Is Asperger's overdiagnosed or underdiagnosed?

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XFilesGeek
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04 Jan 2013, 5:35 pm

AgentPalpatine wrote:

The biggest evaluation system in the United States is the US Department of Defense, where I believe it is an automatic bar to service. They screen hundreds of thousands of young adults every year, and they run background checks that would at least pick up a DX that was told to the school district. I would expect an example by now.

Aspergers has only been a bar to service since around 2008.

And I was DXed by the military mental health system after 6 years of being in.

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answeraspergers
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04 Jan 2013, 5:36 pm

"And thus, the amount of diagnoses balances out in these two groups".

maybe overall you could argue this balances out but this fails both groups.

XFilesGeek
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04 Jan 2013, 5:38 pm

Quote:

I know this doesn't help solve the ongoing questions about where to draw the line between ASDs and non-ASDs, but I do think it's a real mistake to look at it from the perspective of impairment first and issue second. It distorts everything from the very start and leaves less room to objectively consider where to draw that line. In short, I don't know if the answer to the question is over- or under- because I'm not sure I understand exactly what is being diagnosed.

If you're not "impaired," you don't need to diagnosed with anything in the first place, and that includes ASDs.

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04 Jan 2013, 5:41 pm

Filipendula wrote:

I find this a really confusing topic since the objectives of diagnosis seem to vary so dramatically from one person or place to another. Even before you begin to broach what actually constitutes an ASD trait, you have this issue of the level of 'impairment'. Surely this is the wrong way round?

If you sprain your ankle and go to the doctor, you will be diagnosed with a sprained ankle irrespective of whether you managed to hobble to the doctor's office or had to be carried. Once the nature of the issue is established, then you begin to consider the level of impairment. E.g. are painkillers/anti-inflammatories required, and at what strength? Will a splint be needed or will a firm bandage do the trick? Should they provide you with a crutch, or do you already have access to one?

It should be the same for ASDs. First establish if a person fits the pattern of traits and diagnose them as either fitting or not fitting that neurological framework. Then at least they'll have a better understanding of who they are and how they work even if they seem to be doing fine for the most part. Then assess what further intervention is required, if any at all. In the case of the DSM-V, I would suggest that the impairment levels include a 'Level 0' which is to say that only very minor support or perhaps no support at all is required e.g. basic education as to the condition. Then people could be reassessed at intervals and move up and down these impairment levels throughout life so that appropriate support can be allocated at different stages.

I know this doesn't help solve the ongoing questions about where to draw the line between ASDs and non-ASDs, but I do think it's a real mistake to look at it from the perspective of impairment first and issue second. It distorts everything from the very start and leaves less room to objectively consider where to draw that line. In short, I don't know if the answer to the question is over- or under- because I'm not sure I understand exactly what is being diagnosed.

I realise that what I'm saying may seem to completely miss the point or sound like rubbish to many, but I have reasons for my point of view. However, I can't explain them without writing an even more unappetisingly long post so I think I'll wait to see what objections come up first

This is precisely the point of this post (and the blog entry linked to from it): http://www.wrongplanet.net/postt219991.html

I think you might be the first person I've seen who really seems to understand the point I was trying to make here. Whether someone is impaired and how to deal with it is important, but saying the issue doesn't exist unless the impairment is apparent is completely backwards. Autism is not caused by impairment. Impairment is caused by autism. Autism is it's own thing.

XFilesGeek wrote:

If you're not "impaired," you don't need to diagnosed with anything in the first place, and that includes ASDs.

There are reasons for diagnosis besides simply seeking assistance with an impairment. Simple peace of mind ought to be reason enough to tell someone that yes, they are autistic. And it can be essential for personal reasons.

Hm. Imagine that. The lack of a diagnosis (and therefore the lack of definitive proof to other people that you are naturally the way you are, not faking it or making it up for attention) can actually *cause* social and personal impairment where none would otherwise have existed.

Last edited by kotshka on 04 Jan 2013, 5:43 pm, edited 1 time in total.

invisiblesilent
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04 Jan 2013, 5:43 pm

