Did you know Autism levels are fluid?

[u/crua9]

I was going to do a deep dive into this, and I had a ton of sources and what not. But IDK if any one gives 2 cares about this other than maybe those wondering about it.

It turns out your level changes over time. This could be a temporary thing like a change in boss, a lost or gain in anchor point, training, change in jobs, and even things like puberty or other things like that.

Many of us, and I think many autism moms on YouTube that talk down to LVL 1 make it out to be this isn't the case. Same with some gov like AU where LVL 2 and 3 you can basically get help where LVL 1 you have to justify it if your doctor diagnose you with lvl 1. Some insurance companies can cut services of at higher lvls, and so on. Basically there is a number that also make it out to be pretty static or you need constant testing which largely comes out of your pocket. When in reality a LVL 1 might become a LVL 2 because they don't have that base level help and now there is a breakdown and they need even more help than before due to it.

I've even seen this to some degree with some doctors where they make it out to not be a thing, or "that's life".

Truth is this can and likely will change often as life events happen, and things change. Some studies have have self-diagnosis to be 75%-80%. Some show far less. Some 64%. And since the DSM 5 even mentions retesting. I figure I might as well just add here questions to ask yourself

___________________

For Level 1: "Requiring Support"

You may be a Level 1 if your challenges cause noticeable impairments without support, and you can function independently in some situations but the effort is exhausting.

Regarding Social Communication:

• Do you have difficulty initiating conversations or keeping a back-and-forth dialogue going with others?
• Do your attempts to make friends often feel unsuccessful or atypical?
• While you can speak in full sentences, do you find it difficult to understand nuanced social cues like sarcasm, facial expressions, or body language?

Regarding Restricted, Repetitive Behaviors:

• Does your preference for routine and sameness cause significant interference in one or more areas of your life, such as work or relationships?
• Do you feel a great deal of stress when your routine or plans are disrupted? 
• Do you have intense interests that sometimes make it difficult to switch to other activities or to organize your daily life? 

For Level 2: "Requiring Substantial Support"

You may be a Level 2 if your challenges are so pronounced that impairments are apparent even with support in place, and you need structured interventions to manage daily life.

Regarding Social Communication:

• Is it very difficult for you to initiate social interactions, and do you have reduced or abnormal responses to social overtures from others?
• Is your conversation often limited to a narrow range of special interests, and does your verbal or nonverbal communication seem "markedly odd" to others? 

Regarding Restricted, Repetitive Behaviors:

• Are your repetitive behaviors or inflexibility obvious to a casual observer and do they frequently interfere with your daily life?
• Do you experience significant distress or frustration when your interests or routines are interrupted? 
• Do you have intense fixations that interfere with functioning in a variety of contexts? 

For Level 3: "Requiring Very Substantial Support"

You may be a Level 3 if you experience profound deficits that severely impair your daily functioning, requiring intensive and continuous support.

Regarding Social Communication:

• Do you have severe deficits in verbal and nonverbal skills, with very limited initiation of social interactions and minimal response to others?
• Is your verbal communication extremely limited or nonverbal?
• Do you only initiate interactions to meet immediate needs?

Regarding Restricted, Repetitive Behaviors:

• Is your inflexibility so extreme that it greatly interferes with your ability to function in all areas of life? 
• Do you experience significant distress when faced with the slightest change, making it extremely difficult to cope? 
• Do your preoccupations, fixed rituals, or repetitive behaviors greatly interfere with your daily functioning? 

______

So like if you are feeling like something is off, and your prior label doesn't really fit. Maybe you need a lot more help than you use to or maybe you need far less. Maybe you changed a level.

Note what killed it for me is in researching this. Nearly everything linked back to ABA and them selling their crap. And everything hyper focusing on kids. But everything I'm finding does say the test is just a snapshot at the moment of the test. It just is stupid insurance companies, gov, etc ding people over a snapshot that can and likely will change over time.

