What Do You Think Of The Autism Severity Scale?

[Slithytoves]

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 had to smile at your comment about disliking the term "clients". As you probably know, that term came into vogue as an alternative to "patients", but it doesn't sit much better with a lot of helping professionals and consumers of services alike. There's another word, "consumers". That one is becoming popular in the hospital industry, according to my housemate whose field is Health Care Administration. I find that one even more offensive.

So what would you personally prefer to call people-who-seek-and-receive-mental-health-services? I'm stumped, myself.

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.

Oh. My. God. I have heard that answer so many times! Yes, make people feel more a part of the community by removing access to therapeutic supports to functioning. Logical.

I then said how the prevention of institutionalisation was insane, how do you prevent people already heavily institutionalised from institutionalisation?

No pun intended? This is an excellent point, and one that legislators loved to sidestep when I was doing advocacy work with NAMI after an inpatient facility here closed its doors. There wasn't much room in local group homes, so many people were just "cured" via the miracle of bureaucracy and deemed suitable for life on their own. It was infuriating. Those left to their own devices weren't given as much as occupational therapy; just an overloaded case manager with no options to offer but outpatient "talk therapy" referral that hadn't worked for them before institutionalization. Many are now homeless, so now of course our politicians are explaining away the spike in our homeless problem.

 

[qwerty]

when I was doing advocacy work with NAMI after an inpatient facility here closed its doors. There wasn't much room in local group homes, so many people were just "cured" via the miracle of bureaucracy and deemed suitable for life on their own. It was infuriating. Those left to their own devices weren't given as much as occupational therapy; just an overloaded case manager with no options to offer but outpatient therapy referral that hadn't worked for them before institutionalization. Many are now homeless, so now of course our politicians are explaining away the spike in our homeless problem.

Yay i finally worked out how to do the quote thingy properly.

This is so true and infuriating, I laughed when you mentioned how bureaucracy is a miracle cure lol
This makes me sick to my stomach with how spot on you are. The way our government is robbing health sector allocated funding is just vulgar and disgusting but they go kiss a few babies, crack a joke and people eat up all their ******** like it was chocolate. I had better stop there before i get rolling on a rant

So what would you personally prefer to call people-who-seek-and-receive-mental-health-services? I'm stumped, myself.

I tended to call them by their names, and collectively as the people in our care.

It is great to see an intelligent passionate and ethical person like you fighting the good fight

 

[Slithytoves]

Yay i finally worked out how to do the quote thingy properly.

Win for Qwerty!

I tended to call them by their names, and collectively as the people in our care.

I like that, "The people in our care." It puts the helping professional right next to the person, rather than suggesting an "us/them" separation. Another win for Qwerty!

Thanks, by the way. I can't claim anything for my efforts. My interest in justice, etc. is built into my personality, so I have to either feed the beast or sit home and stew on social problems till I explode. For the success rate of activism/advocacy, sometimes I wish I was a stereotypical Aspie math or science nerd.

 

[Tom]

I like to keep it simple and understandable. So how about just Medics and Sickies ?

 

[artfull dodger]

I am not show how I would place if assessed again under the DSM-V. There are times where I am squarely ASD-1, almost boarderline 2, but other times I am barely a 1 if at all. But with the total lack of any real help for adults on the spectrum in the USA, I am not sure it matters a whole bunch. Thankfully I am able to work a little, but its not enough to support myself on my own. I am trying to get under the state assistance heath care plan here in Indiana, but to do so had to also file for partial disablity/SSI. Granted we could use the help with food and bills. I have Asthma and havent been able to afford my medicine for several years due to lack of income. Same with any other basic healthcare. They seem to think that after Aspie/Autie kids grow up it magicly goes away. A proper support system is sorely needed here in the states. But it all comes down to the all mighty doller and that support costs a boat load of it.

 

[Progster]

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.

Oh, I see. Thank you for clarifying. I assume that this is the same thread that Nitro refers to. Somehow I missed this thread and its discussion. Yes, I've heard it claimed by some that AS is actually a collection of conditions concurring to produce a separate condition, each one of which could also be a separate diagnosis in itself: SPD, OCD, ADHD, Dyspraxia, etc. The majority of people with AS do indeed have elements of these comorbid conditions, even if they are not diagnosed with these as a separate condition. But unlike depression, anxiety and other conditions, one needs to have displayed symptoms throughout one's development to receive an AS diagnosis, and this is the crucial difference.

