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What Do You Think Of The Autism Severity Scale?

Jenisautistic

Well-Known Member
V.I.P Member
Severity levels for autism spectrum disorder. where do you belong?what do you think of them?

Severity level

Social communication

Restricted, repetitive behaviors

Level 3
"Requiring very substantial support”
Severe deficits in verbal and nonverbal social communication skills cause severe im





Severity levels for autism spectrum disorder unfortunately this one is from autism speaks because that is the only one I could find at the time

If you find a simmilar scale let me know and reply

Severity level

Social communication

Restricted, repetitive behaviors

Level 3
"Requiring very substantial support”
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches
Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.
Level 2
"Requiring substantial support”
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and how has markedly odd nonverbal communication.
Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.
Level 1
"Requiring support”
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.
Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.
 
I was diagnosed in level 1. I like how they attempt to lay out how the level of impairment is determined by clearly identified criteria. It gives a simple summary of the challenges each level represents, making the spectrum severity a little easier to grasp.

I was given a similar summary along with the written body of my assessment results.
 
I find it somewhat problematic that functionality should be the main criteria for categorizing autism variants. This may be useful to social support agencies, but is far to generalized, I believe, for any kind of in depth assessment of a persons abilities and challenges. It also conflates the severity of the ones autism with the challenges they face in daily functioning, whereas it is quite possible that two people with the same neurology could have very different levels of functioning depending on the skills they have learned and the environments they find themselves in. As I have mentioned elsewhere, this criteria also erases those "high functioning" autisics who do not need support.
 
I'm one of the "high-functioning" Aspies Datura mentions who is ruled out by current criteria. I don't even rate a Level 1, after decades of hard-won adaptation, and was very lucky my psychiatrist took everything into account when making her determination. She still couldn't fudge me into the new criteria on paper, though. I was given a 299.80 Asperger's Disorder diagnosis from the DSM-IV, over a year after the new edition was released. I'm still very Aspie in so many ways, but not very Aspie at all in the ways the DSM-V requires for the consolidated dx. Thirty years ago? I was a solid Level 2 -- but nobody thought about Asperger's then.

Sadly, functionality will always be the main criteria for categorization for as long as autism stays within the purview of medicine and psychiatry. People only tend to seek diagnosis, treatment and accommodation when they are experiencing problems of living from a condition. Lumping us with in a diagnostic framework with mental illnesses makes no allowance for those of us who function well but simply want answers about ourselves, and perhaps a group of others to identify with.

From old threads I've read, there have been members right here on AC (none that I know of anymore) who would doubt my place on the spectrum for their slavish adherence to the medical POV.
 
I wonder if ambiguity is exactly what they were going for in the new definition in the DSM update. (Ah, I love the "strange bedfellows" in the meaning of that sentence.) What bugs me is that they don't mention looking at one's childhood... I know for certain that my level of functionality has greatly improved over the last few years, possibly even to the point where I could "test out of" an official evaluation. Even when I am questioning myself as to whether or not I might actually be on the spectrum, I think back on my early years and am like, "Duh!" I haven't gone for a re-evaluation since the DSM-V came out... I was diagnosed as a teenager, which probably gives a plenty good enough impression of where one stands on the spectrum! (as anyone who has gone through puberty and adolescence knows, heh.)
 
I wonder if ambiguity is exactly what they were going for in the new definition in the DSM update. (Ah, I love the "strange bedfellows" in the meaning of that sentence.)


It's interesting -- you've mentioned this before, but the new consolidated criteria seem less ambiguous to me, leaving less room for professional judgment, not more. According to Susan Swedo, head of the DSM-V Neurodevelopmental Work Group, that was the whole point of the change.

You're an insightful person, though. What is it about the new criteria that you find more ambiguous?

What bugs me is that they don't mention looking at one's childhood...


From my own research on the process behind the new ASD diagnosis, this comes down to the politics that entered what should have been a purely scientific determination. Thanks to certain infamous special interest groups and the U.S. Department of Health and Human Services, the new criteria assume that all candidates for dx are children.
 
It's interesting -- you've mentioned this before, but the new consolidated criteria seem less ambiguous to me, leaving less room for professional judgment, not more. According to Susan Swedo, head of the DSM-V Neurodevelopmental Work Group, that was the whole point of the change.

You're an insightful person, though. What is it about the new criteria that you find more ambiguous?




From my own research on the process behind the new ASD diagnosis, this comes down to the politics that entered what should have been a purely scientific determination. Thanks to certain infamous special interest groups and the U.S. Department of Health and Human Services, the new criteria assumes that all candidates for dx are children.
I couldn't say for certain, or be able to concretely defend my position here... This is merely what I remember comparing the DSM-IV vs. the DSM-5 criteria. Maybe I should take another look at it.
 
