What Do You Think Of The Autism Severity Scale?

[Beverly]

Well said, EP as my signature says, life is what you make it. I know not everyone has the will, courage or, strength to play a new game. The stakes are high. If you fail, you might loose everything, even yourself but, if you succeed you will have everything and, you will know yourself in the truest sense.

Outwardly society praise those who walk to beat of a different drum but, when you actually do it, they loathe you. Not because they actually hate you but, because they are jealous and envious that they lack your will, strength and, courage. They are, on the whole, unhappy with the lives they have, they are playing the common game of deceptions, half truths and, outright lies.

It is a game we on the spectrum recognize all too quickly and easily. The one thing that is honest in our very early years is the one thing we hate instinctively - touch. While it is meant to covey caring, love and acceptance, to us it coveys fear, disgust and, pain. We soon learn that we have no choice but to tolerate it. It is there the cycle of tolerating what we know is wrong or, just wrong for us begins, before we can speak or even walk.

We grow up knowing we don't like a lot of things and, a lot of things hurt us that don't seem to hurt others so, we tolerate those things because we need a home, parents, food, clothing and, can't get it if we risk it all and, stand up for ourselves. By the time we are adults we have forgotten who we really are and come to believe that all tolerance is good, right, correct.

We are wrong at that point, SOME tolerance is good, right and, correct but, not at the expense of ourselves, our peace and comfort. Undoing that learning takes more than some people possess. It takes sacrifices many cannot make. Those are the ones we need to help. The ones that can do it just need the motivation and encouragement to try, and the assurance that, when the storm passes, they will be okay.

I was fortunate to step into a world that accepted me as I was and, taught me how to separate the public game from my private life. A world that taught me how to be myself in private and play the game in public. How to shift gears quickly, and flawlessly. That allowed me to learn who I really was, what I really needed and, wanted. Once I knew that, it was only a matter of finding the path that led to what I needed and wanted. All of that came rather quickly for me, I had it all by the time I was 25.

One might expect that to be enough but, I didn't stop there, I realized I needed to do something to insure what I had built for myself would last the rest of my life, and that that life would be my own, the life I wanted when the lights went down for the last time for me.

Unlike so many of my peers, I didn't live a life of opulent luxury, I saved most of what I earned, knowing the spotlight would not be on me forever and, one day all of the lights would go down for the last time for me. I would be what they call a has been. That day came, I welcomed it I was ready for the chance to stop playing the game every day. I wanted full days, even weeks where I didn't have to play the game even once. I have that now. I can play when I want to but, I don't need to play the game ever again if I choose not to. I have control of my life, my environment and who does what to me.

That is something many of us will never have, something i wish I could give each and every one of us. The scale is, in my opinion trying to take away what small measure of that receiving assistance gives so many that may communicate relatively well and be fully capable of caring for themselves in a private world yet cannot play the game well enough to insure any acceptable future at all for themselves.

If I could, I would give every one of us the opportunities and people I have now and have had in the past. The chance to earn a future using your biggest passion and, be accepted by those around you while you earn that future. I can't give you that but, perhaps a word I type somewhere, or a song I write will be the one piece you need to know yourself, be yourself, and make your life great. Not perfect because that is impossible in this world but, with all of the right pieces, you can make a great life for yourself and, for some, one of those pieces is publicly funded financial support.

Were I to be tested now, i would test out of any assistance, not that I need any but, because I can function quite well in society if I must, I would test as not requiring support at all. In truth I have had a lot of support my entire adult life, just not form the government. I was blessed with people patient enough to teach me a good deal of executive skills and, give me tools that help me do those tings in a way I understand.

I will never be a good organizer, I'm doing well to keep each type of canned food in a separate shelf of my pantry and, each type of silver in the correct place in the drawer. but please don't open my refrigerator, something will probably fall out. it is a mess but, I know what is in there and were each item is. no one else could find much in there, my husband can't but I know what is where. And stay out of my bedroom unless you like navigating my maze of cords and shoes and, a set or two of clothing. That's my sanctuary and, with the electric blanket, my guitar and amp and, my keyboard and it's amp in there, it is a bit of a maze of wires. I don't always pick up my dirty clothes each morning so, there might be a few things strewn on the floor and, I never make my bed except when I change my sheets. I also don't do dishes if I can find enough for the next meal without washing anything.

