Autism: Functioning Labels Don’t Work — What Does?

Autistic people have been saying for a while that we don’t like functioning labels. There’s been an ocean of electrons used up in blog posts, podcasts, Twitter threads, and Facebook rants about it. I’m not going to recreate the wheel.

But folks who like using functioning labels (who are mostly parents and autism activists but also a minority of autistic people) have one good point. Not every autistic person is the same and the experiences of, for instance, a nonverbal autistic person and a hyper-verbal autistic person will vary widely.

The problem is that those are often the same person. I, for instance, can be both hyper-verbal and nonverbal depending on the situation and my current mental load.

(Mental load is a me-term, by the way. I use it to refer to how much my brain is trying to do at any given moment. High mental load means my brain has a good chance of running out of processing power and ‘BSOD-ing’ (blue screen of death-ing). That moment where your brain just freezes up and you can’t think, even to answer a very simple question like ‘what’s for dinner?’)

Becoming nonverbal seems to be one of the ways my brain copes with high mental load. Processing power is re-routed from the verbal parts of my brain to other, more critical areas. Or at least, that’s the metaphor that best describes what it feels like.

That’s not the only thing that can have me ‘going nonverbal’. Hopefully, it gives you some idea of what I’m dealing with and why you can’t assume I’m ‘high functioning’ because I manage a single conversation well. Or have an active Twitter account.

Do We Need Labels at All?

In spite of how autistic people’s functioning is much more varied than the terms ‘high’ and ‘low’ functioning make it seem, it really would be helpful to have a way to discuss the needs of Autistic person A, how they compare to the needs of autistic person B. Because if you can do that, you can say ‘this therapy/support/treatment will be most helpful to people who experience autism like Autistic person A, but is not very helpful to people like autistic person B.’ And getting appropriate help will be a lot easier.

Amazingly – there is a way to discuss that. A way that is much better than the binary ‘high’ and ‘low’ functioning.

Even more amazingly, it’s part of the official diagnostic criteria. As in, this is what doctors and researchers actually use to differentiate autistic people’s needs. Or should. Because despite this ACTUALLY BEING IN THE DSM, we still see research papers about ‘high functioning autistics…’

Sigh.

Now, the DSM isn’t great. In fact, I have a whole rant saved about how not-great the DSM criteria for autism spectrum disorder are.

But this is something the DSM got right. Or at least, closer to right than anyone else has managed.

Before we get into that though, there is something I want to get off my chest.

There is no such fucking thing as ‘autism level 1’. People talking about ‘levels’ of autism are distorting the DSM’s supporting needs system and don’t know what the fuck they are talking about. ANYONE who is using ‘levels’ of autism needs to sit the fuck down with someone who ACTUALLY FUCKING UNDERSTANDS AUTISM AND THE DSM. Learn how they are taking a really decent idea and fucking it up for everyone.

Ahem.

With that out of the way… let’s take a look at the best system I’ve seen for classifying different autistic experiences and the needs of autistic people. Even if it is from the fucking DSM.

Support Needs Levels

For folks who want to check it out, the not very readable official chart from the DSM is down at the bottom of the page. (The ideas are decent, the presentation not so much.)

But here’s the basic idea:

This system focuses on support needs.

Support needs are better for individuals than attempting to establish ‘functioning’ levels. 

How much support do I need to do the things I want or need to do in my daily life? Well, I live in a small town with next to now public transportation. So I need to either be able to drive or a way to get around town. If I lived in NYC, I wouldn’t need support to get around, because buses and subways are a thing there. But someone else who can drive fine but can’t understand subway maps might need support in the city, where I don’t.

That’s support needs, in general.

Now let’s talk about autistic support needs.

Autism is officially considered to cause problems in two main areas: Social communication and restrictive, repetitive behaviors. As anyone who actually has autism knows, these categories are entirely inadequate. But they are still better than anything else going, so we work with it.

This is why I say there is no such thing as ‘autism level 1’. It’s ‘level 1 support needs in…’ In what? Which category? Or both?

Severity levels run from level 1 (least severe) to level 3 (most severe).

Now, remember the goal of support needs is to identify what support we need to be able to live our lives. Someone who has support and doesn’t seem to have problems still has support needs. They may look like they don’t, but a duck also looks like it’s just putzing along while its legs are pumping a mile a minute under the water. Just because you can’t see it doesn’t mean it’s not there.

Now, most folks who can pull off the duck routine are going to be in a level 1 situation. If you need significant supports, those supports are likely to be obvious and/or are likely to be not fully adequate.

With me so far?

Okay, last point and the most important one – remember my example about driving and NYC? Support needs can be situational. There was a time a few years ago when my Social communication would likely have rated support needs 3. Or high on level 2. I carried a tablet or phone with me everywhere to type because very often I couldn’t talk. I didn’t interact with strangers unless I absolutely had to and rarely interacted with family and friends.

It turned out, I had a B12 deficiency. A pretty massive one. Plus postpartum depression and a bunch of other stuff going on. When I got the other problems treated, my ability to communicate and handle social stuff improved immensely. These days I’m level 1 social communication.

That’s an internal situation affecting support needs. But there can be external situations too. If I tried to go back to school, for instance, I’d likely end up back at level 2 within a few weeks. And if I managed to keep going, level 3 by the end of the semester. The added mental load (from constant socializing, from needing to adhere to a schedule that didn’t suit my life and needs, from the actual school work) would result in severe burnout and ‘regression’ within a month.

I do as well as I do because I have had significant help in structuring my life to that end.

Using the DSM Support Needs Levels

The support needs severity levels run from level 1 (least bad) to level 3 (most bad). For reasons I don’t think HAVE a reasonable explanation, everything that isn’t social stuff, they through into restrictive, repetitive behaviors. So sensory issues (for instance) count in the restrictive, repetitive area. 

Often, only one support needs category will apply. For instance, I frequently see questions about autistic people and our need for routines. That’s a restricted and repetitive behavior question. A person’s communication needs won’t impact their need for routine. It may impact what their routine is, but that is another matter.

Now, not many folks know about support needs levels. But with how common that ‘level 1, 2, 3 autism’ thing has gotten, most folks will probably understand. “I’m autistic/my kid is autistic with level 3 social needs, how can I/they find a job?”

See how by phrasing it this way, the person looking for help has made clear what their situation is without making assumptions about anyone else’s situation? And they will likely get more useful help that if they just said ‘low functioning’. Answers will focus on the social aspects of jobs like managing interviews or finding a job with minimal social interaction. Instead of “try for x, y, or z jobs. They are very repetitive and that works better for many autistic people!” This answer may be correct, but it isn’t as likely to be helpful as a more socially-focused answer.

This went a lot longer than I’d planned, but I hope folks found it helpful. As promised here is the official chart, and you can find the full diagnostic criteria here.

Table 1 Severity levels for autism spectrum disorder

Severity level Social communication Restricted, repetitive behaviors
Level 3 “Requiring very substantial support” Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches. Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.
Level 2 “Requiring substantial support” Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and who has markedly odd nonverbal communication. Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.
Level 1 “Requiring support” 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. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful. Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

 

Toss some support my way by becoming a Patron. Get early access to my books and more.