tag:blogger.com,1999:blog-27990872407603373402024-03-13T19:21:23.156-07:00We Are Like Your ChildAlyssahttp://www.blogger.com/profile/06413844178426365789noreply@blogger.comBlogger62125tag:blogger.com,1999:blog-2799087240760337340.post-38738975855927099662019-07-30T21:31:00.001-07:002019-07-30T21:31:36.718-07:00Movement things are weird<div dir="ltr" id="docs-internal-guid-d53269c0-7fff-f374-0e64-59f6861f8ff8" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I’m pondering this on my fourth aikido-versary. But movement things are weird.</span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I did gymnastics for many years of my own volition. Indeed, I did gymnastics against the express wishes of my mother. It wasn’t easy. New skills were very rarely easy. But I learned them, a lot of them, and by the time I was forced to retire by illness (and retire from my miraculous comeback by injury), I was quite good.</span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">After my foot healed, I sought a way to fill the gymnastics shaped hole in my heart and life. I’m one of those people who needs a lot of physical activity and the kind of sensory input you only get from physical activity to be happy, healthy, or even vaguely able to deal. </span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">One friend was an enthusiastic evangelist for swing dancing, specifically how much I’d love it. Another was a quieter, less direct promoter of aikido as a possible fit.</span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Dojo membership trends expensive. Going to a dance is cheap. I tried swing dancing first.</span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">My friend was very much correct: I enjoyed swing dancing. It used movements I was comfortable with from gymnastics and made use of my inability to get dizzy, but it added something: working with a partner. In partner dancing, one person leads and the other follows. I had to learn how to do these things--first how to tell what partner was leading me to do, then eventually I learned to lead too, how to tell a partner what I wanted them to do. I had to learn to keep my body safe from uncontrolled partners, and also how not to anticipate a lead. And I had to learn how to be a controlled partner, how to set distance, how to respect distance, how to communicate clearly and observe partner’s ability to achieve different moves. And the planning. Leading is a lot.</span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">But I learned to do the things. I was never a stellar lead. I was a pretty good follow. Unfortunately swing dancers enjoy a lot of bigotry, so it wasn’t an environment I could really stay in (more about that on my personal blog, this isn’t the post for that). I learned how to move while a partner was already moving during my time as a dancer.</span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">After leaving dance and a period of time with no outlet (during which I was pretty awful to live with, sorry y’all) I tried aikido.</span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And I liked it.</span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">But this is where it gets interesting, at least to me:</span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<ol>
<li><span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The style I ended up in combines the pedantry of gymnastics and the listen to your partner of swing dance and smushes them together.</span></span></span></li>
<li><span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Had I tried aikido before dance it would have been </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">much</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> harder. You are listening to your partner to either fall or make them fall. That’s a lot more complex psychologically for me than just making a dance. Now, my teachers are absolutely amazing and I’m...uh...driven is a nice word for it, so I would have still learned. But several aspects would have been on a much steeper curve.</span></span></span></li>
<li><span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Ending up in the school and style that is best for me was absolutely luck.</span></span></span></li>
<li><span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">My amazing teachers in the style that was made for people who brain and body like me has given me the background to visit other schools that do things much differently and understand what I am looking at.</span></span></span></li>
