Asperger's confusion:

[DuckRabbit]

Ok,so label everything just to keep the playing field level...Just exactly how much more confusion do you feel is necessary to garner more services for the cause?

Do you think there's no difference between Bill Gates and Rain Main? Or Mozart and Elisa Segrave's son which I quoted above (http://www.spectator.co.uk/2017/01/...gers-son-loved-turned-his-life-upside-down/)? Or Temple Grandin and Danielle Jacobs aka Kayden Clarke (1992–2016)?

 

[Nitro]

Do you think there's no difference between Bill Gates and Rain Main? Or Mozart and Elisa Segrave's son which I quoted above (http://www.spectator.co.uk/2017/01/...gers-son-loved-turned-his-life-upside-down/)? Or Temple Grandin and Danielle Jacobs aka Kayden Clarke (1992–2016)?

I never said there weren't differences...All I asked was how many more labels were needed. Do you actually trust anything that requires a subjective opinion to garner support to begin with? Who do you trust to write the guidelines? Yes,what a fool I must be,hand it to the same ones who wrote the first book laden with flaws,they'll get it right the first time on this one.
I skimmed thru that article and didn't react to it in the same manner that you did. Not a great cross section in my honest opinion.
I feel strongly against drugging individuals up to begin with. I am entitled to my opinion about brain drugs,having been prescribed a gamut of them during the course of my bout with a TBI. Name a nasty psychotrope and I was probably prescribed it at one time or another.

Some throw it out there how they couldn't function without going to a therapist or head shrinker,but personally,I think lots of them do more harm than good,especially the med prescribers.I feel this way due to finding out how flawed these fools treated me after I junked out my left frontal cortex,so once again,my trust was lost in the black art of psychology.
Then add to the mix the slew of neuropsychs who were never on the same page that passed me around so much that it made my head spin. I was the neuropsych that had to point them in the direction of me being autie,not the other way around,so I have little to no faith in that subset of braniacs as a result of trusting their judgement when I had little to no power to make changes to what was going on.

I will still stand firm to my belief that changing the name of a dysfunction or adding more names to what it is in no way alters the outcome of where the individual ends up.

 

[DuckRabbit]

I'm not asking for more labels; I'm asking to reinstate the ones we already had: Asperger Syndrome and autism. I would like to dispense with the label "high-functioning autism" as to me that confuses lots of issues.

I agree there can be bad therapists/psychiatrists/diagnosticians who haven't got a clue, but there are also some good ones. There must be a thread somewhere on this forum about people's good and bad experiences with clinicians.

I do think it falls to people on the spectrum to educate many professionals about the 'condition' (I prefer to call it a way of being as even condition sounds like something peculiar). My message to uninformed professionals would be two-fold: (1) don't assume that those who are on the spectrum are disabled/ unable to live unassisted/ unable to hold down a job or hold a position of responsibility; (2) don't assume that someone who doesn't have a full-blown diagnosis of autism (because they don't meet the criteria) isn't struggling and doesn't need assistance or allowances made.

 

[WittyAspie]

There's a sort of similar trend in the Netherlands where less and less diagnoses in psychiatry are eligible for coverage from our healthcare system.
As a response to this though, psychiatrists have started giving people different diagnoses, i.e. not the diagnosis they would normally give the patient, but the closest, somewhat comparable diagnosis that does allow the patient to receive treatment without going bankrupt.
Sort of a public secret, but the government and insurance companies can't do anything about it because they're not in a position to determine someone's actual diagnosis.

I have had a caregiver or two suggest thet I get my oldest daughter reevaluated. But my insurance will only cover services for those on the autism spectrum, so I would rather jave an incorrect diagnosis than no access to services.

 

[Judge]

Are you saying they have made the 'symptoms' more severe (e.g., so that less people qualify for them? i.e., Aspergers don't stand a change of getting help but autistic people do?

I'm saying that they've made the diagnostic process more complex and yet more subjective. With the real intent to limit or deny medical services and insurance coverage to fiscally accommodate the Affordable Care Act. No matter where one may actually be on the spectrum of autism.

Politically there are legislators who don't care about such distinctions. They only care about fiscal restraint, so they lobbied to influence the diagnostic process to fit the allocation of funding for medical services and insurance coverage. Some to ideologically support the ACA through an adequately perceived budget, with others who are fundamentally and ideologically opposed to government spending. Dynamics that span both sides of the aisles in Congress.

