Medical Is Coping with Asperger's Worth the Effort?

[Evo]

'...whatever you want to call it...'

IF a group of people is diagnosed by a set of criteria in which none are 'deficiencies' in themselves, the use of the term with respect to the group is pejorative. There is no 'whatever you want to call it', the use of the term would be wrong, given the criteria you, yourself, have provided (unless the term is used specifically in discussion of another matter which is a deficiency).

I was referring to you wanting to change the descriptions.

Maybe by changing the language, then, we can encourage everyone to move to a common centre-ground of behavioural style, rather than delineating between the two that emphasises differences.

 

[cmb]

I'm not sure I got your meaning there...

Anyhow, the other point you just raised is fairly important. Why would a person coping with this get diagnosed anyhow? I'll explain that I ended up in the position of discussing this a few years back with health professionals because I was getting extremely fatigued. I think, it's true, there may be a possible element related to struggling to juggle all these 'coping mechanisms' for so long (they are not free of mental exertion to make them work well!), but it was/is principally due to an underlying migraine issue.

The point being; where 'Asperger Spectrum' is poorly understood by the health practitioner, there may be a tendency to attribute 'that condition' to the cause of tiredness or anxiety, or anything else that is not obviously physiological, when, in fact, that would just be a red-herring. If it is viewed as 'an illness', then any other 'illnesses' get all bundled together, which may end up with a 'non-optimum' outcome for the actual treatment proposed.

With no outward sign of other issues, other than the 'diagnostic' observations of behaviour, there is a risk that someone who fits the diagnosis may have any other 'invisible' health problems bundled into a "well, it's to do with his Asperger Condition" type of response. Aspie folks can suffer chronic fatigue and mental health issues too, just like NT's, but there's a risk of not-being-listened-to and missing out on taking appropriate measures quickly, even when you insist the issue is nothing to do with your 'Asperger's Condition'.

 

[atyy]

Like I said, if they have deficiencies/issues/whatever you want to call it that fit with the diagnostic criteria, then yes. If they are so *high functioning* that it causes no problems, I doubt they would even be under psychiatric care to get diagnosed.

I posted the proposed diagnostic criteria from the DSM V in an earlier post.

I'm only posting pointers for discussion in response to your request for references from academic literature that may help formulate thesis, antithesis and synthesis. Other than that, I don't intend to agree or disagree with any points made by any posters in this thread.

Here's another interesting excerpt:
http://www.ncbi.nlm.nih.gov/pubmed/21931335
In search of biomarkers for autism: scientific, social and ethical challenges
Pat Walsh, Mayada Elsabbagh, Patrick Bolton & Ilina Singh
Nature Reviews Neuroscience 12, 603-612 (October 2011)
"Box 4 | Neurodiversity

Proponents of neurodiversity claim that the atypical neurological development seen in autism is, in fact, a normal human variation that should be recognized as an acceptable difference. They therefore reject the conceptually problematic classifications of 'normal' and 'abnormal' functioning and insist on a distinction between 'neuro-diverse' and 'neuro-typical' functioning⁵⁸. As a result, we are encouraged to broaden our understanding of health, disease and disability and to reconceptualize autism in such a way that we no longer think of it as a condition that needs treatment, correction and prevention.

The neurodiversity movement presents an important challenge to our usual perspectives on autism by forcing us to attend to the contested nature of the concept of 'normality' and its attendant complexities, by drawing our attention to the positive aspects of autistic spectrum conditions and by insisting on respect for cognitive differences. In all of these ways, it resembles the campaigns for recognition by other disadvantaged groups who eventually succeeded in changing public perceptions of their condition. The positive side of this standpoint is that it enables people with autism to celebrate their distinctive strengths. However, it has also been suggested⁵⁹ that accepting neurodiversity may reinforce the unhelpful and potentially dangerous idea that there are differences between autistic and non-autistic people at a fundamental biological and ontological level that affect, for instance, how we conceive of their moral agency and membership of the moral community⁶⁰. It may also lead to a tendency to underestimate the severe effects autism has on the lives of those with serious cognitive impairments and the acute isolation and loneliness experienced by even high-functioning individuals⁶¹.

58. Glannon, W. Neurodiversity. JEMH 2, 1–6 (2007).

59. Holmer Nadeson, M. Constructing Autism: Unravelling the Truth and Understanding the Social (Routledge, London, 2005).

60. Barnbaum, D. R. The Ethics of Autism: Among Them, But Not Of Them (Indiana Univ. Press, Bloomington, Indiana, 2008).

61. Fitzpatrick, M. Defeating Autism (Routledge, London, 2009)."

 

[Evo]

I'm only posting pointers for discussion in response to your request for references from academic literature that may help formulate thesis, antithesis and synthesis. Other than that, I don't intend to agree or disagree with any points made by any posters in this thread.