I wonder if ambiguity is exactly what they were going for in the new definition in the DSM update.


If one's political influence could reach all the way to the DSM-V, I'd think it would be in their best interest to accomplish that. Where cost containment becomes paramount in a massive government-subsidized healthcare program.

The cold reality: It's easier to deny care to someone over neurology than oncology. And equally easier to justify it to taxpayers.
 
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I couldn't say for certain, or be able to concretely defend my position here... This is merely what I remember comparing the DSM-IV vs. the DSM-5 criteria. Maybe I should take another look at it.


I'm not trying to be argumentative. I'd be interested to hear what you think after making the comparison.

Using my own case as an example, like I said, my doc had to revert to the old manual to squeak me through.

You're lucky you were diagnosed young and aren't in a position (that I know of) to need reassessment. My doc said a colleague of hers has booted a few long-time diagnosees off his client list over the past year after state-required annual re-evals. I could suffer the same fate if (a) my doctor left her practice, and/or (b) I wasn't leaving the States before I hit the one-year mark. Not that I need the dx for any practical reason. It's all psychological for me, but I consider it important. I'll be relieved to be in a country that uses the ICD.

If one's political influence could reach all the way to the DSM-V, I'd think it would be in their best interest to accomplish that. Where cost containment becomes paramount in a massive government-subsidized healthcare program.


It sure makes getting services and accommodations much harder for adults who weren't identified earlier.

It's my fear of this happening with the ICD that got me involved in giving WHO feedback as a lay contributor to their own neurodevelopmental work group for the next revision (2017), campaigning to keep Asperger's separated out. Talk about countries with massive government-subsidized healthcare programs -- look at Europe! And with governments in the Eurozone becoming more and more conservative....
 
While it doesn't affect me, I see what was done as a way to remove some from their disabled status. Now to even be a level 1, you must be incapable of living independently. That means anyone that can live alone, even if they can't hold down a job does not have to be given assistance unless the qualify for other reasons.

I have difficulty switching tasks and, I'm a terrible organizer - I'm a slob basically but I don't need and never have has "support" as they call it. I manage my own finances, quite well in fact, I maintain my home and property, I plan for the future, plan meals for the week, plan vacations, plan my work, plan my garden. I guess I'm not even on that scale since I can do what they clame even a level 1 can't do.

Oh well, I never got a formal diagnosis and, I don't need one. No one ever said doctors of any kind know it all and are always right anyway and, in my experience, they are more often wrong. I won't see any medical professional except my optometrist and dentist ever again due to bad experiences with medical and psychological doctors. Wouldn't see my dentist either except I have bad teeth and will be getting dental implants soon. (I can't handle the thought of loose dentures so, I need to get implants.) I do want to continue being able to eat something besides pureed mush LOL.
 
I was originally self-diagnosed and was given my status based on my entire lifetime,not just the present state of my affairs. I never required support,so it isn't an issue at all if I can't receive support,and the point is moot to me.No,it really isn't fair to those who may require support and can't get it,so I will continue to view it as another failure.They will suffer the most in my honest opinion. I think the point has already been mentioned that it is money driven and not about actual mental health care. Once again,it is about the level of pity for the really challenged individuals with little care about the one's they only consider to have minor problems.We have a lot of members here who are impaired with issues that may be outside of the classification as it stands. Being outside of a requirement doesn't make anything go away except the expense of proper support where it may still be needed.
I think the ones who decided where people should be placed should have to live with what they consider minor impairments for at least a day and rethink how the classifications should be listed. I would bet the farm there would be major changes in a hurry ;)
 
I'm not even on the list with those levels. :confused:
Perhaps as a teen when the majority of my symptoms hit me like a brick and I suddenly had to learn how to manage them, but now?

Level 1: "Requiring support”
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others.
Hmmm, maybe. I am shy and socially anxious, but I've developed a great mask when I need it.

May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.
My to-and-fro is fine. I can make friends easily. I just generally find people boring since all they want to talk about is sports or fashion! Talk about people of limited interests...

Inflexibility of behavior causes significant interference with functioning in one or more contexts.
The only time I'm accused of inflexibility is when the other person is being a self-centered prick. I'm told I'm too nice in a lot of situations.

Difficulty switching between activities.
Yes! Once I get focused in, I get confused when I have to break my train of thought.

