Mild, moderate, severe autism

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Here are my thoughts on the mild/moderate/severe categorization of autism. My thoughts on this are so overwhelming that it's difficult for me to formulate them in the systematic structure of language.

This summer, I saw a presentation by Amanda Baggs about how putting autistics into the mild/moderate/severe categories is redundant, and I've been thinking about it ever since, trying to figure out whether I agree or disagree. I see that there is a clear disparity between how I am able to function in the society vs. how my friend with classic autism can function in the society. In my opinion, the distinction between mild/moderate/severe lies in how capable you are in responding to the outside world. Not in how you come across, not in whether you are verbal or not, and not in the level of your specific sensory difficulties, but purely in how well you can process external information in a meaningful way and respond to it in a way that is logically sound. This is the crucial factor in getting through school and into university, provided that school gives adequate accommodations to the autistic individual.

I've met a non-verbal autistic named Drew Goldsmith this summer. He's a non-verbal autistic who has directed the documentary about disability called "No Pity". I believe that he went to college when he was 12 years old. When I've met him, he was constantly vocally stimming and flapping, and most people would think that he is "severe".

On the other hand, I know another autistic guy, J., who is 16 years old and verbal, but cannot do anything even close to what Drew has been capable of accomplishing. Drew has been able to figure out and use the video editing software on his mother's laptop to create these compilation videos that he has up on his Youtube channel. J. would not be able to do something like that, because he has much less ability to take the visual and textual information presented in the software interface and put it together in a meaningful way which will enable him to work with it. Drew can also write well, but J. cannot grasp the rules of more complex grammar (beyond very short sentences) because it requires putting his thoughts into an externally defined frame of mind. When the linguistic elements are short, such as words or short sentences, he can do it fine because there is less translation involved between his forms of thought and the conventional forms of thought. It takes a lot of mental effort. Also, it is hard for J. to make meaning of external input because of his intense focus on "parts of objects". He watches the same Youtube clips for hours on end, and it can be overwhelming for him to process a video on Youtube that he hasn't seen before because it can go against his own patterns of thought. The videos he replays constantly have already been ingrained into his mind in some way. He perseverates on these videos to a level which prevents him from processing a larger variety of things, thus impeding his functioning.

Same thing with me compared to some other people with AS I know, who are considered to be more "mild". One of my AS friends gave me this huge collection of Japanese and Korean music. I skimmed through a couple of songs, and then couldn't take it any more, so I just went back and listened to one of my own songs over and over again. The next day, a fragment from one of the songs from that collection came to me, and I started listening to it over and over again. Then, a few of the other songs came to me, but it took me a while to move beyond that one song. As a result of my such music replaying fixation, I haven't explored a wide range of music throughout my lifetime. I know tons of artist names, but I admit that I've never once even heard their music, because it's so difficult for me to move beyond my own tiny music collection. To put it simply, I perseverate more. I see that some other, "milder" people with AS are able to take in a wider range of information with more ease than I can. Some of them know about tons of music, movies, and learn about a wide range of topics during their spare time. I only gravitate toward one topic of interest, but I force myself to go beyond it a little bit because I recognize that I have to have a variety of skills in order to succeed in life. It is tiring, though, and it can put my brain to shambles, making me revert to my original interest to an even greater intensity than before.

I can say lots more about J. and Drew and my contact with them, but I'll stop here and summarize because this whole post is very painful to write since it involves my making sense of a lot of my mental processes that are only internally comprehensible in a non-systematic way. I've seen it said somewhere that Asperger's is not "mild autism", because people with Asperger's have their own unique difficulties that those with classic autism don't have. While that is true, the people with Asperger's I've met are generally good at making sense of everything that goes on around them, and in being able to take in bits of information through the five senses, to connect these bits to a larger whole, and then show in one way or another their response to this external information within a reasonable time frame. I don't know how to put it in words better, but I hope you can understand what I'm trying to say. Even if the individual is non-verbal, that taking in, processing, and responding has to be there. The level of that ability to respond defines one's level of functioning. Drew is able to respond through making his clips and through writing. Another autistic individual I've met is verbal, but constantly babbles something incomprehensible to himself. Maybe he could express himself in writing well, but I doubt it. J. cannot write longer sentences with proper grammar, either. When he writes, I get the general meaning, but he writes out his thoughts that are not in response to anything direct that goes on around him. He doesn't show self-awareness through his writing, and it is that awareness of self in relation to things in the external environment that is crucial for someone to make meaning of their environment and to be able to act upon it in an effective way. And that is the determinant of an autistic individual's level of functioning.

