Atmosphere – Rays (Part 1)

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[…] an autism diagnosis can be a tool for empowerment. It’s an answer and an explanation, it’s a way out of cycles of self-blame and guilt, it’s a passport to an entire community, and if we’re lucky, it’s a connection to the understanding, supports, and services we need in order to truly thrive, sometimes for the first time in our life.

Julia Bascom

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Looking back over my life through a different lens adds perspective and dimension to my experience.

It explains and validates.

It helps me to accept myself and changes my internal dialogue.

It is a raw process. It is taking this part from here and looking at it in detail, deciding if it helps or hurts, then grafting it where it belongs. It feels more comfortable over all to have things in their new places, but the edges sting where they were pulled at, and sometimes there is an empty space left where it was that I am not sure what to fill with yet.

Michelle Swan

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Speaking about past events using the present’s conception doesn’t necessarily aim to deny the perception that was dominant in the past. Nonetheless, there is often a pervasive subtext that the present speaker considers this past conception to be deeply wrong, and so uses the present’s language to describe the past in an attempt to say it right, according to the present time.

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Access to a collective autistic wisdom, absent for a lifetime, is a powerful force. Through it we can discover the language and concepts we need to ease our passage towards more congruent identities

Sonia Boue

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Having {frameworks} for experiences can be profound, the difference between mute suffering and solidarity and strength in the face of adversity.

Partial quote, Sarah K Reece

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It really helps to have a community who don’t react to my descriptions by saying “that’s weird” or “surely you mean you’re [insert different emotion/reaction]”, and also to have read so many other first-person accounts from other autistic people that chime with my own. Having the language to communicate my feelings with others who can relate is amazingly powerful, and it feels like every new revelation helps me to figure something new out, and describe it better. It makes me think a lot about how important community can be, how much we can learn by having people we can relate to in our lives, and how valuable it is for us to have ever more accurate and authentic representations of different ways of seeing and experiencing the world.

Sonny Hallett

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[…] Remind yourself that seeing your limits just means you’re seeing more of the parameters in the equation. Remind yourself that most people don’t know their own limits that well, and they can’t plan for it. They’ll hit the wall at full speed. So knowing this is a power that you have.

Kate

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[Diagnoses and/or labels] can often be adopted by people […] in order to structure and explain their experiences.

Some people find that having names for their [experiences] provides them with a sense of order and a way to reconstruct their lives.

Finding ways and new meaning in which they can participate in community and re-write their own personal and collective histories, enables a reclamation of voice; a re-naming that encourages re-positioning and the gaining of power and agency.

Monika Dos Santos, Jean-François Pelletier

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Even without an official diagnosis, many people [can] benefit from learning coping techniques with people who have similar life experiences.

Worst case scenario, someone who isn’t autistic learns how to function more easily from people who are autistic. [It’s] the curb cut effect: Disability accommodations can improve the lives of more than just their target audience.

Sara Luterman

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Next

Truth Beacon – Experiences

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The scientific literature is accurate, as far it goes. Multiple sclerosis results in progressive disability (there are scales for measuring this) or loss of function (you don’t need scales for this). But science is empirical, confined to the observable sphere. Science doesn’t know what anything feels like, the nature of anything. […]

Out of context, Paraic O’Donnell

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disability is a complex identity {if it even is _{(considered as)} one}, and disabled people are multifaceted non-monolithic human beings

Partial quote, Wendy Lu

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The moment you forget that you can make mistakes, you are able to do great harm to the people you base your ego on understanding. […]

Viewing yourself as Good With an entire category of people opens you up to massively egotistical mistakes that lead you down the road to outright physical and emotional abuse.

The best way to approach learning about cats is with a combination of respect and humility. Know that you’re going to mess up, but don’t focus on it so hard that you don’t even try. […]

Out of context, Mel Baggs

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Some of the better research I’ve been part of has given me space somewhere to share what I think and feel or how my experiences do or don’t fit. It also follows up in some way with the conclusions. There’s a relationship, a sense of reciprocity at least in the process even if we don’t agree at all about anything else. It doesn’t have to be participatory to be collaborative in that sense. Nor does participatory research bypass issues of exploitation or harm in and of itself. The nature of community is the diversity of perspectives and voice – it is rare to be able to accomodate each of them.

The other kinds of research (and I include interview here) feel exploitative. My experiences are collected as evidence of ideas I don’t agree with and contorted to fit arguments that don’t include me. Or they are simply inept, using my time to educate themselves on matters they haven’t bothered to read about.

Sarah K Reece

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It’s perfectly okay to cherry pick ideas and strategies from different – even conflicting – frameworks to create something individual and effective for yourself/selves.

The Dissociative Initiative

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[…] assume they are a person, and remember what you don’t know.

Julia Bascom

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In the same series:

Truth Beacon – Research & Authority

Truth Beacon – Advocacy

Truth Beacon – Research & Authority

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[N]o matter what you do in the disability community, you will ruffle feathers just because it’s such a huge community, and it’s heterogeneous. It’s full of very different opinions and backgrounds because disability affects everyone and anyone in any culture. So there’s gonna be, of course, dissent and disagreement.

