Diagnostic Levels Explained

The first and most important thing to understand about the diagnostic levels of autism, is that they are only implemented when one is diagnosed based of the DSM criteria. Anyone diagnosed based of the ICD or any other criteria, will most likely not be given a level upon diagnosis. Not everyone is diagnosed with a level, and that means that not everyone will know for sure what level they are.

Another important thing to note, is that the diagnostic levels only serve a clinical purpose, to give a very simplified idea of one’s support needs to allow them access to the help they need. In reality, placing all autistic people into 3 clear, separate boxes, simply is not possible, nor is it productive in daily life.

Levels are seperate from support needs for this reason. They are purely clinical.

There are 3 diagnostic levels that one may be given when diagnosed:

Level one - requires support

Level two - requires substantial support

Level three - requires very substantial support

It is also important to note that the DSM itself states that these levels can change throughout a lifetime, and fluctate based on context:

“The severity specifiers may be used to describe succinctly the current symptomology (which may fall below level 1), with the recognition that severity may vary by context and fluctuate over time.”

But what many people don’t know, is that you’re actually supposed to be given two levels upon diagnosis. One level for social and communication difficulties, and one level for restrictive and repetitive behaviours.

An “average” level may be given that combines the two, but the DSM states that two seperate levels should be given.

“Severity of social communication difficulties and restricted, repetitive behaviours should be separately rated.”

And I feel that this actually makes a lot of sense. Personally, I feel like I am much more affected in the social and communication aspect of autism than in the restrictive/repetitive behaviours side of things.

I think this is partly why, during my diagnosis, I was told I lie somewhere between level 1 and 2. In reality, i’m level 1 in some areas and level 2 in others.

Every autistic person is so different, and will be affected by autism differently. So while some may struggle more with routines and change, others may struggle more with communication, others may struggle more with sensory processing. So to me, it makes sense to split up these levels, to give a more comprehensive review of someone’s support needs, rather that broadly placing them into one of three boxes in general.

So, let’s explain these levels in a bit more detail, as they should be, split into these two seperate categories.

Social Communication (in the words of the DSM):

Level 1:

Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.

Level 2:

Marked deficits in verbal and non-verbal social communication skills; social impairment apparent even with supports in place. Limited initiation of social interactions; and reduced or abnormal responses to social overtures from others.

Level 3:

Severe deficits in verbal and nonverbal social communications skills cause severe impairments in functioning. Very limited initiation of social interactions, and minimal response to social overtures from others.

Social Communication (in my own, less clinical words):

Level 1:

You may experience some struggles in communicating, and find talking harder than the average person. You may be able to recognise social cues, but not necessarily understand their purpose, which makes them harder to follow and easier to mess up. You may find it hard to make friends and conversations tend to end quickly. You may be able to mask your struggles to an extent where others won't recognise that you're different, and might just assume you're a bit "quirky". You understand most idioms and phrases, but one's you've never heard before you may take literally, or struggle to understand what they mean. You can recognise most facial expressions, but sometimes struggle to see the subtler expressions. You may struggle to communicate your deep emotions and needs, but can do it with those you're close to.

Level 2:

Your communication style is noticeably different. Your voice or tone might have unique characteristics that often get pointed out by strangers, like being too loud, too quiet, too high, too low, too monotone, etc. You never start conversations unless absolutely necessary, especially with strangers or people you’re not close to. When others try to converse with you, your responses are short and end the conversation immediately. You may have to take extra time to process what is being said to you, and therefore take longer to respond. Recognising facial expressions and social cues is very difficult. You may be able to follow the most basic social cues and rules, but struggle to stick to the more nuanced and confusing ones. You don't understand most idioms or phrases, and take things literally a lot of the time. You struggle to mask your communication struggles, and can only do basic surface level masking, like supressing stims or forcing eyecontact. Even when masked, people will recognise that you are at least different, if not disabled. You may struggle to communicate your emotions and needs, even to those you're close to. You may often struggle in silence until you physically cannot anymore.

Level 3:

You may have very limited verbal capability, and rely on AAC or other forms of communication. You cannot read social cues or facial expressions and do not perform them yourself. You take everything literally and struggle to follow conversations between neurotypicals. You struggle to communicate your needs to anyone, and will struggle in silence until someone else steps in for you. You may rely on others asking you if/what you need in order to get your needs met.

