Categories
Spectrum

Labels (Part 2)

I have never heard either of these labels [high-functioning and low-functioning] deployed to mean anything but “still not quite, you know…one of us.”

That’s what “____-functioning” means.  “Not one of us.”

Dani Alexis

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In addition to being ableist and grading against a neurotypical standard (which is its own, major issue), functioning levels attempt to reduce all the complex information about a persons abilities and needs over time and across a variety of contexts down to one dimension. That’s always going to be inappropriate dimensionality reduction, simplifying what we know to the point that it’s useless. Talking about low, medium, or high support needs isn’t going to fix this problem. Neither will talking about low vs. high masking as if either of those means a single thing. Those still use a single dimension, and you can’t shove enough information about what those support needs actually are, or what the specific effects of masking are into a single dimension for it to ever work.

Alyssa Hillary

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For many of us, engaging with an amorphous diagnostic group-think entity is the first step towards getting a solid conceptual foothold in who we are […] It’s also a first step towards securing a place in society. Especially societies which have low tolerance for divergence […]

It’s a slippery slope, isn’t it? […] You want it, pursue it, and then can be used against you. But if you don’t have it, you run the risk of getting stamped on. […]

Ultimately, it’s really up to each of us, how we engage with our identities, how we understand ourselves. How we navigate our social worlds.

VisualVox

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Semantically speaking,
         autistics are outsiders by definition.

Because autism, basically, is defined by divergence.

Based on two articles by Caroline Narby

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Just because it’s not information you need, that doesn’t mean it’s a useless word.

Alyssa Hillary

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Labels are Tools – They can be used for good or bad things

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When labels become boxes, that’s bad. But sometimes labels are road maps. Guidebooks. They show you how to find the information you’ve needed but never knew how to find or even if it existed.

Jess Mahler

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Calling disabilities by their right names isn’t about labeling, it’s about breaking isolation and making important things speakable.

Ruti Regan

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[T]hey think the problem was that they treated their child like they were intellectually disabled, and they weren’t.

But that’s not the problem.

The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person.

Julia Bascom

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It would be great if labels like autism weren’t necessary.

It would be great if ableism didn’t exist, but that’s one hell of a hypothetical.

Ableism is an extreme and far-reaching problem that can’t be solved without labeling the specific disabilities of the people being harmed.

In a world where most people speak with their mouths and assume everyone else does too, I need the autism label to explain why typing is better. In a world of sensory assault, where “I don’t want to” is not a sufficient excuse, I need the autism label to justify my self-protection.

Alix Ditto Au

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Yes, labels may bring prejudice and ignorance, but they can also bring understanding and much needed support.

Laura Rutherford

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Categories
Spectrum

Labels (Part 1)

[…] as soon as someone says they’re on the autism spectrum, we categorize them and treat them differently.

Creigh, Caley

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It’s interesting the way that little label changes where the presumption lies.

If you’re NT and you decide to go explore a local park on a whim, you’re just indulging a whim. If you have ASD though, that’s ‘dangerous wandering’.

If you’re NT and you hire someone to do your cleaning or your lawn, you’re just freeing up spare time for yourself, but if you have ASD, you’re not ‘living independently.’

Cynthia Kim

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When I am open about being Autistic, I am handing people a weapon to punish me with. [Many times] my autism has been invoked during a disagreement. I have ended up leaving so many communities because I was told that I was only disagreeing because my autism meant I didn’t really understand. […]

Anytime someone wants to dismiss my opinion or experience, they point out that I am Autistic, as if that trumps anything and everything. […]

Telling people that I am Autistic gives them the opportunity to understand me better.

It also gives them the opportunity to dismiss anything and everything about me as irrelevant, deluded, pathological, unacceptable. No one has to provide a logical counter for anything I say because my words are Autistic words so they mean nothing. They are merely symptoms and can be disregarded.

Max Sparrow

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Like it or not, public perception of autism is not very diverse (yet). […] We need adjectives like ‘mild’ or ‘severe’ to help other people understand the extent of the autistic person’s needs.

Chris Bonnello

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There is no such thing as severe autism. There are autistic people.

Autistic people all have needs to be met. Just like everyone else.

These aren’t special needs, or different needs, they are human needs.

Autistic people need food, shelter, connection with other people, and to feel safe and valued. Just like everyone else.

Autistic people will communicate their distress when their needs are not being met. Just like everyone else. […]

They are not ‘severely autistic’– they are autistic and severely misunderstood, severely stigmatised, severely stressed, severely anxious, severely exhausted […]

Michelle Sutton

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My ‘high functioning’ child is not yet potty trained and still has to use diapers.  We support her and teach her, but we never shame her publicly or otherwise for being Disabled and on a different developmental path than other children her age.