Caitlin Wood

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[O]ne of the biggest dangers that the culture of the autistic community faces is the allure of a single story told from within.

chavisory

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To be an autistic in a minority culture is to realise that we are not all standing on the same ground when it comes to our experiences as autistics.

Dream Walden

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But autism researchers are not geologists, to paraphrase @aneeman. We’re not rocks. We talk back. If autism researchers don’t want to work with people, they should study something else.

Sara Luterman

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Both [the personal experience and the scientific literature] provide insights. But these insights are qualitatively different, and no universal standard sets one above the other.

William Mandy

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The four kingdoms [Illness, Identity, Injury, Insight] may not capture the entire universe of the autism spectrum, but they describe largely non-overlapping perspectives that now divide the world of autism.

Thomas Insel

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No one autism story takes every single perspective into account. […]

Many of the perspectives conflict […] and there are just so many that it’s nearly impossible to remember to include them all.

Stuart Duncan

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[T]here are, I think, many versions of disability pride

Susan Wendell

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We don’t all agree. You don’t have to agree with all of us. You can’t possibly agree with all of us anyway. A lot of times people embroiled in identity politics get really wrapped up in the idea that the oppressed person is always right about their oppression. That’s bullshit. We can be as wrong as anyone.

However, we have on average thought more deeply and for longer about our oppression than other people have, so you can benefit from our experience when dealing with the way your own oppression takes the same shape as ours.

You can learn a lot more about ableism by looking into what disabled people have already figured out about it

Mel Baggs

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…the erroneous presupposition that observation of human performance is an exact science, that performance is evidence of ability, or simply is ability.

Idea and keywords by C.F. Goodey

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[A]utism research […] a mix of insights and insults.

PredictionError

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In non-autism areas, poor quality research and its harms – its waste of resources, its misleading findings – are vigorously condemned. There is recognition that even the best existing research standards are flawed and need always to be improved.

But when it comes to autism, standards have instead been lowered or discarded to accommodate the extremely poor autism intervention literature.

Poor standards in intervention research are seen not as harmful and wasteful, which they are, but as what autistics need and deserve. Resources have poured not into improving these abysmal standards, but into making the very poor quality autism intervention literature more powerful and influential.

Michelle Dawson

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In the same series:

Truth Beacon – Advocacy

Truth Beacon – Experiences

Lines – Amber (Part 2)

Previous

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Sometimes the same behaviors in a person {read as} neurotypical would not even be noticed.

But because people with autism are scrutinized all day, every day, by teachers, therapists, parents, and almost everyone else around them, their behaviors are labeled, treated […]

Partial quote, Lisa Jo Rudy

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When you tell me there is no such thing as normal, this is true, in a sense. The things we as a society prize as normal can not all be found in one person. […] There is no one ‘normal’ person, never was, never will be. So many of us are more comfortable with people like ourselves that we take as normal those with a certain amount of similarity to ourselves, and if we have sufficient power in society, this normal may override the normals of others.

Alyssa Hillary

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There is simply no need to speak at all of ‘what makes us human’ in scientific discourse. What makes us human is nothing, save perhaps our rich diversity.

Sophie Vivian

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A lot of people think they can relate {to my struggles} which means it’s brushed under the carpet as not a big deal.

Partial quote, Amy Miller

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“You know how it is. People like that . . . they don’t experience emotions the same way that you and I do.” […]

I thought about telling her [that I am autistic]. I chose not to. I’m not sure what it would have accomplished if I had told her […] revealing myself to be a person like that

The truth is, I don’t experience emotions in the same way as that woman who spoke to me about her disabled clients. Or in the same way that you do. No one does.

Human beings are cognitively and behaviorally diverse. We are so diverse that we defy taxonomy entirely.

There really is no norm, no fixed point of reference from which to deviate.

Caroline Narby

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[F]ew issues are completely exclusive to one group, but some things affect some groups more strongly than others, and that can be very important.

Elizabeth Bartmess

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[S]ome critics […] suggest abandoning the term ‘autism’ altogether. In their opinion, labelling autistic people as such was merely a mistake: We thought there was a natural category called ‘autism,’ but now that we know more about it, we can see that this was an error.

[I]dentifying as autistic may not be biologically meaningful, but it is politically meaningful

[W]e have our own communities, norms, and practices […] Autism, in other words, has begun to develop into a culture, and this culture opens up the space for autistic behaviors to begin to manifest as meaningful […] challeng[ing] existing standards of acceptability within […] dominant social and ideological framework[s]

Some of our most significant and deeply-entrenched human categories – like race and gender – are partly rooted in a constellation of physical elements, and partly in historically situated social construction.

They do not reside on a single gene, or even a network of genes, and yet they are both extremely ‘real’ and extremely important to our conceptions of self and others.

Robert Chapman

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When you are different it’s okay for you to not quite meet up with the rest of the world here and there, because most of the time, when it matters, everything syncs up.

When you are disabled you don’t have that luxury.

 

When you are disabled you have to prove, over and over again, that you are a real person […]

Julia Bascom

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In a world where autism exists, because we do taxonomize human difference and build systems of power around it, I am autistic.

Caroline Narby

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