#autism levels

Why are y’all so offended by the idea that some autistic people have significantly higher support needs than you do and may need a concise, easily understood way to quickly communicate those needs to others (including other autistic people who are level 1 as opposed to 2/3 and may have a hard time understanding that some other autistic people generally struggle more with autism symptoms on a regular basis than they do, which is made easier to understand by pointing out the level of comparatively higher support needs?)

Pointing out that there are other people with the same disability who are more disabled by it than you are is not necessarily minimizing your disability (depending on how and why it is pointed out, context matters of course), in some cases it’s just a neutral acknowledgement of reality that isn’t meant to downplay anyone else’s experiences, although I do understand level 1 autistic people (and for that matter other levels too, especially if they are a part of other marginalized groups- I’ve experienced this as a level 2 myself) have had their disability downplayed a lot and therefore they are hypervigilant about being treated this way.

They are diagnostic tools, for one, not destinies. Close-enough is often good-enough in the world of medicine. For any number of reason someone might not end up with a level, including all the people diagnosed before levels were a thing, since they are rather recent. Some have split levels. Some get evaluated as a different level at different times in their life. The leveling system is not in world-wide use, either, so that's a lot of modern autism diagnoses without an accompanying level. And on the other side, many autistic people will never be diagnosed, and therefore never given a level, even if they live somewhere that uses them.

So when I see statements that include "the level ___'s" as if it's a cohesive category, it just doesn't make sense to me. You can only confidently make that statement if you are talking about a bunch of specific people who you all know have the same diagnosed level.

An autistic person being "level ___" is not a foregone conclusion. You can't make that judgement based on looking at them or talking to them or even knowing them quite well, because of, well, all the reasons above. To look at someone and say, as someone who isn't their doctor, "I think you are this level, forever" is completely missing the point.

I don't think it's necessarily useless to bring up autism levels, even when talking about large groups of people, but I see it employed in such reductive ways that make it feel like functioning labels never left, they just changed their disguises.

Support needs encompass the whole person and all their possible disabilities, not just their autism, and can be evaluated by an individual and their care team, and colloquially has uses for communicating how much help someone needs day to day. Even still, I see it used as a euphemism for what is supposed to be a (derogatory) functioning label. The person using it that way has no idea why it's bad to think of people like that, only that certain words are no longer the "correct" ones to use. Someone says "level 3" and you know they mean low functioning, or someone says "level 1" and you know they mean "not-really-autistic" and level 2 gets brought up so infrequently by non-autistic people you would think level 2's were incredible rare - not a major portion of the diagnosed autistic population.

I think that part makes it hard to talk about the language of levels, support needs, "severity", etc, in a more neutral fashion, especially among the general non-autistic public. A lot of the attitudes and ableist thinking hasn't changed, but the words have, and laymen use of medical words can be dicey even at the best of times.

A lot of what I see is people saying they're bad, there's no need for them and that they have no use, that they're basically functioning labels and ableist, that we shouldn't be comparing ourselves and each other, and that they somehow don't include high masking people.

None of these things are true, they ignore the fact that often these labels are self-identifiers, and honestly, I think when having discussions on terminology like autism levels and support needs, the voices of levels 2-3 and HrSN people need to be centred. We're the people who need these terms, we're the people who often depend on them to actually communicate our needs, so when people go around saying these terms are bad without having so much as an afterthought about us it is really upsetting and hurtful.

Hiii! Thanks for the ask!

There are three levels of autism, which explain how much support the person requires, and how and to what degree the symptoms/traits impact them. Not everyone is diagnosed with a level, it depends on who assesses you and where you live.

Level 1 autism is the most common level of autism, and generally used to be called “Asperger’s” or “mild autism.” This level is defined as “requiring support.” My family member has this level. They can live alone, go to college and hold a job, but they still need some accommodations to make life sustainable and comfortable! My family member can complete all basic activities of daily living (getting dressed, eating, toileting, etc) and sometimes need a bit of prompting and help with Instrumental activities of daily living, but overall can complete all tasks fairly independently. My family member can usually communicate effectively, but gets confused sometimes figuring out tone, hidden meanings, or subtle emotions. They can understand most social rules but have trouble applying them.

Level 2 autism is in the middle of the spectrum, defined as “requiring substantial support.” I have level 2 autism, I will not be able to live completely independently, and will either live in a group home, or live in my own house with support workers. I need significant prompting to complete many of the bADLs, and I cannot complete most iADLs without hand over hand guidance, support and explanations through the whole process. Some iADLs I cannot complete yet even with help. My verbal communication is okay. I can speak most of the time, but often I cannot use my tone correctly, or the words come out non-coherent or in a way that doesn’t reflect what I wanted to say. I use an AAC device part time because of this. I cannot read facial expressions or body language unless they are very obvious, and I cannot recognize different tones unless they are clearly pronounced. I don’t get figures of speech other than the ones I’ve memorized. I don’t understand about half of social rules, and need help applying them. When I do apply them, I often still don’t understand what I’m doing or why I doing it.

