New DSM-5 autism criteria allows for lost symptoms: “On the basis of history alone.”

I was watching a new video released by the American Psychiatric Association, on the changes to the autism criteria, when something that was said made me rewind and replay it, because it was a game-changer that I hadn’t heard mentioned before. The video can be found here, but I’ll provide a transcript of the relevant part:

Susan Swedo, the chair of the Neurodevelopmental Disorders Work Group, begins by discussing that the social communication aspects of the new autism diagnosis, are “impairing and life-long, persistent.” But then she goes on to discuss the second group of autism symptoms: the restrictive repetitive behaviours. She says that some patients may – through training and development – come to have less obvious manifestations of these behaviours in later life, so “that criterion can be met on the basis of history alone.”

This is new, as far as I can tell. I’ve had a re-read of the original proposed criteria and see no mention about some symptoms not having to be present at the time of diagnosis, or (and very importantly) not having to be present in later years. This would seem to be a major twist, since it means talk about “outgrowing autism” could only be relevant in regards to the social communication criterion: If you no longer meet all the criterion, that is to say you no longer have the repetitive restrictive behaviours, it appears you would still be considered autistic because you had such behaviours historically, as long as you still had social communication challenges.

This reflects the current understanding that autism remains and affects a person, even though they may have found a way to “pass” as neurotypical. This also puts an interesting spin on claims of curing autism and outgrowing autism.

I have tried to find the final confirmed diagnostic criteria for autism in the DSM-5, the one that would illustrate this change, but every search I do just turns up the proposed criteria or a request for me to buy the DSM-5 for myself. I would very much like someone to confirm if Swedo’s summary is reflected in the precise wording of the new criteria, and whether I have correctly understood her statement and its implications.

I haven’t had much time to reflect further on what seems to me to be quite a big and important change to what we previously understood about the proposed criteria, so perhaps you see something here that I haven’t yet. As always, I would love to hear your thoughts.

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11 Responses to New DSM-5 autism criteria allows for lost symptoms: “On the basis of history alone.”

  1. Bec Oakley says:

    I just noticed this too! It’s very strange, since this is the first time that I’ve heard that mentioned by anyone on the DSM-5 team. It certainly wasn’t discussed anywhere in the proposed criteria or the notes that accompanied them. I don’t think it would be included in the wording of the criteria themselves, but rather if anything added to the clinician’s notes that help with interpreting and applying the criteria. Everything seems to have gone into lockdown now though until publication, guess we’ll have to wait for someone to buy the book 🙂

    • Bec Oakley says:

      Also, I really didn’t like the casual way with which she dismissed the potential impact on prevalence. They have very little evidence either way on that one, and since it’s a great source of interest and concern to many people it deserves much more than a dismissive “well I doubt it will have much impact since we didn’t really make many changes”!

      • Yes, I’ve seen sarcastic responses to that already: They made major changes but they don’t expect impact. She did make some effort to explain why she didn’t expect impact on prevalence, but I agree that it came off as rather dismissive of what is an important issue.

    • I did wonder if it would end up in notes of interpretation rather than actual wording, though it would be nice to see it officially spelt out somewhere! I’m relieved that the reason I can’t find the new confirmed criteria isn’t just because my search skills are lousy! So thank you very much for your comment Bec, really appreciate it, and now I go into wait-and-see mode too 🙂

      • Bec Oakley says:

        I think we can all safely say that your research skills are far from lousy 🙂 It’s annoying that they’ve just said that the proposed criteria were all accepted without change, and then casually drop something new like this into conversation without any way of understanding whether it was a casual comment or something more official.

  2. Wife of Jack says:

    Historic manifestations of the condition are relevant, but surely current repetitive symptoms along social communication impairments would need to be evident to confirm a diagnosis? Historically my son displayed certain behaviors that no longer impact on his life but there are new and challenging factors that pop up as he gets older. Other things disappear and then reappear later on. I would be foolish to think that these things are gone for good. I think it’s a good thing if historic tendencies are included in the diagnostic process, it gives a broader scope to access the current situation.

    • If behaviours come and go over time, I think that’s just another argument in favour of recognising historical RRBs; because its manifestation may vary but it was once very clearly there and may be again, so waiting for it to only appear at the exact point of diagnosis may then be arbitrary? It’s an interesting area of discussion, because it goes to the nature of autism and what it means to say someone is autistic, and goes to issues of “passing” and variable severity over time. We may have to wait and see how – if at all – the historical point is reflected in the precise wording of the criteria, and we may not know that until May, depending on what other information they decide to leak in advance.

  3. Splinter of Chaos says:

    I’m glad to see the history of symptoms included in the diagnostic procedure, but something confuses me. I personally think it would be much easier to improve on one’s social skills than repetitive behaviour, so why is history of repetitive behaviour relevant for a diagnosis, but not a history of social/communication impairment? Perhaps I underestimate the challenge of learning social reprocity, but learning time management skills and dealing with the variability of life seems much harder. Do I have it totally backwards?

    • My understanding is that it reflects the existing research: that social communication issues are life-long (though severity may change), but that repetitive and restrictive behaviours can be controlled to the point that they are at least “less obvious.” I suppose it’s easier to identify social communication issues even when the person has managed to “pass” over time, by just asking the person about their challenges and perceptions in this area, whereas repetitive and restrictive behaviours are an externally observable activity that may otherwise be unverifiable other than through historical records. It’s a good question either way, thanks for raising it.

  4. Sunshine says:

    I don’t know that I have very strong feelings about this at this point, and maybe that IS because I’m an unimaginative lay person with a limited (if any) understanding of the implications. Science is good, you know, accurate diagnoses are important.

    As far as the “outgrowing autism” discussion goes, I’m not understanding, and I recently made a pretty opinionated blog post on the matter, ha, so I’d love to actually learn something. It would seem to me that if an autistic individual no longer met the criteria in other areas, it wouldn’t matter if they used to have a history of repetitive behaviors or not. It seems social communication problems are more relevant anyway, since they are life-long.

    While I love any scientific discovery to shed light on the ultimate question: What is Autism? I don’t know if I see a lot of the discussion on the matter more than philosophical at this point, since we know a lot of those diagnosed with ASD really don’t meet the full criteria by adulthood. I think my own experience with how broad the spectrum really is, when you look into the traits of non-autistic family members, makes me wonder how useful it is to distinguish between these individuals, and those who once actually had a full fledged dx. What do you think?

    • They’re good questions Sunshine, I’ll respond as best I can.

      The first issue that makes these distinctions important is around the question of “passing.” Which is to say, that just because someone doesn’t openly and often exhibit a challenging behaviour, doesn’t mean they no longer work hard to fit in and still need supports to help them navigate society. When we say someone is no longer autistic, that’s often taken to imply they no longer require certain supports or have completely overcome their challenges.

      Secondly is the issue of when people claim they have the “cure” for autism or that autism can be cured, when what is really happening may be far more complex: The brain and way of thinking are still autistic, but the expression of that has changed (at least to others). So they may continue to think and experience the world very differently, even after various syptoms are gone, which greatly reduces the meaning and implications of saying they are no longer autistic.

      In that way, it goes to the issue of what it means to be autistic, what it means to recover or be cured, and the relevance of ability (and effort) to control certain exhibited behaviours.

      So yes I think this is probably an important thing to reflect in the criteria, though if I follow what you’re saying, in an ideal or more understanding world, it shouldn’t be required. (Do let me know if I’m off point or haven’t understood your question.)

      Really appreciate your thoughtful comment, thank you for the chance to discuss this further.

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