I have been diagnosed with Aspergers and I too have pondered what makes me different from someone with severe autism. My feelings is that it stems from how much you are locked into your own head. Someone who has severe autism is trapped inside their own head and can't get out whereas someone such as myself; I am in my own little world but I can get out. (P.S.: I like my little world but realize it's not feasible or socially acceptable to be totally isolated from the NT world)

I have AS/HFA, and I have some pretty strong interests that overlap. That's the reason that I'm living in a time warp. I also get out with my friends on a regular basis. I also know that there's a job to go to, and that Sunday mornings, I like to go to church. I can't have my head in the 60s all the time, because I'm constantly intercating with the NT world. I put on some vintage looking clothes, to do those things I like to do, but I'm not inside my head.

Yeah, and that's precisely why you're AS/HFA instead of more severe autism. You have a variety of interests, but you're very intensely into your interests. However, you can still interact with the NT world, provided that you can have frequent opportunities to engage with your narrow interests. You don't spontaneously share other people's interests because you're so intensely into yours. Being "in your own head" is a very simplified way to put in. Rather, it is your ability to process a wide range of external information that makes you higher-functioning. The narrower that range is, the more severe the autism is.

I don't think that's how most people see it. I think most people see it as how you present yourself. I can relate to the Youtube guy a bit, and the song list. When I come across a new website I feel overwhelmed and have to quickly scan through it and usually end up closing it or leaving, especially if the navigation is confusing. Next time I visit it will be easier. I find I must do this with learning new things as well-- after being introduced I take a break and when I go back it will be familiar and more okay.

I don't have a wide variety of interests, at least as a child. All my interests included just objects or a single band/song. As I get older my interests are becoming more diverse, as in, about a certain subject and learning it by rote or by writing things down over and over.

So, are you saying social understanding is not a factor in severity or is processing less external information the cause of lesser social understanding?

I think that severity, as a concept, is something that's too vague to make predictions from.

Say you've labeled someone as "severe". What does that say about them?

Answer: Absolutely nothing.

Autism is a complex disorder. It affects people in different ways, and there are many different abilities that are affected by autism, to different levels in different people.

If you say "severe", you're saying absolutely nothing about which skills are affected. Your "severe" autistic could be able to communicate just fine, or be unable to use symbolic communication at all. He could have one meltdown every year, or one every hour. He might be doing graduate-level work, or still be trying to understand how to put on a shirt. He could have senses so confused that he has to spend hours figuring out where he is and what's around him, or he could have very few sensory problems. You can't tell any of that from a simple severity level.

I say: If a term is useless to predict anything about a person other than "The person who said it felt he had severe autism," then it's no good using that term to try to communicate anything. If you're going to talk about how someone's autism affects them, you're going to have to say how it actually does affect them, not use some nebulous term like "severe".

I am really bad with conversations and often have long silences. I can partially function in society from experience. My experience? Living in university. I know how to do the weekly shopping routine and cook and keep myself alive on my own. However, when it comes to things like buying an expensive product where you need to talk to store employees and sign all these papers, those confuse me. I am also bad at interviews. I tried looking for a job but no one hired me. I also have really poor researching skills. If I need to look for something on the Internet, chances are that I will not be able to find everything that is needed to complete my task. I also lack an exploring mind. I always tend to stay sheltered in a spot once I am settled in. In first year university, all I did was stay in my room and go to class. Thats about it. I keep things simple but this results in me not learning new things.