I could hire a maid but then, I'd have to put on my facade while he or she was here and, I don't want to do that every day anymore so, if my home is a mess, so be it, that's me, and I'm okay with it.

 

[Slithytoves]

NTs preach the value and joy of diversity, that it's what makes society great but, then they turn around and try to ostracize those of us that actually are diverse.

So much of what you wrote in your post resonated with me, but in fairness, I have to say a word for NTs on this point.

Some NTs preach the value of diversity, and I've found that most of those who do so practice what they preach in their treatment of the diverse. Other NTs sneer at the very word "diversity", quite openly -- or qualify every statement they make about its value -- and practice accordingly. There is a segment in the middle who speak out of both sides of their mouths and do the "turn[ing] around" you mention, but a much bigger segment seem to be pretty consistent in their direction, one way or the other.

NTs are no more monolithic than we are.

 

[Judge]

There's also one other factor in the equation that doesn't bode well for any of us. What if statisticians were to discover that the spectrum of autism spans not merely two percent of the population, but say...twenty percent. Not something contemplated in the course of establishing universal healthcare, whether driven by a public sector or a private one.

I don't think government bean-counters would want that to get out any more than say that Soylent Green was people.

So you create mechanisms to suppress the possibility. Such as an ambiguous diagnostics process. Conspiracy theory? Maybe. Or just fiscal prudence in a post-recession era where bureaucrats continue to maintain leverage over medical science and more importantly, medical ethics.

 

[Nitro]

There's also one other factor in the equation that doesn't bode well for any of us. What if statisticians were to discover that the spectrum of autism spans not merely two percent of the population, but say...twenty percent. Not something contemplated in the course of establishing universal healthcare, whether driven by a public sector or a private one.

I don't think government bean-counters would want that to get out any more than say that Soylent Green was people.

So you create mechanisms to suppress the possibility. Such as an ambiguos diagnostics process. Conspiracy theory? Maybe. Or just fiscal prudence in a post-recession era where bureaucrats continue to maintain leverage over medical science and more importantly, medical ethics.

A conspiracy could well be on the list of reasons,but how could they recruit pawns without the refusals sounding off about it. If I firmly knew what was going on and did not like it,I could not be bought off.
I am going to run with the bean counter theory...Governments use a set of math rules not found in any book that defy logic

 

[Judge]

A conspiracy could well be on the list of reasons,but how could they recruit pawns without the refusals sounding off about it. If I firmly knew what was going on and did not like it,I could not be bought off.
I am going to run with the bean counter theory...Governments use a set of math rules not found in any book that defy logic

When it comes to public policy, indifferent bureaucrats can often create far more damage than malicious, partisan mindsets.

 

[Progster]

I was diagnosed with AS according to the DSM-IV, and I don't know how that diagnosis would translate in the DSM 5. I would think almost certainly level 1. My level of functioning varies according to my circumstances. At the time of diagnosis, I was suffering from depression and anxiety, was unable to work and support myself financially, and I could not live alone. At that point, I would have met the criteria for the DSM 5. Now, my circumstances have changed. I'm back living with my partner, I'm working from home, and I'm managing my life again. I work alone and with individuals, not with groups or in a team. I feel I have more control over my environment and my situation, so my stress levels are reduced. I live independently in that I do not need any assistance from the state, but I don't live alone, I live with someone who helps me and can do the things for me which I find hard. I can hold a conversation with an individual, but not in groups. I don't easily pick up on the emotional state or intentions of others during a conversation, and I find it hard to initiate conversations, and I can't do things like banter, or sporadic, unscripted conversations. I rely a lot on scripts. So I don't know whether I would qualify for a DSM 5 diagnosis, it depends how they define 'living independently' and 'needing support'.

 

[Beverly]

Exactly, Ashe Skyler, we are scolded for our "one track mind" when we are focused on something yet, it's that ability to focus so completely that allows us to succeed.

We are also more adept at overcoming perceptual handicaps. I cannot accurately judge speed or distance yet I have never received a ticket for a driving violation and, I have been driving since I was 17. I have dyslexia comorbid (that was diagnosed while I was in elementary school) but, I didn't let that stop me from writing. I write music and lyrics professionally and, short stories as a hobby. And yes ASD and Dyslexia make a very odd perception combination when I presented with something new. i sort of see the whole as a mess of jumbled detail until I can get focused and sort through it all, like the details are all mixed up on top of the whole.

