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Message: <blockquote data-quote="starmind" data-source="post: 304" data-attributes="member: 68">Hello. I exchanged a few DMs with NDSA on twitter and was invited to share these observations here so more readers can access & get involved. My own (favorite) definition of ASD (speaking strictly for myself and for own personal experience) is to call it a neurological condition of sensory disregulation, which it is. I favor this objective technical phrase precisely because it sounds descriptive and self-evident. It's a prompt for open-mindedness, possibly inviting more questions and dialogue. What does this condition involve, what kind of sensory disregulation do you experience, how does this manifest - notice it already creates an opening to talk about _your own_ personal experience (of this condition), no vague stereotypes and no tyrannical external definitions.Anyone unfamiliar with autism (whose understanding of autism is limited to external, ableist social stereotypes) will not recognize this "neurological condition of sensory disregulation" as autism because, well, it sounds entirely different from anything they might've heard about it. They might react with, "wow you don't look/sound autistic." But what they really mean is: "wow your first-hand experience of actual autism doesn't look/sound like any stereotypes or caricatures I've absorbed about autism." It's a surprise of recognition that reality of autistic experience vastly differs from non-autistic imaginings of it. Moments like these are great opportunities to self-advocate and self-represent. Remember: to many people, you might be the only autistic individual they get to know closely/directly, which means you get to overwrite crude social stereotypes by becoming these people's new reference point on what real lived autism is like."You don't look autistic" is a phrase of surprise or disbelief, but it's not meant to invalidate: seize such moments to gently re-validate your own experience and readjust non-autistic perceptions of it.  -"You mean, I don't look like the autistic stereotype, and you're absolutely right,"-you might say in reply. -"Real-life, first-hand experiences of autism are very variable and individual, like any other condition. The stereotype and symptoms you associate with autism come from external non-autistic imaginings which have historically been dismissive of actual autistic perspectives."You might offer to share such perspectives, or to answer any future questions. If the other person is receptive and open, you might even mention the diagnostic criteria of autism (in DSM-V) has been changing dramatically over the past 40+ years and even this past decade alone,  and is still very much in development. In other words, clinicians, psychologists, therapists, and neuroscientists still have not fully defined it, cannot fully define it, and very much recognize the limits of critical frameworks they are using. The only ones who get to define it - for themselves and for those around them - are the autistic individual themselves, simply in everyday experiences. Less systems-based approaches and more personal touches.About the phrase "neurological condition of sensory disregulation" :Presently I've "tested" it in limited settings thus far, only a handful of one-on-one exchanges with colleagues (who are already familiar with me/my work), and purely in practical contexts. Mentioning it briefly not to draw attention to it, but to provide a frame of reference on why, for instance, I can only stay a limited time at a crowded social event, why I might keep sunglasses on at said event if the lights are too bright, or why I might ask to dim the ceiling lights slightly during my presentations (as a small accommodation). Framing it as neurological is, I think, crucial as it points to neutrality of manifesting symptoms and gives others a reference point entirely free of any "baggage". In other words, I pick this neutral phrasing to "own" this condition and emphasize I'm the same exact individual as I've always been, as far as others are concerned. Thus, admitting sensory intolerance to some stimuli becomes no different than admitting lactose/gluten intolerance, etc. And just as dietary accommodations are becoming completely normalized in work/social settings, I believe the same can be done with sensory accommodations. Goal is to remove the social stigma by normalizing ASD simply as a way of being.I've honestly resisted accepting my own condition for years because the predominant mode of discourse around it is still entirely rooted in pathology paradigm (even the wiki page, first place anyone ever looks), and to accept it is to accept that there's something "wrong" with oneself. The "disability" in autism is 100% socially-constructed. The pathological framing of autism as "social deficits" is not only "disabling" but honestly dehumanizing. (This is the biggest obstacle for disclosure - and biggest uninformed stereotype to overcome).What NT pathologists/mental healthcare providers/psychologists still aren't catching on about, is that the so-called "social handicaps" of autistic individuals are entirely created by certain social hegemonic structures that don't/won't/can't accommodate human ways of being when said ways of being diverge from the narrow (and entirely socially constructed) status quo. (I'm writing an article about neurodiversity in premodern cultures - it is truly incredible to realize how much the Cartesian/Freudian pathology paradigm has hijacked contemporary discourse to such extent that many simply take this cultural Western phenomenon of NT normativity as a de facto given).Just a small example, to illustrate and expose the Western "neurotypical social standard" as a mere construct:Consider the case of Finland, renowned in pop-media as a nation of introverts. Traveling though, I found the Finnish cultural responses to noise/"loud" sensory stimuli to be radically different from elsewhere in the West, indeed. A fully packed airport cafe in Helsinki - crowded to capacity- was so quiet and peaceful it was as if the place was empty. People simply talked at low volumes sitting close to each other, no exuberant gesticulations, no animated body language, everyone was calm and quiet. The crowded place did not feel overstimulating at all. Same phenomenon was also noted at crowded coffee breaks of a Finnish conference I was attending: the room was full of people yet the low volume and lack of emotional exuberance made it a very peaceful setting.I am regrettably not a neuroscientist or psychologist (my training is in philosophy and critical theory). In my own observations, the differences in dominating phenotypes/neurotypes (on cultural or geographic scale) appear to govern what is considered as "socially normative". What elsewhere in the West is called  "neurotypical" (driven, high-energy individual prone to active socializing and network-management) would stand out as an anomaly in most of Scandinavia. It really brings attention to limitation and contingency of any "socio-normative" models. They are entirely cultural-historical constructions. Cultures where different cognitive structures were valued and represented would have a completely different definition of what to them is "neurotypical" or "neurodiverse".These are among the biggest points of emphases framing my research (history of mentalities/history of ideas). There is so much yet to be done in raising acceptance of neurodiversity, but making uninformed folks aware that this is precisely only this - valid human diversity, valid diversity in human experience - is already a great step to overturn pathology-models.Neurodiversity in disability discourse can do what queer theory has done for gender discourse: collapse the binary either-or (normal/abnormal) and reclaim and celebrate individual ways of being as part of the vast diversity and plurality of human experience, freeing it from any label impositions and giving people freedom to simply be themselves and accepted as they are. Validation and affirmation. This was long, so will end the post here - glad to share perspective. Very gratifying to see more grassroots self-advocacy groups emerging around the world!Feel free to engage with more questions or talking points, either here or @ me there. My twitter handle is the Old Norse translation of my current username here: stjarnahugr.</blockquote>

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