Problems of organization and planning hamper independence.
OCD is one of my comorbids, I am the person people go to at work, school (when I went), and home to get things organized! Hell, my in-laws got really nasty because of my planning and professionalism. OCD was obviously not considered when somebody wrote this. Why are these apparent masters of open-minded thinking doing worse than us horribly close-minded autistic people? What part of "autism spectrum disorder" do these people not understand?

Yup. Definitely gonna say ta heck with getting an autism diagnosis. I'm better off just focusing on the SPD since that's the only thing that gives me grief, and it wouldn't give me grief that much if doctors, hygienists, and other medical people weren't such buttholes about my tactile defensiveness and hypersensitivity to chemicals. (And if people weren't so obsessed with phones, I hate disembodied verbal communication with strangers.) My other comorbids greatly enhance my life, and even SPD is valuable to me. I'd probably make a shrink's head explode if I wasn't purely "suffering" from my "curses".
 
I agree Nitro. I know a few who are on the spectrum but will never reveal that to anyone outside their inner circle. All have moved far away form the towns they were diagnosed in and, are doing their best to make it on their own. Like all of us, they have learned to play their par in this grand performance we call life. It's harder for all of us than it is for the majority, the script isn't given to us at birth like it is given to NTs. We only get the summary and have to guess at the body of the script.

Society then looks down on and/or punishes us for not knowing the script. We avoid society, and thy think us even less adept for our effort not to cause problems for them. That in turn causes more problems for us since, isolated we have no way of learning any more of the script we are missing.

Once again I am so glad I did not know when I was younger. I would have withdrawn, accepted being weird, in a bad way, and given up the life I could have had without ever knowing that life was even possible for me. I didn't know so, I went after making a life using my biggest passion and, I was blessed to be successful in that life, successful beyond anything I imagined before I found my way into that life.

That is an opportunity so many of us are either denied by society or, deny ourselves because somebody said we couldn't do that (whatever that may be) just because we aren't "normal."

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. I'm so glad I didn't know and stepped out there and demanded I be accepted and valued. Yes I had to learn to play the game, so to speak, but doesn't everyone to some degree? I play the game well but, had I know I wasn't supposed to be able to play the game, I doubt I would have put so much effort into learning to play the game.

I wish we didn't have to be anything except who and what we are to make it in this world, but that isn't realistic and, we all know that if we relax and just be ourselves, we don't fair so well. Now they have come up with a way to force those that can't learn to play the game to scrape by on whatever scraps society might offer. Not everyone, even at my level of functioning, can learn the game so well. I know not everyone could handle countless meltdowns, endless hours of frustration day in and day out, and the physical and metal stress I put myself through to succeed.

I can teach anyone what I did, how to do what I did but, I can't give anyone fortitude, will power, perseverance or the ability to maintain a positive, upbeat attitude even when everything is in chaos and crumbling around them. I can't teach anyone how not to be prone to depression or anxiety or, how to keep going when you have to spend every day pushing another meltdown out of your mind, and go on and be happy about it all. Those things I can't teach, they come form withing and, are a part of who you are, you either can or cannot do it. I can tell you what to do in those areas but, I can't give you the strength to actually do it.
 
I'm not even on the list with those levels. :confused:
Perhaps as a teen when the majority of my symptoms hit me like a brick and I suddenly had to learn how to manage them, but now?

Level 1: "Requiring support”
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others.
Hmmm, maybe. I am shy and socially anxious, but I've developed a great mask when I need it.

May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.
My to-and-fro is fine. I can make friends easily. I just generally find people boring since all they want to talk about is sports or fashion! Talk about people of limited interests...

Inflexibility of behavior causes significant interference with functioning in one or more contexts.
The only time I'm accused of inflexibility is when the other person is being a self-centered prick. I'm told I'm too nice in a lot of situations.

Difficulty switching between activities.
Yes! Once I get focused in, I get confused when I have to break my train of thought.

Problems of organization and planning hamper independence.
OCD is one of my comorbids, I am the person people go to at work, school (when I went), and home to get things organized! Hell, my in-laws got really nasty because of my planning and professionalism. OCD was obviously not considered when somebody wrote this. Why are these apparent masters of open-minded thinking doing worse than us horribly close-minded autistic people? What part of "autism spectrum disorder" do these people not understand?