As for the insurers, they want to limit coverage any way they can, given that the ACA has totally undermined their most basic underwriting processes, a basic, yet major tenet of insurance. They can't weed out catastrophic risk exposure, but they can influence certain diagnostic processes to lessen exposure to losses.

Especially those conditions for which the professional medical community itself may not fully understand. Above all this legislative process has a hierarchy in the following order:

1) Politicians
2) Insurers
3) Medical Professionals

And then additionally "coloring" the situation legislatively are pharmaceutical manufacturers and trial lawyers.

It's all about the "spread of risk" to accommodate the theory of the law of large numbers. Not providing real help to those who really need it. Compounded by an inability to control losses, forcing health care services and insurance premiums to soar. And potentially create yet an even more militant climate in figuring new ways to limit or deny coverage whether it's warranted or not.

All enough for Hippocrates to have rolled over in his grave- many times.

 

[Nitro]

I'm not asking for more labels; I'm asking to reinstate the ones we already had: Asperger Syndrome and autism. I would like to dispense with the label "high-functioning autism" as to me that confuses lots of issues.

I agree there can be bad therapists/psychiatrists/diagnosticians who haven't got a clue, but there are also some good ones. There must be a thread somewhere on this forum about people's good and bad experiences with clinicians.

I do think it falls to people on the spectrum to educate many professionals about the 'condition' (I prefer to call it a way of being as even condition sounds like something peculiar). My message to uninformed professionals would be two-fold: (1) don't assume that those who are on the spectrum are disabled/ unable to live unassisted/ unable to hold down a job or hold a position of responsibility; (2) don't assume that someone who doesn't have a full-blown diagnosis of autism (because they don't meet the criteria) isn't struggling and doesn't need assistance or allowances made.

You stated that you dislike the label of high functioning when it refers to autism. This has come up in others threads here,where I asked where is the cutoff point and who gets to decide it. There are too many variations on our individual diversities as auties to ever accomplish that. Next you would have to overhaul the entire psych methodology to keep those outside of the autism spectrum in check as well.
I also tend to call my autism a condition and not a disability by any means. In fact,I tend to think of my version of it as a gift with a little patina on it.

I couldn't agree more with the need to put it out there from the viewpoint of those who experience it,nor will I dispute that there are pros out there that "get" it,but there are a vast number more in that craft that don't.
Find me a room full of brainiacs that agree on much of anything let alone adding what school of psychology they use during assessments on any neurological condition to the mix. There's where it will continue to be frayed and leave you with nothing but more meaningless labels to add to their own beliefs.

Once again,we will go full circle back to fiscal responsibilities for support and how opinions can be swayed by money in any arena

 

[StephF]

In my mind Autism / Aspergers is not a mental illness but it can certainly be a disability.

The reason I was diagnosed as having Aspergers is because although I am diagnosed as Autism Spectrum Disorder I had no delay in language development. In fact I have heightened language skills.

 

[DuckRabbit]

You stated that you dislike the label of high functioning when it refers to autism.

I stated only that the label "high-functioning autism" is confusing.

 

[Nitro]

I stated only that the label "high-functioning autism" is confusing.

So how do you propose adding a gajillion more labels to the mix won't be confusing to others?

 

[DuckRabbit]

So how do you propose adding a gajillion more labels to the mix won't be confusing to others?

Since when did two pre-existing labels (Asperger Syndrome and autism) equate to "adding a gajillion more labels to the mix"?

Isn't it frustrating that diagnosis, like life, is full of complexities and contaminated by subjective perception? (And God has cruelly thwarted our efforts to by-pass subjective perception by ensuring that our efforts to find objective, biological markers of autism have so far been in vain)?

I don't think it helps though to throw our hands up and despair that, as it's all so complex and subjective, let's just make do with one monolithic label: "autism" - and leave that to trigger whatever images and stereotypes exist in people's minds from whatever film or book they've most recently had exposure to - whether 'Rain Man' or 'Amadeus'. Or perhaps from the latest news article announcing that some deranged school shooter "has Aspergers".

As I said above, some on the spectrum require support (e.g., assisted living), others are merely 'odd' socially and don't require support other than say the understanding that they can thrive in a part-time job but a full-time job would socially and emotionally shatter them - regardless of how high their IQ is or how educated or qualified they are.