Restricted/Repetitive Behaviours (in the words of the DSM):

Level 1:

Inflexibility of behaviour causes significant intereference with functioning in one or more contexts. Difficulty in switching between activities. Problems of organisation and planning hamper independence.

Level 2:

Inflexibility of behaviour, difficulty coping with change, or other restricted/repetitive behaviours appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty in changing focus or action.

Level 3:

Inflexibility of behaviour, extreme difficulty coping with change, or other restricted/repetitive behaviours markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.

Restricted/Repetitive Behaviours (in my own, less clinical words):

Level 1:

You may like things to be done a certain way and feel uncomfortable when they are not - for example, you may like to wash up cutlery in a specific way, and if someone else washes up your cutlery, it will make you feel uncomfortable, and you might feel a need to rewash it yourself to make sure it's done how you like.

If routines or plans go wrong or get thrown off, you may feel very uncomfortable - for example, something interrupting your morning routine, or a delayed train on a big day out, will make you very uncomfortable, anxious, and on bad days may trigger meltdowns. You may even avoid committing to solid routines or plans to try and avoid the discomfort.

You may stim frequently, especially when alone. You might mask your stims by stopping them completely, or redirecting to subtler stims.

Your interests may be very intense in a way that affects your daily life - for example, you might get so hyperfocused on your interests that you forget to eat, hydrate, or use the bathroom, or it may drain your bank account!

You may find major changes in activity or environment difficult to cope with. You need a good amount of warning before changes are to happen. You might get snappy with people if they interrupt you while you're focused on an activity. Big life changes could cause meltdowns or burnout.

(note, you only need 2 of the 4 categories in RRBs to fit the diagnostic criteria!)

Level 2:

You may like things to be done in a certain way and will correct others who do it wrong, no matter what - for example, if you like your cutlery washed in a specific way, you will insist on always washing up, and will immediately take over if someone else tries to do it in a way you don't like. You may constantly inspect cutlery to make sure its cleaned right.

If routines or plans go wrong you may feel an intense anxiety or possibly have meltdowns/shutdowns - for example, you may have a structured daily routine, and be easily thrown off by interruptions or a late bus. It will only take a few interruptions to cause a meltdown/shutdown.

Your interests may be intense, to where you struggle to engage in anything that isn’t your interests - For example, you will always find a way to relate everything back to your interest wherever possible, and redirect conversations to it very quickly.

You may stim frequently and in ways that are noticeable to strangers. You will struggle more to mask your stims, only able to do so in dire situations.

You may find changes to activity or environment difficult to cope with. A sudden change without warning may cause meltdowns or shutdowns. You may rely heavily on coping strategies when changing environments.

Level 3:

You may have very frequent meltdowns as caused by interruptions to activities or changes in plan or environment. You rely on others to help you to get through these changes, and you have to take it all very slowly.

You might get very angry at people who do things in a way that you don’t like, which may also cause meltdowns. You might get agressive towards people who do things in ways you don't agree with.

You may stim frequently, including in ways that are harmful or destructive. You heavily rely on stimming to help you get through a day. You cannot mask stims at all.

Your interests are intense and you engage in it wherever possible. Engaging in activities that aren't related to your interests is near impossible and you require constant support with those boring daily tasks.

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Hopefully this helped you to understand the levels system, what it’s for, and perhaps where you fit in these levels. I also want to adress that I know that my personal definitions of level three in both categories is shorter than the others, and I think I have to be honest and say that that's because it's so much further away from my own experiences as a generally level 1 autistic. But i'd be happy to hear others' input for things that could be added to that.

It’s also important to remember that these levels are trying to box the whole of the autism spectrum into three (or six, as the case may be) boxes. Autism is not three categories, it’s a spectrum, so you may not fit cleanly into one level. You may be somewhere between levels, and that’s ok too. Again, these levels are purely for clinical purposes, so they're not even really that productive for us as autistic people in the community. But I do think it's worth while to discuss this seperation of social communication and RRBs, because I think there may be quite a few of us out there who feel that one affect us more or less than the other.

And if you don’t care about levels and don’t want to attempt to categorise yourself in any way, that’s also ok too. Saying you're autistic and simply stating how things affect you when it's relevant should be enough. You should never feel a need to categorise yourself and try and fit into one of few boxes.