Are most people with autism mild, moderate or severe?

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I've been wondering what level most people on the spectrum are at.

There's some people on here who don't believe in functioning labels, but I think it's a pretty even stretch. It depends on the person affected.

I am borderline severe

Lemme say for the record that the word "level" is too vague here. So, let's use an adaptive-skills type scale--one that measures how good you are at taking care of yourself.

Almost everybody on the Spectrum is "mild"--that is, can take care of their own basic needs, don't need constant supervision, and can either support themselves via employment, live independently either on disability or supported by family, requiring intermittent support with things like bills, shopping, or transportation. Another large group would be considered "moderate"--can't live on their own, but doesn't need 24/7 supervision and can take care of their own basic needs; they may be employed or on disability, and generally need help with things like making meals, remembering to eat and sleep, or communicating with people who don't know them well. The smallest group needs 24/7 supervision and help with basic ADLs; they might need help with going to the toilet, washing, eating; they might have communication problems even with people who do know them well.

Note that I'm not saying anything about the obviousness of the autistic traits, or the specific diagnosis, or the academic abilities of the people involved. Those things can't be predicted by the kind of adaptive skills you've mastered. Also, people do move between categories depending on what they learn, what their environment is, how old they are, and what kind of help they can get. And a person can easily be mild in one area, severe in another.

My estimate? Probably 75% mild, 20% moderate, 5% severe. And five times that many who aren't technically diagnosable, but are NT with autistic traits.

It seems that most of the people, on this board are mild(or claim to be mild). But then, how much in real life? Dont know, the variation of the facts and figures are staggering.

Well I feel like I am severely messed up in the head........but its not just the AS, so I feel things are quite severe but its not all related to having AS though that does not seem to be helping matters either.

I like that description!

But now I will have to wonder whether I am "NT with autistic traits" or just a mild case of Broader Autistic Phenotype.

I think I'd be considered to be on the mild end...MOST of the time. I usually go through time-periods, where some of my symptoms are just so unnoticeable and manageable at the time, that Sometimes it doesn't even seem like AS is holding me back from anything or it isn't making things any more difficult for me to manage.

Or I could be going through a phase where all my symptoms are WAY more profound, making everyday tasks feel like an enormously big burden. That's what I'm currently going through that right now. I seem to be: significantly more quiet, prone sensory sensitivity, working memory sucks, I'm unaware of my surroundings, coordination becomes an issue, verbal conversation is just confusing and extremely stressful, I can't respond appropriately to comments and questions directed at me (EX: making replies that don't make any sense).

One person could fall into the "classic autism" category and another in "high functioning" while both have the exact same set of symptoms. Except, the person with high functioning autism would not be as affected by them. While the classic autistic would be very non-verbal, prone to constant meltdowns, very clumsy, very poor coordination, etc. The high-functioning autistic would still have problems in these areas just not nearly as serve.

I hate how my ability to function can go way up or way down depending on the day. When I'm feeling good, I can go out with friends, interact, communicate very well, have fun, and just feel and be part of everything. But then I think people start to frame this picture of what I'm like, based off how I acted around them. What they don't understand is that: A lot of the time I am not that same person. So then they don't understand why I was so friendly one day and hardly talked with them the next day...URGH

[quote="The_Wanderer"]I think I'd be considered to be on the mild end...MOST of the time. I usually go through time-periods, where some of my symptoms are just so unnoticeable and manageable at the time, that Sometimes it doesn't even seem like AS is holding me back from anything or it isn't making things any more difficult for me to manage.

Or I could be going through a phase where all my symptoms are WAY more profound, making everyday tasks feel like an enormously big burden. That's what I'm currently going through that right now. I seem to be: significantly more quiet, prone sensory sensitivity, working memory sucks, I'm unaware of my surroundings, coordination becomes an issue, verbal conversation is just confusing and extremely stressful, I can't respond appropriately to comments and questions directed at me (EX: making replies that don't make any sense).

One person could fall into the "classic autism" category and another in "high functioning" while both have the exact same set of symptoms. Except, the person with high functioning autism would not be as affected by them. While the classic autistic would be very non-verbal, prone to constant meltdowns, very clumsy, very poor coordination, etc. The high-functioning autistic would still have problems in these areas just not nearly as serve.

I hate how my ability to function can go way up or way down depending on the day. When I'm feeling good, I can go out with friends, interact, communicate very well, have fun, and just feel and be part of everything. But then I think people start to frame this picture of what I'm like, based off how I acted around them. What they don't understand is that: A lot of the time I am not that same person. So then they don't understand why I was so friendly one day and hardly talked with them the next day...URGH :?[/quote]I know exactly what you mean actuall! I'm kind of the same. It especially effects me when I'm sick. My autistic symptoms get far worse when I'm sick which is actually at the moment (beleive it or not).

Callista, I'm interested to see on what you base this estimate. I'm asking because I find the great percentage of mild autistics surprising, and you are usually very well-informed and able to back up your claims.

Pax.