Wouldn't there be more funds freed up for people who truly need it if people's needs were accurately identified? At the moment, they have made the diagnostic process so complex and yet more subjective, as Judge said, to deter people from applying for access to services in case everyone milks the system dry.

The DSM-5 purports to be needs-focused but we cannot escape the fact that the label "autism" has connotations in people minds which do a disservice to people who can live unassisted yet who could benefit from some support but won't apply for it because of the stigma entailed. Labels are not surgical instruments cutting nature at the joints; they are subjective and riddled with irrational/ unconscious/ inaccurate images, evaluations and stereotypes.

I do think the label "has Asperger's" is over-used, when really people mean "autistic". Autism means cognitive and/or language deficits as well as social deficits. Asperger Syndrome means social deficits but no cognitive or language deficits, as StephF says.

 

[WereBear]

As a woman with Asperger's, I think they have just barely begun to study it and there's still a lot of misconceptions. What does High Functioning Autism even mean? Is it hard to tell? What distinguishes such from any random geek in chess club? How can I score so high on any number of tests for autism and yet be so socially adept I was promoted over NTs?

For what it's worth, I think it got put on a spectrum to quantify it; it's easier to crunch on a spreadsheet that way. Just part of the general trend to assign numbers to all diseases... with all the mayhem and idiocy that approach is bound to create.

And, BTW, there isn't "limited resources." There's just resources greedy assholes want ALL of...

 

[Nitro]

Since when did two pre-existing labels (Asperger Syndrome and autism) equate to "adding a gajillion more labels to the mix"?

Isn't it frustrating that diagnosis, like life, is full of complexities and contaminated by subjective perception? (And God has cruelly thwarted our efforts to by-pass subjective perception by ensuring that our efforts to find objective, biological markers of autism have so far been in vain)?

I don't think it helps though to throw our hands up and despair that, as it's all so complex and subjective, let's just make do with one monolithic label: "autism" - and leave that to trigger whatever images and stereotypes exist in people's minds from whatever film or book they've most recently had exposure to - whether 'Rain Man' or 'Amadeus'. Or perhaps from the latest news article announcing that some deranged school shooter "has Aspergers".

As I said above, some on the spectrum require support (e.g., assisted living), others are merely 'odd' socially and don't require support other than say the understanding that they can thrive in a part-time job but a full-time job would socially and emotionally shatter them - regardless of how high their IQ is or how educated or qualified they are.

Wouldn't there be more funds freed up for people who truly need it if people's needs were accurately identified? At the moment, they have made the diagnostic process so complex and yet more subjective, as Judge said, to deter people from applying for access to services in case everyone milks the system dry.

The DSM-5 purports to be needs-focused but we cannot escape the fact that the label "autism" has connotations in people minds which do a disservice to people who can live unassisted yet who could benefit from some support but won't apply for it because of the stigma entailed. Labels are not surgical instruments cutting nature at the joints; they are subjective and riddled with irrational/ unconscious/ inaccurate images, evaluations and stereotypes.

I do think the label "has Asperger's" is over-used, when really people mean "autistic". Autism means cognitive and/or language deficits as well as social deficits. Asperger Syndrome means social deficits but no cognitive or language deficits, as StephF says.

This is not a quest to distance Asperger’s from other forms of autism; rather it is a matter of having an accurate understanding of the abilities and needs of Aspergers. In my view, the ‘Asperger’ label needs to be reserved for those with no impairments other than in social-political skills so that Aspergers can get the help they need without being excluded from certain lines of work or suddenly marginalised in the office because they are perceived as 'having a disability'.

To quote you:
To me, this 32-year-old man's behaviour sounds like autism, not Asperger Syndrome. Isn't Asperger Syndrome supposed to be the high-functioning version of autism? I wonder how many people who are Aspergers are prevented from declaring any difficulties/deficits because they risk being stigmatised as being 'mentally disabled' and unable to live unassisted like this man?