</ol>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">So that last part is actually kind of a big deal. Allow me to explain.</span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">A couple of months after starting training, I visited my friend’s dojo. It’s their fault I started training, after all, I should spread out the frustration of attempting to teach me. Everyone was very kind, but I struggled mightily. The format was different than I was used to, and I was accustomed to being given exact angles for things and talked through the first couple attempts of a technique. This was not that. It was much more “figure it out with your partner” and “move your feet as much as you need to”. I cannot stress enough that the students and teachers were very kind and patient, but I was a bit of a mess. I didn’t have the base layer to succeed in that kind of environment. It wasn’t particularly accessible, no matter how kind and patient and welcoming everyone was.</span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">A year or 2 after that I visited a dojo that is a style closely related to mine. That was much easier. They still did some things differently, but the format of class was familiar and they gave me exact angles. Again, everyone was very kind and welcoming (aikido people tend to be in my experience) but it took a lot less patience on their part. It was a new place and new people, thus scary, but it was cognitively accessible. I had the foundations.</span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">But the background built. A few months back I took a class at another dojo similar to my friend’s. The format was still very different than I am used to. It was still people I did not know. They still weren’t giving me the instructions I am accustomed to. But I had enough background built in, grown through trying things communicated in a K friendly way, to see what they were asking me to do. It was still hard. I will never move in a go with the flow, just turn as far as you need to, kind of way. But I didn’t embarrass myself and my teachers and everyone who has ever tried to teach me to do anything with my body. It was still less accessible, but with the years of training and learning to use my body, I could move in that environment with a manageable amount of difficulty. </span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span></span>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">If you had told me after the class I took with my friend that in a few years I’d be able to learn something (as opposed to ‘not hurt myself or someone else’) in a class with that format I wouldn’t have believed you. Jumping falls? Seemed attainable, because they’re related to something I already could do. Footwork without names? Not so much. Footwork without names that is open ended because you have to feel what someone else is doing? Absolutely not. But I could. Eventually.</span></span></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: large;"><span style="font-family: inherit;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Kinesthetic knowledge is just really interesting. And people don’t think about building a base for it the way they think about learning basic math concepts before advanced math concepts, or the alphabet before learning to read, or thousands of other academic examples. Hundreds of people every day access aikido environments that I struggled in without a decade of gymnastics, several years of dance, and 3 years of more step by step aikido training first. But some of us do need to learn the components step by step first, and that’s ok. I’m never going to want to transition to a place where that’s not the norm, even if I can visit. It’s not as easefully accessible to me. But it did help me learn to use my body in more freeform environments, and that’s super cool to me. Because kinesthetic knowledge is underappreciated yet super awesome.</span></span></span></div>
Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com0tag:blogger.com,1999:blog-2799087240760337340.post-64606728615336751142018-02-28T13:49:00.001-08:002018-02-28T13:49:47.115-08:00Call for guest post submissions!We Are Like Your Child is seeking new guest post submissions for our main blog page! While we have a team of regular contributors, we are always looking to share guest work and new perspectives!<br /><br />WALYC is a group blog dedicated to countering the misunderstanding that autism/disability acceptance means pretending that our struggles and challenges aren’t real or significant. This is where we talk about what our real challenges are, and how we strategize, problem solve, adapt, and work with them to build satisfying, sustainable lives as disabled people. Our values are that it’s okay to be disabled, it’s okay to be disabled and like yourself, and that there are many different and valid ways to be “successful” as an autistic and disabled person that don’t involve “overcoming” autism, recovery, or indistinguishability.<br /><br />Some possible topics include, but are by no means limited to: Executive functioning, sleep issues, movement/motor planning challenges, sensory and auditory processing issues, navigating relationships, sexuality, gender, parenthood, higher education, or employment as an autistic person, issues with seeking healthcare; code-switching, scripting, and other ways of navigating language, AAC, meltdown prevention/recovery, strategies for academic success and seeking formal or informal accommodations, housing issues, financial issues, autism and pregnancy/childbirth, etc.<br /><br />-Author must be autistic or disabled, and writing about your own experiences<br /><br />-We are especially interested in sharing the work of autistic people of color, non-speaking people and AAC users<br /><br />-Guest posts are uncompensated at this time; WALYC is an all-volunteer collaboration.<br />
<br />