I'd be inclined to think that for a certain subset of the population, i.e. people over a given age, that AS is underdiagnosed. Using myself as an example: I was displaying classic symptoms of AS as a child but was not diagnosed due to fact that knowledge about AS had not propagated through the education system in my country by that point. Eventually I was labelled as a "naughty" child and dealt with accordingly - the label stuck throughout my mandatory education. Half a lifetime later after near-constant struggles with daily life and mental health problems I happened to stumble upon some good information about AS and very quickly realised that was probably my issue and so I went to get an official diagnosis. I can imagine that there are a lot of people out there of my age (and older) who had similar experiences, would be diagnosed in a heartbeat by a clinician with experience of ASDs but remain undiagnosed to this day due to lacking the information and due to clinicial incompetence. I presented with mental health problems for 15 years to various GPs, psychs and therapists, not ONE person thought to send me to an ASD expert despite my clear ASD symptoms and that only finally happened when I outright insisted on it. Once I actually got to see someone who knew their stuff I was diagnosed in a metaphorical heartbeat - the guy was chuckling to himself as I described some of my symptoms (I'm thinking he was thinking: "How did those other fuckwits not figure this out?" - even I could tell this was the chuckle of a man who was hearing what he had expected to hear and had heard from other patients a hundred times before) and was VERY categorical that, in his words, I "obviously have AS". So I think that for at least people of my age and older AS is underdiagnosed. I have no idea about how children and younger people get diagnosed so I couldn't comment on that. There is also the thing which a few mentioned about the likelihood that there are numerous women going undiagnosed due to the differing presentation of AS in women. So overall I'm going to say that I think AS/ASDs are underdiagnosed.

I think Fnord mentioned self-diagnosis. There may be a side problem in which some people are reading a little about AS, deciding they have it, acting accordingly but never making any real effort to have someone who knows what they're talking about corroborate their suspicions. I'm not sure how harmful this actually is except to the people who are doing it to themselves. I suppose it could also trivialise ASDs in the mind of those who encounter these people which thinking on could actually cause some real damage. I suppose that is why I am a strong advocate that anybody who believes they may have an ASD should do their level best to get it confirmed or otherwise. I'd be *very* interested to see conversion rates of self-diagnosis to legit medical diagnosis in people who seek it out. Personally I can't imagine why anyone would NOT want to be diagnosed if they thought they had an ASD? One of my things is that I MUST know things - it is an all-encompassing urge. Once I realised I might have autism I HAD TO KNOW and I wasn't happy until I got my diagnosis last month. I can't imagine that somebody would be happy enough to never have something like this confirmed - it truly puzzles me. Maybe somebody could explain?

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04 Jan 2013, 5:55 pm

invisiblesilent wrote:

I think Fnord mentioned self-diagnosis. There may be a side problem in which some people are reading a little about AS, deciding they have it, acting accordingly but never making any real effort to have someone who knows what they're talking about corroborate their suspicions. I'm not sure how harmful this actually is except to the people who are doing it to themselves. I suppose it could also trivialise ASDs in the mind of those who encounter these people which thinking on could actually cause some real damage. I suppose that is why I am a strong advocate that anybody who believes they may have an ASD should do their level best to get it confirmed or otherwise. I'd be *very* interested to see conversion rates of self-diagnosis to legit medical diagnosis in people who seek it out. Personally I can't imagine why anyone would NOT want to be diagnosed if they thought they had an ASD? One of my things is that I MUST know things - it is an all-encompassing urge. Once I realised I might have autism I HAD TO KNOW and I wasn't happy until I got my diagnosis last month. I can't imagine that somebody would be happy enough to never have something like this confirmed - it truly puzzles me. Maybe somebody could explain?

Ask our UK cousins for the list of licenses you can't get with an AS DX. I can't confirm if it's true, but if it is, it's more than a little disturbing. Since everything is through the NHS, there is good reason to avoid a DX if you're in some professions.

As an aside, I've heard but not confirmed that AS has been an issue in custody and divorce cases, I have yet to see it introduced as impeachment evidence in a criminal or civil case. If there's a ruling to that effect.....it would effectively stop any adults from seeking a DX.

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04 Jan 2013, 6:00 pm

whirlingmind wrote:

self "diagnosis" is not a diagnosis.

Agreed.

AgentPalpatine
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04 Jan 2013, 6:01 pm

XFilesGeek wrote:

AgentPalpatine wrote:

Aspergers has only been a bar to service since around 2008.

And I was DXed by the military mental health system after 6 years of being in.

I stand corrected. 4 years would be just enough time that there could be cases in the pipeline, but we would'nt know about them yet. I reserve the right to raise my objection in 2 years.

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04 Jan 2013, 6:07 pm

My father has many autistic traits, and he would fit the AS criteria, but he is not impaired by his autistic traits, so he does not need a diagnosis to get accommodations for impairments, and he does not identify as autistic, even though it is obvious that he has many of the same traits that I do, and sometimes he is more socially clueless than I am. One thing that he doesn't have is sensory issues, which are major source of problems for me, so that is one of the big differences between me with diagnosis for impairments and him without impairments or diagnosis.

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04 Jan 2013, 6:36 pm

btbnnyr wrote:

Your comment re. sensory issues rings true for me too. I believe I have several hyposensitivities, but little or nothing by way of hypersensitivity. What I think this means is that I have a far greater capacity to tolerate and bumble my way through social situations without the distractions or discomforts that many of you face. It also means I don't get so tired, overwhelmed or depressed. I think if you removed the sensory issues from the condition, a huge number of people with moderate to severe ASDs might suddenly find even the non-sensory trials of life far easier to cope with. Sensory issues seem to have the potential to interfere with and impact upon almost everything.