As a rebuttal to that:

I had a language based developmental delay which threw me out of the aspie category according to the also very flawed DSM IV's Asperger's Syndrome,yet that didn't stop me from doing anything I ever sought to do with myself,nor required support for anything that had to do with autism.I was never out to milk any system dry,but in the USA, our latest DSM was placed as a roadblock to prevent it from happening.Heck,I might not be able to cling to my status under DSM 5 for that matter,but in the bigger picture,it is only another useless label

There you go again showing disdain for yet another way a label is used.If you add further categories of Asperger's syndrome,how do you label them if the range of needed support varies from one individual to the whether support is needed or not? There's the catch 22 dead in front of you that you are failing to see.

Autism in the USA was given an umbrella to let all of it fall under with varying grades of it according to how much support was required. Would your version of Asperger's shove you outside of the Aspie slot according to the DSM 5 and deny you needed support?

 

[Nitro]

What does High Functioning Autism even mean? Is it hard to tell? What distinguishes such from any random geek in chess club? How can I score so high on any number of tests for autism and yet be so socially adept I was promoted over NTs?

.

The corporate world was a breeze for me as well,playing hopscotch over the rest of the job candidates on my way up the ladder and even got to warm the CEO chair a few times,in spite of being autistic and not considered aspergic.

 

[Xenocity]

the reason fro the change in folding Asperger Syndrome into Autism formally in the new DSM, is literally due to how the American Medical Establishment and U.S. Government (and the states) view Asperger Syndrome.

We in the U.S. primarily view it as Autism with high intelligence with all the negative functioning stereotypes that Autism supposedly has according to us Americans.

Even my own physician is appalled by this decision (his young relative has AS too).

Most of the world uses the European Standard instead of the American DSM.
Thankfully the European Standard makes a better distinction and listing.

As long as us Americans feel the need to "cure" every damn "abnormality", forcing everyone to conform, nothing will change.

I can attest to the huge side effects that the medication causes.
This is from weight gain, caused by the huge tanking of my metabolism and giving me constant cravings/ feelings of hunger.
To neurological side effects, to memory issues (yeah long term use of SSRIs and other antidepressants, and being put on high powered antipsychotic mediations) to other huge side effects.

Though to be fair, I was on the verge of huge breakdown , extreme deep depression, and was becoming more suicidal on top of it all.
i do suffer from severe anxiety/nervousness to the point of crippling, and a host of other mental health issues which may or may not be related to Asperger Syndrome (Mental Health disorder which run on my mother's side.).

I'm still not sure that being medicated is the right choice, but i am afraid to find out what happens if I go off them.

So until the parties at be in the U.S. stop associating Aspergers and other forms of Autism with the severest form Autism, nothing will change.

Though we might be expecting too much from the American side... I mean look at what we did!

 

[DuckRabbit]

the reason fro the change in folding Asperger Syndrome into Autism formally in the new DSM, is literally due to how the American Medical Establishment and U.S. Government (and the states) view Asperger Syndrome.

We in the U.S. primarily view it as Autism with high intelligence with all the negative functioning stereotypes that Autism supposedly has according to us Americans.

Even my own physician is appalled by this decision (his young relative has AS too).

Most of the world uses the European Standard instead of the American DSM.
Thankfully the European Standard makes a better distinction and listing.

As long as us Americans feel the need to "cure" every damn "abnormality", forcing everyone to conform, nothing will change.

I can attest to the huge side effects that the medication causes.
This is from weight gain, caused by the huge tanking of my metabolism and giving me constant cravings/ feelings of hunger.
To neurological side effects, to memory issues (yeah long term use of SSRIs and other antidepressants, and being put on high powered antipsychotic mediations) to other huge side effects.

Though to be fair, I was on the verge of huge breakdown , extreme deep depression, and was becoming more suicidal on top of it all.
i do suffer from severe anxiety/nervousness to the point of crippling, and a host of other mental health issues which may or may not be related to Asperger Syndrome (Mental Health disorder which run on my mother's side.).

I'm still not sure that being medicated is the right choice, but i am afraid to find out what happens if I go off them.

So until the parties at be in the U.S. stop associating Aspergers and other forms of Autism with the severest form Autism, nothing will change.

Though we might be expecting too much from the American side... I mean look at what we did!

= lucidly cuts through all the fog, confusion and polemics to the heart of the matter. This feels like the missing puzzle piece I was searching for when I set out my possible clinical and possible political reasons for excising AS from the DSM. Many thanks.

