What's wrong with saying "mild" or "severe" autism?

[Terpsichore]

Legitimate question asked with complete respect: why are terms like "mild" and "severe" autism so problematic?

If someone has "mild" asthma they probably get kinda out of breath at times but might not even bother to carry their inhaler compared to someone with "severe" asthma who absolutely needs an inhaler with them at all times to save their life. If someone has a "mild" cold they probably feel pretty sick but not so bad that they can't work, but someone else could get a more severe case where they are sick in bed for a couple days. Why is it a problem to say a similar thing about autism? I would think people who find their autism interferes with their life only slightly (people who feel that autism is more difference than disability, or people who go through life completely fine and only start to think about autism when a family member is diagnosed) could be considered "mild" compared to someone who finds autism to greatly interfere in their life.

Obviously both people are fully autistic and I can also see how such labels should originate from the individual, since it can be problematic to decide from the outside what a person's internal experience is, but I've seen people called out for labeling themselves as "mildly autistic'

Just trying to be better informed. Thanks!

 

[thejuice]

Yes I was called out for using the term "mildly autistic" for myself.
I think it's something to do with each autistic having an uneven profile of abilities and that we have varying deficits in different areas that can't be labelled as universally severe or mild.

I suspect some of it was just the person taking pleasure correcting someone.

However to me there are people with autism which impact their lives severely and others less so.

 

[FayetheADHDsquirrel]

I don't see the problem myself.

 

[Judge]

Nothing "wrong" with it per se. However you may find that few people will truly understand such terms. And trying to distinguish the research between Kanner and Asperger would probably leave a lot people even more confused.

Worse perhaps when some may respond, "But you don't look autistic !"

- "Kobyashi Maru". A no-win scenario.

 

[velociraptor]

I have been corrected by a few people for describing myself as having high-functioning autism. ASD1 doesn't work because it says requires support. I don't, thus, high-functioning. Asperger's worked fine but it unfortunately the moniker is shared with a prominent Nazi. So I need something equivalent to Asperger's that has no Nazi issues and that I won't get yelled at for using.

Whenever I find someone who really climbs on my back over nomenclature issues, I'm deliberately as offensive as possible to get rid of them. If you can't make someone happy you can at least make them go away and bother someone else.

 

[NB79]

People get 'offended' by the most unlikely to offend stuff nowadays.

 

[Outdated]

I agree with other people's comments that there's nothing wrong with the terms you're using, but there is definitely something wrong with the people raising these issues with you. I tell people:

"I'm not an Aspie. I'm from the other end of the spectrum, I'm full blown autistic."

If some people don't like that then it's their tough luck, I am who I am and I make no apologies for it.

I also explained to a health professional in a seminar about the different usages of the term "high functioning". This was a light bulb moment for her, like all of a sudden dozens of previous conversations suddenly made more sense to her. Health professionals use that term to describe how successful people are in a social environment but in conversations between autistic people "high functioning" often refers to the extra special gifts that came with our autism.

 

[Shamar]

Legitimate question asked with complete respect: why are terms like "mild" and "severe" autism so problematic?

If someone has "mild" asthma they probably get kinda out of breath at times but might not even bother to carry their inhaler compared to someone with "severe" asthma who absolutely needs an inhaler with them at all times to save their life. If someone has a "mild" cold they probably feel pretty sick but not so bad that they can't work, but someone else could get a more severe case where they are sick in bed for a couple days. Why is it a problem to say a similar thing about autism? I would think people who find their autism interferes with their life only slightly (people who feel that autism is more difference than disability, or people who go through life completely fine and only start to think about autism when a family member is diagnosed) could be considered "mild" compared to someone who finds autism to greatly interfere in their life.

Obviously both people are fully autistic and I can also see how such labels should originate from the individual, since it can be problematic to decide from the outside what a person's internal experience is, but I've seen people called out for labeling themselves as "mildly autistic'

Just trying to be better informed. Thanks!

Areas of strengths and weakness in autism are so varied among individuals are so varied that terms like "mild" "moderate" or "severe" or, the official designations of ASD-1, ASD-2, ASD-3, are essentially meaningless. Take my own situation, for example. I earned a geology degree, and had a career as an exploration geologist and geophysicist. I have demonstrated that I can live and function on my own without help. This makes me officially ASD-1. The exception being social interaction. I am, for all practical purposes, socially non functional. I cannot interact socially even with help. In this regard, I am ASD-3.