For a lot of us, it isn't so much that we can't function, it's that we can't function by the "normal" rules, we have to find our own way of functioning, of making the world make sense to us. Math makes little sense to me, yet I use it every day. I am a good cook and, I can scale recipes up to serve more or, down to serve fewer faster than my NT husband who is good with math. I couldn't tell you the math behind doing it, I just know that's the measurement I need to make that much more or less of the recipe. that isn't the"normal" way of doing it but, that is what works for me and, my method never fails me.

 

[Judge]

Exactly, Ashe Skyler, we are scolded for our "one track mind" when we are focused on something yet, it's that ability to focus so completely that allows us to succeed.

Good point. If I didn't have that intense focus, I suspect it would keep me from persevering.

I get the job done because I just won't quit- or let go of what I'm focused on. This is good!

Although at times I concede that it can occasionally drive people a little crazy...

 

[Nitro]

Good point. If I didn't have that intense focus, I suspect it would keep me from persevering.

I get the job done because I just won't quit- or let go of what I'm focused on. This is good!

Although at times I concede that it can occasionally drive people a little crazy...

I am one that never quits until a task is done properly. I seek as close to perfection as I am capable of doing. I have been witness to people who seem to never have time to do a job properly and always have time to do it over. Counter productivity is the biggest waste of time.

A buddy of mine called me to ask for advice on a job he was doing half-assed. I carefully explained to him the proper methods he should use.He continued to do it his way and it failed exactly how I had described it would. His loss,not mine,he wanted a shortcut and it bit him on the butt.

 

[Judge]

I am one that never quits until a task is done properly. I seek as close to perfection as I am capable of doing. I have been witness to people who seem to never have time to do a job properly and always have time to do it over. Counter productivity is the biggest waste of time.

A buddy of mine called me to ask for advice on a job he was doing half-assed. I carefully explained to him the proper methods he should use.He continued to do it his way and it failed exactly how I had described it would. His loss,not mine,he wanted a shortcut and it bit him on the butt.

Agreed.

There's great truth in the axiom, "Work smarter- not harder." Yet it's amazing how many people fail to grasp the concept.

 

[King_Oni]

As with many lists, they're arbitrarily set values that don't adress the personal struggles one has and therefore will exclude a group of individuals that actually need support in certain areas but can easily be excluded because they don't qualify on a full shoppinglist of symptoms.

This, among other lists and changes I've been dealing with irks me quite a bit in that they seem to enforce the notion to decrease people on the spectrum, but the reality is, that changing the criteria does not change difficulties, struggles or illness, but does probably make it a lot harder for anyone to get anywhere they need to be in life.

It's this kind of list that's a bureaucrats wet dream, as anything indexed is depersonalized and easy to file on either a pile for level 1, level 2, level 3 or none, rather than specialized care that benefits the individual, rather than people that qualify and will be put in therapy by a literal busload, because that seems to be the most efficient way to transfer information.

But just like the fact that Aspergers as a seperate disorder has been excluded in the DSM V, I expect a revision to come somewhere that might be more favorable for many of us.

 

[Nitro]

As with many lists, they're arbitrarily set values that don't adress the personal struggles one has and therefore will exclude a group of individuals that actually need support in certain areas but can easily be excluded because they don't qualify on a full shoppinglist of symptoms.

This, among other lists and changes I've been dealing with irks me quite a bit in that they seem to enforce the notion to decrease people on the spectrum, but the reality is, that changing the criteria does not change difficulties, struggles or illness, but does probably make it a lot harder for anyone to get anywhere they need to be in life.

It's this kind of list that's a bureaucrats wet dream, as anything indexed is depersonalized and easy to file on either a pile for level 1, level 2, level 3 or none, rather than specialized care that benefits the individual, rather than people that qualify and will be put in therapy by a literal busload, because that seems to be the most efficient way to transfer information.

But just like the fact that Aspergers as a seperate disorder has been excluded in the DSM V, I expect a revision to come somewhere that might be more favorable for many of us.