Level 3 autism is often synonymous with “severe” or “profound” autism. This is defined as requiring “very substantial support.” These folks, from what I know, need substantial help with bADLs, and cannot complete iADLs even with assistance. They have substantial communication difficulties, and often have very limited verbal speech. They need 1 to 1 support, all day, every day. I don’t know much about level 3 autism other than this, because I don’t currently have anyone close in my life with this diagnosis.

Now, what IS autism at it's core?

Autism spectrum disorder (ASD or autism): Autism is a neurological condition that affects many parts of the brain, it affects sensory processing, emotional regulation, social skills development, motor skills, etc. it is a diverse spectrum where everyone with it can experience it very differently, so do not assume that if you meet one person with it that you know all there is to it.

People with autism have support needs and levels, but what ARE support needs and levels and what's the difference between them?

Support needs can be 1 of 2 things typically

1: how much support you need on a regular basis

"I'm high support needs and use high tech AAC to communicate"

2: how much support you need right then

"I am having a low support needs day"

This can be alongside a diagnosis or part of general language

Levels are a baseline for what your support needs usually are, these can change but are not an overnight type thing usually

Levels are typically part of diagnosing autism, I am diagnosed with level 2 autism with moderate to high support needs. I do not have low support need days other than what is low support needs for ME (if I am able to brush my teeth on my own at all that is a low support needs day)

Level 1 autism is also referred to as low support needs autism

Here's an important distinction: low support needs does NOT mean no support needs. While someone with high support needs may need help dressing/can't change themselves, someone with low support needs may need a reminder to get dressed instead. Both are requiring support, one needs more help, the other needs less, this does not mean one is more valid or one is less valid, they are both deserving of support.

Most people with low support needs autism (assuming they do not have other disabilities that complicate them) can usually live mostly or fully independent lives, support for them in adulthood is typically closer to needing reminders, needing people to plan things in advance, work accommodations, sensory aids, dim lighting, etc.

In childhood, support for them (if they get early intervention, though usually many people with LSN do not get early intervention) usually means being allowed sensory aids, teaching social skills, practicing daily living skills, teaching self regulation (all children need to be taught this, but autistic children regardless of level or support needs need this more), etc.

Level 2 autism is referred to as moderate support needs autism. There is lots of variation here more so than in level 1 or 3, that's because this is where people are placed when they don't quite fit either box enough

Here's an important distinction: moderate support needs can look entirely different for each individual. Across the whole spectrum everyone's autism is different, yes, but level 2 has more variation than level 1 or level 3, so if you meet one person with level 2 who has little to no support needs in communication and comes off as just socially awkward and then you meet another person with level 2 autism who uses AAC that does not mean the other person was lying about being level 2, it means their support needs were higher in areas other than communication and social skills

In adulthood, support for them also varies drastically. Some people with MSN can get by independently, some people will always need a caregiver, whether that caregiver has to be with them daily, or comes to visit once a week to make sure things are going fine. Support can vary anywhere from reminders and alarms, to help with executive function issues, regulation skills, helping with things like paying bills, making grocery lists, helping with clothing, etc.

In childhood, support for level 2 autism often looks like sensory aids, commonly stuff like noise cancelling headphones, sunglasses, weighted blankets or plushies, fidgets, etc. helping them to talk to others, teaching social and/or verbal skills, focusing on teaching daily living tasks that they might struggle with (cleaning, folding clothes, doing the laundry, bathing, etc.), they may or may not attend ABA therapy or other similar therapies to help (we are going to assume that these are helpful therapies, not the abusive practices outdated places use, but places that are actually trying to help)

Level 3 autism is referred to as high support needs autism, people with high support needs are *typically* incapable of ever being fully independent and will usually always need lots of support

Here's an important distinction: lack of independence/full independence does NOT mean low intelligence or that they want to be babied, or that they have no thoughts. Autistic people with high support needs have thoughts as complex as anyone's, most do not want to be talked down to like toddlers if they are grown adults.