I can understand the fear of going off medications - trying to find the lesser of two evils, especially when there may be mental health disorders such as clinical depression, bipolar or schizophrenia alongside being Asperger's. Not easy at all.

Perhaps the best way through on a societal level is to continue doing functional imaging studies and repeated scanning in all kinds of conditions and at all developmental ages until we narrow down some 'causes' - as well as nuancing our understanding of individuals' psychological complexes, interpretations and responses. This may be a better use of funds than the $1.3 billion allocated to the European Commission's Human Brain Project to build on a supercomputer a mathematical simulation of the human brain with its 86 billion neurons and 100 trillion synapses.

 

[OkRad]

the reason fro the change in folding Asperger Syndrome into Autism formally in the new DSM, is literally due to how the American Medical Establishment and U.S. Government (and the states) view Asperger Syndrome.

We in the U.S. primarily view it as Autism with high intelligence with all the negative functioning stereotypes that Autism supposedly has according to us Americans.

Even my own physician is appalled by this decision (his young relative has AS too).

Most of the world uses the European Standard instead of the American DSM.
Thankfully the European Standard makes a better distinction and listing.

As long as us Americans feel the need to "cure" every damn "abnormality", forcing everyone to conform, nothing will change.

I can attest to the huge side effects that the medication causes.
This is from weight gain, caused by the huge tanking of my metabolism and giving me constant cravings/ feelings of hunger.
To neurological side effects, to memory issues (yeah long term use of SSRIs and other antidepressants, and being put on high powered antipsychotic mediations) to other huge side effects.

Though to be fair, I was on the verge of huge breakdown , extreme deep depression, and was becoming more suicidal on top of it all.
i do suffer from severe anxiety/nervousness to the point of crippling, and a host of other mental health issues which may or may not be related to Asperger Syndrome (Mental Health disorder which run on my mother's side.).

I'm still not sure that being medicated is the right choice, but i am afraid to find out what happens if I go off them.

So until the parties at be in the U.S. stop associating Aspergers and other forms of Autism with the severest form Autism, nothing will change.

Though we might be expecting too much from the American side... I mean look at what we did!

This is very true. Medications do terrible, horrible things to me, too. I am maybe getting a med alert bracelet to list the med allergies I have which even include waking up when under for a procedure once!!!

I do wish I had better social skills. It pains me that I cannot connect. I wish I could eat better. I do not mind being different but I just wish I was not so odd that I turned people away.

I walk that fine line of wanting a cure and wanting a cure just for the comorbid things. In the end, I WOULD like to be NT but only a smart and intelligence, high funcitong NT!!! Would I want to be an average sop? No. But we are not average anyway. We want to be us, just finctional and that is not too much to ask.

 

[OkRad]

I never said there weren't differences...All I asked was how many more labels were needed. Do you actually trust anything that requires a subjective opinion to garner support to begin with? Who do you trust to write the guidelines? Yes,what a fool I must be,hand it to the same ones who wrote the first book laden with flaws,they'll get it right the first time on this one.
I skimmed thru that article and didn't react to it in the same manner that you did. Not a great cross section in my honest opinion.
I feel strongly against drugging individuals up to begin with. I am entitled to my opinion about brain drugs,having been prescribed a gamut of them during the course of my bout with a TBI. Name a nasty psychotrope and I was probably prescribed it at one time or another.

Some throw it out there how they couldn't function without going to a therapist or head shrinker,but personally,I think lots of them do more harm than good,especially the med prescribers.I feel this way due to finding out how flawed these fools treated me after I junked out my left frontal cortex,so once again,my trust was lost in the black art of psychology.
Then add to the mix the slew of neuropsychs who were never on the same page that passed me around so much that it made my head spin. I was the neuropsych that had to point them in the direction of me being autie,not the other way around,so I have little to no faith in that subset of braniacs as a result of trusting their judgement when I had little to no power to make changes to what was going on.

I will still stand firm to my belief that changing the name of a dysfunction or adding more names to what it is in no way alters the outcome of where the individual ends up.

Very scary. I know!!! The neuro cogs and shrinks are all over when you have TBI on top of autism. I am not on meds, and they are OK with that. But they are more than ready even though I am allergic to so many!!