Yup. Definitely gonna say ta heck with getting an autism diagnosis. I'm better off just focusing on the SPD since that's the only thing that gives me grief, and it wouldn't give me grief that much if doctors, hygienists, and other medical people weren't such buttholes about my tactile defensiveness and hypersensitivity to chemicals. (And if people weren't so obsessed with phones, I hate disembodied verbal communication with strangers.) My other comorbids greatly enhance my life, and even SPD is valuable to me. I'd probably make a shrink's head explode if I wasn't purely "suffering" from my "curses".
I have to admit that I am very inflexible when on an extreme focus...that is part of what makes me good at what I do
 
I agree Nitro. I know a few who are on the spectrum but will never reveal that to anyone outside their inner circle. All have moved far away form the towns they were diagnosed in and, are doing their best to make it on their own. Like all of us, they have learned to play their par in this grand performance we call life. It's harder for all of us than it is for the majority, the script isn't given to us at birth like it is given to NTs. We only get the summary and have to guess at the body of the script.

Society then looks down on and/or punishes us for not knowing the script. We avoid society, and thy think us even less adept for our effort not to cause problems for them. That in turn causes more problems for us since, isolated we have no way of learning any more of the script we are missing.

Once again I am so glad I did not know when I was younger. I would have withdrawn, accepted being weird, in a bad way, and given up the life I could have had without ever knowing that life was even possible for me. I didn't know so, I went after making a life using my biggest passion and, I was blessed to be successful in that life, successful beyond anything I imagined before I found my way into that life.

That is an opportunity so many of us are either denied by society or, deny ourselves because somebody said we couldn't do that (whatever that may be) just because we aren't "normal."

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. I'm so glad I didn't know and stepped out there and demanded I be accepted and valued. Yes I had to learn to play the game, so to speak, but doesn't everyone to some degree? I play the game well but, had I know I wasn't supposed to be able to play the game, I doubt I would have put so much effort into learning to play the game.

I wish we didn't have to be anything except who and what we are to make it in this world, but that isn't realistic and, we all know that if we relax and just be ourselves, we don't fair so well. Now they have come up with a way to force those that can't learn to play the game to scrape by on whatever scraps society might offer. Not everyone, even at my level of functioning, can learn the game so well. I know not everyone could handle countless meltdowns, endless hours of frustration day in and day out, and the physical and metal stress I put myself through to succeed.

I can teach anyone what I did, how to do what I did but, I can't give anyone fortitude, will power, perseverance or the ability to maintain a positive, upbeat attitude even when everything is in chaos and crumbling around them. I can't teach anyone how not to be prone to depression or anxiety or, how to keep going when you have to spend every day pushing another meltdown out of your mind, and go on and be happy about it all. Those things I can't teach, they come form withing and, are a part of who you are, you either can or cannot do it. I can tell you what to do in those areas but, I can't give you the strength to actually do it.
Agreed on all points. Your last paragraph rings true. Not everyone has the ability to draw from within to overcome their challenges. That is something that can't be given and also shows exactly how diverse the spectrum really is.
Cure me? No thanks,I like the way I am
Help those who are profoundly impaired? For sure,they could be diamonds in the rough as we once were ;)
 
Nitro, I have said for year, when someone calls me weird, odd, crazy, etc.. "That's okay, I like me anyway." :)

I know a few of those diamonds in the rough of yours that were fortunate enough to have the strength to get cut and polished and, they are all amazing people, all very successful too and, every one of them has gained the jealousy and envy of many NTs.

I am not an elitist and don't mean to sound like one but, when those of us on the spectrum are able to reach our full potential, we are better than NTs in the same positions. I've seen it several times. We either fail miserably or succeed beyond the ability to succeed of most NTs. We don't just perceive life in absolutes, we live it that way and, if we can do that in a field we excel in, we are the absolute successes everyone wishes they could be.
 
It is far too narrow in its criteria.

Just because someone can string a sentence together does not necessarily mean they are able to live an independant life free from challenges. It puts communication, repetitive behaviours and social behaviour as the yardstick of whether one is effected; where in reality, sensory issues and executive functioning issues play a major part for many on the spectrum.
Some can achieve marvellous things if given just a little bit of help or accommodation, but without it are left floundering.
It could be the difference between holding a full time job, paying a mortgage, feeding, clothing and being independant; struggling to find and maintain employment; or living on the streets .
There are also many who would not be given any diagnosis at all by these criteria, because through a lot of physical and mental effort, they have been able to pass as NT just enough to get by. But what happens when they get to the stage or age where they can't do that anymore?
 
It's my fear of this happening with the ICD that got me involved in giving WHO feedback as a lay contributor to their own neurodevelopmental work group for the next revision (2017), campaigning to keep Asperger's separated out. Talk about countries with massive government-subsidized healthcare programs -- look at Europe! And with governments in the Eurozone becoming more and more conservative....


It's a fiscal dynamic that applies across the pond as well. That government may be tailoring diagnostics not to accomodate medical science, but rather to accommodate a fixed budget and all the politics that go with it. Compounded by a dissatisfied electorate who sees regime change as a solution, even though the actual budget problems still exist.