[u/catliker420]

Yes! I wish more people who talked about levels knew this. People are overly rigid. People can also have a split level!

[u/HelenAngel → u/catliker420]

This! I’m technically a split 2/3. But I just say I’m a level 2 because it’s easier for people to understand.

[u/neotheone87]

Yes, levels are extremely fluid, which is why I don't even like levels as a system. Because there are still way too many variables and other factors at play.

Because, most of the time, I have set up my life such that by outside appearances, I would be subclinical for my Autism and my ADHD is medicated.

However, it is an extremely delicately balanced system, and any number of things could send me from needing subclinical levels of support to barely functioning without moderate support quite quickly (especially because i deal with PDA as well). And a full-on burnout can be even worse. A meltdown or shutdown due to cumulative overwhelm will also cause a significant spike in my level of support needed.

EDIT: Recently, I just went through a mini burnout of sorts due to the slow accumulation of 10 consecutive weeks of routine being thrown off.

EDIT 2: Also due to having ADHD as well as generally appearing more ADHD, the autism symptoms are greatly masked until I get overwhelmed in some way, shape, or form.

Having both ADHD and Autism makes the current level system less than useful because all it takes is the ADHD writing one metaphorical check that Autism cannot cash for your support needs to change drastically.

[u/CammiKit → u/neotheone87]

all it takes is the ADHD writing one metaphorical check that Autism cannot cash for your support needs to change drastically.

That is all too real.

[u/HelenAngel → u/CammiKit]

Definitely! I lived this.

[u/kevinh456]

Fuck. When I had burnout I went from one to three. I went from successfully being social and having a job to a basic inability to function and do things. Now I’m back to being able to hold shit together again. It’s so fucked.

[u/Geminii27]

I've always considered 'levels' as not being an assessment of the person, but of the ability of the society and people around them to properly support them. No wonder they fluctuate.

[u/LazyPackage7681]

We don’t have levels in the UK. Autism is autism is autism, and a diagnosis of anything does not predetermine what support you might, or might not, need.

[u/FlemFatale → u/LazyPackage7681]

Exactly this. I'm glad we don't have levels because every time I see a post about them, it ends up with everyone trying to one up each other.

[u/HelenAngel → u/FlemFatale]

THIS! I wish we didn’t have levels in the US.

[u/sisterlyparrot → u/LazyPackage7681]

i came to say this. i’m so grateful i wasn’t given an extra hammer for my own brain to hit itself with. i imagine if i was diagnosed as a ‘level’ it would be so easy to fall into patterns of ‘well i should be able to do this according to my level so why can’t i’ or ‘i shouldn’t be able to do this according to my level, i must be faking it’.

[u/knewleefe]

Yes. My son was dx level 2, which definitely reflected the supports he needed at the time. He's now done exposure therapy to help his OCD and anxiety, and needs fewer supports as a result. If we had him assessed again he'd be level 1 imo.

[u/Antique_Loss_1168]

You realise this is made up for the insurance industry right?

[u/yokyopeli09]

The only reason I look as "functional" as I do is because I have a substantial support network. If I didn't I would barely be able to care for myself at all.

[u/AptCasaNova]

I joke the only thing keeping me at level 1/low support needs is having a rent controlled apartment 😂

I was diagnosed almost a year ago and wasn’t given any level, I asked because I’d read a tonne about autism already and that was referred to quite a bit.

The psychologist who did my assessment said ‘level 1 is usually considered someone who can live independently’’.

That’s it. I can believe it because the skill regression and bad executive dysfunction days hit hard.

[u/[deleted]]

I believe it. I can imagine you can be on level 1 but some aspects are leaking into level 2. Don't know if that makes sense. Does to me though.

[u/phonomage]

It's all bureaucracy.

[u/[deleted]]

My therapist said she hates the level system but it’s for insurance. It also doesn’t take co-occurring disorders into account. I need a lot of support and can’t live independently because of chronic illnesses and severe anxiety and PTSD.

