What Do You Think Of The Autism Severity Scale?

[XAND]

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!

I wish I had your doc. Giving up is hard.

Thanks for your kindness, and your perspective. I happen to love Jabberwocky, by the way.

 

[ChrisC1983]

i'm actually too busy "working" (dont get paid really) to see a psych enough for a true official diagnosis. but i'm currently on SSDI because i was just able to prove i had enough problems on my own through paperwork (can't talk outloud well enough) and one of the re-evaluation psychs couldn't officially diagnose me but he did describe everything, step by step, as to what
"should" have been done throughout my life which is what they would do for somebody with ASD. but they should have a 1-5 scale. not only because i prefer 2, 4, 5, 6, 8 and 10's of things (lol) but because it makes more sense to detail things a little better than 1-3

currently, i can fake a level 1 but it takes so much effort that any other mental or physical strenuous activity (ie: working.. even painting a floor or cashier work) is immensely exhausting and after a few days you can clearly see i'm becoming run down, within a week i'm just exhausted and angry.... currently i've been cleaning and painting a space we're moving into for almost a month and if i was to describe my anger level somebody may call the cops

but that aside.. i'd rate myself as a 1.3-1.6 on an "average" day where i could be myself, and a solid 2 on a more stressful day. i honestly haven't had a true "just be me" day since early elementary school age

 

[On the Inside]

I also had an incomplete diagnosis earlier on, and the therapist I was seeing at the time wouldn't budge from it, even though I continued to have ASD related problems and wasn't really benefiting from his care after nearly three years. But I just kept showing up to our visits, thinking that it was helping me.

Not that I doctor shopped until I found someone to validate my suspicions, but I did seek out a new therapist who had experience with ASD and was willing to dig deeper. He suggested Aspergers on our first visit. At this time I was assessed for ASD and diagnosed. While he did have experience with Aspergers patients, I felt he didn't really take it seriously, more that it was particular traits that could be addressed with behavior and attitude changes.

 

[Delbert]

I am HFA but able to function as a NT with a few quirks but also retained being a HFA.

Is tis rating system something for an 'autism expert' with NO actual experience as on the spectrum to categorize those on the spectrum according to their perceptions? It is B.S.!

Autism and HFA and what some NT doctor says and writes about does not define me and who I am... I define myself and also by me being an unique individual, define where I am on the spectrum...

According to these 'experts' I should of been institutionalized at the age of 3 1/2 as well as being on all sorts of medications to be 'normal' which 'normal' is actually 'abnormal', due to what is normal to your essence of a being is altered to something your not, thus is not normal nor true to self but the interpretation and the will of others..

Took decades to be able to function in a world of people with sub-standard intellect and predictable and malleable behavioral patterns, while maintaining who I am, and am an Autie... no drugs and no doctors and no therapist... I was my own psychologist, sociologist, behavioral analysis, ect...

i strongly disagree with these 'classifications' which come every decade or so...
what is normal is relative to the frame of reference, not written in stone... i look at what is taken as 'normal', and no thanks, ill be on the spectrum, quirks and all... i do not want what they have, means i loose abilities which comes being on the spectrum, and being dumbed down and being told how 'messed up' and 'dysfunctional' I am, and it is coming from 'normal' people who are even more 'dysfunctional' than they say and claim about me...

Non verbal until 4 1/2, reading at the age of 2, doing 6th grade mathematics, sciences and literature at the 1st grade level.. polymath... life long learner... because my communication was different, although my intellect was much advanced... they would of put me into a institution? looking at society and the social aspects, such as the kardashians are the pinnacle of ones goals in life, nah... the 'NT' have their crazy abnormal things... ill stick to being a trekkie, scifi geek, a writer of poetry, mathematics, persuit in engineering, medical, gardening and all sorts of things in the place of social communication status...


YOU have other people tell you who you are, you will loose who you are in the first place and the ability to adapt and thrive because you deny yourself in parts and limit yourself by other peoples limitations passively implied upon you. If I allowed this and didnt become aware of this at a young age... i would be a self loathing individual, never seeming to adapt to society.... which i dont really care much off anyways...

 

[smileeachday]

Far to narrow... I've met many who have it and they know they fit in the beyond criteria...

