State

Previous (Part C)

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And the truth is that I had been injured. I had been damaged. […] And I hadn’t wanted to be more autistic.

Most autistic people don’t want to hear [that certain microbial states are causally linked to behaviors characterized as autistic].

Many view it as a threat to the notion of neurodiversity as a phenomenon that has existed with unchanging frequency since the dawn of time […] Others fear it may fuel more abuse against autistic children. […] There is a very real basis for worrying that parents of [autistic] children might badly harm them in misguided attempts to ‘treat’ or ‘cure’ [them].

I imagine that if I had been born with the degree of autism I experience today, I wouldn’t view my newly limited state negatively, because I wouldn’t have experienced a loss.

Twilah Hiari

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It might seem like saying “we’ll do anything to help you” or “we tried everything” would make a kid feel like you really adore them, but this can actually make someone feel horrible. If you’ve always been disabled, disability doesn’t really feel like an emergency, nor does it really feel separable from who you are. So it can just feel, [if someone would be desperate enough to try everything], like you must be sort of a disaster.

Amanda Forest Vivian

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Doctors and researchers seem to think that curing cancer seems to be only a matter of time. My question is how we live in the meantime.

Out of context, Meredith Minister

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Care

Previous (Part C)

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helping someone shouldn’t be about ‘skill’, it should be about respecting them

Amanda Forest Vivian

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People shouldn’t have to give up power […] in seeking whatever they’ve defined for themselves as help. People should get to define what help means to them. People should not have to subject themselves to the assumption that they are wrong and that the helper is always right.

Megan Wildhood

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They described the ways in which they are ‘not allowed to love’ […]

While love is often commonly associated with ideas of desire and of wanting, it can be as much about giving to others as receiving. When regarded as passive recipients of care, they are not allowed to give, not allowed to love.

Esther Ignagni, Ann Fudge Schormans, Kirsty Liddiard, Katherine Runswick-Cole

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Hand-over-hand

Previous (Part B)

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Always, always remember that a student has a right to say no.

There are still times when we use physical prompting in our class, primarily when teaching a new motor skill.

Please remember that many – most – students do not need that physical support even with these skills. But some students struggle significantly with apraxia or other motor difficulties that benefit from some support.

But we do so cautiously.

We ask – “Can I help you?” […] give them the chance to give consent, or to say no.

Even if they cannot verbalize consent, I hold my hand out without grabbing them.

Do they put their hand on mine? Do they pull away? And they always should be allowed to pull away.

I think of it as if I was taking lessons to swing a golf club. The trainer may assist me by providing physical support to feel what a swing should be. But notice: the trainer is going to ask me if they can support me. And if I decide, mid-swing, this isn’t working for me and walk away – they are going to let me. The trainer is not going to chase me around the golf course, trying to grab my hands and arms. It sounds ridiculous, yet so often we do exactly that.

ms. a

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I interfere because, for me, hand-over-hand (I would like to draw a line at this point between “helping someone, with their consent, to move their hand/body through a motion so they get the feel for it,” and “hand-over-hand” as used in my therapy, which was always “grab the kid, forcibly restrain them, and then force their body to do what you want it to do, when they are actively not consenting or willing, and when they have no idea what is happening or why.” The first is something that I will do, always with consent, with kinesthetic learners. The second is something that was done to me, and it was called hand-over-hand) was uniformly traumatic.

It hurt, it took away my autonomy, it was frightening, it made me helpless. I screamed and cried during hand-over-hand, not because I was being willful or defiant as my parents and teachers and therapists thought, but because I was terrified and hurting.

And my parents, my teachers, my therapists – they were the ones causing the terror and pain. And they thought they were helping, but they weren’t.

I interfere because what I learned from hand-over-hand was not how to do the skills they were trying to teach properly (I am 27 and I still can’t write my name in cursive or sew a button or etc, obviously their occupational therapy to try to teach me cursive and other fine-motor skills failed abysmally), but rather that my pain didn’t matter, that my fear didn’t matter, that my body was not mine, and that might makes right.

ischemgeek

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Next (Part D)

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