Here's another interesting excerpt:

In search of biomarkers for autism: scientific, social and ethical challenges
Pat Walsh, Mayada Elsabbagh, Patrick Bolton & Ilina Singh
Nature Reviews Neuroscience 12, 603-612 (October 2011)
"Box 4 | Neurodiversity

No, I only asked CMB to back up his claims.

I can only go by those I know that have been diagnosed with aspergers that have the inability to make eye contact, they cannot cope with new situations, they cannot cope with stressful situations, or social situations. They don't undertand/can't cope with emotions. They don't work well with others, and romantic relationships are more than they can handle.

Of course, there are different levels, autism spectrum disorder covers a very wide range, and as had been pointed out, people with ASD often suffer from additional disorders. All this is discussed in what I previously linked to.

There is nothing wrong with having disorders, once you get diagnosed, you can get help, if you want it. Some don't, they prefer to withdraw and avoid the outside world as much as possible.

 

[cmb]

No, I only asked CMB to back up his claims.

I'm not aware that I have made many claims. Mostly, I was simply 'reciprocating' claims others have made, here in this thread, but normalised to an 'Asperger's' point of view.

Which claims do you feel remain unsubstantiated?

 

[Sinister1811]

Hi, I'm new to this forum, but I couldn't help but notice the following:

No, I only asked CMB to back up his claims.

I can only go by those I know that have been diagnosed with aspergers that have the inability to make eye contact, they cannot cope with new situations, they cannot cope with stressful situations, or social situations. They don't undertand/can't cope with emotions. They don't work well with others, and romantic relationships are more than they can handle.

You seem to make a lot of generalizations about people with Asperger's. I also have it, or rather, I've been diagnosed with it. But a lot of what you have said doesn't apply to me at all. You seem to forget that people are individuals, regardless of whether they have AS or not. You seem to be under the assumption that *all* people with Asperger's are defective. Just as one neurotypical differs from another, so too do "Aspies". Not all of them struggle with eye contact, not all them struggle with emotions etc.

Neutotypicals aren't perfect either. A lot of them also have issues, which I see you've completely overlooked. Instead, you seem to imply that AS is a defective psychiatric condition, in which, a person must "seek help". I must say I was offended by your lack of understanding on the subject. You claim to know what it's like, just by knowing two people with AS.

 

[Evo]

You seem to make a lot of generalizations about people with Asperger's.

No, I've made it clear that these are the syptoms of those I personally know and that there ia a large range. You should read all of a person's posts before jumping to the wrong conclusion.

You should also read the post you're quoting.

My post you quoted CLEARLY states

I can only go by those I know that have been diagnosed with aspergers

AND

Of course, there are different levels, autism spectrum disorder covers a very wide range, and as had been pointed out, people with ASD often suffer from additional disorders. All this is discussed in what I previously linked to.

There is nothing wrong with having disorders, once you get diagnosed, you can get help, if you want it. Some don't, they prefer to withdraw and avoid the outside world as much as possible.

I'll also post what I told another member.

No, I just want to stop the labeling of people as "this" and "that" unless we are specifically discussing an impairment. Since "neurotypical" is the default norm, there is no reason to use that term. People with disabilities can fall within the normal range of behavior, using that term automatically places a person with a disability into the "abnormal" category and that's wrong.

 

[zoobyshoe]

Anyhow, the other point you just raised is fairly important. Why would a person coping with this get diagnosed anyhow? I'll explain that I ended up in the position of discussing this a few years back with health professionals because I was getting extremely fatigued. I think, it's true, there may be a possible element related to struggling to juggle all these 'coping mechanisms' for so long (they are not free of mental exertion to make them work well!), but it was/is principally due to an underlying migraine issue.

The point being; where 'Asperger Spectrum' is poorly understood by the health practitioner, there may be a tendency to attribute 'that condition' to the cause of tiredness or anxiety, or anything else that is not obviously physiological, when, in fact, that would just be a red-herring. If it is viewed as 'an illness', then any other 'illnesses' get all bundled together, which may end up with a 'non-optimum' outcome for the actual treatment proposed.

With no outward sign of other issues, other than the 'diagnostic' observations of behaviour, there is a risk that someone who fits the diagnosis may have any other 'invisible' health problems bundled into a "well, it's to do with his Asperger Condition" type of response. Aspie folks can suffer chronic fatigue and mental health issues too, just like NT's, but there's a risk of not-being-listened-to and missing out on taking appropriate measures quickly, even when you insist the issue is nothing to do with your 'Asperger's Condition'.

It sounds like your case is unusual, the Asperger's was suspected incidental to a different complaint, and didn't directly cause any problems that got you sent for an evaluation. Had you not had Migraine and chronic fatigue the Asperger's might never have been remarked.