I appreciate your posts, Nitro. The TBI totally altered the autism. I figured it out. For me, it's not the tbi anymore (well it is , but it's very slight. Mine was mTBI), but it had catastrophic effecfts on my autism. Or so THEY say. It may be that the autism effects the TBI come to think of it.

You help me think outside the box. Maybe the autism made it so my brain has a harder timje with the tbi! Either way, they work together and THEY do not get that. It's always one Dr for tbi and one for autism and no one connects them.

Fish oil to the rescue!!!

 

[Nitro]

Very scary. I know!!! The neuro cogs and shrinks are all over when you have TBI on top of autism. I am not on meds, and they are OK with that. But they are more than ready even though I am allergic to so many!!

I appreciate your posts, Nitro. The TBI totally altered the autism. I figured it out. For me, it's not the tbi anymore (well it is , but it's very slight. Mine was mTBI), but it had catastrophic effecfts on my autism. Or so THEY say. It may be that the autism effects the TBI come to think of it.

You help me think outside the box. Maybe the autism made it so my brain has a harder timje with the tbi! Either way, they work together and THEY do not get that. It's always one Dr for tbi and one for autism and no one connects them.

Fish oil to the rescue!!!

First off,thank you.

I did a lot of problem solving and troubleshooting over the course of my lifetime. In order to get to the bottom of an issue,it is very necessary to cut thru the garbage to find the best solutions. I got paid a load of money for my abilities during my time spent in the working world.Adding more clutter only adds more confusion to anything. I have always stood by the mantra of K.I.S.S....keep it simple stupid when it came to problem solving.
The point I was trying to drive home was that as flawed as DSM 5 is for enabling support for some,it is still a step in the right direction over favoring a subset that envelopes many into a single category based on little or no information to differentiate one individual to the next. Who gets left holding the bag here when one clinician subjectively decides that someone isn't aspie enough to be a diminished functioning aspie or whatever off the hook or wall nametag they stick to it next...not fair at all in my honest opinion and borderlining on stupidity

 

[Xenocity]

= lucidly cuts through all the fog, confusion and polemics to the heart of the matter. This feels like the missing puzzle piece I was searching for when I set out my possible clinical and possible political reasons for excising AS from the DSM. Many thanks.

I can understand the fear of going off medications - trying to find the lesser of two evils, especially when there may be mental health disorders such as clinical depression, bipolar or schizophrenia alongside being Asperger's. Not easy at all.

Perhaps the best way through on a societal level is to continue doing functional imaging studies and repeated scanning in all kinds of conditions and at all developmental ages until we narrow down some 'causes' - as well as nuancing our understanding of individuals' psychological complexes, interpretations and responses. This may be a better use of funds than the $1.3 billion allocated to the European Commission's Human Brain Project to build on a supercomputer a mathematical simulation of the human brain with its 86 billion neurons and 100 trillion synapses.

Ok... the point I was making or trying to make was societies around the world are becoming ever increasingly narrow focused on a subset of traits.
Everything else is deemed wrong and in need of curing.

Conformity is unfortunately the focus of society!

This is why everything has gotten to this point.

 

[Full Steam]

Very scary. I know!!! The neuro cogs and shrinks are all over when you have TBI on top of autism. I am not on meds, and they are OK with that. But they are more than ready even though I am allergic to so many!!

I appreciate your posts, Nitro. The TBI totally altered the autism. I figured it out. For me, it's not the tbi anymore (well it is , but it's very slight. Mine was mTBI), but it had catastrophic effecfts on my autism. Or so THEY say. It may be that the autism effects the TBI come to think of it.

You help me think outside the box. Maybe the autism made it so my brain has a harder timje with the tbi! Either way, they work together and THEY do not get that. It's always one Dr for tbi and one for autism and no one connects them.

Fish oil to the rescue!!!

You just reminded me of something that I'm researching and testing on myself now.

There is some evidence that glutamate levels in the brain could be responsible for some negative autism traits.

In addition to which, glutamate can spill into other brain regions from stroke or injury, causing more problems - a possible link between your issues.

Glutamate can be controlled by elevating GABA, and this can be done by supplementing taurine, and maybe gaba itself, amount other things. Check out the links I'll add later before taking anything as it's complex.

I started taking taurine last week to see if it could help with shutdown. It's too early to say for sure, but I feel great right now, and better than for a long time.

I'll dig out my references to back this up, and I'll blog about it once the dust settles.