Own world

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Learning to communicate is really hard, even for typically developing kids. […]

Disabled kids need *more* exposure to adults who want to listen to them, and *more* support in understanding their feelings – but they often get less of both. […]

All too often, kids with disabilities learn young that no one wants to listen to them. They often try their best to communicate, only to have their attempts interpreted as random meaningless noise or deviant misbehavior.

Ruti Regan

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Here’s the thing: I engage with [Tangles]. I don’t just talk around her or at her or even to her (although I do all those things at times)… I converse with her. [Rhythm and I] hold conversations in patterns of interactions in nonverbal ways […] We share attention and direct each other’s attention to things – feeling textures or watching patterns or listening to sounds together.

These things are interactions, and without them they have no reason to even TRY communicating with me.

Parents often speak of their autistic children as being “in their own world” – but all children are. The difference is that for NT kids there are standardized bridges into their worlds.

Restless Hands

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Next (Part B)

Whose

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Parental poop talk is perhaps the most affectively loaded of all poop talk, in large part because it relates smearing, eating, and rectal digging in graphically humanizing terms. Someone has to clean it up. Someone has to act, to intervene.

The humanization in autism poop talk, of course, is rarely about the human whose poop has been thrust into the spotlight.

And, especially in the case of parent blogs and other digitally born life writing, poop talk is often divulged without the full and informed consent of the autistic person being depicted.

This isn’t to deny the dangers or stresses associated with a loved one’s ingestion of harmful bacteria, or the distress involved in attending to the spread of literal shit, or the community and support a parent might garner from sharing intimate stories online.

My point, rather, is that these narratives are shittier than the shit they claim to represent. These are shitty narratives – rhetorical commonplaces that author autistic people as victim-captives of a faulty neurology, as rhetorically degraded and rhetorically suspect.

In these constructions, our shit holds more rhetorical power than we do.

Melanie Yergeau

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The idea behind “behavior is communication” is a powerful one

It is the idea that disabled people – even severely disabled people without the ability to reliably communicate through language – have perspectives, thoughts, and desires all their own and have the right to have those around them understand and respect it.

The sentiment is that a person never does anything for “no reason” […] The sentiment is also that there is almost no case where someone has “no way” of communicating distress, discomfort, etc

I want to be perfectly clear: I completely support this sentiment. I agree with it entirely.

But, and here is where my issues with the phrase begin, sometimes behavior is not communication.

What it means is that not everything I do – or any other person with a disability does – centers around you and trying to impart information to you and trying to get you in particular to do something. And this one of my problems with the phrase “behavior is communication”: it is very self-centered.

By re-framing someone’s actions as “trying to communicate something to me,” you are basically writing their entire existence to center on you – your actions, your thoughts, your feelings.

And the fact is, someone else’s life does not center on you. It centers on them […]

ischemgeek

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Next (Part B)

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

Atmosphere – Streaks (Part 3)

Previous

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When social communication fails, this does not mean the person we are trying to communicate with, trying to reach intersubjectivity with, trying to extend our own agency with… does not have a mind, does not have agency, is not human. What we think of as the ability to mentalise, to ‘read someone’s mind’ then, is perhaps the rather less impressive coincidence of happening to possess a similar mind, and what we think of as intimacy and a shared-humanity is nothing more than mirror-gazing.

Sophie Vivian

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If we start from the assumption that neurotypicals are ‘normal’, and Autistics are ‘disordered’, then poor connections between neurotypicals and Autistics inevitably get blamed on some ‘defect’ or ‘deficit’ in Autistics. If an Autistic can’t understand a neurotypical, it’s because Autistics have empathy deficits and impaired communication skills; if a neurotypical can’t understand an Autistic, it’s because Autistics have empathy deficits and poor communication skills. All the frictions and failures of connection between the two groups, and all the difficulties Autistics run into in neurotypical society, all get blamed on Autism.

Nick Walker

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But the way that things like this normally go? […] When nonautistic people can’t read autistic people, it’s either because nothing is there to read (we’re just assumed not to be giving off nonverbal cues because the cues we give off aren’t always the same as nonautistic people), or because autistic people have a global social skills deficit […] Even though it’s the exact same problem going in both directions: A difficulty reading people whose experience of the world fundamentally differs from your own, which may be a nearly universal social skills deficit in both autistic and nonautistic people.

Mel Baggs

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No one is born knowing the rules. Everyone has to learn the rules, and everyone has to learn some of the rules explicitly. […]

For neurotypical people, the need to learn social skills [e.g.: in business, in personal relationships, and in the area of disability] is treated as normal, expected, and honorable.

For autistic people, our need to learn social skills is treated as disgusting, defective, and in need of normalizing therapy.

Ruti Regan

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Stop romanticizing neurotypicality

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Learning to be good at social interactions isn’t a matter of Learning the Rules; it’s a matter of learning to develop your judgement.

Ruti Regan

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I don’t think social skills exist. Or, if I do, I think they exist like God exists – in everyone. They just may not always be apparent. […] Social skills are not contained in a person – they require the right other person.

With work, I think a lot of people can learn to develop their mindfulness and modulation skills so that they can have good social skills (i.e., capacity to connect) with more people – or, so that more people can have good social skills with them. It’s the same thing.

Some people – disabled or not – may not be able to learn how to do that, but they will still sometimes meet a person who is exactly like them, or who is very good at mindfulness and modulation, and they will have good social skills when they are with that person.

Other people will just not let other people in. […] Such people may have good social skills when interacting with people who aren’t different. But with people who are different, they [as well as the person who is different from them] will always have no social skills […]

Amanda Forest Vivian

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