 

[zylon]

What bothers me about a severity scale for autism is: severity of what?
My condition is severe; my life is completely ruined. However, the match with autism is off. While autism is the only thing on the DSM which even vaguely describes my condition, my match with autism does not describe the severity of my condition. In other words, my condition is severe, my condition may be considered autistic, but I cannot be described as severely autistic.

 

[Lukas]

I am unsure about it... but it seems people are at least trying to gain a grip on it. I would probably be level 1.

 

[Aleree]

I think it's better than the casually thrown around high functioning / low functioning. Though it is also different from it: the levels only say one's degree of support needs, it says little of the extent of the autism itself.

I would've thought that I'm a level 1, but when I was diagnosed last March I was deemed level 2. I am fully verbal and often pass as just quiet or anxious, but still have substantial trouble with work, school, socializing, transportation, etc.

 

[Mira]

As a kid I fit the Level 1 definition perfectly. I was diagnosed right around high school and with the help of my wonderful doctors I have been able to learn how to function better. I wonder if that qualifies as "without supports in place...?" If I had never been diagnosed and helped I would still be a Level 1. It needs to be clearer on whether or not therapy leading to improved function counts as support.

 

[Maelstrom]

I have clear shutdown overload stuff (not often), but that scale seems a bit harsh, on it I'd be a .1 or .2 but it still doesn't mean I don't struggle in life. Being able to function well isn't the same as being able to fit in well in the social meat grinder in job situations. I find even tho I'm more talented on some things, (less on others), that often the chicken pecking gangs drive you from the work place. Few job places are able to stop this bullying they lose tons of really good workers to social bullying....it costs them tons of money$ in lost work and training.

 

[HermanHesse]

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

I don't know if that statement jives with 100 million people killed by communists. It's true that indifferent bureaucrats wouldn't do much good but I would doubt that they would actively adopt ant-human policies.

 

[Maelstrom]

"HermanHesse, post: 256820, member: 12644"]I don't know if that statement jives with 100 million people killed by communists. It's true that indifferent bureaucrats wouldn't do much good but I would doubt that they would actively adopt ant-human policies.

Well that all depends on whether you are counting all the communists as revolutionaries after they gained control of the government. Once they became the government they were government bureaucrats. And I'm guessing far more people were killed by government officials after the revolution was over. If I recall correctly one of Russia's most famous war heroes was executed by a angry government bureaucrat for saying chemical fertilizer was better than manure. And said bureaucrat was not going to have his feed Russia with cow poop program disrespected. Those bureaucrats were so successful with their buricratic farm programs 20 million Russians starved to death.

You should also note that the poor coal miners in Virginia collected money, bought enough food to fill 2 trucks, loaded it drove it all the way to New Orleans, and started feeding Katrina survivors before FEMA got their first truck out of the barn. And FEMA promptly blocked all the roads so hardly any more food or water got in for 2 weeks. People were dying of thirst on their roofs while the government paid mercinaries to block looters..very helpful.

They do the same thing out here, when the fires come, parade back and forth with M16s looking very official keeping you from saving your house from burning, or saving any of your stuff and animals....what good does it do to stop looting if you make sure the whole block burns to the ground?
Yes we get lots of help from the government out here, they help the bears, mountain lions and wolves eat our cows, our sheep and sometimes our people. They help close family logging, family farms, family ranches.
And they often help start fires when the first thunder rumbles, (yes a number of BLM arson convictions in my area). They also like to anounce everytime a fire starts that it may burn till Christmass...and they set up their little fire cities and let burn until a big wind storm comes through...can you guess what happens then. And if the local governor tries to send in people in to stop the fire they threaten them and order them out.

And now you know why we are mostly republicans out here...

 

[Judge]

I don't know if that statement jives with 100 million people killed by communists. It's true that indifferent bureaucrats wouldn't do much good but I would doubt that they would actively adopt ant-human policies.

I wasn't thinking about politically extreme societies of the past. Such societies cared little for the welfare of their own people.

No, I meant those existing ones in the present, relative to medical concerns and policy regarding neurology and psychiatry. Namely the US and Europe and how government and healthcare professionals interact with entities such as the DSM-V and ICD-11.

Ideologically void bureaucrats who only enforce rules and regulations verbatim. Those whose primary concerns usually don't stray beyond their paycheck and job security, in comparison to someone elected and politically motivated to aid society in general.

