Define "moderate to borderline severe"
for autism spectrum symptoms, how might you describe it?
My mom told someone the other day that I seem to have more severe autism than my previous diagnosis of Asperger's. I have read some say the severity does not mean much by itself (and it varies so much).
KingdomOfRats wrote in another thread that symptoms also vary on a spectrum.
I am wondering subjectively where I am.
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Last edited by Lumi on 31 Jul 2013, 5:18 pm, edited 1 time in total.
btbnnyr
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I copy and modify this from my post in Define Mild thread:
Moderate to severe is moderate to severe severity of autistic traits, usually at behavioral level since those are what we know most about, but cognitive and neurological levels are being studied, and we will know more about those in future.
So in research, autism severity is measured by tests of past or current behaviors observed by others like on ados, adir, cars, srs, and other scales.
On internetz, I found cars, but it is only for children, but there is some idear of severity spectrum for various autistic traits: CARS
There is wunderbar ceiling fan spinning at top of cars webpage.
I didn't find a standardized test for adults online, but there are large ados handbooks in lab that I might look at when I have time.
I add in this post:
Each autistic trait varies in severity on its own spectrum, so autistic person can have mostly mild traits, mostly severe traits, combination of mild and severe traits, etc etc etc.
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In neuroscience studies on autism, researchers mostly measure autism severity, but there are other measures for effects of autism on person's life.
Other measures include:
1) adaptive functioning measured by test like vineland
2) adulthood outcome measured by whatever criteria the researchers define like whether the person lives in independently, has job, amount of education completed, whether the person has friends and romantic relationships
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I forgot another measure, which is severity level in DSM-5, which measures level of support needed by autistic person.
So there are many measures:
1) severity of core autistic traits
2) adaptive functioning
3) adulthood outcome
4) support required
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From your examples of adulthood outcome...I am unable to live independently so far, I am training for a part time job, I have a high school diploma, I don't know if I have friends, and never a romantic relationship.
What kind of support required?
Thank you for the detailed responses btbnnyr.
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Last edited by Lumi on 31 Jul 2013, 3:05 pm, edited 1 time in total.
btbnnyr
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Adaptive functioning and support required are probably most important things to focus on for eberryday life, so completing an adaptive behavior assessment might be useful, eggspecially to determine what supports you might need for your part time job in future.
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Well, it would be near the border between moderate and severe. For example, when it comes to MR, moderate MR is 50-35 and severe is 35-25, so 'moderate to borderline severe' for MR would mean an IQ around 35-40 or so.
However, severity terms for autism tend to be a lot less precise than for MR. Most researchers define mild or high functioning autism as an IQ over 70, but there are other definitions as well (in particular, the question of how to classify a person with an IQ over 70 and severe functional impairment is under some dispute). As for the difference between moderate and severe, there is much less agreement than that. Many people don't draw a distinction between the two, and those who do seem to draw the line very subjectively.
This may change soon. DSM-5 has proposed three classifications for severity of autism. If these catch on, it could result in greater consistency in what is meant by mild, moderate or severe autism.
DSM 5 severity levels for autism:
Level 3
‘Requiring very substantial support’
Social Communication
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.
Restricted Interests & repetitive behaviors
Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.
Level 2
‘Requiring substantial support’
Social Communication
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 response to social overtures from others.
Restricted Interests & repetitive behaviors
RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.
Level 1
‘Requiring support’
Social Communication
Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.
Restricted Interests & repetitive behaviors
Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.
I have Social Security Income, and recommended daily OT at home. That is a good idea, and my occupational therapist is helping to train me. She is the one who has the most information about my areas of need.
Need to find a way to pay for an assessment though.
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What kind of support required?
Thank you for the detailed responses btbnnyr.
hi lumi,
sorry for not responding yet,was on earlier but have been on a little detour for a rare trip to costa coffee with staff and the LD nurse of mine.
am personaly a bit uncomfortable at telling someone own POV on the severity they match from all the descriptions given here,purely because its not nice to possibly denie someones autism or suggest theyre more autistic than they are-as am not around to see what they go through,its respect for others more than anything though.
if are wanting to know own severity level so are moraly able to tell other people with truth;woud suggest asking a profesional who is involved with own situation,because the autism community has a wider view of how autism affects each severity than what profesionals do,its funny that we are seen in a very disabled and also negative way when we have rigid and limited thinking,yet when profesionals have rigid and limited thinking about the autism spectrum it is treated like theyre some form of high authority who knows better than everyone else.
the severities within the autism spectrum are spectrums themselves and no two of us within each severity and each functioning level are ever the same,within the residential centre am living in;all of us are famed for being significantly different to each other yet on the adult wing we are all low functioning and on the severe or profound spectrums...now have a think about how we are represented by such a limited set of characteristics.
those of us who are experienced in autism knowledge amongst the autistic and autism communities have a far better,broader take on autism than profesionals do because we can see it as it is and dont need a text book infront of us to understand the depths of how autism affects us all,we dont need no stupid set of stereotypes to represent a comparison yard stick.
if woud still like to have more opinions on this then am willing to give own on this as well,am just not wanting to disrespect anyones experiences.
