-types then good, let's do it. I just don't think current evidence suggests we can. The first major attempt was a big failure and I've not really read anything since that suggests we've improved.



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06 May 2018, 11:10 am

I think what we have to do is to have severity levels for each area. I think one of you may have meant something like this is an earlier post.

I think we should keep the ASD or ASC, disorder or condition, I, personally prefer condition, as the umbrella diagnosis. Then have the subgroups of categories of traits and symptoms divided up under that umbrella diagnosis with each symptom or symptom category having a severity level that can reflect fluctuating variences.

So if I were to do me, I would be
Umbrella diagnosis ASD/C (disorder or condition)

Then under that the symptom categories would be listed. So mine would be:

Emotional development - very low. Equivalent to a four year old.
Causes very significant impairment

Executive Functioning - moderate to low fluctuates
Causes significant impairment

Sensory Sensitivity- can be very severe
Causes very significant impairment

Communication deficits- these would be broken down into specific categories like:
Expresses very well in written form
Can have fluctuating moderate to significant difficulties in understanding or expressing verbal communication
Can become nonverbal
Causes significant to very significant impairment in verbal communication. Causes no to low impairment in written communication.

Repetitive movement - exhibits moderate behaviors often.
Causes low to moderate impairment

Special interests - yes
Does not cause impairment

Social Awareness - very low. Equivalent to a four to six year old
Causes moderate to extremely significant impairment

Social stamina- low
Causes significant impairment

Mental stamina in non special interest categories - fluctuates moderate to low
Causes moderate to significant impairment

Emotional stamina - moderate to low
Causes moderate to signiicant impairment

Intellectual Analytical capacity - very high
Causes no impairment

Intellectual Pratical Capacity - moderate, equivalent to a 12 year old
Causes significant impairment

Motor Skills
Can have fluctuating abilities with gross or fine motor skills
Causes low to moderate impairments

Spacial and Visual processing
Can be significantly affected
Causes fluctuating low to moderate impairment

Self Care abilities - very high but can fluctuate greatly with stress even to the point of being very low or completely incapable
Causes no to severe impairment

Not able to work without very significant accomodations

And then I would have my Autism related comorbids

Situational Depression
Creates moderate to significant impairment

Anxiety
Creates moderate to significant impairment

Autism related OCD
Creates moderate impairment

Autism related PTSD and Delayed Emotional Processing
Creates moderate to significant impairment

And I have other disabilities as well that can be included

So if we divide into subgroup severity levels of core symptoms, we have a much more accurate and fair representation of each person. And the severity levels of the symptoms can be number or alphabet coded. I think that would work much better.


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Last edited by skibum on 06 May 2018, 3:52 pm, edited 3 times in total.

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06 May 2018, 2:08 pm

You can think of it like cancer. Everyone who has cancer is under the umbrella diagnosis of cancer. But then each person has a specific sub classification based on what specific cancer he or she has. So for clinical and treatment and insurance purposes, the sub categories are crucial and should be as specific and accurate as possible so that each patient can receive help that meets his needs. But Cancer is cancer and if you have it you have it no matter how mild or severe it is or how it affects your daily life.

Now as far as lay situations are concerned, it is perfectly acceptable and normal for someone to say,"I have cancer." No one is going to respond and say, "No you don't, you don't look like you have cancer. You don't look like my dog's boyfriend's uncle's cousin's grandson third removed who has cancer and is at St Jude's with all kinds of tubes and no hair. You need to prove to me you have it or I don't have to believe you or accommodate you." If you tell people you have cancer they don't challenge you because you don't look the part. And they don't ask you to specify what kind of cancer you have. Why should we be treated any differently?


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06 May 2018, 4:28 pm

Severity levels in each category should be determined by how frequently someone is impaired in that area, how severely can it disable him, and how long can the impairment last. And it should be understood that someone could be dealing with the effects of severe impairment in multiple areas or even all of the areas at the same time.

Once you have a more realistic and accurate view of each person, you might then be able to make broader groups that each person can actually fit into if that were necessary. Or you could just address each category as an individual need. Like I have speech therapy, physical therapy and occupational therapy because of a recent injury. Each area is being addressed individually. It might be better to try to address our needs like that instead of saying things like you only get help if you are what is now considered "low functioing" but if you are considered "high functioning" because you outwardly appear normal, you get nothing.


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