Basing it on three things--

--General epidemiology of ASDs. You count them up, you get a lot of cases of PDD-NOS, many of which are milder cases (PDD-NOS is not synonymous with "mild", but a mild case with fewer symptoms is one of the reasons you might diagnose PDD-NOS). Outcome studies of the newer generation of ASDs also shows nearly all of them learning speech by the pre-teen years, and a good portion being independent in adulthood. The trouble with the adult independence thing is that we just haven't had enough time to follow this latest generation of ASD kids. They're still kids. So the data we have on ASDs in adulhood is from back when we used to diagnose only the more obvious cases. The numbers for adult independence are still pretty good even for that generation, though, so I can only guess they'll be better for this one.

--Autism as a spectrum disorder, and the widespread existence of BAP and subclinical traits. Autism goes from profoundly autistic all the way to NT, and you get a bell curve sort of distribution, with more people near normal than further away. Most disorders are like that, especially the ones that come in varying severities: Lots of people near-normal, less in the moderate range, and a few far away from normal. (In this case "normal" is meant statistically, and refers to the middle chunk of the bell curve.)

--The extreme increase in diagnosis of ASDs, from 1:10,000 to 1:100, over the past thirty years, combined with the change in diagnostic criteria. Originally we only diagnosed severe, obvious ASDs as autism, and we had a very low number. If you add the milder cases (which wouldn't have been diagnosed back then) and the cases where the ASD is comorbid with something else (intellectual disability, for example) to the point that the something-else composes most of the clinical picture, then you get today's much higher numbers. Stands to reason that if the small part of the spectrum we diagnosed back then was the "severe-and-obvious" part, then the cases we added are probably the less-obvious and/or less-severe part, and since those make up most of today's autism population, you can conclude that most autistics today are non-severe or non-obvious cases.

Some caveats re. severity:

1. You can label somebody "mild" or "severe", but you can't use that label to predict any specific skill they might have. People with "severe autism" have gotten college degrees and written books; people with "mild autism" may be unable to explain to someone that their teacher is abusing them. I would in fact caution against using sweeping labels like these at all, because many people don't know that it is impossible to use them to make such broad predictions.

2. You can use a label like mild/moderate/severe to describe how much support a person needs; but you can't use it to predict how fulfilling their lives are.

3. A person can go from one category to another as he learns things or his environment changes. It is often very hard to predict what a child will be like as an adult.

I'm not sure which is the most common. I know I'm on the very mild end of the spectrum, and I know of some people who are so severe they need 24-hour care.

Callista, I never fit into boxes, but in your moderate description you describe my needs perfectly!

Here are the statistics provided by Wiki:

http://en.wikipedia.org/wiki/Epidemiology_of_autism

The data on the statistical breakdown of ASD's is limited, but if one does the math from the breakdown Wiki provides, it's about 70 percent PDD NOS, 20% Classical Autism Disorder, 5 percent HFA-Autism Disorder, and about 5 percent Aspergers. Rhetts and Childhood Disintegrative Disorder are detailed as rare.

The statistics on the CDC website indicate that about 40% of diagnosed children with ASD's are non-verbal, but others do learn to speak as they get older. That is old data, but the most current data available on the CDC website. And, 41% having the co-morbid condition of mental retardation, judged from the IQ tests that have been used, but there is suggestion that they would do better if the tests were limited to raven matrices non-verbal testing methods.

The latest statistics I have seen provided by the research article that was recently presented on this site, about intelligence in autism being underestimated by Lauren Mottron and Michelle Dawson, provided statistics that 90 percent of people diagnosed with ASD's do not maintain regular employment, and 4 out 5 live with their parents and depend on them for support.

The people that actually post here are not reflective of the Diagnosed ASD population as a whole; some are diagnosed and some may fall into the broader autism phenotype. At any given point in time they for the most part are the same 20 or 30 people posting, out of an online viewing population of close to 1500, and a reported membership approaching 60,000, from people that have registered since 2004.

We have no idea who the viewing population is or how they function in life.

The second largest site for autistic people, AFF usually has the same 4 or 5 individuals posting at any given time out of 30-50 people viewing the activity there, and a reported membership approaching 30,000 from people that have registered since 2004.

Overall in the general population it is likely that the 10 to 15 percent in the broader autism phenotype, do maintain employment at higher percentage rates, and are independent from family support at higher percentage rates; I haven't seen any actual evidence that refutes the statistics that the majority of individuals known to be diagnosed with autism need assistance from family to survive, and do not maintain regular employment.

Callista mentioned some resources, that may be new that suggest otherwise, I would be interested in seeing the research they are based on.

We have little understanding of the prevalence of "milder" cases of ASD's in the adult population, since the diagnosis only became available for Aspergers in 1994. However, when the adult population was screened, in England recently, a 1 percent figure close to the actual children diagnosed in the country was found, for total ASD's.

Along with that study, it was found that the majority of those individuals had difficulties in sustaining themselves in life as well. Many of them had no idea that they had an ASD, before they were screened, so they haven't had any structured opportunities to learn skills to adapt.

I would agree that who is mild and who is severe is a subjective term, but in general, the reality of life is one has to maintain regular employment to survive unless they gain support from someone else.

At least from my understanding of what is known about all diagnosed cases, the overwhelming majority are not independent in their subsistence needs and rely on others for support. That's not a judgement though on what is considered mild, moderate, or severe, just a reality of life, that currently exists for those individuals with ASD's, that can be a limiting factor in life.