It still boils down to an opinion in the end,no matter how they want to classify each patient.Each individual needs to be cared for on a one on one basis,not from a generic instruction manual steered by money. I for one would not want the responsibility of writing it because it would be like getting asked for the mileage marker number on infinity.

 

[AsheSkyler]

Any autism diagnosis does need a start point. They just really need to work on the parameters to have it customized properly so there is a solid way to help diagnose individuals. Like a flow chart or something.

...Why am I starting to see similarities between autism and taxes? "Begin with the 1040, standard autism diagnosis. If you have standard comorbids, use 1040EZ. If you have [this and this and this] comorbid, use 1040A-autism or 1040-autism with [this and this and this] schedule to properly file your autism diagnosis. If you have [this and this] special ability/interest, we will give you a refundable credit of extra social status. If you have [this and this] unwanted ability (crowing like a chicken stim?), then you will incur an additional tax equivalent to a [this and this] dip in social status."

 

[Slithytoves]

There's also one other factor in the equation that doesn't bode well for any of us. What if statisticians were to discover that the spectrum of autism spans not merely two percent of the population, but say...twenty percent. Not something contemplated in the course of establishing universal healthcare, whether driven by a public sector or a private one.

So you create mechanisms to suppress the possibility. Such as an ambiguous diagnostics process. Conspiracy theory? Maybe. Or just fiscal prudence in a post-recession era where bureaucrats continue to maintain leverage over medical science and more importantly, medical ethics.

Great points. From everything I've read (and acknowledging some drawing of studied inferences on my part) it is increasing awareness of just how large the autistic population may be that led in part to the DSM change effected by Dr. Swedo and her twelve work group colleagues.

The autism spectrum is a problem for the medical/psychiatric community. Its encompassed conditions are neither medical nor mental illnesses, as we all understand here. They are something much bigger and more complex than that, more rightly appearing on a multidimensional spectrum with neurotypicality that, in its entirety, would paint an accurate picture of natural human neurological variation. The less fortunate of us are disabled in degrees by the extent of our neurodiversity, which is what necessitates autism's place in the diagnostic realm, but as a group we extend far beyond that and we simply don't have a system for dealing with it properly.

As more and more people have been identified (or identify themselves) as being on the spectrum, something had to be done for the implications for funding, etc. The obvious options were either to remove autism from the medical realm altogether, which is very hard to justify considering the existence of so many profoundly autistic people, or to narrow the parameters for what qualifies as autism. The choice was pretty clear.

It's interesting to note that while Dr. Swedo and her team made a sweeping change to the spectrum criteria, purportedly to reduce the subjectivity of diagnosis, there was no new corresponding diagnostic tool developed, or even recommended. The combination of strict diagnostic criteria with inadequate and arbitrarily applied diagnostic tools makes it easy to maintain a very narrow view of how expansive the spectrum population really is.

My psychiatrist and I discussed this, and she thinks it's a very real possibility. She has heard concerns raised in inter-agency meetings about just how hard autism is for the government to deal with. There is even talk of excluding Autism Spectrum Disorder from diagnoses that qualify for mental health services in my state, to avoid the issue altogether.

 

[Slithytoves]

My level of functioning varies according to my circumstances. At the time of diagnosis, I was suffering from depression and anxiety, was unable to work and support myself financially, and I could not live alone. At that point, I would have met the criteria for the DSM 5.

So I don't know whether I would qualify for a DSM 5 diagnosis, it depends how they define 'living independently' and 'needing support'.

Just curious -- how do you feel about the idea that it was functional impairments from comorbids that likely qualified you for diagnosis, rather than your primary ASD symptoms?

Exactly, Ashe Skyler, we are scolded for our "one track mind" when we are focused on something yet, it's that ability to focus so completely that allows us to succeed.

Our hyper-focus is all good until it inconveniences somebody.

This, among other lists and changes I've been dealing with irks me quite a bit in that they seem to enforce the notion to decrease people on the spectrum,

It's certainly not the first time governments have made populations disappear, or become more manageable, by changing the way the numbers are counted.

But just like the fact that Aspergers as a seperate disorder has been excluded in the DSM V, I expect a revision to come somewhere that might be more favorable for many of us.

I don't. There's no incentive for anyone to do that. It would be something we'd have to fight for ourselves.