I agree, but it's supposed to be a very general term. However, that does make it vague. However, I see one thing that makes sense: a person who's autistic and can at least get an education and have the skills to work is much less affected than another autistic person who cannot even respond in a logical way to a simple question that they're asked. Autism in itself is a societal construct, as is any disability, but if we look at it that way, then we've got to look at the level at which an individual's functioning is affected within the society. And just as it is difficult to draw the line between a diagnosable autistic and a quirky individual who does not quality for a spectrum diagnosis, we can look at autistic individuals and classify them by their level of functioning.

That's why the definition of "severe", as well as "mild" and "moderate" needs to be completely re-defined. It is not fair to say that someone who is non-verbal and stims a lot is automatically low-functioning, because they may be able to communicate in writing at a very high level (I have Amanda Baggs in mind). So if the society had the required accomodations for someone with a similar set of symptoms, they could at least be able to flourish as writers in their field. However, there are some autistic people out there who simply do not have any such special skills. They are not even aware of what "autism" is, let alone understand how it affects them and what they can do to make it in life. And it is very likely that they will never gain that awareness in first place. The nature of the services required for these individuals is different from the nature of the services required for someone with higher self-awareness and a better ability to reason about the world around them. While the first group would need residential support with specialized services, the second group would need something like a social skills group, support groups, or a job coach. Therefore, in my opinion, making that distinction on a more general level is important.

Autistic people who are trapped inside, to whatever extent, don't have a choice.

Stop chopping me into pieces to make me fit your theories. The person you are fitting into a slot -- any of these slots -- is not me. It's someone you imagined and put in my place. That's a form of violation. Please stop. You don't know me well enough to do this to me. You don't know the other people you do it to well enough to do it to them. If I could tell you what's wrong with your ideas, I would, but I can't (so I have no means to defend myself except to say you're completely wrong). But there is something major wrong with them, and your ideas say more about you than they do about autistic people as a whole.

double trouble

Last edited by buryuntime on 19 Sep 2010, 7:41 pm, edited 1 time in total.

I'm confused. Was one of the people the OP discussed you specifically?

Since I've been here, I've been rethinking the term "severity" as it's used to describe people with ASDs, as you can be affected by your autism in different ways. Most people would probably consider me mild just because I appear to most people to simply be a very introverted and somewhat weird NT, but if they saw me at home they'd probably think very differently due to my NT mask falling off.

I want to understand what is wrong to them., though. I want to learn and to improve on my ideas, and to sort this out for myself once and for all. I feel like I still don't understand something about this, and I need to figure out what it is that I don't understand. That's why I posted this long message. Feel free to link to a blog or any of your posts - I would like to read them and see what is wrong with my theory.

We chop the world into pieces every day by trying to describe it. A picture is worth a thousand words, but even an infinite number of words will not replace the picture itself.

Yes, I've mentioned her in my postings as an example. I didn't know how to illustrate my ideas otherwise to make them comprehensible. It's just too hard to put into words what I'm trying to say.

Its simple. If you can't take care of yourself/keep yourself alive, then its low functioning. I don't neccessarily mean not being able to find a job. I mean that if you are hungry, you don't even know to put food in your mouth. When you cross the street, you blindly walk into traffic (even though the person is not physically blind). So pretty much IMO, a low-functioning is someone who is like a baby, who needs someone to monitor them pretty much 24/7.

MathGirl, I think you've made a mistake in assuming that "low-functioning" has any meaning; it has no more meaning than "severe" does. Often times, "low-functioning" is a term used by a doctor to describe his subjective impression; and to use it to describe a person, or to say it does not describe a person, is to force your description of that person to depend on the subjective impression of a random theoretical doctor. Depend on words like that, and you've pretty much dumped any chance of getting useful information across.

Now, if you want to say, "Some people can communicate very well in writing (either sometimes or always) but also stim a lot (sometimes or always) and do not use speech (sometimes or always)," then that would be an accurate statement. Or the more general statement, "You cannot predict an autistic person's performance on one skill either by observing their performance on a different skill or by observing their performance on the same skill at a different time."