Different levels of autism?

Yes, me too. I'm very good at my job and could speak about it in front of strangers, no problem. But if I had to go to the supermarket on a busy Saturday morning I wouldn't cope at all- too bright, too loud, too crowded, and the temperature is all over the place, so it would be overwhelming almost immediately.

I had the, “we are all somewhere on the spectrum ,” recently, they have no idea.

I have felt like the struggle doesn’t stop when you have a diagnosis, because when you have a diagnosis and the added supports that equalise you amongst your peers, your peers have a problem with every step that you take above the dirt.
People feel as if you shouldn’t continue be to equalised if it means you surpass them.
Despite the fact they thought you were substandard prior to support, they believe that your equalisation is beyond fair, when really if you had been playing fair the whole time, you would have lapped them several times.. and you are even more capable now, because of the struggle you’ve had to endure, that neurotypicals would never have to typically endure.

People say your not very autistic or i think we all are. What they dont know about is our personal deep habits, stimming, struggles etc which we deal with alone at home. Personal things. They woukdnt know, because we hide them and why should we tell all to get their understanding. 

No i’ve never been cornered like that, but I feel it in my neck and it forces my head down and hands become rigid, and then I just think psychotic thoughts until something distracts me. 
Actually now that I think of it I have lashed out a few times, but never at strangers in public, but I would chalk it up loss-of-control, because when the trigger is finished I am finished..

Having said that, I think that if I was drunk I would have significantly less control, I am less controlled in general when I drink..

After a variable, but never very long, length of time in a crowded situation I feel increasing internal tension and eventually get the urge to lash out at anyone near me. I have never done so, but I definitely have that urge.

It is something that I only recently discovered is part of my quirky life. I didn’t realise how much my wife carries me. The level 1 diagnosis states, “ requires support “  it’s definitely not “mild” autism.

I am in complete disbelief at much the risk of harm increases in overloading situations, because I could’ve been complete aware of my surroundings moments before, then on go the sensory-blinders..

In crowds a get angry, whilst driving I get sleepy, when I can’t see I can’t hear either..

I completely identify with this statement..

The 'severity' of autism in the individual is very often context-based. If you saw me giving a seminar on something I know a lot about, you would think that I was amazingly functional. Put me in a crowded area, however, where I could not escape, and where loud noises happened at random intervals and I would very soon be rendered entirely unfunctional,

It going to be even nicer to be able to use it..

Thank you that makes so much, I'm newly diagnosed so I'm learning still xx

Levels were included in the DSM-V which is often used as a guide for autism diagnosis even in the UK. However the latest 2022 revision of the DSM-V now has a warning saying levels should not be used to indicate whether or not people should be eligible for government services. So make of that what you will.

The DSM-V levels have nothing to do with high or low functioning which are not recognised medical terms but are often used even by medical professionals as a shorthand for high or low intelligence.

The levels in the DSM-V are supposed to relate to things like social skills, difficulty adapting to change and ability to verbalise and converse normally.

Thank you so much everyone! 

I struggle with some things where as some days I don't, it's nice to be able say yes I have it end of story. 

Not whether to say I have it severely or only slightly. 

thank you xx

Sounds like we have a similar experience Roy, if it weren't for my other half plugging the gaps in my executive function I'd not get by nearly half so well as I do now. I am afraid that if anything should happen to my otherhalf not only would there be greif but I couldn't function living alone.

I’m not really a fan of  having different levels of autism, my personal needs can vary on a daily basis. Some days I can function quite well, other days I can become non verbal, struggle to dress myself and have quiet debilitating anxiety. I  have realised that I would actually struggle to live alone, I don’t answer the phone or open letters, my wife makes sure everything is paid, I would never pay anything, not because of lack of funds, It’s just always something I can do tomorrow. I’m aware of the criteria for each level but do any of us fall into just one level?

battybats said:

Things like severity and functioning labels are often a better reflection of what someone's autism looks like to others than they are of how that person really feels or what they need.

I agree with this.
Levels wouldn't be so problematic if they were left to the individual to decide where they fell on a scale. The reason I say so is because "HFA/Aspergers" gets equated to level 1 but my assessor never saw me on one on my profoundly nonverbal or meltdown days, because I find in reality I go up and down the levels situationally and depending on how much background stress/overload I have on the day. I have had years decades even of being at level 2 with periods of being at level 3, and yet that's not what the daft peice of paper said because my assessor doesn't really know me as a person and what my overal life is like.

I think it would also be more useful if people who use levels accepted that they are fluid not fixed, because I've seen flawed reports of so called "level 3/2" people whose (and I hate this phrase because of the medicalisation) "autism improved". When really we all know that "the autism" doesn't improve, an autistic person does not get less autistic, they just either get the support they need to cope better or figure out a way to cope better on their own, it's coping skills that improve not "the autism" and even masking when faced with social rejection gives the appearance of "fixing the autism" until it doesn't. Which is the problem with the idea of using a fixed level scale, because if you only ever saw an autistic person when they feel they can cope enough to leave the house well presented on their own you could be under the illusion their whole life is at "level 1" when actually they seldom leave the house because they can't cope very well very often.

This is why I've personally chosen to do away with functioning labels and just tell people how I feel and what I need on the day instead.

But honestly, I am pretty defensive about the way in which one is trying to retrieve that information, if I feel like im being interrogated it’s like trying to bleed a rock. I usually dont say anything.

I just say ASD level 1.. with a side of SPD, Chronic Anxiety and Depression and Akinetic Catatonia..

Things like severity and functioning labels are often a better reflection of what someone's autism looks like to others than they are of how that person really feels or what they need. Even levels, which are an indication of support needs, are a bit too generic to properly reflect the spiky skill profile a lot of autistic people have, though they're quite handy when you're giving a general overview (e.g. I do have low support needs overall and would presumably be considered level 1).

What I find most helpful is to say what someone's specific support needs actually are- whether that's via an advocate like a parent or carer or the person speaking for themselves. I know that I don't need support in my current work environment, for example, but I can't cook for myself without having a meltdown so I rely on someone else (usually my partner) to make sure I eat proper hot meals.

Basically though, you either meet the diagnostic criteria or you don't- having different needs or experiences doesn't mean some people are 'less autistic'.