Any autism diagnosis does need a start point. They just really need to work on the parameters to have it customized properly so there is a solid way to help diagnose individuals. Like a flow chart or something.

Exactly. The key to that would be in the diagnostic instruments, but the emphasis has all been on diagnostic criteria. There is no universal diagnostic process for autism spectrum disorder(s). It's all over the place. Doctors within my own clinic use completely different protocols to make a diagnosis of autism! That's pretty sad.

 

[Aspergirl4hire]

Great points. From everything I've read (and acknowledging some drawing of studied inferences on my part) it is increasing awareness of just how large the autistic population may be that led in part to the DSM change effected by Dr. Swedo and her twelve work group colleagues.

The autism spectrum is a problem for the medical/psychiatric community. Its encompassed conditions are neither medical nor mental illnesses, as we all understand here. They are something much bigger and more complex than that, more rightly appearing on a multidimensional spectrum with neurotypicality that, in its entirety, would paint an accurate picture of natural human neurological variation. The less fortunate of us are disabled in degrees by the extent of our neurodiversity, which is what necessitates autism's place in the diagnostic realm, but as a group we extend far beyond that and we simply don't have a system for dealing with it properly.

As more and more people have been identified (or identify themselves) as being on the spectrum, something had to be done for the implications for funding, etc. The obvious options were either to remove autism from the medical realm altogether, which is very hard to justify considering the existence of so many profoundly autistic people, or to narrow the parameters for what qualifies as autism. The choice was pretty clear.

It's interesting to note that while Dr. Swedo and her team made a sweeping change to the spectrum criteria, purportedly to reduce the subjectivity of diagnosis, there was no new corresponding diagnostic tool developed, or even recommended. The combination of strict diagnostic criteria with inadequate and arbitrarily applied diagnostic tools makes it easy to maintain a very narrow view of how expansive the spectrum population really is.

My psychiatrist and I discussed this, and she thinks it's a very real possibility. She has heard concerns raised in inter-agency meetings about just how hard autism is for the government to deal with. There is even talk of excluding Autism Spectrum Disorder from diagnoses that qualify for mental health services in my state, to avoid the issue altogether.

I had to click Like but what I meant was scary. Reminds me of the closure of a lot of facilities in the belief that "mainstreaming would just happen." What happened was homelessness on a scale not seen since the Great Depression. Irony!

And savagery.

 

[qwerty]

I had to click Like but what I meant was scary. Reminds me of the closure of a lot of facilities in the belief that "mainstreaming would just happen." What happened was homelessness on a scale not seen since the Great Depression. Irony!

And savagery.

Oh hell yeah, keep preaching sisa

This is sooo true it is perhaps the most frustrating, irresponsible and naive
The push for minimising the involvement of clinical assistance and the just
plain irresponsible idealistic belief that community mainstreaming is the
best example of paving a road to hell with bricks of good intentions, grrrrrr.

I remember talking with a colleague about how this new model is not a good
idea. omg the patronizing response was just baffling to me, she went on and
on about how this was so much more respectful for clients, now i hate when
people are referred to as clients, i restrained myself from pointing out the irony
of talking about respect while casually reducing a person to a label in the hopes
of continuing the discussion. I asked how did she see this as empowering and
said how this would prevent institutionalization and was a great way to treat
" clients" with more respect by having them rely on the services less so they
would feel like more of a part of the community.

I mentioned that this new approach must be saving the government billions
in funding by sending them off to charitable community organisations without
the resources or education needed to cope with this massive influx of people
and that the responsibility of the care of people with complex issues would be
incredibly stressful for people who generally work for a charity run organisation
out of a sense of care and make little money and what makes us assume these
organisations have anywhere near the resources to cope.
I then said how the prevention of institutionalisation was insane, how do you
prevent people already heavily institutionalised from institutionalisation?
I said i had heard from many people that there was a lot of fear and anxiety
and a sense that the rug had been pulled out from under them and they
were being thrown away. There will be many deaths caused by this and the
effects of this will be felt for generations. *rant,rant* sorry for the rant.
I haven't read the other posts yet so this may seem a bit out of left field.

 

[Progster]

Just curious -- how do you feel about the idea that it was functional impairments from comorbids that likely qualified you for diagnosis, rather than your primary ASD symptoms?

