Autism ‘Symptoms’ are no such thing
Why the framing of autistic characteristics and behaviours as ‘symptoms’ is misleading, harmful and helps nobody
If autism is a disorder, or a syndrome, of course it must have symptoms. Otherwise it wouldn’t be a disorder at all, and then where would we be?
We can list them out, with the help of a diagnostic manual: to count as autistic, you must demonstrate x, y and z, and they must “cause clinically significant impairment in social, occupational, or other important areas of current functioning”.
The whole idea of symptoms is usually associated with diseases, of course, which autism… is not. As psychiatry has taken on things it sees as disorders but not diseases as such, it has imported much of the vocabulary used to describe illnesses. So a symptom is something wrong with your body or mind that’s a sign of an illness or disorder. In medicine, symptoms (experienced by the patient) are sometimes distinguished from external signs, but the distinction isn’t always clear, including in the DSM (the diagnostic manual I’m looking at) and I’m not going to get into it here.
There are a couple of serious problems with categorising signs of autism as symptoms, even leaving aside the question of whether it’s right to think of it as a disorder at all — which has, of course, been discussed extensively elsewhere. One problem is that a symptom is usually something wrong: undesirable by definition, usually a target for treatment. Another is that a symptom is often assumed to be something caused by a condition. Let’s look at how each of these assumptions breaks down when it comes to various supposed symptoms of autism.
The DSM divides autism ‘symptoms’ into two domains: “deficits in social communication and social interaction” and “Restricted, repetitive patterns of behavior, interests, or activities”.
The first ‘symptom’ listed is “Deficits in social-emotional reciprocity” — but difficulties with social-emotional reciprocity are always two-way! That’s literally what ‘reciprocity’ means, and it’s clear that it’s what it means in practice here. These difficulties arise whenever two people are not well-attuned to each other, and this affects anyone whose experiences are very different from those around them. We have extensive empirical research now, showing that putting these difficulties down as ‘deficits’ on the autistic side of any interaction is just wrong. They go both ways, and they largely drop away when autistic people communicate with each other.
Is this an appropriate target for interventions? Sure, to a point — in the same way that speakers of minority languages might be encouraged to learn the dominant language where they are. But efforts to stamp out the use of minority languages are rightly seen as gross imperialist abuses. It is widely understood that languages, ways of communicating, are profound parts of individual and community identities. Opportunities to communicate in your native tongue are often prized — even for people completely fluent in the dominant language, it can be a relief communicating in the way they feel most at home.
The second, closely related ‘symptom’ is “Deficits in nonverbal communicative behaviors used for social interaction” such as “abnormalities in eye contact and body language or deficits in understanding and use of gestures” and the third is “Deficits in developing, maintaining, and understanding relationships.”
To a large extent, these can again be put down to a mismatch in communication styles: ‘abnormal’ is just a pejorative term for ‘unusual’; and people coming from other cultures have trouble understanding and using gestures, too.
Social skills classes that are geared towards teaching autistic people how to communicate like neurotypicals, without acknowledging that autistic ways of communicating are valid, just different, are deeply problematic. They teach learners that their own ways of being are wrong and need fixing, and try to train them to behave in ways that are more acceptable to mainstream society. The skills themselves may be useful in some circumstances, but teaching people to hide their natural ways of being turns out to cause serious mental health problems. It is a constant source of strain and dissonance.
Maintaining relationships with other autistic people is rarely a much bigger problem than maintaining relationships is for anyone — although in the context of a society that is so hostile to autistic ways of being, it certainly comes with some added challenges. Many autistic people identified in adulthood discover that people they gravitated towards all their lives are also neurodivergent; many have found belonging in communities where various kinds of weirdness are expected and accepted.
The other ‘symptom domain’ is described as “Restricted, repetitive patterns of behavior, interests, or activities”, although bizarrely this category also includes sensory differences.
The first ‘symptom’ here is “Stereotyped or repetitive motor movements, use of objects, or speech”. Autistic people usually just call this stimming: we’re talking here about movements done to express emotions and self-regulate.
It is not at all clear why such movements would be a problem, except that people sometimes think they look weird. Some movements might be self-injurious, but this is largely a separate issue.