My major depressive episode came about as a result of losing one job, severe anxiety and due to my inability to adjust to a new job. Both of these events came about due to my AS traits, so I consider that my depressive episode was a direct result of having AS. The psychiatrist says in his report, "when people with Asperger's get depressed, their handicaps from each of the causative problems gets worse than the sum of the parts" so yes, I think that AS, depression and anxiety can feed each other in a negative feedback loop, and the psychiatrist was obviously aware of how one can affect the other.

Before these events, I had a long history of employment difficulties and failures, and before that I had been diagnosed with social phobia under the DSM III and was suspected of an eating disorder because of my rigid eating habits. I was also suspected of having autism as a child, but the GP rejected the idea because I was speaking and interacting too well, in his opinion.

 

[Slithytoves]

Oh, I see. Thank you for clarifying. I assume that this is the same thread that Nitro refers to. Somehow I missed this thread and its discussion.

No problem. I felt bad when I got the picture that you had really misunderstood me. I would never have said something so rude to you!

If I remember correctly, it was on royinpink's thread about OCD. One of many tangents that emerged. The gist if it was that Asperger's itself is a very real condition, but that a lot (not necessarily all) of the impairments people deal with that are attributed to Asperger's are exacerbations of Aspie traits/symptoms by comorbid symptoms of anxiety, depression, OCD, etc. rather than Asperger's itself. The bottom-line argument is that Asperger's is more of a basic human variation that a disorder.

Yes, I've heard it claimed by some that AS is actually a collection of conditions concurring to produce a separate condition,

But unlike depression, anxiety and other conditions, one needs to have displayed symptoms throughout one's development to receive an AS diagnosis, and this is the crucial difference.

Agreed completely with your conclusion. I can't buy the Asperger's-as-collection-of-other-conditions argument because emerging science contradicts that in too many ways. More and more it's looking like there is a distinct pattern of differing brain structure particular to Aspies, even different from other autism. I'm hoping the folding of Asperger's into the more generalized ASD dx won't discourage further exploration along this line. So far, it seems many researchers aren't sold on the DSM change. Cornell University and Cambridge's Autism Research Centre (for just two examples), still seem to be treating Asperger's as its own unique entity.

My major depressive episode came about as a result of losing one job, severe anxiety and due to my inability to adjust to a new job. Both of these events came about due to my AS traits, so I consider that my depressive episode was a direct result of having AS. The psychiatrist says in his report, "when people with Asperger's get depressed, their handicaps from each of the causative problems gets worse than the sum of the parts" so yes, I think that AS, depression and anxiety can feed each other in a negative feedback loop, and the psychiatrist was obviously aware of how one can affect the other.

I see. It's been a bit of a vicious cycle for me, as well. My two major depressive episodes were triggered by circumstances caused by my AS. AS causes a problem > Depression triggers > Depression aggravates AS > AS causes a problem.... There is definitely a relationship there, even as my AS is a distinct condition. Did I not respond to crises caused by AS with a depressive crash, I might be more effective in working through the functional problems my AS instigates. My personal history has demonstrated that when I can avoid a depressive episode, I am often able to self-teach successful adaptations for problematic Aspie behaviors/responses. That's why I am able to at least partly agree that AS on its own isn't all that bad, at least in my case. It's just hard for me to keep from tripping the depression/anxiety wire.

I was also suspected of having autism as a child, but the GP rejected the idea because I was speaking and interacting too well, in his opinion.

That must have been frustrating for your parents. My mother took me to a small handful of psychologists between the ages of 8 and 11, claiming a laundry list of very Aspie traits and symptoms, but I had been tested with a "highly gifted" IQ, so clinicians told her I was simply eccentric secondary to high intelligence. Not very good work, but this was back in the late 70s/early 80s, before many doctors knew much about autism spectrum disorders. I was glad to relieve my mother of decades of ambivalence upon my diagnosis. She really was vindicated. She'd come to feel pretty bad for thinking there was "something else" going on with me all that time.