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I would classify that as moderate.
In terms of adaptive functioning in adulthood, here are my subjective definitions of severity:
* mild - live independently, or with minimal support, able to hold down a job, may or may not have friends or romantic relationships (relationship functioning seems to be more related to who the person knows than how severe their autism is - if you are surrounded by intolerant people, even mild autism can pretty much preclude any positive social interactions)
* moderate - can't live independently (either never lived independently, or attempts at independent living turned out badly with outcomes likely to endanger health or safety), but is capable of working if given proper support, or at the very least helping out with chores at home
* severe - need significant support for activities of daily living, could only work in a sheltered workshop if at all, either can't do any chores or needs substantial prompting to do simple chores
I'd be moderate on this scale. Ironically, I'm mildly affected by pretty much any other measure, but my executive functioning is very poor and it's a significant impediment to adaptive functioning.
What are friends? The only person I talk to every day is my mom. I am fine not going out and doing things with other people. Early last year when I had a work evaluation for vocational rehabilitation, my mom was told I made no eye contact, it was difficult to get me to talk (I was not anxious, I did not like the stiffness feel of the place). When I needed to use the bathroom, I could only rock and make sounds. They had to guess. I did not know how to ask them, I was never in that kind of situation before.
I need reminders for things like taking care of myself.
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Last edited by Lumi on 31 Jul 2013, 5:28 pm, edited 1 time in total.
Lumi, this is from the Autism Discussion Page, author Bill Nelson:
The last post discussed the problem with labeling someone high vs. low functioning in regards to their diagnosis. The problem comes from the fact that a person can be high functioning (verbal, good academic skills, fair to good personal care), but have moderate to severe autism (rigid inflexible thinking, strong sensory issues, poor emotional regulation, delayed processing, and impaired ability to relate with others). Also, a person can be considered low functioning (poor verbal skills, limited academic skills, and minimal personal care skills) but only have mild autism (more flexibility, calmer emotionally, less sensory sensitivities, and more socially connected).
This appears contradictory at first, but when we look closer we see that these labels actually represent two different dimensions. The first, level of functioning dimension, represents the degree of cognitive functioning, or intellectual disability. The second dimension represents the severity of autism symptoms. You could look at these two dimensions as crisscrossing on perpendicular planes, with the dimension of intellectual abilities (high, moderate, low) running vertically and the dimension of autism symptoms (severe, moderate, and mild) running horizontally. The moderate levels of each dimension meeting at the intersection of the two dimensions. Consequently, you can have people who are very high functioning verbally and intellectually, and be moderately to severely impaired in autism symptoms. This can be confusing for many people who initially see the very bright, verbal child, and not initially see the severity of the autism. Or, assume that the nonverbal child is severely autistic. It is not that easy to diagnosis.
Making matters even more complicated, is the variable of verbal skills. Although verbal skills are highly correlated with intelligence, it isn’t always the case. Do not assume that the child who is nonverbal has poor intellectual abilities. There are some children who find it difficult to talk due to auditory processing and motor planning difficulties, not lack of cognitive skills. People often assume that the nonverbal child is severely impaired and place lower expectations on them. The same is also true for the child who is very verbal, but most speech is hidden in scripting and echolalia, and appears to have higher cognitive abilities then he actually may have. So, even for the two basic dimensions (intelligence and autism symptoms), the mixing in of verbal abilities can be deceiving.
The use of labels like high and low functioning, and severely and mildly impaired, are not diagnostic terms, but used more as descriptors when people try and categorize level of impairments. Hopefully the diagnostic criterion in the new DSM will be more descriptive and accurate. Until then, and probably for some time, people will be adding their own descriptive labels to the diagnoses.
But he does not mention executive dysfunction.
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English is not my native language, so I will very likely do mistakes in writing or understanding. My edits are due to corrections of mistakes, which I sometimes recognize just after submitting a text.
Level 3
‘Requiring very substantial support’
Social Communication
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.
Restricted Interests & repetitive behaviors
Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.
Level 2
‘Requiring substantial support’
Social Communication
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 response to social overtures from others.
Restricted Interests & repetitive behaviors
RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.]
For my ASD diagnosis, I still don't know what severity level I was given in each area. Social might be level 3 or 2. My RRB's interfere with most daily activities.
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