On the contrary, suppressing stims is a very real problem. Self-expression and self-regulation are important! Especially when your brain is set up in a way that often makes living in modern society very stressful.
Many psychologists now realise that trying to train autistic people not to stim was always a grave error, but it seems that ABA practitioners (who are not required to learn anything about autism) often still do this.
Next we have “Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior”. These are certainly things that can make life as an autistic person difficult, but as with stimming, what is being described here is largely a set of coping strategies. Finding the world unpredictable and confusing, with distressing sensory experiences which are often dismissed by those around you, can lead people to cling onto things they can predict, understand and control. Hopefully I don’t need to explain how dangerous it is to interpret coping strategies as symptoms to be treated.
It’s possible you could make a case for the differences underlying such experiences being ‘symptoms’, but that’s clearly not what the DSM does. What are the differences underlying the behaviours referred to? The world is unpredictable and confusing for autistic people largely because other people process it so differently: they notice different things, make different assumptions, reach different conclusions. They seem to operate by different rules, which nobody ever explains very clearly, and they don’t seem to understand autistic people’s sensory experiences, which we’ll come back to after the next ‘symptom’ — which is my favourite one.
“Highly restricted, fixated interests that are abnormal in intensity or focus” — or, as they’re usually known among laypeople, passions.
We’re talking about the things that fire people up here, that bring meaning to people’s lives. If it wasn’t for people with “restricted, fixated interests that are abnormal in intensity or focus”, science would never have got anywhere near the point it’s at. Would musicians even be a thing? Would artists? Would writers?
I don’t want to suggest that intense interests are always uncomplicatedly good. There are reasons the word ‘obsession’ has negative associations, and I think that autistically intense passions come from the same place as our ruminations, our loops of concern. I just think something has gone badly wrong when you start calling the things that people love ‘symptoms’.
Finally, we have “Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment” — a bizarrely late addition to the diagnostic manuals, given that sensory differences in autistic people have been observed since the very start.
It’s certainly true that most autistic people’s sensory systems work differently from others, and it’s clear that these differences can be distressing and disabling. However, they can also be a source of great joy, and they can help keep us — and others — safe! Being highly sensitive to sounds and smells that might signal danger is not always fun, but it certainly has advantages.
As for my unusual interests in sensory aspects of the environment, those are some of my favourite things about being alive. I get that it’s unusual to really pay much attention to the way light plays on water, and the smells of the natural world, and the many tiny living things we share it with, but I’m not sure why.
Like many (but not all) autistic people, I think I like the way my senses work, overall — even though I often wish it was easier to tune out textures, smells and sounds that I don’t get on with. I’m grateful for tools that help me to filter out stimuli when I want to: sunglasses, earphones, and so on; but I don’t think I would give up the intensity of good sensory experiences in order to get rid of the difficult ones.
So where does this leave us? The DSM lists a hodgepodge of interpersonal difficulties, coping strategies and intense experiences, and declares them ‘symptoms’.
Interpersonal difficulties always involve other people, and interventions aimed at ‘fixing’ autistic socialisation are heavily implicated in promoting masking, with all the mental health difficulties that follow. Coping strategies are wildly inappropriate targets for interventions, unless equally effective strategies replace them. Intense interests and experiences have advantages and disadvantages; there are plenty of accomodations available to soften sensory inputs, but no actual treatments.
Most of the ‘symptoms’ described are at least second-order effects of being autistic: things that arise out of interactions between a person and their environment, and often become problems only when other people take issue with them.
Framing these things as ‘symptoms’, then, lends itself to interventions and research aimed at preventing things that could more easily be accommodated. Too often, the harms of these attempts are not recognised — including the message that autistic people are broken and need fixing.
Meanwhile, these ‘symptoms’ provide only oblique hints at many of the things that really make life difficult for autistic people. Meltdowns don’t feature; there’s nothing in there about overwhelm at all — although you might be able to spot it just outside of the frame, if you know what you’re looking for. The sleep difficulties that plague so many autistic people don’t obviously follow from any of the listed ‘symptoms’. The anxiety, depression and other mental health problems faced by many of us are more likely to be worsened than improved by most attempts to attack these ‘symptoms’.
Of course, if ‘symptoms’ isn’t the right term for our differences, then ‘disorder’ doesn’t fit either — which is what many autistic people have been saying for decades.
