The below started life as a Discord infodump response to someone who’d had some pretty unusual childhood diagnosis experiences, culminating in “they told me the ASD had worn off”. By the time I’d caught up, the discussion had already moved on quite a bit. So in an extremely on-brand move, I smashed through the Discord character limit and ended up sending over a multi-page multi-heading Word document. It was suggested that I remove identifying details and write it up as a blog post, which several weeks later I am finally getting round to doing!
Content warning: Even today’s medical diagnostic criteria for autism are probably way more ableist than you’d expect.
Disclaimer: This is not a diagnosis and I am not a clinician. Views my own and all that.
The likely possibilities
Brains don’t always fit the boxes we’ve made up for them, and there are a number of things that could have happened here, e.g. some more transient mental health stuff/just taking a bit longer to develop certain skills being essentially misdiagnosed as autism for a while. Or, more likely, some later professional had no clue what they were doing and were just like “well, you talk and make eye contact and you’ve grown from a child playing with trains into an adult playing with trains, so you can’t be autistic”. There’s a range of possible explanations that aren’t actually anything to do with “the autism wore off”, basically.
The grim stuff
It’s important to remember that, while society’s general thinking around autism has moved on, the medical model has not. In diagnostic terms, you still need to meet criteria for Autism Spectrum Disorder (or Condition if they’re trying to be nice about it, but that doesn’t change the benchmarks). These are all about deficits and difficulties and bad things, and most crucially of all, basically require you to be having a hard enough time to warrant it being a whole DisorderTM. To quote from the ICD-11, which was published in 2019 and is therefore the least outdated framework we have (certainly compared to whatever was available at the time):
“Deficits are sufficiently severe to cause impairment in personal, family, social, educational, occupational or other important areas of functioning”
Essentially – if you struggle with social skills, non-verbal communication and sudden changes, process the sensory world differently, experience stimming and special interests and you’re happy, you don’t technically meet criteria for an ASD diagnosis. Safe to say, this is not a good state of affairs.
Neurodivergence =/= Meeting deficit-based diagnostic criteria
So with this in mind, it might be helpful to differentiate between “autism” as we generally talk about it – a neurotype, a particular way of being, a loose category of brain some people have – and “ASD” the clinical diagnosis, framed as a disorder, a checklist of deficits which must be causing sufficient problems in your life to warrant the label. Half the battle with some professionals is we’re basically talking about two different things. And because the diagnostic criteria require struggling, we basically don’t have a concept (clinically speaking) of what a happy autistic person looks like. Even the less pathologising lists of autistic traits are sometimes argued to really be “autism plus trauma” because (at least historically) it’s so rare for autistic people in a neurotypical world to escape any kind of trauma.
This brings us to the possibility of people objectively “losing” their diagnosis, especially from early childhood into adulthood. As we grow up, we may learn certain skills (even if it takes longer and is never “natural”/masking is involved) and we’ll almost definitely develop a few strategies for mitigating or compensating for everyday challenges. That’s pretty much what growing up is, I don’t think that’s limited to neurodivergent people. What’s more, in general children gradually have more freedom and control as they grow up. Essentially, you’re less likely to have a meltdown if you can clearly ask for what you need and get it, or if you can just leave a situation you find stressful, or if you aren’t being forced into a building with hundreds/thousands of other children to sit still all day in a sensory-hell uniform. Adult life is harder in a lot of ways, but also easier in a lot of ways.
So it’s perfectly possible for an autistic person to meet ASD criteria at a certain point in their life, and then later in life they don’t meet that “impairment in functioning” threshold – so technically no longer meet criteria. In practice, most clinicians recognise autism is lifelong, so if you meet ASD criteria at *any* point, you’re autistic. (This is why at adult assessments they usually ask for information from a parent or someone who knew you as a young child.) If you were diagnosed in the past, they certainly shouldn’t be striking it from the record without some other very good reason (i.e. there’s some alternative better explanation for the traits you had at the time). Based on just the diagnostic history you’ve given above, I’d say that absolutely counts as “having a formal autism diagnosis” (though the extent to which you identify with/care about this is up to you!). Usually, this “losing the diagnosis” thing is only relevant for research – historically The Bad Kind, but that leads us to the reason I’ve thought about this so much…
In which neuro-affirming research is constrained by bad diagnostic criteria and even worse reporting
(N.B. I didn’t go hunting for links at the time, but you can read more about the study described below on the Autistica website and in James Cusack’s piece for The Guardian – these go into much more detail than I could remember off the top of my head!!)
My employers got tangentially caught in a minor media storm a few years ago over some research in Australia that followed infant siblings of autistic children (since those siblings also have an above-average likelihood of being autistic themselves). This particular trial essentially involved training the parents to adopt different communication styles with their infant children, looking out for opportunities where the child is more open to communication/play or is actively seeking it rather than just sort of assuming that’s what they want all the time. And compared to the control group, fewer of the children whose parents got this training went on to meet criteria for an ASD diagnosis.
Inevitably, that’s the bit the media focused on – “wow, super-parenting can prevent autism” or whatever (I’m barely exaggerating). And when Autistic Twitter got hold of those headlines out of context, they were understandably angry and concerned, and some of that backlash made its way to us.
It’s frustrating, because it’s not that these babies were somehow turned neurotypical, it’s that the diagnostic criteria are wrong. If the whole focus is on difficulties and distress and autism-plus-trauma, then of course supporting a child to avoid those things will take them out of that group. It’s pretty much the ducking stool in a witch trial: if you’re traumatised, well you don’t want that, and if you’re not, then you don’t count. It makes research like this a million times harder than it already is.
ASD has for a long time been commonly understood as a mix of genetic and environmental factors. Some researchers now argue that essentially some people are born neurodivergent – you could even say born autistic, in the wider non-pathologised sense – but then some of those become autistic (in the meeting-ASD-deficit-criteria sense) as they’re forced to develop in a world that doesn’t meet their needs.
Conclusion
Can autism wear off? No. Can ASD wear off? Technically yes, in practical terms no. The diagnosis (and support) system is not fit for purpose. I’m going to bed. (Narrator: She almost definitely did not go to bed.)
Mind the Flap 