this post was submitted on 04 Jul 2023
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Neurodivergence
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The way I read it is we now know what we knew but don’t know anymore. The only concerning line is “potential treatments” I’m AuDHD and even though I have difficulty in certain things in my life I wouldn’t change them to be more NT.
I'd change in a heart beat. My sensory issues and struggles with executive function, social cluelessness, attention problems and so much more are not "super powers". It sucks and I'd love to not have to figure out the rules by breaking them and then getting in trouble.
Going through life walking on eggshells is no way to live. I am trying to surround myself with people who are more understanding and I'm doing my best to be attentive when I have the spoons. But like.. not understanding why people behave a certain way and simply not even knowing you're supposed to react a certain way in certain social settings is exhausting.
I agree to some of those things, but the reason I wouldn’t change now is the same reason you would change. The people I’ve surrounded myself with are understanding and I don’t have to walk on eggshells. If you had asked me 5-10 years ago I would be in the same position as you. Lots of therapy and hard work later, I’ve learned to love myself (not saying you don’t) but I love me for me defects included and I don’t want to stop being me even if it would make things easier. This is just my personal feelings though and you are absolutely entitled to feel differently, I just wanted to share my perspective.
Not everyone has the same degree of autism. Well functioning children for example may not need any treatments. On the other hand, entirely non functioning children, who are depressed, so easily over stimulated that their lives are actively difficult, etc I would be shocked to see someone claim they should continue to suffer and reject potential treatments because others feel like their own autism doesn't cause any issues.
I even know people who have their autism well under control who would have had much better childhoods and be happier today had there been better treatments, and would likely accept some treatments now given certain effects were possible.
To me it’s simply speaking that autism itself is a problem when it is a spectrum disorder and not every case is a “problem” it’s the language I have a problem with, not the idea that treatment could be available.
I promise that they are just speaking clinically. Any given treatments target specific symptoms or properties. Just as treatments for ADHD target things like executive dysfunction in various specific ways, but not on eliminating adhd as a condition, there is no feasible way to "cure" autism as you're inferring from the phrasing. What might help is considering possible rephrasing to see that it's just something English isn't well tooled for.
Researchers almost never have an interest in this concept of "curing" something like autism. The focus is on reducing suffering caused by negative symptoms of conditions, pretty much always to the degree the patient desires.
Reading the quotes from the paper for example where they describe a boon here being identifying possible effects from intervention and to be able to predict the effects more accurately. I.e. better target symptoms with fewer side effects, and better design therapies.
i think that regardless, if this does appear to be a prevalent pattern with statistical significance, it would allow for people who may previously have gone undiagnosed/misdiagnosed to receive an accurate diagnosis. the idea of seeing this as a 'problem' requiring 'potential treatment' is spooky and insidious, but i still want to be excited about the good this could do.
One line that stuck out to me regarding the outcomes of the fecal transplants was ‘improved gastrointestinal symptoms’. If people with ASD have higher rates of GI-related issues, then the findings of this paper could be really helpful in understanding and improving treatments for GI problems in patients with ASD. Of course I understand the skepticism that this work could be used to try and cure something that doesn’t need to be cured, but my hope is that the more likely outcome is a more holistic understanding of ASD that leads to better medical care across all areas of health.
It's a very thin line and I fear it will be crossed. While I'm all in favor of a possible way to provide a diagnosis via a lab test and for a possible way to trerat GI problems, if there will be a treatment to ASD, there will be a lot less accomodations for people who don't want to be cured of what they feel they are.