Asperger's is frequently co-morbid with a range of other things like seizures, obsessive-compulsive disorders, tourettes, depression, and even bipolar disorder. Migraine doesn't surprise me, either. But there shouldn't be any suggestion Asperger's is the cause of any of the co-morbid conditions. All anyone knows is that they're frequently co-morbid.

Anyway, you have to bear in mind that in most cases the Asperger's, itself, causes some dysfunction or incident that gets the person referred for evaluation. There's a marked inability to cope that threatens, or outright prevents, their functioning in school or on the job. The circumstances of your diagnosis weren't typical, and it doesn't sound like whatever Asperger's symptoms you have rendered you dysfunctional.

 

[CrimpJiggler]

My understanding is that someone who does not have this mental structure cannot comprehend what it is like to function with this completely different world view. I feel that it is not a disease or ‘syndrome’ as much as having different tools to analyze and interact with reality. There are advantages that more than make up for the difficulty in communication.

I agree. Similar to how someone with aspergers cannot comprehend what it is like to function with this completely different world view. I don't consider it a disease or a disorder either because given the choice, I would not want to "cure" it. Normal people like gathering in groups and talking to each other about mundane things. I like programming and learning scientific related things. What I do with my time is more productive so why not? Thats the reality behind it, people with this condition make up for their disabilities with their strengths. Unfortunately, normal people don't give them the benefit of the doubt and instead, they assume their lack of ability in social areas is a reflection of their overall abilities which couldn't be further from the truth. The first ability someone who meets you sees is your social and verbal communication abilities.

 

[cmb]

I agree. Similar to how someone with aspergers cannot comprehend what it is like to function with this completely different world view. ... Thats the reality behind it, people with this condition make up for their disabilities with their strengths. ...

Let's not get ahead of ourselves here. I have been ready to admit, as above, that there may be particular disabilities associated with being on the Asperger Spectrum, and it is quite appropriate to discuss those complications as having clinical impact. But it is a different thing to imply all on this spectrum have complementary and mitigating skills (as much as it is as inappropriate to imply all on the spectrum have 'deficiencies').

I would also reject the notion that 'AS' people are 'incapable' of perceiving the world like an 'NT', just as I would reject the idea that an 'NT' would find it impossible to imagine what it is like to be an 'AS'. It is a continuum of behaviour, and in the margin where that continuum meets (or, even, by particular behavioural strategies) then though one may instinctively have 'preferred' behaviours, it may not exclude being able to 'strech' oneself to behave, or at least imagine behaving, differently to one's norm.

I suspect the 'sociological' issue behind a general public viewing Asperger's as a 'disability' is because most are only introduced to the issue/'condition' by being shown the worst cases in which such people are disabled by their AS tendencies and need special care. Why would they take much interest in someone who is 'coping', or, even, may be doing better than they are managing?! That wouldn't make very interesting TV, so the general public is unlikely to see 'a day in the life of an average Aspie coping with life'.

 

[misterarthur]

My son is on the spectrum. ("Diagnosed" PDD/NOS - pervasive developmental disorder, not otherwise specified - in other words "we don't know"). I'm not qualified to comment on much of the discussion here (I'm not even a scientist, but I subscribe to the physorg rss feed). Anyway, for anyone on the spectrum, or the parent of someone on the spectrum, I recommend wrongplanet.org It's got a great forum for young people (teens in particular), and useful information for parents. I am not associated with the organization in any way at all. If you, or someone you know or love has Asperger's (or any 'high-functioning' level of autism), I recommend checking it out.

 

[zoobyshoe]

I suspect the 'sociological' issue behind a general public viewing Asperger's as a 'disability' is because most are only introduced to the issue/'condition' by being shown the worst cases in which such people are disabled by their AS tendencies and need special care. Why would they take much interest in someone who is 'coping', or, even, may be doing better than they are managing?! That wouldn't make very interesting TV, so the general public is unlikely to see 'a day in the life of an average Aspie coping with life'.

There are certainly plenty of bipolar people who aren't extreme enough to ever become dysfunctional, and also schizophrenics, and epileptics. You name the diagnosis, and there are people out there who have it, but for whom it hasn't become a serious enough problem to lead to a diagnosis. That doesn't mean it's not affecting the quality of life they'd have otherwise.

(You might wonder how someone could be having seizures without it becoming problematic. In a footnote to the second edition of Musicophilia Oliver Sacks writes:

"Many people, it seems, may accept mild epileptic or other disturbances and not think to mention them to their doctors or anyone else. After reading this chapter, one correspondent, a neuroscientist, wrote to me of having 'suffered seizures when the church bell rings during the consecration at Mass...This doesn't bother me in the least,' she added, but now I am wondering if I should mention it to my doctor.' ")

The fact these people aren't diagnosed doesn't mean they are perfectly normal, healthy, living a viable "alternate" way. Coping, as you said earlier, is draining. The extra effort it takes for anyone living with a liability like this to cope and stay functional would be unnecessary without the condition.