 

[Progster]

Agreed completely with your conclusion. I can't buy the Asperger's-as-collection-of-other-conditions argument because emerging science contradicts that in too many ways. More and more it's looking like there is a distinct pattern of differing brain structure particular to Aspies, even different from other autism. I'm hoping the folding of Asperger's into the more generalized ASD dx won't discourage further exploration along this line. So far, it seems many researchers aren't sold on the DSM change. Cornell University and Cambridge's Autism Research Centre (for just two examples), still seem to be treating Asperger's as its own unique entity.


That must have been frustrating for your parents. My mother took me to a small handful of psychologists between the ages of 8 and 11, claiming a laundry list of very Aspie traits and symptoms, but I had been tested with a "highly gifted" IQ, so clinicians told her I was simply eccentric secondary to high intelligence. Not very good work, but this was back in the late 70s/early 80s, before many doctors knew much about autism spectrum disorders. I was glad to relieve my mother of decades of ambivalence upon my diagnosis. She really was vindicated. She'd come to feel pretty bad for thinking there was "something else" going on with me all that time.

I agree with what you are saying about people with Asperger's having a different brain structure. That is an area which needs to be explored. I may be wrong, but seems to me that more research effort goes into examining behaviours than looking at the neurological differences in the brain structure. I think that this area of research may yield a few more answers.

My parents were actually horrified at the idea that I may have autism and wouldn't accept it, because at the time (early 80s), not much was known about autism and Asperger's didn't exist as a diagnosis. Autism implied a lack of intelligence, and my parents insisted that I couldn't possibly have it because I was considered to be intelligent.

 

[Nitro]

I am not going to debate that spectrum disorders do not make comorbids seem worse than they are,it is quite possible.
I personally have been involved with lazy clinical people who did not further their education at all and settled into their practice with the title they received with their diploma.
A friend of mine has a grandchild here in the USA who was diagnosed with Asperger's back in February. He receives full services as a result of his diagnosis.so apparently some aspies are still recognized by my state.
When they can get the entire psych world on the same page,possibly more will quit taking stock in the DSM behavior patterns based thinking and focus more on providing care.
I was witness to the many mistakes that were made during my TBI recovery by sloppy professionalism. One kind gentleman prescribed a pain medication to me to avoid giving me vicodin. It was prescribed outside of the area it was intended for and was clearly marked in the writeup on it that it should never be prescribed to a person with a brain injury as it had a potential of being lethal to them. He could have killed me if I had not read about them myself.
The nerve specialist that told me my left arm would never be used again started his next sentence with "I had a horse jockey the had a similar incident to your trauma,we ended cutting his arm off" If we ever cross paths again,I think he will get a left cross punch from my inoperative arm because he will not see it coming.
I am only trying to point out that I have had horrible experiences with some of the brain and injury world,that was peppered with slight amounts of brilliance from people who were on the forefront of their education and practice.
Yeah, a lot more is known about autism now, but are ALL the brain pros up to speed on it?
I am going to have to say no

 

[clg114]

I am not going to debate that spectrum disorders do not make comorbids seem worse than they are,it is quite possible.
I personally have been involved with lazy clinical people who did not further their education at all and settled into their practice with the title they received with their diploma.
A friend of mine has a grandchild here in the USA who was diagnosed with Asperger's back in February. He receives full services as a result of his diagnosis.so apparently some aspies are still recognized by my state.
When they can get the entire psych world on the same page,possibly more will quit taking stock in the DSM behavior patterns based thinking and focus more on providing care.
I was witness to the many mistakes that were made during my TBI recovery by sloppy professionalism. One kind gentleman prescribed a pain medication to me to avoid giving me vicodin. It was prescribed outside of the area it was intended for and was clearly marked in the writeup on it that it should never be prescribed to a person with a brain injury as it had a potential of being lethal to them. He could have killed me if I had not read about them myself.
The nerve specialist that told me my left arm would never be used again started his next sentence with "I had a horse jockey the had a similar incident to your trauma,we ended cutting his arm off" If we ever cross paths again,I think he will get a left cross punch from my inoperative arm because he will not see it coming.
I am only trying to point out that I have had horrible experiences with some of the brain and injury world,that was peppered with slight amounts of brilliance from people who were on the forefront of their education and practice.
Yeah, a lot more is known about autism now, but are ALL the brain pros up to speed on it?
I am going to have to say no

I agree. No one should feel bad about shopping around to find the right medical professional for long term care. They are not all the same. I've already been through three cardiologists.

 

[On the Inside]

Hadn't returned to this thread to see how others regarded the OP's question. Interesting. I guess I'm surprised I was the only one who looked upon the newly defined severity levels at all positively. No matter, I neither seek special services nor treatment as my life is now, just information, understanding and clarity. Unless I were to try to complete my oft attempted, never completed college degree, I don't see where I would need assistance or special consideration, in spite of being diagnosed level 1. But then, I have carved out a little niche for myself where I can hide out with other creative oddballs, even hide out a little from them, and still make a living. Unless that changes, all's well.

And to correct an erroneous statement in an earlier post, one doesn't need to be incapable of independent living to be diagnosed level 1.

 

[rache86]

I'm definitely a level 1

 

[Structrix]

I would be considered level 1.

 

[Jono]

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.

The criteria listed in Level 1 above does not specify that you have to be incapable of living independently. It just states that problems with organisation and planning may hamper it (emphasis on may) as one of the possible criteria. Also, if the problems affect whether you can hold down a job, then that surely counts as problems with independent living.

 

[Ericho]

I think Level 1 is a bit too extreme. Of course, maybe I'm just vaguely on the spectrum.

 

[Alex Dame]

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.

Personally, I like to think I'm level 1 most of the time. I've taken a number of college courses without even mentioning to the teacher I had Aspbergers, and I can generally carry on a to-and-fro conversation even if I know little or nothing about the subject. A sudden change in focus often annoys me, but I wouldn't call it distress exactly. I have my stuff lying around a lot, but I'm fairly good at categorizing information, and as for planning, I can come up with convoluted gaming strategies, writing plots, and plan a day according to time constraints. I would say my biggest problem as far as independence is something between living with my mom for over 30 years and never having learned how to drive. On the other hand, this is all assuming I can stay cool and keep everything in perspective, and the more stressed out I get (or the more I "overthink" things), or the more hopeless I feel, the more likely I am to get in trouble with someone. Not only that, but learning in general is harder for me than for a lot of people. Also, I have narrow interests in comparison to some of the people I know best, including my family. I don't consider that a wholly bad thing, as it makes me a lot smarter than them on the subject.

 

[wanderer03]

It's a very weak way of lumping everyone into a category. They don't call it Autism Spectrum Disorder for the hell of it - it's a spectrum of symptoms. Sounds like a moron came up with a system of levels. How about I come up with levels of stupidity? He's a level 3!

 

[XAND]

Repeated attempts at acquiring a diagnosis have been soul-crushing on my end (like Slithytoves said earlier in the thread, I consider it important) and that was prior to the DSM-5 publication. I easily meet the criteria for Level 1 severity, but clearly there is no hope for a diagnosis at this point.

With my earlier attempts, the doctors each seemed to settle on their favorite disorders that they probably wrote their theses on way back in Doctor School. Named were OCD, OCPD, Major Depression, Anxiety, and Social Phobia. I exceed the criteria for each of those, and a handful of others. But no one I spoke with on a professional level seems to understand the concept of comorbidity!

Eight or so very specific disorders interweave in a complex relationship with my base ASD, as if autism is the trunk of the tree, and the others are branches. It is an intricate but sensible neurological profile. The personal tragedy is that I am the only one on earth that is invested in understanding it.

 

[XAND]

Also, speaking of branches and brain structures. As a visual artist and one incredibly fixated with symbolism, I was blown away by this research.

Something clicked inside me after reading that article, like what e.e. cummings once wrote:

now the eyes of my eyes are opened

Those images will resonate with me for as long as I live.

 

[Slithytoves]

Eight or so very specific disorders interweave in a complex relationship with my base ASD, as if autism is the trunk of the tree, and the others are branches. It is an intricate but sensible neurological profile. The personal tragedy is that I am the only one on earth that is invested in understanding it.

That's one of the major crimes of many doctor-patient relationships in mental health. We're used to loved ones getting frustrated, confused and weary of our complex constellations of issues. But doctors can do it, too, and that can be maddening. A client should never feel that they are too much work to bother with. My doctor is great -- she sees complicated cases as a challenge. It's why she chose intensive adult services as her specialty.

I love e.e. cummings, by the way. And man, do I love your avatar. That's one very striking image!