So what am I, ASD-1 or ASD-3, mildly or severely autistic? Do we strike an average and call it ASD-2, moderately autistic? Can a person be simultaneously ASD-1 and ASD3, mildly and severely autistic?

Having been a member of this forum for a number of years, I know I am not alone in this regard. I think most of us can be put into multiple categories, both official and unofficial. Autism is not a spectrum (although a lot of doctors would like that because it makes thing simpler). I once tried to figure a series of spectra on the spectrum, with the intent of finding a way to plot any individual as a unique point on a chart. I quickly realized that plotting this would take at least 20 different spacial dimensions. I can handle 4 or sometimes 5 dimensions, but I doubt any human mind can handle this many in a meaningful way. This is why, almost universally here, we do not like labels.

 

[TBRS1]

I could be described as high functioning.

I've never had help. For me, there was no help because I was never diagnosed, and nobody had any help to give, back in the day. I got through without it.

But that doesn't mean my autism is mild.

Every thing about my life - every choice I made or was forced to make - can be traced straight back to the influence of autism on my life.

I was able to hide, but wasn't able to be normal.

Just because I can sort of fake it doesn't mean I'm not experiencing the effects of being autistic.

If I actually am high functioning, that just means that I was luckier than others in the way autism presents in me.

I'm still hellahella autistic.

 

[Jenisautistic]

I believe that saying mild or severe is all right sometimes, but I usually prefer phrases like
More affected or lots of affected

Is that some people feel like it undermines them and their struggles

Personally I feel that people that are more on the severe end of the spectrum, but able to articulate them are not happy saying that they are more affected because they are afraid of judgment.

Being more affected by autism is a huge part of life for so many people

There’s nothing wrong with being mildly autistic or even severely autistic

To me, it’s just the way we were created and we are all created for a purpose
Some people who are milder
Like to distance themselves from people who are more severe

And that’s where the problem is

It’s weird because I don’t mind like higher end or lower end but my own mild and severe just odd to me not that I mind it it’s just not for me


No one is the superior and no one is inferior based on severity

 

[Dagan]

I usually end the conversation by saying (the equivalent) of the following:

"I'm the one autistic. How are YOU offended by whatever I'M comfortable calling it or explaining it to be? You're lucky that I'm even comfortable letting you talk to me in the first place....and now....you've kind of ruined that. Do you go up to people in wheelchairs and argue how bad they think about their ability to walk is!?"

 

[Masked Man]

My guess is that a term like "mild" or "severe" is not measurable. In other words, it's highly subjective. What looks mild to one person may appear moderate to another.

Further, my guess is that these medical terms have to be more accurate in order to receive funding. Medical documentation needs to be as clear and as accurate as possible.

 

[Neonatal RRT]

Legitimate question asked with complete respect: why are terms like "mild" and "severe" autism so problematic?

If someone has "mild" asthma they probably get kinda out of breath at times but might not even bother to carry their inhaler compared to someone with "severe" asthma who absolutely needs an inhaler with them at all times to save their life. If someone has a "mild" cold they probably feel pretty sick but not so bad that they can't work, but someone else could get a more severe case where they are sick in bed for a couple days. Why is it a problem to say a similar thing about autism? I would think people who find their autism interferes with their life only slightly (people who feel that autism is more difference than disability, or people who go through life completely fine and only start to think about autism when a family member is diagnosed) could be considered "mild" compared to someone who finds autism to greatly interfere in their life.

Obviously both people are fully autistic and I can also see how such labels should originate from the individual, since it can be problematic to decide from the outside what a person's internal experience is, but I've seen people called out for labeling themselves as "mildly autistic'

Just trying to be better informed. Thanks!

From the perspective of a respiratory therapist of 40 years... your asthma reference caught my attention. To be clear... in this case... you are comparing a form of immune function condition (asthma) with a widely diverse neurodevelopmental condition (autism). Within this perspective, comparing the two is like comparing apples to oranges... as one might say. That said... I do understand where you were trying to go with this.

1. As others have pointed out above, although there are some common diagnostic characteristics that make autism what it is, within said diagnosis, there is quite a bit of variability within from person-to-person. There's more neurodiversity within the autism community than there probably is within the neurotypical population. That said, labels might not accurately describe the internal experience.