My primary assessment was for Asperger's disorder, and that is what the psychiatrist was asked to evaluate me for. I cannot receive a diagnosis of Asperger's unless I fulfill the required criteria. If he didn't think I had it, but just thought that my symptoms were due to depression, then he would have diagnosed me with depression without AS. The psychiatrist examined many aspects of my life, past and present, including childhood development. I haven't been depressed all my life, but I have had social, relationship and employment difficulties, and have always had autistic traits. Depression and anxiety disorders often go hand in hand, but they are seperate diagnoses with different criteria. A good experienced clinician knows how to separate the symptoms of depression from those of ASD, and will be able to detect the underlying ASD which is leading to the anxiety and/or depression. Being diagnosed with depression as I was does not disqualify me from a diagnosis of Asperger's syndrome.

Also, just because I was able to reach a point in my life where I'm able to cope better and no longer need help from the state doesn't mean that the AS is no longer there or that the diagnosis isn't correct.

It's no wonder that so many people with ASD are misdiagnosed, or the ASD behind their depression and anxiety isn't picked up on.

 

[Nitro]

My primary assessment was for Asperger's disorder, and that is what the psychiatrist was asked to evaluate me for. I cannot receive a diagnosis of Asperger's unless I fulfill the required criteria. If he didn't think I had it, but just thought that my symptoms were due to depression, then he would have diagnosed me with depression without AS. The psychiatrist examined many aspects of my life, past and present, including childhood development. I haven't been depressed all my life, but I have had social, relationship and employment difficulties, and have always had autistic traits. Depression and anxiety disorders often go hand in hand, but they are seperate diagnoses with different criteria. A good experienced clinician knows how to separate the symptoms of depression from those of ASD, and will be able to detect the underlying ASD which is leading to the anxiety and/or depression. Being diagnosed with depression as I was does not disqualify me from a diagnosis of Asperger's syndrome.

Also, just because I was able to reach a point in my life where I'm able to cope better and no longer need help from the state doesn't mean that the AS is no longer there or that the diagnosis isn't correct.

It's no wonder that so many people with ASD are misdiagnosed, or the ASD behind their depression and anxiety isn't picked up on.

I have to agree with you on having a good clinician vs. a lazy or inept one missing a diagnosis in total. I brought up the fact that this was a strong possibility in another thread,but it seems it was misinterpreted by some.
To not use a person's life history would also create another flaw. I think it is important to mention that the team that arrived at my status did not use any model based on DSM5 and only borrowed some of what was written in the previous version. My early childhood history of delayed speech pushed me out of qualifying as an aspie and dropped me into the autie category according to what was earlier written. I actually had to point it out to them in the beginning,because their task at hand was to help boost my cognition from my TBI,not diagnose my wiring difference.
It is my honest opinion that the psych world is riddled with quacks who only pave the way for more confusion that hinder the results of those who remain true to actual care.

 

[Slithytoves]

My primary assessment was for Asperger's disorder, and that is what the psychiatrist was asked to evaluate me for. I cannot receive a diagnosis of Asperger's unless I fulfill the required criteria. If he didn't think I had it, but just thought that my symptoms were due to depression, then he would have diagnosed me with depression without AS.

It's no wonder that so many people with ASD are misdiagnosed, or the ASD behind their depression and anxiety isn't picked up on.

I hope you understand that I didn't meant to imply your diagnosis isn't correct or that you clinician didn't know what he was doing. I am familiar with how clinicians separate diagnoses. Not long ago there was a minor discussion here about the role comorbids play in manifestations of Asperger's, and it was from that conversation that my question occurred to me. What I was getting at, and maybe executed badly, was that it was when you were having particular difficulty with your depression/anxiety that your AS rated well enough impairment-wise to be clearly detectable. You said: "My level of functioning varies according to my circumstances," so I was curious how you felt about how your secondary symptoms factored into your assessment. Some of us here have expressed a belief that a lot of what makes our Asperger's classifiable as a "disorder" is actually from the influence of comorbid conditions. See what I'm saying? My apologies. I might have worded it better.

My AS was missed for 25 years of attempts at identification because of my comorbid depression and family history of mental illness. With those at the front of every clinician's mind, nobody looked for anything neurodevelopmental even though, looking back, the signs were all there. You're lucky your doctor was more on the ball than so many of mine.