After all when negotiating for your own healthcare, it's inevitable that at some point in the process that you'll have to deal with a bureaucrat- and not any elected politician or civil administrator actually making policy. Those who are ultimately the ones who can either help you or hurt you.

 

[ChurchTheArtist]

While I haven't had the time to read all the pages of posts on this thread (it's not that I don't think they are important) I did want to just say something based on the title of the thread, if that's okay.

They didn't have this back when I was diagnosed that I know of but I can say that I would have been a level 3. I was diagnosed around 15 years ago as a child and I was very... difficult to deal with. I hate to say it but my inabilities and lack of function put my family through a great amount of pain and struggle for so long. I was well into the rank of "needs constant supervision" and the people of my hometown practically chased us all out because in their ignorance and intolerance, they wanted to take me away and lock me up as a small child.

However, these ranks given in the OP were something I figured out for myself on the subject of survival. I meditated a lot for a small child and I figured out that my and the average human's base instinct was survival. Since middle school I set out to work on this.

I will say that my attitude towards my disability has been viewed with negativity, hostility and extreme hate from other autism sites. If my views offend you, I am sorry but they are all I have and I only put them out there to possibly help others.

I have spent the past 15 years effectively stepping through these ranks with sheer hard work, determination and family support. I can support the use of the three ranks but I encourage people to see them, not as a predestination to be settled on, but as a goal marker. I often discourage the internalization of labels because it is so easy for people to use a label as a reason to never push themselves. I have a very substantial number of diagnosis on top of my autism (though I will not make them public) and I could easily file for disability and effectively give in to a fatalistic mindset. One of my long term friends has bipolar and practically gave up years ago, turning him into a very gloomy person. He is currently trying to get out of that but once you accept a label as a fate, it is very hard to supersede your limitations. I know many people with one or two disabilities, most of which I myself share, and more often than not they give into the limitations of the label and just... stop growing. They stop pushing. They resign themselves to the idea that they will never be anything more than what the books say.

My attitude is that life is hard with a disability but that is all the more reason to get stronger. I have quite a lot of disabilities, it tires me to list them. However, I find my strengths and focus them solely on beating my weaknesses. If you are weak of muscle, you lift weights with what strength you do have and eventually get stronger. I do this with my mental stabilities. Survival is the key. One may always need support but should never fall back on it as a crutch. Even if your leg is broken and you need a crutch; those who go through therapy will learn to walk without it. It's painful, embarrassing and will cause you to cry yourself to sleep many nights but the goal is to one day leave that crutch. I have grown so much in my autism and other diagnosis'. I am not saying I'm cured; that will never happen. I'm saying that I have developed the strength of mind to balance my weaknesses with my strengths so that I may not need the support I once did.

I've seen people who have a disability that means they need a parent there at all times, much like I used to be. Their parents usually see the person as destined to always need to be taken care of. However I've also seen those who push past their limitations and learn ways around their stumbling blocks so that even the low functioning can own a business and pull in income.

I've heard many aspies or parents argue that I don't know how hard it is or how impossible it is and I shouldn't put false hopes into anyone's minds. I've been chased around by many of these people, being told I wasn't welcome anymore. It saddens me because there are also mothers who are friends with me and my mom who desperately want to know how we managed to get as far as we did. People who have known my family for over 50 years have come back and said "I can't believe how far he's come." I struggle with many disabilities every day, waking up to an unfair amount of struggle. People have always tried to tell me I'll never be more than blank but I fought anyway. I was the first aspie to graduate the accelerated Bachelor's program at Full Sail after many people told me that I couldn't due to my aspergers. They said I couldn't do a lot of things and year after year, I broke my back and my mind to prove them all wrong.

These ranks are very useful, not as ranks to remain in but ranks to graduate from. Write them on your bathroom mirror if you have to but wake up every morning knowing what you want. You have to want it. You have to make it part of everything. And you can't do it alone.

Again, if this makes you angry or offends you, I'm sorry. It's not meant to. I have tried my best to show others encouragement and support. I try to show each horse where there is water but it's really up to the individual horse to decide to drink or not. But if you had known me my whole life, you'd know that there was something to what I was saying.