2. There are many who have created an "identity" around their diagnosis and can be quite sensitive to these labels (mild, severe, high-functioning, low-functioning, ASD-1, 2, 3, Asperger's... whatever)... again... because the labels may not accurately describe the internal experience. It may be further complicated by another person's ignorance and prejudgement having some form of inaccurate expectation as to how "capable" one is. What most (non-autistics) do not understand, for example, that there is no association between intelligence and autism... one can be an ASD-1, 2, or 3 with low, normal, or high intelligence(s)... most often with some combination. As one might say, you can't judge the book by the cover. Someone might see the cover of "the book" as a toddler's A, B, C book... only to open the cover and find a literary masterpiece, The Grape's of Wrath by George Steinbeck. Someone might see a successful genius, visionary, and billionaire... not knowing the pain, suffering, and dysfunction that is going on inside with regards to his/her depression, social, and communication difficulties.

3. For those of us that do use those labels, I am of the mind that they use them in a way that sort of simplifies the discussion for those non-autistics who might not understand what autism really means. I've done this myself when friends, relatives, students, and co-workers just need a quick introduction. However, this with knowing that this also comes with some risk of some ignorance and prejudgement from other people. Be prepared.

 

[Crossbreed]

Legitimate question asked with complete respect: why are terms like "mild" and "severe" autism so problematic?

It depends on who you talk to. I prefer "benign vs. aggravated."

Autism Subtypes...

 

[Matthias]

Nothing wrong with the terms although I wonder if severe autism is really just regular autism + co-occurring condition (such as intellectual disability or genetic condition that contributes to social deficits).

 

[Matthias]

I agree with other people's comments that there's nothing wrong with the terms you're using, but there is definitely something wrong with the people raising these issues with you. I tell people:

"I'm not an Aspie. I'm from the other end of the spectrum, I'm full blown autistic."

I'm surprised to hear this. After you wrote that you make friends easily, I assumed you must have very mild autism.

 

[Outdated]

I'm surprised to hear this. After you wrote that you make friends easily, I assumed you must have very mild autism.

No, I never do anything by halves.

I was never really able to hide my differences although I don't have any obvious stims, I learnt early on that I might as well just be myself because trying to be like everyone else doesn't work. And I think that's one of the things people like about me, strength of character, I'm happy to be myself and I don't care too much about what other people think.

A couple of months back a shop owner said I looked like an old hippy. I just smiled and said Yes. Then he was curious about where I was from and we talked for about half an hour.

 

[velociraptor]

No, I never do anything by halves

My man.

 

[the_tortoise]

Can a person be simultaneously ASD-1 and ASD3, mildly and severely autistic?

Yes, officially . There are 2 support levels categories -- one category is for sensory and repetitive behaviours; the other category is for social communication.

And a different level can be assigned to each [category], independently of the other; This was a deliberate attempt to address the issue of uneven abilities across symptoms and domains of functioning by those who created this change in the DSM 5!!

It continually boggles my mind and frustrates me to no end that I have not encountered a single person on this website who actually knows this -- of who is actually willing to accept is and can conceptually work with this reality.

I have two separate support levels. RRB is level 3. Social communication I am pretty sure is 2 (I could be wrong about that, though - looking at writing alone, outside of real-time interaction, I am possibly level 1; looking at speech, writing in real-time used exactly like speech, and comprehension of any unspoken rules or expectations is a very different story... My psychologist was very, very unclear about her opinion of a social communication support level).

 

[UFO]

Actually, I did know that. Probably because I began to gather information about autism just about two years ago, so details are still fresh in my mind... But it is easy to claim it now, as I haven't proven having this information before this

About the original post:

I think terms "mild" and "severe" are perfectly fine and short simplification to avoid using a huge amount of words listing categories to answer a simple question "how bad your autism is compared to others?".

However, what is not ok, is that when I say that "on average my symptoms are mild", people assume that there are no severe individual symptoms at all. But that is an universal fault: people just don't understand how statistics work, nor they understand that there are always small things separate from each other.

No, I never do anything by halves.
...
we talked for about half an hour.

Rrright...

(I admit, an opportunity to make that joke was the only reason I logged in and answered to the thread )