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What Do We Mean By Levels of Autism?

What Do We Mean By Levels of Autism?

In many diagnostic reports, autistic people are told they are either “Level 1, or 2 or 3 autism.” All levels require support, but Level 1 allegedly needs the least support, and Level 3 allegedly needs the most support. Autistic people who are “Level 3” are usually assumed to have little or no ability to use mouth-words to communicate, and assumed to need constant supervision for the whole of their life.

I have problems with understanding how these three groups happened. Firstly, it is a fiction that there are these three neat categories into which we can be placed. Apparently, these will apply to everything we are and do, are caused solely by “autism,” and stay the same for life. Really?

Let’s think about this.

I started life as a nonspeaking autistic child, terrified of changes in routine, flapping and rocking in a corner, lining things up, completely bewildered about how to relate to others. I needed a lot of support and structure for some things.

So, if a diagnostic person had seen me, it’s not unreasonable that they would have given me Level 3, yes?

Through the next decade, I taught myself to speak to others. It went wrong, time after time. Wrong timings, voice tone, content—whatever I said was WRONG, and often got me further isolated. But I had been punished into not flapping and rocking, so I looked fairly “normal” a lot of the time. So, if a diagnostic team had seen me at this stage, perhaps I would have been given Level 2, eh?

Over the next decade, I found a lot of autistic people who specialised like I did, and we were pretty good at our specialist focused stuff. So we found ways to make a living, together, supporting each other. A lot of the time, we were communicating in autistic ways that made sense to us. I hid being autistic with everyone else, in an exhausting and depressing effort to ‘mask’ or camouflage being autistic. Why? To avoid bullying, ostracism and poverty.

It would have been easy to miss how much support I was getting from my autistic family and neurodivergent work colleagues. It was easy to miss how often I couldn’t speak, how often I couldn’t access environments, how often I was so exhausted by the battle for even basic things in society that I could barely function. So, a diagnostic person viewing me at this point might allocate level 1? No need to support me, basically. Like so many millions of autistic people across the world, I was left to cope on my own, for decade after decade, because I didn’t “look” like the stereotype of autism.

Same person, potentially three different levels. What’s going on here, eh?

It gets more complicated. If something very unexpected happens, during sensory overload, I’m back to not being able to speak, and rocking, and flapping, and maybe running away. If a diagnostic person tried to interview me during that, they might think, “Level 3.”

Are we starting to understand how meaningless those labels may be, when applied for life?

I’ve spent three decades working with autistic people of all kinds, in all sorts of situations from workplaces to prisons, from care homes to voluntary organisations. I’ve been part of their journeys, from disaster to triumph and everything in between. With excellent support from affirming academic staff, I finally studied for four hard years of qualifications in autism. I also support other autistic people in our family.  Including individuals with high support needs at present.

But…what do we mean by support?  Support in what?

Support in speaking?

Support in dressing?

Support in planning daily activities and work?

Support in cooking? In bathing? In understanding what nonautistic people mean?

When?  Today, this evening, tomorrow, next week? Variably?

It’s variable. Every bit of it. Autism is a dynamic thing. Our sensory and routine-based needs vary according to age, and how exhausted we are, whether we are in pain, whether we are comfortable with those around us. They vary according to our sensory environment, how well we are able to plan ahead from the information given to us. They vary according to background situations such as depression, anxiety, trauma. How are we picking a day on which to award a “level,” and declaring that’s a fixed thing for life?

As is often said, generally  “High functioning” or “Level 1” tends to mean, “We won’t bother to support you.” “Low functioning” or “Level 3” tends to mean, “We won’t bother to ask why you are distressed, because obviously all ‘low functioning’ people just ‘misbehave’ all the time. It’s your autism.”

It worries me so much that we place autistic people into fixed categories and expect them to be meaningful and empowering, for them, or for their families.

What do we know about “Level 3” autism, medically?  There has been research. This is what it said: “There was a positive correlation between the number of medical comorbidities… and DSM 5-rated severity of ASD.” So, autistic people given Level 3 often had a wide range of medical situations happening. For example epilepsy, gastric situations, endocrine situations, sleep disorders, pain conditions etc. Pain and exhaustion aplenty, it seems. Is it “Level 3 autism,” or a person who needs better medical help and is too overwhelmed by those other things to be able to cope well?

The more pain and exhaustion, the more “behaviour.”  And the more “behaviour,” the more someone may say, “Well, what can we expect?  They are Level 3 autism, after all.”  We need to be far more curious and compassionate about why we are seeing and hearing distressed behaviour.  Is it a “tantrum,” or a desperate effort to say something is very wrong?

We’re not testing for health situations, a lot of the time.  We’ve therefore no clue what the ‘behaviour’ relates to. Instead, behaviour teams are too often brought in to stop the person showing their distress.  How can that possibly be a good thing?

How are we missing so many of these medical conditions?  There are so many situations for “Level 3” autistic people where teams say, “So, has the person had a sensory assessment?  Oh, you haven’t done one?  What about a hearing or eyesight assessment?  No?  Has anyone done a recent dental checkup to check for tooth pain or jaw pain?  No?  Has anyone carried out hypermobility checks, since we know there’s a possible link, and we know it can cause pain, difficulties moving, etc?  No?  Have we worked with our speech and language specialists to ensure we have the best possible communication enabled?  No?  Have they seen their GP to get checked out for hidden injuries or medical conditions that they cannot report?  No?” Just some of the mysteries of things-not-checked-for.

I have lost count of how many time we’ve had versions of these conversations, in the advisory work I have done with teams. Instead, the person’s teams tend to add more and more “behaviour support.”

The idea of “Level 3 autism” has fuelled a lot of very strange information articles. Often, the “Level 3’ autistic person exists as a series of faults to be corrected. Often, they are described as individuals who don’t care about anyone but themselves, and behave entirely irrationally. It’s awful, almost always untrue, and those narratives can devastate the lives of the autistic people concerned—as well as often offering their families nothing but hopelessness. Often the person can expect a life of being researched without their consent or assent, assumed to be somehow less than human and not in need of proper thought into ethics, potential harms from interventions, etc.

I’m not a fan of “levels of autism.” If an autistic individual makes a personal choice to refer to themselves as one of these levels, I can respect their decision. When it’s imposed meaninglessly by others, it’s too often disastrous.

Any support plan needs to be very regularly updated. People’s support teams do well when they describe what support the person needs, who from (safe, trusting relationships are key), and when. It’s about adaptability, really listening, really collaborating with the person. It’s about good modern training, and about teams, family and friends around the person reflecting on their own behaviour, their own attitudes and misunderstandings.

Our loved autistic people are not a “Level 1, 2 or 3 Autism Spectrum Disorder.” They are fellow human beings, with very valid ways of being, of experiencing the world, of communicating, and of expressing their distress. All autistic people need the world to be a doable, caring and supportive place.

By working together to create responsive support and inclusion, as families, friends, teams, and the autistic individuals, we can enable a quality of life that is truly worthwhile, and which adapts properly to change.

child's crayon illustration of a tall multistory building with people trying to climb up the sides
Image by DALL·E

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