Wait, does that make her ‘low-functioning’?  I get confused because she is also reading ‘The Hobbit’, which might make her ‘high-functioning’.

Romana Tate

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(See previous quote for context)

Deviating from the gist of the quote; it is interesting to note how – generally speaking – using diapers and reading The Hobbit are associated with respectively ‘low-functioning’ and ‘high-functioning’ in the first place.

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Part of the problem of the “labels are for jars” argument is that it inextricably links the label with diagnosis and pathology. It completely ignores the possibility that the label can be part of a disabled identity [when it is not] entirely defined by medical terms.

Kim Sauder

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A diagnosis is meant to give a reason. We can say, look, you have cancer. That is why you are feeling so unwell. You have depression. That is why you are so sad. You have this, so you are that. We expect a direct correlation, a cause, a salve to soothe us against all the things in the world that don’t make sense. The things that hurt us. A diagnosis tells us if A, then B. In this way, we define and we mend and we neatly slot the world into order. A diagnosis of disability tells the world where to fit a person, what they can and cannot do, how they will be loved and love in return. It designates relationships and builds hierarchies. From the moment my sister was diagnosed, people expected it would define us, too. Her and me. When they spoke they left so much room for the wrong words, such as caretaker and burden and problem, but too little for the right ones, such as sister and friend.

Out of context, Lauren McKeon

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Being assigned the label also became an experience of crossing over the threshold of ‘normal’ to ‘abnormal.’ […] They also continually compared their inner experiences and behaviors against an imagined standard of ‘normal.’

Out of context, Susan G. Goldberg

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Categories
Spectrum

Blossoming

Popular saying:

If you’ve met one person with autism, you’ve met one person with autism

Stephen Shore

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Autism […] involves varying levels of disability, depending on both the situation in which an individual is placed, and the expectations that are set.

Kirsten Lindsmith

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Just as neurotypical people aren’t uniformly skilled at everything, autistic people have varying levels of competence in different areas of our lives.

Cynthia Kim

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[…] you can be excellent at one thing and barely coping at another. We simply can’t make such a sweeping generalisation of someone’s ability to function.

Bec Oakley

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[…] There’s a related problem where autistic people will hear something from another autistic person, and assume that they have to be similar to that other autistic person.

Mel Baggs

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If you look around the autistic community you’ll see artists and computer programmers and teachers and writers and engineers and activists and baristas and stage managers and linguists and mathematicians and speech therapists and managers and social workers and scientists and athletes and musicians and poets and sales people and business owners and vet techs and moms and dads and grandparents and students […]

Cynthia Kim

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Many people outside the autism community don’t understand the breadth of the autism spectrum, or the effect experience, age, and environment has on our development.

Ashia Ray

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There is a whole spectrum of, very often,

reasonable [and relevant and meaningful] responses [and motivations] to unusual experiences

Partial quote, Elizabeth Bartmess

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Writing Autistic Characters: Behaviorizing vs. Humanizing Approaches

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Autistic people are sons and daughters, husbands and wives, mothers and fathers, coworkers and employees, students and teachers, friends and relatives, neighbors and community members. […] Autistic people have different abilities, different needs, different interests, and different personalities.

Autistic Self Advocacy Network

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Autism doesn’t make us better than other people, and it doesn’t make us worse. We’re not subhuman, and we’re not superhuman. We’re just people.

Ruti Regan

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We’re autistic, we’re human, get used to it

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Think about it this way: is there a one-size-fits-all description that sums up what it means to be human? Of course not, but does that put anyone off trying to describe it? No; instead it inspires people to explore every aspect of the human condition, doing their best to unravel its mysteries in new and intriguing ways, in the hope of giving us a deeper understanding of who we are.

Helen Wallace-Iles

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Extras:

Categories
Positions

Cure

Main argument: Severely disabled

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I don’t hate myself, I just wish there was a cure so I could function better […]

Jonathan Mitchell

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[Some people] would not want a full cure but would take half of one, perhaps lowering the impact of certain symptoms while maintaining the core traits.

Creigh, Caley

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“But if you took away my autism, I wouldn’t be me!” neurodiversity proponents cheer.

“Yes, you would, and no, you wouldn’t. And that’s all okay,” I counter. Every human on this planet […] ha[s] no inherent, independent, unchangeable, enduring selfhood as such.

Twilah Hiari

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[E]very time I see a post about anti-cure or use of “autistic” and the r-slur as insults, there are inevitably a few autistic people commenting that they would actually want a cure, or that they’re okay with people using “autistic” as an insult.

In a vacuum, these sentiments are fine. You’re entitled to your own opinion, and if you are autistic both these matters are of direct concern to you […]

But we’re not in a vacuum.