A vicious cycle that can only be broken with improved prosperity to support more revenue.
 
I agree Nitro. I know a few who are on the spectrum but will never reveal that to anyone outside their inner circle. All have moved far away form the towns they were diagnosed in and, are doing their best to make it on their own. Like all of us, they have learned to play their par in this grand performance we call life. It's harder for all of us than it is for the majority, the script isn't given to us at birth like it is given to NTs. We only get the summary and have to guess at the body of the script.

Society then looks down on and/or punishes us for not knowing the script. We avoid society, and thy think us even less adept for our effort not to cause problems for them. That in turn causes more problems for us since, isolated we have no way of learning any more of the script we are missing.

Once again I am so glad I did not know when I was younger. I would have withdrawn, accepted being weird, in a bad way, and given up the life I could have had without ever knowing that life was even possible for me. I didn't know so, I went after making a life using my biggest passion and, I was blessed to be successful in that life, successful beyond anything I imagined before I found my way into that life.

That is an opportunity so many of us are either denied by society or, deny ourselves because somebody said we couldn't do that (whatever that may be) just because we aren't "normal."

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. I'm so glad I didn't know and stepped out there and demanded I be accepted and valued. Yes I had to learn to play the game, so to speak, but doesn't everyone to some degree? I play the game well but, had I know I wasn't supposed to be able to play the game, I doubt I would have put so much effort into learning to play the game.

I wish we didn't have to be anything except who and what we are to make it in this world, but that isn't realistic and, we all know that if we relax and just be ourselves, we don't fair so well. Now they have come up with a way to force those that can't learn to play the game to scrape by on whatever scraps society might offer. Not everyone, even at my level of functioning, can learn the game so well. I know not everyone could handle countless meltdowns, endless hours of frustration day in and day out, and the physical and metal stress I put myself through to succeed.

I can teach anyone what I did, how to do what I did but, I can't give anyone fortitude, will power, perseverance or the ability to maintain a positive, upbeat attitude even when everything is in chaos and crumbling around them. I can't teach anyone how not to be prone to depression or anxiety or, how to keep going when you have to spend every day pushing another meltdown out of your mind, and go on and be happy about it all. Those things I can't teach, they come form withing and, are a part of who you are, you either can or cannot do it. I can tell you what to do in those areas but, I can't give you the strength to actually do it.

Beverly, I am the kid that 60 years ago, had the child welfare shrink shaking her head. The kid that withdrew and refrained from social integration. Books were friends, mentors and virtually, my experiences. Any human touch was at best unwelcome and/ or painful.
The social script you mention is a game of prevarication, delusion, manipulation and deception. No sane person can see that form of social interaction as anything more than competitive drama.
It is just so easy to beat the weak down, little old witches, stunted children and the socially disabled. As far as I am concerned, most of those well adapted to the social herd are also well adapted to bowing, beheading and doing what is expedient under any given circumstances.
All social norms change, memes change, entire cultures change but the human condition has not really changed much in 6000years including the proportions of leaders and followers, or wealth distribution.
Consider social order, controls, holidays, prisons, hierarchies, patriarchies, warfare, pomp, ceremony and uniforms and vestments, to name a few.
If one can not play the game that others play well, create your own game and see if anyone wants to play your game. There is a chance that a new game is just what some folks are looking for.
My life turned around the day I decided to turn my life around. A simple exercise of will and tenacity, overcame inertia, increased the momentum and in time led to peace and comfort. The day I realized who I was and what I had to do, and rejected the role of victim was the day I self actualized.
I don't know if willpower is the answer for many others, but it can be an answer for some. The honest self analysis is the hardest thing. The gathering the courage to take the first step is also daunting. The expectation to fail is also stressful, so do what you love. Love is a low stress activity. Build on the successes, reinvest with your supporters. Reward kindness with kindness. I may sound like blather but it does no harm and perhaps some good.
I bet on me at every roll and left society shaking it's head. You see, in general society never understood me, but I knew society very well, the weakness and the foibles of the self righteous blowhards and pretenders.
I commend your sound advice, and hope that you remain strong and continue to promote dignity and self respect.
The force is strong in this one!
Those that need support must get some support. Those that are strong can encourage.
 
I have to admit that I am very inflexible when on an extreme focus...that is part of what makes me good at what I do
And yet, people think that's a bad thing. If they want a job well done, don't they realize it must take a vast amount of resources or quality resources to do it? If a person is only partially paying attention to their work, they're prone to mistakes.
 

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