 

[On the Inside]

Sorry to hear that you have been treated poorly because of your approach in dealing with your challenges. I like your view of the levels as being ranks to graduate from. That is how I see it, as a list of things that represent the challenges faced by people diagnosed at the various levels. As you said, that can be used as a means to target one's efforts at particular areas to best overcome or at least mitigate them. Glad you have shared your perspective.

 

[granolaturtle]

It's weird. I have HFA and while I see a lot of people who are also HFA that say they function like NT's, I sometimes feel I'm a bit more affected than that. It's frustrating because I know that many people with the same diagnosis say they have no problems at all and I feel like I'm just whining when I talk about them.

I don't fit all of the stereotypes. I have talents, but not the ones you would expect an autistic person to have. I love poetry and writing, as well as history and the humanities. I'm behind my peers (like in the 27th percentile? Maybe lower? I don't remember the exact number) in mathematics. I can speak very well for an audience, but my interpersonal skills are more strained. Sometimes I use a subtitle for watching shows - which baffles my family. It makes it clearer what's being said for me.

It's just... the guilt is difficult to deal with. I know that there's people worse off than me, like those who are nonverbal. But just because there are people paralyzed from the neck down doesn't mean you should take a cane away from someone who can walk with it. (if that analogy makes any sense)

 

[On the Inside]

It's just... the guilt is difficult to deal with. I know that there's people worse off than me, like those who are nonverbal. But just because there are people paralyzed from the neck down doesn't mean you should take a cane away from someone who can walk with it. (if that analogy makes any sense)

That may be a good explanation of why some people have difficulty with Asperger's being eliminated in favor of HFA on the DSM. People look at Autism as being something that presents considerable challenges, whereas people with HFA are just awkward nerds.

I have a family member who is always comparing me to other HFA people who have been able to excel in their fields. While I do have a high IQ, and have some talents and skills, I am by no means brilliant and my social difficulties have impaired my ability to do well in college and further my career. I'm not using that as an excuse, but I am recognizing where my challenges are and am trying to address them in ways that might help me do better. I want to do my best, but I spent a long time just trying to swim upstream rather than understanding my shortcomings and strengths so as best to use what I have.

 

[Myway]

I strongly dislike the scale. I think it should be done away with personally.

 

[pax]

That may be a good explanation of why some people have difficulty with Asperger's being eliminated in favor of HFA on the DSM. People look at Autism as being something that presents considerable challenges, whereas people with HFA are just awkward nerds.

I have a family member who is always comparing me to other HFA people who have been able to excel in their fields. While I do have a high IQ, and have some talents and skills, I am by no means brilliant and my social difficulties have impaired my ability to do well in college and further my career. I'm not using that as an excuse, but I am recognizing where my challenges are and am trying to address them in ways that might help me do better. I want to do my best, but I spent a long time just trying to swim upstream rather than understanding my shortcomings and strengths so as best to use what I have.

I agree. I waste so much time and energy swimming upstream.

 

[AsperDragon]

Hah, My repetitive behavior and special interest involves video games.....however, my (ex)therapist started my first session with saying that video gaming is an addiction so when he asked my special interest 2 minutes later i smartly told him myths and stories(which is another way i think of my videogames.) Now, I'm between therapists and havent finished the formal diagnosis with the first one (I left after we had an extended session [more than an hour] and, even though i have no view of a clock at all, he asked me if I thought is was fair for me to use so much extra time.........when i said i have no idea about time [one of my symptoms, if he ever read his notes] and that i usuallly know session is over because either the new patient arrives or he says it's time to end.....he told me i might not realize that he might have 5 patients to email. when i asked him if he was confident and capable enough to tell me it was time to go[that was one of our lessons for me during that session] he replied no, tht he wass afraid that i wasn't going to return. I had never had that thought until that moment, but since that session i no longer want to see him.) So i get to go to a new therapist and probably start over, but now i wonder if i should even ask to get diagnosed since the diagnosis we had tentativley worked out would no be considered ASD according to DSM5, at least not without counting the repeated interest/ action of my videogaming.


I really really dislike the mainstream world......Oh to just work from home.......too bad all the jobs i know that do that require you to work well in the group in an office before they allow the person that they socially like and approve of to be the one who gets to telecommute.


RRRAARRGGHHHHH!

I think i'll just ask a new therapist to just help me figure out how to live instead of diagnosis.