In adulthood, support often looks like frequent breaks during stressful activities, teaching daily living skills, job skills if they are able (not all are able and there's nothing wrong with that!), teaching self regulation, needing reminders and alarms, help to get ready for the day, hygiene help, executive function help, they may need an AAC, etc. many people with HSN are unable to live without a part time or full time caregiver. This is not due to laziness or unwillingness to succeed, this is due to physical incapability of being able to live fully independent lives, do not treat it as anything other. They are typically able to still live full and meaningful lives if they have the right supports.

In childhood, support often looks like sensory aids, reminders and alarms, help with basic tasks, they may need to be put into special education classrooms (nothing wrong with that I don't want to see any bullying or joking about that), AAC, often times ABA or similar therapies are very helpful for children with HSN autism (again, we are assuming non harmful practices, not the harmful outdated ones), lots of help with regulating themselves, teaching social and/or verbal skills, etc.

You can also have mixed levels or levels with a support need label too, such as level 1/2 or level 2/3, or like me I have level 2 autism with moderate to high support needs, that's how I was diagnosed. I won't go into full detail about all of that because that'd take way too long lol but I think y'all get the gist of that stuff anyway

Terminology help:

Sensory aids can look like: fidget toys, weighted blankets, sensory swings, weighted vests, noise cancelling headphones/ear defenders, sunglasses, etc.

Their purpose: most sensory aids have three main goals

1: introduce good stimuli, this can be fun, calm, grounding, etc. such as fidget spinners, chewelry, tight clothing, etc.

2: reduce external stimuli, when something is too loud ear defenders can help block the noise out, or if things are too bright sunglasses can help that too

3: Mix of both, for an example: weighted blankets can both reduce external stimuli (hiding under it to block out noise and light), while adding a calming and grounded stimuli (steady weight)

AAC: this is short for augmentative & alternate communication (I think that's it? I might be wrong pls correct me if I am I'm bad at remembering stuff like that 💔)

AAC is ways for people who lack verbal communication skills to still communicate, this is not exclusive to autistic people, anyone can use an AAC.

High tech AAC: An example of high tech AAC is tablets with AAC programs or apps, so when they press a button it speaks for them

Mid tech AAC: I'm kind of tired and can't think of a good example rn, I'll come by and edit this later, but I think like those little things with buttons you can buy on amazon that have a limited vocabulary but can speak for you would count maybe?

Low tech AAC: this can be picture boards, pointing, gestures, etc.

ABA therapy: I believe ABA is short for applied behavioral analysis therapy. I think, I'm not sure tho. Again, pls correct me if I am wrong. Historically, ABA has been abusive and harmful to autistic people, in the past it was not used to help autistic people, it was a way to try to force them to conform, alongside punishments if they couldn't. Nowadays, ABA therapy in most places has gotten a reform, now they mainly focus on teaching regulation skills, helping with harmful behaviors, etc. and some places that treat autism but aren't ABA may still call themselves ABA therapy since that is, I believe, the only insurance approved therapy for autism

(take these below parts with a grain of salt I got this information from Google and so some of it may be inaccurate, if it is please correct me and I'll fix it!)

The brain has physical differences

In autism, the cerebral cortex (front and temporal lobes) is bigger in early childhood around 1-3

The frontal lobe is responsible for planning, social behaviors, and executive function

The temporal lobe is responsible for language and sensory processing

As they grow up though, this part of the brain either normalizes, or in some cases even shrinks

The amygdala is often enlarged in autism, which is responsible for emotion and threat detection. This can lead to social anxiety, heightened emotions, inappropriate responses to fear and anxiety (too intense or not intense enough), etc.

The cerebellum is often times smaller in autistic individuals, this is responsible for timing, coordination, movement, and cognition

This affects motor skills and motor planning, timing of social interactions, sensory integration, and cognitive coordination.

Corpus callosum is the connection between hemispheres, this is often smaller or thinner in autistic people.

This often contributes to odd interpretations of sensory input, uneven skill profiles, and differences in language lateralization

The hippocampus is sometimes reported to be larger, some are reported as average

When it is larger, it affects emotional memory processing

Basal ganglia is responsible for habit formation, motor control, and repetitive behaviors.

The caudate nucleus is often found to be enlarged which relates to repetitive behaviors and restrictive interests and is also involved in reward processing

Connectivity differences, in autism it is often found that neurons are overactive in local areas, but are under active and have weak communication between areas with more distance

This explains intense focus on details, difficulty with integrating different types of sensory input and other sensory processing issues.

For people who suspect they may have autism and read this because of that:

I hope this is helpful, and again remember this is not a professional testing tool, this is to spread awareness and teach, if you find any of this stuff relatable try to talk to a professional if you can, if you cannot (no money, no accessible testing places, it's unsafe, etc etc) then do research outside of social media too

To people who read this because they met someone who is autistic: