#then what are you doing working in the mental health and neurodiversity field | Explore Tumblr posts and blogs

drrogerjou · 6 months ago

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SHORT NOTICE: Cultural Autism Studies at Yale (CASY, the ethnography project led by Dr. Dawn Prince-Hughes) is delighted to welcome Drs. Alice Scavarda and Ariel Cascio this Wednesday, May 22, 11 a.m. EDT. This special presentation will be made in both Italian and English and its entitled, “The neurodiversity movement in Italy: Theoretical developments and research opportunities. Il movimento della neurodiversità in Italia: Sviluppi teorici e opportunità di ricercar.”

There is no cost to attend, and international participants are invited to join. RSVP online though our borderless Meetup group https://tinyurl.com/3nv2exsy

DESCRIPTION: Neurodiversity is a revolutionary paradigm which considers all humans as neurologically diverse, by acknowledging the presence of multiple ways of thinking, perceiving the outside world, and interacting with people. This variety has been historically denied and stigmatised, based on the existence of the “normal brain/mind”, a cultural and statistical artifact which has been turned into a biological essence. People with neurodivergent conditions, namely whose brains work differently than the presumed normal one, have been socially oppressed because of the pathologisation of their difference. Neurodiversity is not only a field of inquiry, but also a global social movement, drawing on neurodiversity ideas to advocate for children and adults with neurodivergent conditions. However, neurodiversity movements are varied, because they are influenced by local cultural contexts such as the history of medicine and the structure of education within the country. In this context, Italy is an interesting case study, which may illuminate the multifaceted perspectives and social actors constituting the biosocial field of autism and their relationships. With this talk I will chronicle and discuss the history of the neurodiversity movement in Italy, as well as the research opportunities and the consequences on children’s mental health, drawing on 8 in-depth interviews with movement leaders, researchers, and members of parent associations. We argue that Italian education and health services systems serve as promising sites within which a neurodiversity approach can foster neurodivergent children’s self-esteem and give them powerful tools to fight against oppressive practices.

BIOGRAPHIES:

Alice Scavarda, Ph.D. in Sociology, is Postdoctoral Research Fellow at the University of Torino. She is a member of Disability Studies Italy and a Founding Member of Graphic Medicine Italia. Her research interests revolve around Critical Autism Studies, Sociology of Health and Illness and Qualitative Methods. She is currently committed to deepening the methodological and ethical aspects of doing participatory and emancipatory research with neurodivergent people. Moreover, she is studying the development of the neurodiversity paradigm in Italy.

Ariel Cascio, Ph.D. is joining us from the ancestral, traditional, and contemporary Lands of the Anishinaabeg – Three Fires Confederacy of Ojibwe, Odawa, and Potawatomi peoples, the land also called Michigan. Dr. Cascio is an Assistant Professor in the Center for Bioethics and Social Justice at Michigan State University. They are an anthropologist who studies social and ethical issues around autism and neurodiversity in Europe and North America, especially Italy. Their research projects largely center on the questions “what does autism mean?” and “how do groups account for the neurological diversity of their members?” You can read their research at arielcascio.wordpress.com.

Drs. Scavarda and Cascio are co-authors of papers such as “Embracing and rejecting the medicalization of autism in Italy. Social Science and Medicine” (2022), “Fare ricerca qualitativa con persone disabili: possibili sfide e benefici. Welfare e Ergonomia, (2021, with V. Quaglia) and “’Children should be raised like this’: A history of the neurodiversity movement in Italy and its implications for children’s wellbeing” (under review).

ABOUT: Cultural Autism Studies at Yale (CASY, the ethnography project led by Dr. Dawn Prince-Hughes). An 'ethnography' is an exploration of how a group of people express themselves in a cultural way. Autistic people have a growing kind of culture, and each autistic experience is a vital part of it. Dr. Dawn Prince-Hughes is an anthropologist, ethnographer, primatologist, and author who is autistic. Join her for an exploration of the importance of autistic self-expression and the culture that grows from it. Those who wish to share their content are free to do so on our private Facebook group (see below), organically contributing to a growing autistic culture.

Links to online events will also be shared on these private Facebook groups: SOCIAL CONNECTIVITY FOR AUTISM (http://tinyurl.com/mrxnxmnc) or Cultural Autism Studies at Yale (http://tinyurl.com/4ckbyut7).

CREDITS: The preparation of this material was financed under an agreement with the Connecticut Council on Developmental Disabilities (CTCDD). CASY Sparks membership, activities and events are free. CASY Sparks is sponsored in part by The Daniel Jordan Fiddle Foundation Adult Autism Research Fund, and a generous gift from the Rosen family, and the research of Dr. Roger Jou, including Simons Foundation Powering Autism Research (SPARK) Clinical Site Network - Yale University (https://www.SPARKforAutism.org/Yale).

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grison-in-space · 9 months ago

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I'll just fill out my own read more here, @gosuperdonnie: I never mind things being out in the open, but I deeply appreciate the care for privacy and I want to make sure I can respect yours back by redacting anything you'd like. Anyway, none of this is going to make any sense without the context of your bit. I heavily encourage my followers to read your full post.

No, really, doxxing holds no terrors for me: I write here under the cheerful assumption that I can be easily identified with the right context, and the main reason I have switched names even ONCE since 2007 is that I, uh, very publicly flipped off a pack of MRAs using both my real name and my last pseud, it got pretty viral, and I was kind of concerned it might get big enough that some chucklefuck might try to SWAT me or dig out the AO3 account to wave at a boss. Never happened, and I care even less now. I get the doxxing concerns and I am gratified by the care and kindness with which you've approached me, a stranger, after I was rather rude to you: I totally did use your comment as a launching pad to think about the shared sphere of our work, invoking both of our shared communities, and then I plastered it all over everywhere you'd be likely to see assuming we shared the same primary social network (ie tags, which I almost never do). Which I did not consider because, frankly, I'm a thirty something millennial who had long since assumed all the youths had decamped to cooler, greener pastures. This says way worse things about my manners than yours.

Truly. I get exactly why you were embarrassed and pissed. I did, without thinking about it, a pretty rude thing socially! For that, I apologize.

Okay, that little mortification out of the way:

My memory is also awful, but what you're saying sounds about right to me. I think you did provide that context about IDD spaces, because I was smiling and nodding along to it and thinking about how true it is: how even among those of us who can contort ourselves into passing without supports or even acknowledgement, I have seen a lot of neurodivergent people just collapse out of graduate programs, usually either from burnout or (disproportionately commonly) being actively targeted for bad treatment by a mentor. I've been around the block a time or eight and I have observed a lot of bad behavior in a range of fields.

Academia is not exactly an accessible profession. It relies incredibly heavily on the affirmation of relational networks and requires a level of investment that presumes a full time spouse-caregiver, a role for which it does not pay. Those relational networks are prone to abuse and distortion at the best of times. My PhD left grievous scars because my relationship with a supervisor crashed and burned for reasons impossible to untangle from our mutual neurodivergency. Like most people, I find myself hyperattuned to my own experiences and viewpoint, you feel? So that's what I was talking about as I was thinking out loud to myself.

The things you're hearing in your IDD/higher support communities come from true experiences, too! That's actually a branch of neurodiversity politics I happen to share! Like, that's the political end of the quote unquote movement that I align with, thanks. I'm uncomfortable with my animal research models self on that panel, too! The only reason I was willing to go into this field while, I have to stress this very much, desperate, terrified, and in the most severely damaged mental health of my life is that my PI agrees with me that most of the animal autism model work is bullshit and frequently goes on rants about marble burying!

Here's a little of my context: I've been consciousness raising and trying to build networks of support among disabled academics for something like seven years. The past two years of my postdoc have been literally the first time in my life that hasn't involved tightly compartmentalizing my life about my neurodivergence and closely guarding who gets to know what. Fuck, it's been like desperately pretending not only to be straight around all the other players in the professional women's soccer team, but also pretending that there are no other queers in the league either!

The observation you were making was poignant, accurate, and clear. Your broader point was eminently understandable and relatable. Let me just underscore that again: that context is important and worth discussing. I picked up the tip of that glacier that set me thinking and toddled off with it because your critique was true, valuable, and not new to me: I was chewing my thoughts over, and it didn't occur to me to go over the parts that I had already integrated. That does not mean that it was a bad idea to make that critique again. Not everyone has heard it yet, and not everyone understands its implications. And being reminded is always useful, too.

I also agree wholeheartedly that the project of including more IDD folks in the room is a wholly different thing from just throwing more neurodivergent folks at it. In no way do I want to dismiss that! You have zero reason or context to know this about me, but I believe strongly that passing is an important inflector of marginalized experiences because it's a powerful tool that comes at enormous cost. So if you want to understand marginalization from all angles, you need to be talking to people with a wide range of options to pass: people who cannot pass tend to be more keenly attuned to the consequences of being perceived as marginalized while people who can act so tend to be more attuned to the consequences of being isolated from anyone who could perceive them. Do you see what I mean?

And that means that you have to be including people who can't pass long enough to make the credentials at every level of your field, including conceptualization of the goals of the field of study. Which is what I pulled from your commentary, and—yes! Of course! So obvious that it was just a pleasure to hear it articulated and agree!

When I was a kid, the decision my mom made was to literally train me like a performing seal if that was what was necessary to avoid anyone Finding Out about me. I was explicitly and repeatedly scolded for even talking about it well into adolescence. I used to have a lot more brainpower at my disposal, so I more or less could, up until I hit my thirties right into COVID... when I hit burnout really, really bad. I am actually coping with becoming significantly more visibly disabled because I can't always maintain passing anymore, and that's always a journey. I have been performing that mask nonstop for long enough to be hitting the long slumps and crashes that many of my peers describe. It's a mask that must be glued to the face each day and ripped off at night, leaving irritation and exhaustion in its wake, but it lets me go places and achieve things I might not have been able to do otherwise.

Unrelated, but I was just complaining the other day that no one seems to know about Jim Sinclair these days. What a clear eyed, clear headed writer and thinker they are. I should try to knock together some kind of neurodivergence reading group again; I haven't had a chance to try and organize such a thing in Psychology but I had a really wonderful conversation last spring with Dr Williams over in the CDSC and it would be so nice to connect more directly on a regular basis...

Losing it is terrifying.

Also, let's be frank: I assumed you were talking way more to your classmates, continuing with them on a meta-conversation that a random like me doesn't have full context for, than like. TO me.

Your program of research sounds, bluntly, desperately needed and incredibly valuable. And way, way more likely to change things immediately for the positive for folks on the ground than mine. I'm so sorry people have told you that your work isn't worth doing or interesting; I won't pretend I'm surprised but I want to underscore that those people are fools. I'm incredibly glad and gratified that folks like you are here. I thought about working on autism from a psych or neuroscience perspective before I graduated undergrad, but I decided against it then and went for animal behavior because I found the experience of reading the autism literature too dehumanizing. I am so genuinely delighted and impressed that you can be here, getting your foot in the door to do this work. If I had any connections to people who know what they're doing re giving your precious, precious perspective a place to set root, I would give them to you immediately.

The work I'm currently doing mostly involves building up enough expertise and credit with mainstream "autism researchers", especially in the animal model world, to carve for myself a platform upon which to perch while I shriek invective at much of the rest of that field. I think it's necessary work, too—they do have a lot of money and power—but it's a longer game and it also relies on not collapsing and letting the academic PTSD win.

But yes: I am so sorry I didn't craft my post with the understanding that you might see it and correctly recognize yourself in mind. I would have provided a lot more context, for one thing! I hope that gives you context for the direction of my commentary the other week. Regardless, thank you for all the subsequent food for thought and for such a gracious comment in an awkward situation.

yesterday's talk to the neurodivergency activism program also included a fun "ethics in research on neurodivergence" panel conversation at the end when one person expressed this real frustration with the academy: that it's so unfriendly to neurodivergent people who can't navigate the social structures of academia, and it is so frustrating to this person to know that they want to go back to school and get the PhD but it's so unfriendly to neurodivergent people--

bear in mind, I'm the only openly neurodivergent researcher on the panel and by far the most junior (the others are all established faculty), plus I do animal research which is probably as far from the rather clinical focus of the folks in that program as humanly possible. and I've discussed openly how relational academia is, and how much it relies on the approval of your supervisors. we've even had a nice conversation about the same thing in clinical practice.

but I'm sitting here going... you know what, the interpersonal fuckery that almost ended my career actually was a result of blundering into another neurodivergent person's unacknowledged shame spiral, actually? you know that neurotypical research PIs are a distinct minority in my experience? you know that this is an incredibly dysfunctional institution, I ain't arguing that, but it's also one that has been by and large built for, by, and around neurodivergent people's needs and desires?

it's just they don't know it, so if you talk about it openly you get panic reactions. but it's so, so, so funny to see. (as I expanded on this theme the lady I liked best, a black woman working on intersections between developmental disabilities, race, and access to health care, is just grinning SO wide and almost giggling to herself.) you label yourself and people go OH NO A LABEL but if you know how to see the shape of the thing the label is supposed to describe, you can see that they oughta have a label, too.

so on the one hand, real consequences for being too open about yourself, but on the other hand, things actually have gotten so much better in the last 5-10 years. and on the gripping hand, just being in a space with only other neurodivergent people does not necessarily fix the problem of inadequate communication, hurt feelings, bad relationships with power, and weird insecurities. it just doesn't fix it. what works is understanding how to resolve conflicts, building structures that are less reliant on single dyadic relationships, and finding alternate ways to make connections with scholars in your field.

dammit, this means I should probably poke my bluesky again. fff.

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likeabxrdinflight · 2 years ago

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Hi! I just read your post on Azula and diagnosing her and/or other fictional characters with mental illness. I really appreciated the read.

As a person who has struggled with mental illness and a neurodivergency called NVLD (similar to ASD and ADHD, but neither), I find it very important to be careful with mental health headcanons and avoid ableism. I really enjoy researching many different things related to psychology, primarily using peer reviewed articles and print sources. I did develop a headcanon that Azula would be diagnosed with Borderline Personality Disorder after the age of eighteen, based on the research I did and on personal experiences I have had with people I knew with the disorder. I can see why people would disagree with this headcanon and that’s valid. I want to make sure I’m not being careless in any way, shape, or form.

Ableism is something that has impacted me very, very negatively in my own life. I’ve had very distressing and stressful experiences due to people fundamentally misunderstanding neurodivergency and mental illness. I often struggle too because I can “pass” as neurotypical and without mental illness, so people tend to assume the worst when I miss social cues or act out when I’m stressed. One of the many things that drew me to Azula as a character is that I could relate to her inner conflicts, traumas, and emotions and feeling like I had to prove myself to people in order to be valued. And…the last thing I’d want to do is extend any ableism towards Azula in my writing of her in my fics. She is twenty when she is diagnosed with BPD in a modern setting with a trained psychologist. But I want to still be careful.

Sorry this is a long, rambly ask. My question would be: am I going about this in a healthy and respectful way or is there something I need to do differently?

I hope you have a great day! 😊

Hi! I totally respect wanting to be careful with mental illness/neurodiverse headcanons, but I definitely want to make it clear that the point of that post wasn't to tell people to never headcanon Azula as having some type of mental illness- especially mentally ill/neurodiverse people themselves. To me it sounds like you've really thought about this and have done far more research than most people would- looking at peer reviewed articles is already impressive for someone not in an academic field!

BPD Is a tough diagnosis, not because the disorder is some big bad scary thing, but because it's gotten a really bad rap over the years. I've had a lot of experience working with BPD clients since making that post, and it's always a hard diagnosis to give because there's so much stigma around it. I've spent many an hour now with patients just explaining the disorder and how I personally think about it in context of the individual person's life experiences/trauma history/early attachment relationships. And it overlaps with complex trauma a lot. So much so that the woman who first conceptualized C-PTSD (Judith Herman, absolute queen) acknowledges that many C-PTSD patients also meet criteria for BPD.

(C-PTSD is still not a formally recognized diagnosis so a lot of those patients end up with a BPD diagnosis anyway cuz that's what's in the book...)

Anyways, it sounds to me like you're doing the work to treat this diagnosis and Azula's character as respectfully as possible. I don't think there's any reason Azula couldn't, in theory, develop BPD, especially in a modern AU setting where I'm assuming fighting in the war isn't part of the story. BPD is a much more likely outcome to child abuse than a psychotic disorder for sure (though both are possible.) It's certainly far more likely than the other personality disorders fandom likes to give her. So I think keep doing what you're doing and you'll be just fine.

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loki-zen · 3 years ago

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Self Dx

was going to post this in response to something, but realised it was Very Tangent:

Something I think is important to remember in the whole mental illness and neurodiversity self Dx debate is that both self Dx and professional diagnosis cover a lot of ground.

For example, I believe that I am genuinely at least as qualified to help my friends work out if they might have ADHD as the clinician the NHS would likely eventually send them to is.

What that clinician will do is ask them, and ideally also someone who sees them regularly (like a partner), and someone who has known them since they were young (like a parent or sibling) to fill out what are basically some specific more sophisticated versions of those online multiple choice quizzes that tell you if you might have ADHD. They will then assess the results according to the rubric, as well as asking questions and exploring things brought up in the questionnaires to get a more holistic view of the patient or incorporate ‘tricks’ they learned somewhere or another that can give useful information but which aren’t part of an official test - for instance, to find out if someone has, through recreational use, discovered they have specific kinds of unusual reaction to stimulants that are common in ADHD people.

They will then compare the overall answers to what their experience and schooling tells them ‘ADHD’ looks like, and make a judgement call. It’s as simple as that. (In an ideal world they might also investigate other potential causes of the symptoms and screen for common comorbidities* like autism)

It is necessary that the doctor understand the screening tools and how to use them, and have knowledge of ADHD.

I understand the screening tools and how to use them, and they and their rubrics are readily available online. I have at least as much formal knowledge, frankly, as the psychiatrists the NHS generally employs in this capacity (who spent all their schooling on mental health then took like a six week CPD course on ADHD basically), and much more experiential knowledge of what it’s like from the inside and out. I might not have met as many ADHD people as them, but I have understood the still quite considerable number and variety apart from myself that I have known far better and more deeply than NHS doctors have time to. I am also, crucially, not poisoned by the Medical Model of Health into having a warped viewpoint on all of this aware of how it typically presents in AFAB people in ways that they aren’t (or, to make a claim that’s in no way controversial [although doctors not knowing about the AFAB thing is pretty well established at this point]), I am spending more than twenty snatched and stressed minutes on this, during which I definitely won’t mix them up with another patient, or consider the fact that my bosses would really like me to screen more people out of receiving support.

‘Self Dx’ contains people who have received the attention of someone like me, or done the kind of research I have done, as well as people who are being trendy or in some way attempting to scam their way into sympathy or support.*

‘Professional Dx’ contains people who saw a genuine specialist who took his time and fully investigated the matter, like I was lucky enough to have the chance to, and people who really just took a test that you have access to online right now and had it graded by someone with the right letters after their name.

The culturally- and legally-sanctioned professionals - especially the average relevant Qualified Professional that you are actually likely to meet, but even sometimes people at the top of their field - are not necessarily the actual experts on some medical conditions and/or neurotypes, and they are not the experts on some aspects of nearly all medical conditions.* Discussion of these topics which - perhaps due to the participants’ good fortune in their experiences of health and/or of medical professionals - fails to take this into account is incomplete.

*I don’t like ‘comorbidities’ in this context because its implications are at best complicatedly true, but it’s the term in use and I couldn’t think of another single-word term for what I meant

*and good luck with that frankly; me and my professional diagnosis are still looking for this mythical pot of sympathy and resources that people are supposedly faking to access

*obviously, for instance, educated patients usually know best regarding what it’s actually like to have a condition and what coping strategies and so on actually help and are viable. But additionally there are also facts many aren’t aware of such as ‘your pharmacist is probably the expert on the medication you are taking/your nurse is probably the expert on wound care, not (in either case) your doctor.’

#medicine #neurodiversity #morning hot takes #the medical model of health

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voidstain · 2 years ago

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Proper Pinned Post

Anonymous blog that started as a writing blog. Now it's a bit of a mishmash. Self expression, often unedited and done on mobile. Maybe discourse, maybe rambly posts, who really knows.

Quick rundown: Pro-ship, pro-endogenic systems, pro-kink, pro-sex work, pro being radically inclusive generally. Disabled (physically and mentally, though the distinction is not one we feel needs to be made), queer, tired. 25+ body. We block liberally but do try to be understanding and own up to mistakes.

Feel free to block for any reason. We try to respect DNIs, if they exist/are accessible for us, but don't really think stating one ourselves is worth it. If you want to interact, you will, a DNI isn't going to do much to stop people. If you don't want to interact because of our stances, you aren't going to anyway.

Info on us and what you may expect to find on this blog below the cut.

We are a plural system that prefers using headmate/fictive terms over parts/alters/introjects. Voices will not be given names, and are numbered in order of choosing to use this blog, not by how many are actually here.

Currently:

Voice 1 (They/It)

Voice 2 (She/Her)

Voice 3 (They/It)

Voice: undisclosed (could be anyone, or a mix! Not necessarily a voice given a number.)

Voice 4 (They/Them)

Voice 5 (He/Him, & any)

Topics you may find:

Queer themes

Neurodiverse themes (Autism, ADHD, plurality, trauma, & more)

Cripplepunk/Madpunk/Punk in general

The woes of chronic pain

Lots of identity stuff

Self harm/Suicide/Death

Religious trauma

Unreality/Things of an otherworldly nature as if literal and as if really had happened

Dealing with reality, usually with hopepunk, but like, yikes

Fandomish stuff, maybe. Headmates/fictives being vague probably.

& more!

Any identifying info is not happening. If you think you know us no you don't. NDA this shit. Redirect your brain cells away from suspicion. If you browse thats fine but leave no trace, nature trail visit this place. Coincidences are just that, not even correlation. Or else.

(We'd probably just be embarrassed about being Known(tm) and kinda upset about some stuff being seen thats private but pretend I have a gun for the meme)

Thanks for coming to our ted talk, except psych, bonus ted talk of thoughts will be randomly added below

Anti-psychiatry. Yes we have a psychologist headmate, yes we are in therapy with a therapist who knows about us. Tear down the medical field and rebuild it brick by fucking brick without any brick not being seen to by someone it impacts. No one should be forced to have medical choices and bodily autonomy stripped like that.

As such, obviously, pro self-dx, because dx labels are like. a horrible mess. Half of it is different brands of slightly varied symptoms lining stuff up to see which eye glass you see through best at the eye doctor. Whatever's comfy yall. It's like trauma all the way down anyway. Yes for like, almost everything. Even the biological stuff is exacerbated by trauma. Life in our society is inherently traumatizing for 99.9% of people.

So like. Drugs. Relatedly. Addiction is a societal problem. Free supervised substance use sites is a public health issue. Stop jailing people (disproportionately BIPOC who are often then exploited as prison labor) for drugs. Stop villainizing them. Addicts should be supported, and you know what? If someone wants to do drugs sometimes, let em. They aren't a crime that forever marrs your immortal soul or some shit.

Opiod crisis. Pain relief seeking behavior being classified as drug seeking is costing lives, just give them the prescription. Also on this topic free healthcare. Abortion is an inherent right to bodily autonomy. Let someone trans their gender as much as they please so long as consent is informed. Also palliative care over life-prolonging care any day if the person wishes. Also physician's assisted suicide.

For the love of the vast void or whatever you believe in stop letting cops kill people. Stop letting cops. That's it end of sentence. Redirect funds to better serve the community. Cheer when the station goes up in flames. Also just because you're European doesn't mean you're free of the racism of the US.

More to be added when we feel like it. Also posts may get made abt these separately

#about #about us #about post #info

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beatrice-otter · 2 years ago

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I literally give “autism 101″ talks to any group that will listen. I’ve talked to teacher groups, mental health groups, church groups, and others. And the baseline knowledge that people outside the neurodiversity movement is that autism is a horrible thing that destroys lives and families and needs to be cured. That’s where people are starting from. Most people think of autism, and they think “little white boy who can’t talk and throws tantrums all the time, aren’t his parents so heroic for dealing with it, isn’t it so hard on them, wouldn’t it be better if that boy was normal.” It never occurs to them to wonder what autistic people think because a) they don’t understand that autistic adults exist and b) they don’t think autistic children have any ability to communicate or anything of value to say. Giving talks on what autism actually is and what autistic people actually need from a neurodiverse perspective is mindblowing to pretty much everybody who isn’t already inside the neurodiversity movement.

Once I point out things like “if there was a group advocating for racial justice, and they didn’t have any people of color on their board, that would be a problem,” and point out that it’s just as much of a problem if you’re talking about autism and not listening to autistic people, then people go “oh, yeah, that makes sense, I guess you’re right.” But it is a novel concept to them.

And yeah, Autism Speaks pushes that narrative about autism destroying lives and needing to be cured, but they didn’t start it, it vastly predates them. They are successful in large part because they tell people what they expect to hear and confirm their existing understanding of the subject.

As for the Autism Speaks wiki page, the “views” section starts out “Autism Speaks' past advocacy has been based on the mainstream medical view of autism as a disease.” That is literally true! That is the mainstream medical view of autism! It’s changing, but slooowly. How is someone who is not already a part of the neurodiversity movement supposed to know that in this case the mainstream medical view is wrong? Yes, it goes on to list various critiques autistic people have of that view, but when Joe Random Celebrity (who doesn’t really understand that autistic adults exist and have a point of view) reads that, why would he think that was more likely to be true than the thing the mainstream medical field thinks (which by the way is also the way literally everyone else he’s ever heard talk about autism has talked about it)?

I think we have a lot more advocacy work and acceptance-focused work to do before we can blame celebrities for not understanding why Autism Speaks is bad.

And as for how does it get access to all those people ... it was founded by Bob Wright, former CEO of NBC. Yes, you read that right: he was chief executive of one of the three biggest TV networks in America for something like 20 years. He’s been retired for a decade and a half, but Autism Speaks was founded while he was still CEO. He would have had the ear of everyone in Hollywood.

“You can’t blame celebrities for donating to Autism Speaks, it’s not common knowledge that they’re hateful.”

I timed it. It takes 15 seconds to type their name into google, pull up their wikipedia page, scroll down to their Views as an organization, and see the first listed thing is they have historically viewed autism as a disease.

15. Seconds.

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girl4music · 4 years ago

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I'm saving this in my bookmarks. I have a lot more to say about it and need to gather my thoughts on it so I can clearly and concisely express what I want to say without insulting someone else. It's a very controversial topic of discussion after all. But one that must be discussed nonetheless.

------------------------------------------

"but the misconception you must accept that you have an addiction in order to change your relationship with drugs and alcohol, is harmful."

It is very harmful. It's similiar to constantly believing you're mentally ill when you have a mental illness. That's not going to help you get mentally well. Addiction is a mental illness. Maybe 12-step AA programs should understand what's necessary for neurodiversity first before understanding what's necessary for recovery. It makes total sense to me why DEMI LOVATO is fairing better with moderation management methods over total drug/alcohol abstinence. But that's because I understand her well, not because I understand addiction well. I just think... Neurodiversity > Recovery. And, in my mind, associating "recovery" with the term "sobriety" is more dangerous than associating the term "California sober" with "recovery" in my opinion. But what do I know? 😑

"This goes against the popular belief that consuming drugs and alcohol and being in recovery are mutually exclusive, an idea that is deeply embraced by some in the addiction treatment field."

Yes, because the addiction treatment field wants you to be free of your addictions. 🙄 They don't want you to be free of your addictions or your mental illnesses. They want you to RELY ON THEM so that the only "treatment" you can get for your addictions and mental illnesses forces you to continue said "treatment" with them. So that it's a never-ending cycle.

"The idea that recovery is synonymous with sobriety is closely tied to 12-step fellowship programs where step 1 is to admit you’re powerless over drugs and alcohol and the ultimate goal is abstinence."

Exactly. So YOU'RE powerless to make any decisions for yourself that do not include what THEY say is best for YOU. Which is an ultimate and unrealistic goal of TOTAL ABSTINENCE.

"But if you ask your friends, neighbors, or loved ones outside of the addiction field what they think it means to be in “recovery”, most will associate the term with total sobriety."

Yes, and they want to keep it that way because it makes big $$$$$.

Listen people. I'm gonna lay it out in plain English for you

Demi is not saying her "California sober" method is everyone's method. That it is the correct method for everyone dealing with addiction or/and mental illness. In fact she's made it pretty damn clear no one should think or believe it is or should be. All she is saying is that it's a method that she's found to work for her. And is it working? Well, only time and experience with it will tell. I don't know if it will for her longterm but it certainly seems to be working for her at the moment. And that's all that matters for the moment. But, for me personally, I think neurodiversity should be put first over recovery because all people aren't the same and therefore the same method for recovery will not work for all people. There are different pathways to take and different options to try. Some not so popular than others. All Demi is doing is trying those "not so popular" methods out because the one that everybody says, thinks and believes will work did not work for her at all. Sobriety did not work for her and, forgive me for using this metaphor, that's a hard pill to swallow for some people who hold the term "sober" so closely to their heart and dote on it like it's the love of their life.

I have genuine faith that this moderation management method (her "California sober") will work for her. Because, like I said... I know and understand Demi very well. I know that extremes are not right for her. And total abstinence is just another extreme for her to get addicted to on top of her other addictions. The woman needs balance in her life. She knows she needs balance in her life. So therefore she's trying that "balance" with her issues with drug and alcohol addiction. She believes it will work. And I think she's right. Will it work for somebody else? Probably not. But it's a viable pathway to take and option to try in any case. What more harm could moderation management do to some people than the harm total abstinence can do to some people? Because I definetly say the latter is far more dangerous.

We, as a society, need to get more comfortable with the term "weaning" regarding substance addiction first of all. You would not make a baby go without their mother's milk or baby formula in order to get them on to eating solid foods. Of course not. You would wean them into it. So why isn't this area of logic applied to substance addiction? It should be! That's my take on it and I want to develop this area of logic further as I learn more and more about the mental illness of addiction and substance abuse in general. I know very little about addiction. I don't know a great deal about mental illness either but more so than just what little I know about addiction specifically. But what I do know and understand very well is neurodiversity and the relationship between the external and the internal. Meaning the relationship between the environment and the human mind/body. And my argument for what to do for mental illness (and addiction, most likely) is that you must get to know and understand this relationship first before tackling recovery in any aspect of life. The relationship between "I" and "other" is extremely important for interaction of any kind with people, things, substances, ideologies, philosophies, stimulants... Everything. And I just don't believe any "program" or "treatment" for addiction recovery or mental health recovery can be without the knowing and understanding of this relationship. This primary relationship with "I" and "other" and all interactions between them.

Now for someone who lives to such extremes to the point that they are misdiagnosed with bipolar disorder (DEMI LOVATO)... It is quite evident that the key is to lessen those extremes. And the way to do that is by balancing the extremes. Not by completely taking all of them away.

One extreme for her is a total obsession with perfection and with being the best at everything, looking as good/pretty as possible. Essentially constantly setting the bar higher and higher to reach with each grasp. That is an addiction for her.

Another extreme for her is disregarding any and all expectations or goals, rebelling against every law or moral or teaching whatsoever... Basically not giving a crap about anything. Not even her own well being,... to the point where she's results to substance abuse just to keep going. To have some kind of high.

Now throw in a strict schedual of night and day, around-the-clock restriction, limitation and control into the mix and have that happen for 365 days a year and ask yourself will it lessen any extreme for Demi or will it just add another extreme on the top of it? One would absolutely lose their mind trying to keep up with all of this while being expected to perform to any degree whatsoever as a "star". One is going to fail. More than fail. One is going to seriously impact their health. One is going to be on death's door. So even though I don't know and understand addiction or mental illness very well, don't say I don't understand the tremendous effects it can have on neurodivergent people. I know and understand more than any average person would ever fucking know or understand. I know and understand Demi. And I am saying moderation management is the best method for Demi's substance abuse recovery because her addiction is not substances. Or rather - not primarily substances. Her addiction - her primary addiction - is to be PERFECT. She needs to tackle that addiction before her addictions with substances. With drugs and alcohol. And the best way for her to do that is to find balance in every aspect of her life. With her food, with her career, with her music, with her interactions with EVERYTHING. If she can tackle that addiction and wean it down to where she doesn't need to feel like she needs to be so perfect all the time and put herself through the ringer with her career... Then her issues with substance abuse will most likely disappear by themselves because she wouldn't need those substances or stimulants to cope anymore. There's no cause for it. No trigger. So, yes. She's right. Moderation management is the correct method for her. And it's proven to be so far, so let's not villify her for it just yet. Let's wait and see what the results are first. Like you would with any scientific study. And if it does turn out to be that you were right... Then you can make your conclusions on whether it's a method that should or shouldn't be used or associated with drug/alcohol addiction recovery ever again. I personally don't think so. I think she's got it now because, with Demi, it's primarily a mental health issue with her feeling or thinking that she always needs to be perfect. I think if that addiction goes away, then the addiction with the drugs and alcohol will go away on its own. There will be no need for a "recovery plan" at all for it because she's got the stimulants that she needs to remain in a healthy and balanced mindset.

Demi's effectively killing two birds with one stone. She couldn't even kill one before her overdose happened and that was not her fault. It was the fault of the people constantly around her making sure she never had any stimulants whatsoever. Leaving her powerless to ever get "mentally well" in the first place. Her last recovery team left her in one big jam. They took all the stimulants or coping mechanisms away to deal with her addiction issues with perfection and body image and eating disorders. They refused to wean her and it only made the situation worse. I mean what did they think was gonna happen? NOBODY could get "sober" or "clean" or "recovered" or "mentally well" from that level of restriction, limitation and control, let alone DEMI LOVATO, a "star" who was given access to everything under the sun as a child and was taught and told to be perfect at the same time.

Oh yes, I totally get it. And that's why I can say with complete conviction that, this time, Demi's got it now. She's got a handle on every addiction or mental health issue plaguing her because she's gone right to the root to where it all started to begin with and she's weaning herself. 👏 And you know, if you cut the head off a snake, the whole body dies along with it without ever needing to take a second chop. Apply that awfully corny metaphor to all I've just said and you'll totally get it too. Addiction and mental health recovery is not a one-size fits all method. There are other methods. Demi's just trying those other methods and being publically transparent about it. She should be respected, not vilified. I'm done.

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fishscholar · 3 years ago

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long time no see, guess who’s a graduate!!

BS of Psychology with a minor in Women, Gender and Sexuality Studies!!! (June 12, 2021)

As someone whose adhd went unchecked for 15/16 years, I never expected to be here. I was a person who would fall asleep in class due to fatigue, never complete tests on time because the noise in the classroom made me want to cry, and feel like I was doing everything wrong and it was my fault. I really cannot state enough how mental health care (both medication and my own study habits) changed my life. I hope that by working in psychology I can pay back what it has done for me. I am still learning about my own neurodiversity and how it affects me, and I hope to create a world where it is not something that is muted but is worked with. Neurodivergent people belong in every field, we are needed!!!!!

I will keep updating this blog (grad school is next after all!) and will try to keep you guys updated. But thank you so much for following!

#studyblr #tender scholar #grey academia #graduation

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eroticcannibal · 5 years ago

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What's recovery rhetoric? I think I have a basic understanding of it, but I feel like I'm missing the nuance of it, if that makes sense?

Ok I’ve learned my lesson, I’m typing this up in wordpad too and also I’m lazy so I’m cribbing from previous posts (which I will link to in case anyone wants some further reading). Also it might not be necessary for u but I’m gonna cover basics in this in case any newer followers are curious.

So, SUPER short version, “recovery rhetoric” is the eugenics-lite way that recovery is discussed and pushed on mentally ill/mad/neurodiverse people. Recovery rhetoric is essentially the intra-community version of neurotypical ableism and their ultimate goal of eradicating neurodivergency. It’s an ultimately harmful attempt to try and assimilate into neurotypical society. Now I don’t think those that perpetuate it are intentionally malicious, I completely understand the desire to get better and be “normal”, but nonetheless the impact is ultimately harmful.

Things that are typical of recovery rhetoric:

Constantly changing redefinitions of “recovery”. Recovery means the problem is gone, which for most people is not possible, ever. Most people engaging in recovery rhetoric recognise this but rather than give up on recovery, which is demanded of all of us by ableist society, they attempt to redefine it, which creates a situation of one side telling a vulnerable person that “recovery is possible!”, which sets them up for the trauma of constant and inevitable failure for not living up to The Actual Definition Of Recovery, which will usually be internalised as a personal failing.

The insistence that their is One Way That Recovery Looks. To make this easier to discuss here I’m going to define this as “improvement” rather than “recovery”, but recovery rhetoric ignores the variety of people and their situations and experiences. The standard for improvement tends to be go to therapy, take your meds, “healthy” (read: respectable by ableist standards) coping mechanisms only etc etc which is inherently harmful for prioritising respectability over what is actually helpful for an individual.

One example would be the earlier discussion on my blog regarding addiction, the recovery rhetoric approach would frame replacement and even addiction itself as “unhealthy” coping mechanisms, therefore things that should be eradicated immediately regardless of the individuals situation. Their is no consideration for those who would be worse off in their current situations without their “bad” ways of coping. No consideration for those that respond differently to different things (insulting myself is FUN it doesn’t actually damage me, the same is true of others, please leave us be). Their is no consideration of the fact that “healthy” is subjective. Their is no consideration of the fact that for some “healthy” is UNACHIEVABLE. Their is no consideration of those who would be harmed by “respectable” methods of improvement, such as therapy or meds (abuse within mental health fields exists and is rampant). And this tends to breed a lack of compassion for those in worse situations than those who can just drink a glass of water and take their meds to feel better. It’s respectability or you aren’t trying hard enough and you just want to be ill. Because recognising that personal improvement is actually antithetical to the expectations of ableist society, those entrenched in recovery rhetoric will tear down anyone who is a threat to their viewpoint so they can hold on to the hope they will be “normal”.

(Also, I’ve just realised this parallels the CBT approach: removing a negative behavior results in the problem it is a response to being solved. Which is… not how things work but given how CBT has been pushed lately above all other forms of treatment due to low costs, to the point where some other treatments have been cut away completely, I’m… much less suprised by this aspect of recovery rhetoric. I’m copywriting this insight /j)

The idea that to be neurotypical and sane is the default, what we should all aim to be, and that existence outside of that is a deviation to be fixed no matter the cost. By God You Better Be A Productive Cog In The Machinery Of Capitalism Or You Have Failed. This links in a little with the previous point, in that what is considered “healthy” and “recovered” doesn’t always correlate with what is good for someone.

The pathologising of Every Damn Thing Even If It Is Harmless. Not texting back is because you are traumatised. Don’t do toooo much self care because that’s indulgence. Don’t trust people? It’s because you’re crazy, not because people have shown you can’t trust them. I could go on.

Coercive loss of autonomy through intra-community pressure. You are not allowed to be ok with being ill or mad. You are not allowed to disagree with professionals, you must submit to them and seek treatment from them. Recovery is not optional. Don’t you dare suggest there is nothing actually wrong with you. And of course listen to some random blogger who knows nothing about your life, they just want the best for you, you aren’t anti-recovery, are you?

The denial of outside factors in mental illness and madness. If you have a problem, it’s because of you, your brain, you have to fix it. Your recovery is down to you. Homeless? Abused? Can’t get medical treatment? RECOVER ANYWAY.

It leaves no space for those who have been harmed by recovery attempts and the mental health field. Certainly no space for those that have been killed by them.

(can u tell I’m getting lazy towards the end here? My hands hurt, sorry)

Recovery rhetoric may seem quite lovely on the surface, but the end result is a few uwu recovery drink-water-take-your-meds blogs feeling all morally superior because it’s easier for them, and a culture of attacking anyone who has life a bit harder.

MORE POSTS ON RECOVERY RHETORIC, PRO-RECOVERY CULTURE AND RELATED TOPICS )some are more serious, thought out posts like this, some are fairly casual exchanges of experiences)(check the notes, there’s some good additions)

[Example of the hostility towards those who cannot perform to the standards of pro-recovery culture]

[The value of “toxic” communities like pro-ana]

[Pathologising normal behaviors]

[What is recovery culture]

[A positive approach to personal improvement]

[The cost of recovery]

[Personal accounts of psychiatric abuse][Theres a ton more on my blog if u search “psych”]

[An alternative view on living with a weird brain, which I include mostly due to the hostility in the notes as an example of the behavior directed at anyone who does not perpetuate recovery rhetoric. IDK if the worst of it will show up in the notes cus a lot of people blocked me over that post lmao]

[Pathologising healthy behaviors]

[How recovery culture can cause a lack of trust in yourself]

[”What is recovery?” a perspective by a psychiatric survivor, I’d also recommend that whole site for anyone interested in anti-psych, recovery-critical and Mad perspectives]

[An alternative vision of treatment]

My blog is not the be all and end all of reading, I’m just not looking further lmao

#Anonymous #why did i write this much

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wanderingglow · 7 years ago

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Day 16

Work and School.

There’s only one thing I can think of when it comes to the school system and how it treats its autistic individuals, deplorable. Specifically teenagers on the spectrum. There is absolutely no protection for them in the most socially straining time of a person’s life. Not only is it a fight to have anything accommodated on their IEP ’s but to even get the IEP in the first place is such a hassle. Then there’s the problem of children and teen’s who aren’t in special education classrooms having teachers treat them like their IEP’s don’t exist in their classroom. Just because a child or teen is in a mainstream classroom does not mean they can magically conform to your style of teaching. And if you as a teacher can’t take the time to educate yourself on a student or find it hard to teach a group of students. (Trust me there will almost always be more than one if not one person with an IEP in a mainstream class) It’s about time you reconsider your line or work. It’s not even about not being “qualified” for teaching an autistic person. It’s about simply taking the time to read an IEP and following what it says.

Now what really get’s to me is how little get’s done for bullying around the middle school and high school age range. Especially for the girl’s on the spectrum because of girl bullying can have a lot to do with psychological aspects. Most of the time I find that the kids will come to a facility member of the school and the teen will get the runaround by said facility member. I’ve even asked before; “If I was sure my friends didn’t like me.” It was because I kept going by what the school said and giving “my friends” the benefit of the doubt I got bullied. My friends were users so they kept seeming like they liked me but the only reason they hung out with me is so they could screw with me and impress a guy. An I felt like if I didn’t hang out with them they’d make my life an even worse hell. I felt like I had nowhere to go. The truth was facility knew something was up and either wanted to help but couldn’t or just didn’t want to get involved.

How I think we could fix this problem is by a few of the following ideas I’m proposing.

Consequences for school staff who don’t want to get involved in fixing social bullying and bullying in general.

More information on how trauma effects autistic individuals differently than neurotypicals and even some neurodiverse.

More therapy services made available out there for kid’s and teen’s that have knowledge of autism.

More rights and tools for people who do want to help autistic individuals and above all better tools and rights for the autistic child or teen themselves.

We teach children from an early age on what autism is and isn’t and what’s okay and not okay to do with an autistic person.

Teaching autistic people, teachers, and teen’s what mental abuse and toxic behavior look like. Not just “traditional bullying” where it could be more noticeable.

As for the work field, I don’t have much experience in that for my own personal reasons. `

Here are some things I do think we could change about the workforce for autistics.

A little bit of training on autism for managers and bosses on how to best communicate and work with someone who has autism. Or vice versa for employees working for an autistic boss or manager.

A little meeting about what are acceptable accommodations to make for the employee or boss with autism.

More mental health day’s off.

Some extra job training.

#actually autistic #autism acceptance #red instead

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insidethecrack · 7 years ago

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Diagnosis : curse or blessing ?

youtube

[did I already tell you how much this show is absolutely terribly awesomely great ? no ? what am I doing ! :o]

“A real diagnosis will help you feel less alone” “Don’t put a label on you” “You don’t look like you’re [insert diagnosis, generally works fine for autism and schizophrenia]” “If you don’t get a proper diagnosis you can’t get proper help”

etc etc

Whether people are pro or anti diagnosis, they all have their words to say... in our faces generaly. Because, you know, mentally ill, you can’t have a proper opinion about this, fortunately, lovely people are always ready to tell you what’s good for you ! Aren’t you happy ?

If this introduction sounds bitter, it’s because I am. The matter of diagnosis and medication may be the two discussions where neurodiverse people are the most silenced, even if we are the people directly concerned by it. So I want to discuss it, for real, even if it’s complicated and we might have very diverse opinions. Please remember : I do not pretend, in any way, that I hold the truth. This article is nothing but food for thoughts. Food I have chewed for years now (it’s in the pipes of this blog since its creation), this is my opinion now, maybe it will change again. So feel free to disagree. I know how difficult this kind of subject can be... no truth, just food for thought.

In the logic of the Schizophrenic Linguistic, I’ve been thinking about the power of words A LOT. A lot of people, directly concerned or not, seem to believe that a diagnosis fixes everything. Well, as usual, reality is a bit more complicated than that. [also, since it’s a complicated topic, I decided that this post will be covered Simone Simons headbanging gif, no reason, just that it’s a light for me and this article needs some light]

Naming is power

If you can name a thing, you have a chance to control it, or at least, to understand it. A lot of neurodiverse people, whatever their diagnosis, whatever their story, will tell you this: once they had a (proper) diagnosis, a lot of things had started to make sense. There was a reason for what was happening to them, and they were not the reason. It may sound obvisous, but sometimes you got to tell the obvious: if you can explain a thing, you can have a grip on it. You can modify it. Not because it’s easy (it’s not), but a diagnosis, a word, will help you now where to start. Things that were isolated are now the pieces of a puzzle. These pieces have borders. There is a picture on each of them. And you can find a way to put them together.

What is less obvious is that the diagnosis is NOT the picture you have to create. The diagnosis is a tool to create it, to understand it. And it’s fucking important to understant that : it is just a tool.

Why is it important ? Because psychiatry is a scam (sorry, had to get that out of my system, now back to something constructive) the lines of the diagnosis change all the time. Some diagnosis have seen their definition widened (bipolar disorder for example), other restricted (schizophrenia), other created a bit of nowhere since we’re still waiting for scientific proof or clear definition (ADHD), some were not full diagnosis, just symptoms, but are now considered as disorders of their own (anxiety), etc etc. You can choose to believe it’s science making progress, or you can be terrified because it doesn’t make sense how they’re playing with our mind. (also, if you’re like me, you might wonder : how is it possible that for each diagnosis they have found the same number of symptoms? and why “five at least” are required to get the diagnosis? why five, why not four or seven??)

Whether you’re defiant to psychiatry like me, or a true believer of the field, I think we can agree on this: diagnosis when it comes to mental health is not that easy. It’s all made of blurry lines and grey areas. And it makes sense: it can already be very tricky to get a diagnosis for a physical problem, so a mental health issue? Sometimes the concerned person is not able to properly explain it, or because they just have no idea what the problem is, or because they have no idea that this or this can be a problem. To this, you must add the therapist’s subjectivity. And this is not the angry anti-psychiatry me talking. It’s just that therapists are human too. The best therapist can be the worst therapist to someone else. Therapists have bias too... Autism is less diagnosed to women, not because there are less of them, but because of what we consider autism is and what a woman must be. Schizophrenia is more often diagnosed to black persons. Etc etc. They can miss something, or don’t connect the dots well. They can be great to spot depression and PTSD but totally hopeless when it comes to personality disorders. And when you add to this that a huge part of them just think a magic formula exist to cure each diagnosis, or that they think they’re some kind of Brain Wizard, sexism, or transphobia... the result can be absolutely terrible.

Understanding, not magic

Having a proper diagnosis will give you the tool to understand parts of your life history, of yourself, but it won’t fix it. This is very very very important. I’ve seen so many people, concerned or not, getting this wrong. If there is only one thing that looks like an absolute truth in this article it’s this : THERE IS NO MAGIC FORMULA. No pills. No word. Nothing but hard work and time... (like basicaly anything which worths it in this life)

It’s important to remember it. When you’re the concerned person, and you get to look for a diagnosis, it’s probably because you’re in pain, sometimes for years. You’re in pain and you’re tired. And you’ve been for so long, you want solutions, you NEED solutions. And probably you don’t have time to wait. If a diagnosis will give you a key to better understand what you’re going through, it still won’t fix anything. You’ll still have to do the work of understanding, of changing. And this is a long, painful, and terrifying process... We would like a pill to numb the pain, a formula to whisper to any god, but it doesn’t work that way.

To me, word is the picture of a thought at a given moment. Meaning that the word will last, but not the thought. And one day, the thought might be gone so far, that the word won’t make sense anymore. You’ll have to come up with a new word for the new thought. Well, I think diagnosis makes no exception. It’s still a word that describes a reality at a given moment. We think it’s carved in stones, but it’s not. Diagnosis is a process. The definition of a diagnosis changes from time to time, but so do we. And what might have been true once, might not be in the future.

Schizophrenia is not what it used to be. Shrinks say you’d better have cancer than schizophrenia. That you never heal from it. But people did, and people do (at least a third of schizophrenic people get cured !) I was told I’m sick, I’ve always refused to think so. But a schizophrenic friend thinks she is. And it’s not a matter of who’s right or wrong. She has the right word for herself, and I use the right words for me. (I think we’ll come to that special part later) I used to just say that I was psychotic. Then I said I have schizophrenia. Now I say I am schizophrenic, or neuroatypical if I’m not sure I’m in a friendly space. Each of this words are part of my journey along the diagnosis.A new one may come in the future, or not.

Words and diagnosis can change, but you still got to do the (hard) work. Which means to try things, and sometimes fail.

It also means that : run away from any therapist who pretend they have a magic formula (may it be meds, yoga, type of therapy, words). Run as far as you can from them. They’re dangerous... because they won’t listen to YOUR words. They won’t let you choose the right words for yourself. Because they think only one set of words exist for one condition...

One word for so many realities

Let’s go back to a simple thing : a cold. If you’re like me, you may think a cold is a very simple (and genuine) illness. That it’s pretty easy to diagnose, in fact, so easy that probably none of us ever goes to a doctor to get a cold diagnosed. But we all be so wrong to think that a cold is the same for eveyone (but we still do). The symptoms are easy to spot : a blocked up nose, maybe a sore throat, headache, maybe a bit of fever, sometimes a pain in the eyes, like they’re swollen. The thing is... none of us live it the same way. A friend of mine, as soon as she has a 38° fever (NB : if you’re not used to the celcius system : normal body temperature is 37°C, 38 is barely a fever for an adult, but 39 and 40 are worrying, and at 41: run to the closest hospital) she can’t move and is in pain like me at 40... A cold is supposed to be short, but I had cold lasting for 4 uninterrupted months. A friend of a friend just got cancer and chemio, he’s cured and fine, but if you have a cold next to him, you might kill him. Also, do you know what has all the symptoms of a cold but is not a cold ? Allergies, the flue (and probably a few others). The only difference being the causes or the intensity. But what if you didn’t know you had allergies and they started during the cold season (meaning all your relatives and people in the subway have it) ? If you feel terribly sick with a 38° fever, how will you notice the difference of intensity between a cold and the flue ?

Even a simple cold isn’t that simple. So now, if we transfer this logic to mental health, we will have a glimpse of the tricky part of diagnosis: it’s not that simple. As we say : the definition of diagnosis changes, the subjectivity of both patient and therapist has a role, and now we must remember that a simple word can recover so many different realities.

In this blog, as often as I can, I try to explain how schizophrenia is for me and people who has it differently. So if you’re a regular reader, you might have an idea of this, but just for fun, let’s illustrate it even more.

Did you know that hearing voices is NOT a symptom of schizophrenia ? Many people hear voices without being schizophrenic and many schizophrenic persons do not hear voices. Both are often associated because it’s quite common in schizophrenia, but in no way it’s a rule. Regarding the voices, some recognize them. They even name them. Some can clearly understand them, when for other it’s just a fog. Some hear only one voice for all their life, and it’s always the same, when other hear different voices at different ages. For only ONE element of ONE symptom (not being able to recognize a thought as theirs), the possibilities are almost endless. Can you imagine the number of possibilities when we add ALL the element of ALL the symptoms ?

This is why I told you to run from anyone pretending they have some magic cure: if you consider this mathematic reality, it’s impossible. This is why there are still to many things which are unknown or missunderstood: because mathematically the number of combinations is barely understandable by humans. A diagnosis is a list of GENERAL symptoms that are supposed to cover very different realities so they can fit in one unique box.

A diagnosis CAN’T be a magic cure because the risk of error is way too big. So remember : when you’re given a diagnosis, you have the right to ask why. Why does your therapist think this diagnosis fit you ? What does it mean ? And you have the right to disagree. Being wrong doesn’t mean your therapist is a horrible person wanting to hurt, maybe they just didn’t consider a key element as key, maybe there is something you didn’t tell because you didn’t think it was relevant, or maybe there was a bia. If your therapist is a good one, they’d be willing to discuss it with you. Because, once again, a diagnosis being a tool, you’ll need to understand how the tool works, and they have to make sure they give you the right tool. Once again, if they refuse to discuss the whys with you : run.

Loneliness and stigma

Diagnosis can also be a double-edged sword.

On one side, having a word means you’re not alone. They don’t create word for just one person. Having a diagnosis means having the right tool, it also means you’re going to be able to look for people with the same diagnosis. You’ll be able to share experiences, to exchange tricks, to be heard without having to over explain yourself. Knowing that you’re not alone can be such a relief ! No, you’re not a monster, you’re not the problem. You even have peers that can understand you !

I think I don’t need to develop this point much more right ? :) We’re humans, none of us like feeling lonely and forsaken...

But on the other side... it comes with a price. Stigma around mental health is clearly no joke. For some diagnosis, the stigma is so strong that we have to live in the closet. We have to do some kind of coming out to our relatives (I call it “a psyching out”, because English is so easy to neologise with).

Schizophrenics are psycho killer. Bordeline Personality Disorder people too. And so are Multiple Personnality Disorder.

For us, it’s sometimes better not to tell because we really take the risk to lose everything.

But even if it doesn’t get to that point, other diagnosis come with their share of stigma too. We hear of those diagnosis so often that we think we know what they are. Spoiler alert : we don’t, for most of us.

Depression, PTSD, autism, bipolar disorder, ADHD, anxiety, suicidal, eating disorders etc... we hear those words so often we think we know when we don’t. We know the exageration, the stupid things media say without checking. We know from a distance. We use the wrong words, we do poor choice of words, we have the wrong reaction. And people with these diagnosis suffer from this ignorance, they have to deal with it daily, coming from their loved ones sometimes, which make their life even harder.

Also, being diagnosed is being labelled... and that part is hard. How not to get stuck in your diagnosis ? How can you do to keep it a part of yourself but not let it becoming your whole self, especially since for some of us it had a huge impact on the construction of said self ? Those are already tricky question to ask oneself. But telling your relatives about your diagnosis means you’re also inviting them to the labelling party... and you won’t be able to control how they will label you ! Will they just listen to what they think they know because they saw this TV show or read one article ? Or will they do some research on their own to understand what you’re going through and know how to support you ? Will they run away from you ? Will they bring everything to your diagnosis ? Will they stop inviting you not to “tire you too much” in a “hell in paved with good intentions” way ? Will they ask you directly so they know what to do and what not to do ? Will they avoid the subject and act like nothing changed ? Did something change anyway ? Will they tease you about it ? If so, will they bother asking for your permission or not ? Will they tell you what you should do and what your should not do after they’ve heard of the wonders of yoga and gluten-free food ? Do this list ever end ? (no)(at least that last one was easily answered)

Whatever diagnosis, wherever we are on our journey with it, we ask ourselves all these questions all the time.

Bonus question : what’s easier, telling them the diagnosis, or explaining what it means ? Saying “I’m schizophrenic” is quicker and less overwhelming (the irony of this sentence...), but if I’m not sure the person I talk with is aware enough, this might not be the right strategy. They won’t know what it really means, either because their head is full with psycho killer bullshit, or just because they genuinely don’t know (hence the birth of this blog). So it might be better to explain a bit “I hear voices and have recurrent hallucinations which I can tell apart most of the time. In general, I have to live with a broken sense of reality”. But this solution might sound terrifying because it opens too many doors and these doors all lead to an unknown world (and I don’t even blame them to be scared. I mean... I live in this said unknown world. It IS scary...). And there’s not really a third way.

So a diagnosis helps you feel less alone, until the moment it makes you feel even more alone than before.

Responsability and power

I know I may sound pessimistic, so I want to emphasize this, even though I already mentioned it : a diagnosis gives you power. Knowledge is power. Naming things is power. It’s no longer an unknown thing eating your brain. It’s a thing you can name and learn to understand. There is no much more to say, but it is so important I will repeat it over again : IT GIVES YOU THE POWER TO UNDERSTAND AND GET TO KNOW YOURSELF. It’s not going to fix you, because you’re not broken. You’re hurt. You’re different. You may be not functionning well at the moment. But no psychiatrist was stupid enough to create “broken” as en entry in the DSM, and I think it says something.Even if some of them talk about “broken brain”, they still haven’t turned it into a full diagnosis, and even though, you’re not your brain, it’s just a part of you.

It gives you power. The power to define yourself. The power to choose the words that work for you. And you can change these words as you’re working your journey !

Use the words, don’t let them use you.

Also, and this might be a bit more polemic so I hope I’ll succeed in phrasing it well, don’t let them, or yourself, tell shit like “it’s not you it’s the disease”. I know sometimes our brain makes us do to stupid shits. But sentences like that, they directly open the gates to hell... They take away the responsability of your action from you. Thing is, if you’re not responsible for your actions, in the long run, someone will have to be. I’ve been there, in this place where all responsability is taken away from you because “it’s not your, it’s the disease” and believe me, you don’t want to go there. It’s hell, it’s the worst that have ever happened to me, and i’ve spent nights seeing my own body being torn apart so I could see my own head rolling on the kitchen floor... It’s always for your own good, it’s always to protect your. People who say this are very well intentioned, whether they’re therapists or your relatives. But at the end of the road : you don’t get to decide what you feel, what you think, what you want. Anytime you’ll express a slightly strong emotion “it’s not you, it’s the disease”. Which means that if they did you wrong ? Well, you’re not really angry, it’s the disease, so they don’t really have to question themselves. You’re sad ? Well, not really, it’s the disease. Take this pill / do some yoga, you’ll be better. You’re happy ? Well that’s suspicious, might be the disease talking, are you SURE you’re really happy ? You’re afraid ? Well the disease makes you afraid of everything so why bother ? Anytime you’ll try to express what you think about who you are... well the disease makes you unable to form a proper thought or to clearly see the world around you, so your opinions are biaised and we won’t listen to them. And when it comes to what you want to do regarding your own life... well, with your disease it’s not possible to do so and so. They won’t let you think about what you can or can do. They will decide what are your limits. For you. Without asking.

Don’t let you trapped in the “it’s not it’s disease” road. Sure, it sounds easy and tempting, and we all want to do this once because it is so so hard. I write all this shit (with which you can always disagree, remember), but let me tell you a secret : there are still so many moments when I just think “when don’t I just give and let myself turn completely crazy so I will not have to take responsability for anything”. Maybe this too shall pass, maybe it won’t. It happens to the best of us. It’s normal, and it’s ok. But if we give up to this... we might never come back. We will lose so much.. we will lose our feelings, our right to think and disagree, and even our power over our own life. Everything comes with a price... if we give up the responsability of our life because it was too hard... we’ll give ourselves up to them. A them that might not be very comprehensive or well-intentioned...

I often want to give up to the madness just so I can be declared not responsible of my action anymore, which means I won’t have to decide, won’t have to fight anymore. But schizophrenia is a well-crafted defense system (schizophrenia is an artist, a weird gloomy scary artist, but still), and anytime I have these thoughts, it brings back some conversation with the therapists from these days :

“I want to stop going to the temp hospital... I hate it here. I hate being there. I hate the people there. It scares me, I don’t want to me one of them. _But it makes you feel good ! What about going twice a week instead of only once ?”

“I forget my meds the other day and I had troubles falling asleep. Are the drugs breaking my sleeping system ? Does it mean I will never be able to sleep without pills ? What will happen when I stop taking the drugs for good ? _You must not forget your pill !”

“I’m jealous. They live with my friend, and when she’s on the phone with me they still talk to her, they’re stealing my time with her, it’s not fair.. they get to live with her and I can only call once in a while when I have no friend here. It’s not fair and I’m jealous of them. _This is not what you feel.”

And I remember what it truely means to let them tell you “it’s the disease”. Don’t fall in the trap.

Don’t trap your relatives in this hell. Let them chose how they define themselves. How they name themselves. Stop the injonctions and listen to them, even if you disagree (I’m very anti-drugs, but I will never force my beliefs on friends who chose to be on drugs. We’ll discuss it if they want, but I’ll respect their choice anyway. And If I can do this, I have no worry, you can too. Because you truely have no idea how anti-drugs I can be...). It also means that if they don’t want to get a diagnosis, they can. Some people need a word to fight. Others will rather tackle each symptoms on their own. With all the stigma, a diagnosis can be ultra scary and for some people, it’s a real handicap in their quest for well-being. You have to respect that. If they want a diagnosis, hold their hand in the process. If they don’t, well, still hold their hands because they still have issues to fix ! :o

Ask your therapist why this diagnosis. Make your own research. Search for other people like you. Search for their stories. Disagree with your given diagnosis if needed. Get to know yourself.

I hope life will give you the time to do this diagnosis-travel on your own terms. Whatever way you choose, I wish you the best. May you find the tools that work the best for you.

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I hope you found this article interesting (or even helping :o).

I want to try to write here more regularly, like maybe once a month... so if you have any question or topic you wanna see discussed here, let me know ! I’m looking for way to communicate with you (so you can submit question or topics more easily), but FB is worse and worse for this kind of this and I’m regularly forced to avoid it because it triggers my paranoia... a discord maybe ? Any ideas ?

Also, I have a little ask... I’m back to precarity shit and all the money anxiety it brings with it. So maybe, if you like this blog and you can, maybe you can buy me a coffee ? Or just share the articles you like. And if you can’t, it’s ok, I still with you the best of way on your own quest for well-being <3

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likeabxrdinflight · 4 years ago

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I commented on a thread about how people should research [Stigmatized Disorder] before diagnosing a character with it based on incorrect factors and myths about [Stigmatized Disorder]. I was told I was being bougie, classist, ableist and got a lecture of that perils of the DSM because they thought I had a degree in psychology or something. They even claimed I was upset about slurs because I wanted to be correct.

I have that disorder and so does a family member I am close to Fun times.

I cannot describe the rage I felt at being talked down to about my own experience by strangers. I don’t know why I wanted to send this to you. If you have any advice that would be cool. Because I was thinking of going into the mental health field, but I have a feeling this online experience is setting a tone and I don’t want to have to constantly give my information to people. Has a similar situation ever happened to you online or irl? How did you handle it in a way that worked for your own mental health?

First of all I’m sorry that happened to you. The internet can be a really ineffective place for having these kinds of conversations. It’s maddening sometimes, especially when people make these kinds of baseless assumptions using absolutely no information or context.

I think the reason people sometimes find it classist and/or ableist is rooted in how difficult it can be for people to get a proper diagnosis (and arguably also an education) in the real world. Unfortunately, mental health care is often out of reach for people because it can be so financially inaccessible. Because of that, there are a lot of people who end up self-diagnosing. I personally have mixed feelings on this- on the one hand, I know from being inside the industry how much of a bitch it can be getting an accurate diagnosis. Testing is expensive, I know because I’ve seen the bills for it. (It’s also where the money is in the field, go figure.) On the other hand, people who are not professionally trained in diagnosis frequently do not know how to use the DSM appropriately, nor are they going to necessarily be familiar with the diagnostic process, symptom overlap across conditions, or comorbidities. It’s very easy to google a list of symptoms and say “oh, I do that” and think that means you have the disorder.

Admittedly DSM is flawed, I’ll be the first one to say that, but it’s also grounded in some reality. And personally I’m of the opinion that you need to know what you’re talking about to take it down effectively. You can’t deconstruct something you’ve never learned how to construct in the first place, and there’s a reason people need a master’s degree at least to learn how to use this thing.

The fact is I think you’re right, people should be careful about applying diagnostic labels to characters without doing careful research and due diligence. I see this a lot these days, where people are wanting to create neurodiverse headcanons for characters- something which in theory I support, in practice I think can be a bit problematic for the reasons you mention. I see autism get over-diagnosed among a lot of fictional characters that are really just traumatized, and I understand why because a lot of symptoms of complex trauma look a hell of a lot like autism. But you don’t necessarily know that if you’re not trained to see it.

I have definitely run into a lot of obnoxious people on the internet who think they can talk down to me about this kind of thing. I’ve also run into a lot of people who think they can talk down to me because I prefer one character over another, or because I had the “wrong” fandom opinion about something. I usually handle this kind of annoying discourse by blocking people and moving on, if I’m being honest. You can usually tell when people aren’t engaging in good faith and being reactionary or obtuse on purpose. It’s usually not worth getting into arguments with people who have no desire to listen.

Building up your own sense of boundaries and security in yourself is pretty important to functioning online too, where people will try to tear you down for just about any perceived infraction- to some extent, you can only take so much seriously. If anyone tried to call me “bougie” for having a psych degree, I think I’d have to laugh. I grew up in a poor farming village, I am so far from “bougie”- and I know that about myself. Sometimes that has to be enough.

My experience being a mental health professional in the real world, however, has been significantly more positive. If anything, I find people in the real world are more likely to downplay or minimize a mental health disorder instead of over-diagnosing people. That can be frustrating. But I’ve also worked with some wonderful people over the years.

If you want to go into a mental health field, my advice is honestly to ignore what happens online and pursue what feels right for you in your real life. These experiences are not a baseline for what the work is actually like. As a health care provider you’re going to be working with people face-to-face (either in person or via telehealth), which is just a different social world. Absolutely no one behaves the way they do on twitter when they’re looking someone in the eyes. Because of that, my experiences online are so divorced from the real world, it’s almost jarring.

Also as a professional, you do want to protect your identity as much as possible when you’re existing online, so despite how obnoxious these encounters may be, you are not obligated to disclose your diagnosis or even your credentials to justify your opinions, nor do I think you even necessarily should. I tend not to share much identifying information- I’m willing to speak about my experiences, typically, but never in a way that’s uncomfortable for me. I also won’t give out anything that would let people find me irl either (eg., cora is an alias I use, not my real name). That’s something I’d recommend for most professionals using a website like tumblr or reddit (even twitter tbh), where identifying information could be weaponized.

I have never given out proof, essentially, that I am who I say I am or that I have the degrees I say I have. No one on this website will ever see a photograph of my diplomas. That’s on purpose.

#Anonymous

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oumaimaoriflame · 5 years ago

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