And yet, they're only just about to be recognised in the DSM! :roll:

Now that says something about diagnosis if you ask me.

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04 Jan 2013, 6:38 pm

Filipendula wrote:

btbnnyr wrote:

Sensory issues seem to have the potential to interfere with and impact upon almost everything.

And yet, they're only just about to be recognised in the DSM! :roll:

Now that says something about diagnosis if you ask me.

This.

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04 Jan 2013, 6:41 pm

In my family, the autistic traits go like this:

My father: socially inept + rigid
My mother: rigid + sensory issues
Me: socially inept + rigid + sensory issues

But my levels of social inept, rigid, and sensory issues are more severe than the same traits in my parents. So they are bap, and I am autistic.

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04 Jan 2013, 6:46 pm

AgentPalpatine wrote:

I'm from the UK, I wasn't aware of any prohibitions as a result of AS aside from one: serving in the military. All people with diagnosed ASDs are prohibited from serving in the UK military with no exceptions. I shall have to go find out if there any others. Are you aware of any specific example? The DVLA (our motor-licensing body) requires you to inform them about your ASD if it impairs your ability to drive. I didn't inform them personally because driving is one of the few areas of life in which I *don't* struggle.

I hadn't considered the possibility of it being raised as a weapon in a custody or divorce battle. That would certainly be a situation in which it may be prudent to not be diagnosed.

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04 Jan 2013, 6:48 pm

XFilesGeek wrote:

Quote:

If you're not "impaired," you don't need to diagnosed with anything in the first place, and that includes ASDs.

That's kind of missing the point I was trying to make. I just think impairment is something to be discussed when you get to second base, not something with which to frame all initial observations.

Another crude analogy (sorry, I lack imagination) would be that if a routine scan indicate the presence of a large tumour in a patient, you wouldn't ignore it just because it didn't seem to be causing any observable health problems. You would progress through stages:

1. diagnose the patient as having a tumour
2. investigate the tumour (is it malignant or benign?)
3. clarify diagnosis and decide how to treat the tumour, if at all.

You may conclude that the tumour is benign and can be happily ignored, but it doesn't change the fact that the patient has been diagnosed with a tumour which may become a useful feature of their medical history for future reference.

(Again, apologies for comparing ASDs with tumours. This is not intended to be taken literally, I just couldn't think of anything else.)

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XFilesGeek
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04 Jan 2013, 6:54 pm

Filipendula wrote:

XFilesGeek wrote:

Quote:

If you're not "impaired," you don't need to diagnosed with anything in the first place, and that includes ASDs.

That's kind of missing the point I was trying to make. I just think impairment is something to be discussed when you get to second base, not something with which to frame all initial observations.

I suppose it depends on the person.

Some people are impaired without realizing it.

Quote:

Another crude analogy (sorry, I lack imagination) would be that if a routine scan indicate the presence of a large tumour in a patient, you wouldn't ignore it just because it didn't seem to be causing any observable health problems. You would progress through stages:

1. diagnose the patient as having a tumour
2. investigate the tumour (is it malignant or benign?)
3. clarify diagnosis and decide how to treat the tumour, if at all.

You may conclude that the tumour is benign and can be happily ignored, but it doesn't change the fact that the patient has been diagnosed with a tumour which may become a useful feature of their medical history for future reference.

Even a benign large tumor has the potential to become an issue later, but I get your point.

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04 Jan 2013, 7:15 pm

CyclopsSummers wrote:

Verdandi wrote:

I think overdiagnosis is significantly less of an issue than people seem to want to believe. I think it is more likely that people who need diagnoses to access services and treatments are missed than it is that too many people are covered.

That's just it. There is no 'over' or 'under' to it. There is only diagnosis. Underdiagnosis assumes that there are people in need of a psychiatric evaluation who, for reasons of varying nature, have no access to this. It's a sure bet that this occurs; everywhere, but in some places more than others. They aren't diagnosed. But they're autistic.

If people who need a diagnosis cannot get a diagnosis, then you have underdiagnosis. I don't see how you can say "there is no over or under to it."

Quote:

A diagnosis clears things up. It places a name on a certain condition, on a complex of symptoms. It opens up a door to taking - hopefully appropriate- steps toward making life a bit easier.
But a diagnosis should NOT be treated as an identity tag, as something that defines one's be-all-and-end-all set in stone.

How are you connecting "treated as an identity tag" to "as something that defines one's be-all-and-end-all." I do consider autism to be a part of my identity, but I also consider my gender, my romantic orientation, my asexuality, my upbringing, and my interests to be parts of my identity too. Why should some parts of myself (using myself as an example) be arbitrarily excluded from my identity?

How do you know that accepting autism as a part of one's identity does not aid in making life a bit easier?

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