We are surrounded by ableists. […] if you present an opinion that aligns with their beliefs and goes directly against the held beliefs of the majority, they’re going to tokenize you. Because one autistic voice that agrees with them is enough to undermine the voices of literally everyone else. […]

I’m not saying you should never express that you want a cure or that you think using autism as an insult is okay. […] But you need to be very careful why and how you express these opinions, because ableists will use your voice as justification to hurt people […]

Anna

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When we stop talking about ‘curing autism’ and start talking about ‘relieving autistic suffering’, the research takes on a whole new direction. When we stop using the cognitive shortcut ‘autism’ and start describing the exact problematic behaviors and traits that are experienced as a result of environmental, physiological, or social factors […] we may actually start having productive conversations about autism […]

VisualVox

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On the one hand, I read about how people need to find the positives in their conditions to help maintain self esteem and find a balance, and that makes sense.

On the other hand, I think that if we define the condition in terms of deficits, then the creativity and energy belong to the person, not the condition. And then, the reluctance to be free of the condition (assuming such a thing is possible) disappears.

Out of context, Sarah K Reece

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The truth is – if someone had offered me a ‘cure’ that would make me completely neurotypical in the first twenty three or so years of my life, I would have torn off their hand to get it.

That’s not an admission of defeat on the topic of neurodiversity, or a surrender to the idea that a ‘cure’ for autism is something that is wanted or needed. In fact, it’s one of the core reasons that I advocate so strongly against the very idea of finding a ‘cure’.

[…]

These arguments [that support the choice of a cure] fail to address the fact that the issue here is not being autistic or being LGBTQIA+. The issue is ableism, homophobia, transphobia and all those ways that the world crushes down on you, repeating again and again that you are wrong, that you are defective, that the word was not built for you; a world that demands that you cut off your corners to fit through the hole, when the true answer was to widen the hole altogether.

Erin Ekins

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I’ve thought a lot about that mythical cure, and there have been days, many days, when I didn’t have to think at all – when I knew that, if I had a chance, I’d take a cure in a heartbeat.

I want the things a cure could give me. […]

Can you look at the list of things I want, and tell me if you see a pattern?

Every single one of those things I want?

Have nothing to do with being autistic.

In the end, there are really two things I want when I say I wish I wasn’t autistic or I want a cure. I want to not feel like a freak, and I want to feel safe. Those are hard, scary things to feel and to admit. And, because I’m being honest, I have to ask something even scarier.

What if being cured didn’t fix those things?

Julia Bascom

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We need to rally for mutual respect. We need to rally for diversity. We need to rally for healing. And yes, some of us choose to rally for cures and therapies and miracles. But I think that can be done in a way that isn’t going to hurt others. I think it can be done in a way that makes people look at us in awe and think, “Wow, now there is a group of people that can disagree without bullying one another.” […]

I choose not to say SUCK IT AUTISM on my blog anymore. I mean, I will say it sucks in my head every once in a while, because truth be told, it’s just how I feel sometimes; I don’t want to lie to you. It really is how I feel sometimes. Not every second, not every minute, not even every day. But I do think and feel it sometimes.

But I know now what that particular phrase is capable of and while it invigorated me when I used it the other day, it brought other people to tears when they heard it. And I’ll tell ya, nothing takes the wind out of my sails like realizing just how much damage something I write can cause. […]

Jo Ashline

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[…] And for that matter the whole cure topic gets oversimplified the same way.

While I strongly disagree with the notion of cure and all it represents, not all decent people have even heard of my point of view and not all decent people would agree with me once they did.

I have worked right alongside people who want cures (some of whom even did ‘biomed’), in order to fight for good adult services, against restraints and seclusion, against institutions in all their forms from huge to tiny and stereotypical to stealth, and a lot of other issues that we can agree on.

And I have met anti-cure people who are aspie supremacists, who do great harm to autistic people (especially those they perceive as inferior), and who I would rarely if ever find anything to agree with them on, not even the reasons for opposing cure.

Mel Baggs

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Basically, if there were to legitimately be no pressure to become neurotypical, if being autistic were actually OK, if it were a choice a person made for themself and only themself, with informed consent […] in that world? If it existed, and they chose it, I would shake their hands and wish them luck.

In the world we actually live in, I expect that the cure would be forcibly used on children, […] on anyone who receives services, and for any portions of the autistic community who technically were getting it only under informed consent, choosing not to would be used as a sign of incompetence, at which point it would be forced. That means any organization that states finding a cure as a mission is inherently not trusted.

Alyssa Hillary

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Unlike the porous and broad meaning of ‘disability’ – a word that has come to reflect the potential for community building and solidarity across difference in many disability communities – philosophical and medical framings of ‘severe disability’ presume undesirability, objective tragedy, and potentially a lack of personhood.

Sunaura Taylor

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