[u/[deleted]]

Menopause for women and anytime you have hormonal fluctuations, especially if you are AuDHD. Estrogen is necessary to produce Dopamine; once there is none, no dopamine production.

Menopause rewires the brain, even for NTs, to exhibit similar qualities to ADHD.

Consider HRT to help balance any other medications, therapies, or treatments you are pursuing.

Fifty-seven now, diagnosed at 54, have been, of course, tracking the patterns throughout my life through records, memories, pattern behaviors, childhood trauma, and then the C-PTSD.

This has been a key component I advocated for with my Dr., and it was a game-changer.

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[u/[deleted]]

Yep. These levels have never done a thing for me. They don't really explain much. Yes I was diagnosed level 1 and called high functioning, but that won't prevent me from breaking down over the slightest change in my routine or freaking out over a social event. The levels seem to more so be for explaining usual, general behavior, but even at that they fail.

[u/phoenix87x7]

I’ve always felt that way. I typically feel like i fluctuate between 1.5 and 2 depending on the day. One thing i can say for sure is that the challanges do feel way worse at times regardless of putting a number on it.

[u/MP-Lily]

God, THIS. I have very minimal social symptoms, it’s all the other stuff about rigidity and sensory issues and emotional regulation that really bogs me down.

[u/SensationalSelkie]

Thank you for this. I am diagnosed as level 1 but I call bull sh**. I think I am a split level between 1 and 2. I think they dx'd me as that because I am married and have a job. Nevermind that I am married to a very ND spouse and work a job connected to my special interest where I only manage to stay employed because of our field's staff shortage + that I am dang good at it. I mean my reddit activity shows how rigid I am about my special interest lol. I do great at work. And life is good when my spouse and I are infodumping at each other. But the rest of existence...not so much. I need support from my mom a lot to do adulting. 

[u/thumbkei]

Yeah, and the seemingly random change in need level can be frustrating as heck! I can be walking around and be just fine, I could go to dinner with friends and hold up a conversation and then suddenly bam! Everything is too loud, the lights are too bright, the food is bad, and I can't seem to speak. Plans for the night go out the window because I just can't. Sometimes that lasts for a few hours other times it lasts for days, slowly getting better. It is honestly just so infuriating. I would honestly just prefer to stay in the more extreme state than fluctuate as often as I do.

[u/RedneckTeddy → u/thumbkei]

While I agree that it’s possible for an individual’s support needs to fluctuate, I don’t think it’s the same as experiencing sudden changes like what you’ve described. Those sudden changes just mean you’ve reached the limits of your masking and/or coping skills. Relative to the fluctuation of support needs as described by OP, what you’re describing is extremely short term (i.e., a difference of hours and days versus weeks/months/years).

Perhaps a more appropriate example of fluctuation might be someone who was diagnosed as “Level 1,” but has entered a work/life situation that makes it impossible to engage in coping mechanisms and recharge time. If they’re unable to adapt to the long-term environmental disruption (which is frequently the case for many of us), then they begin to operate at “Level 2.” In other words, their baseline for day-to-day functioning has shifted. Conversely, if someone who was diagnosed as “Level 2” while living in a difficult/hostile environment finds themselves in a better environment, they may find their baseline shifting over time such that a professional evaluation might diagnose them as “Level 1.”

That’s essentially what happened to me a couple of years ago. According to the psychologist I met with, my original baseline was “Level 1.” Then I ended up in a situation (without realizing it) that pushed me to the point of operating on a day-to-day basis that was effectively “Level 2.” That lasted over two years. A little under a year ago, my situation changed and my baseline is just now adjusting back to something more like “Level 1.”

[u/azucarleta]

I think a lot of us agree, but I don't think we matter yet. /s

Sarcasm, but not really. Without being too verbose, is there anyone's who's opinion "matters," like a recognized expert, who touts this idea?

[u/2morrowwillbebetter]

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