-Submissions should be e-mailed as a Word attachment to wearelikeyourchild@gmail.com, or to the inbox of our Facebook page, with a short note introducing yourself. We look forward to hearing from you! chavisoryhttp://www.blogger.com/profile/06005966614838356668noreply@blogger.com0tag:blogger.com,1999:blog-2799087240760337340.post-30171932145703994812017-02-15T21:56:00.000-08:002017-02-16T08:12:06.278-08:00Sometimes it's not me. It's you.<style>
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<div class="MsoNormal">
<b>[Content note: This is ranty, angrier than what's usually published here, and contains profanity.] </b></div>
<div class="MsoNormal">
This isn’t what [SLAM] I wanted to be writing today.</div>
<div class="MsoNormal">
It’s not even [SLAM] halfway through my day, and I am <i>completely</i> fucking
<span style="mso-bidi-font-style: normal;">fed up</span> with non-autistic people’s
utter care[SLAM]lessness about the world around them.</div>
<div class="MsoNormal">
I’m [SLAM] sitting in a coffee shop that I normally like a
lot.<span style="mso-spacerun: yes;"> </span>[SLAM]</div>
<div class="MsoNormal">
I nearly always have to leave my apartment and go out to a café
in order to really get anything done—there’s [SLAM] too much available [SLAM]
distraction in my apartment between the internet and all my books and art
supplies and a hundred things that need doing around the house at home.<span style="mso-spacerun: yes;"> </span>So I go out.</div>
<div class="MsoNormal">
It’s [SLAM] Sunday, which makes it harder.<span style="mso-spacerun: yes;"> </span>Places will be more crowded. Some don't allow computers on weekends.<span style="mso-spacerun: yes;"> </span>My usual favorites won’t [SLAM] have
seats at all, and weekend crowds (containing more families and small children) are [SLAM] louder and [SLAM] rowdier than
weekday ones (who are mostly students and freelance writers).<span style="mso-spacerun: yes;"> </span>It’s also spitting freezing rain
outside, so I don’t want [SLAM] to walk very far, and also I need to eat before work,
so I need to be able to get back in time to do that.</div>
<div class="MsoNormal">
This place is right off a subway stop and almost always has
seats even on weekends even though it’s on the smaller side.</div>
<div class="MsoNormal">
[SLAM]</div>
<div class="MsoNormal">
Something is wrong with the pneumatic [SLAM] thingamajig
that controls the front door’s opening and closing, though, and if someone
opens it and then just lets it go at the outside of its arc instead of easing it closed, it slams with a
painful metallic [SLAM].</div>
<div class="MsoNormal">
There’s a sign on both [SLAM] sides of the door asking
patrons to be careful with it, but about 75% of [SLAM] them don’t read it.<span style="mso-spacerun: yes;"> </span>Or maybe they do but they don’t [SLAM]
think it applies to them personally.<span style="mso-spacerun: yes;">
</span>Or they [SLAM] aren’t taking the moment it would require to integrate
the [SLAM] verbal information contained in the sign with the physical [SLAM]
information conveyed by the fact that [SLAM] the resistance just feels wrong
when you pull the [SLAM] door open in order to conclude that they need to be
careful about how [SLAM] they close the door...to glean the kind of physical information from their environment that I <i>have</i> to be doing <i>constantly</i>.<span style="mso-spacerun: yes;"> </span>[SLAM]</div>
<div class="MsoNormal">
I don’t know.</div>
<div class="MsoNormal">
[SLAM]</div>
<div class="MsoNormal">
I start trying [SLAM] to warn people who I see enter and let
go of the door, but most of them still don’t understand until it’s too late if
they hear and understand me at all. </div>
<div class="MsoNormal">
The barista starts trying to warn people, too, with [SLAM] only
a slightly improved rate of success.</div>
<div class="MsoNormal">
Finally he sends another employee to try to jerry-rig a
temporary fix.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
[SLAM]</div>
<div class="MsoNormal">
It doesn’t [SLAM] work.</div>
<div class="MsoNormal">
[SLAM]</div>
<div class="MsoNormal">
They try again about 15 minutes later.</div>
<div class="MsoNormal">
[SLAM]</div>
<div class="MsoNormal">
No luck. </div>
<div class="MsoNormal">
Every [SLAM] time it seems like people are getting the hang
of it and I start to relax, [SLAM].</div>
<div class="MsoNormal">
Within a [SLAM] few minutes, my head hurts, my ears hurt, my
brain feels like it’s bleeding, my eyes hurt, my hands hurt, and every nerve in
my body stands on end every [SLAM] time somebody reaches for the door handle.</div>
<div class="MsoNormal">
I’m reading, or trying [SLAM] to, a book that I’m really
enjoying, by an author who’s a particular favorite of mine, and I resent [SLAM]
<i style="mso-bidi-font-style: normal;">bottomlessly</i> that my experience of
it, my ability to sink [SLAM] myself [SLAM] into [SLAM] the rhythms of [SLAM]
his words, is being fractured like this.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>[SLAM]</div>
<div class="MsoNormal">
Ironically, it’s a book [SLAM] about disability and cure
culture.</div>
<div class="MsoNormal">
A woman [SLAM] waiting for her drink knocks a ceramic mug
off of its counter display and it falls to the tile floor and {CRASH} shatters.</div>
<div class="MsoNormal">
Yeah, I could “just go somewhere [SLAM] else,” requiring, at
this point, a long walk in the freezing rain, for no guarantee there’s even a
seat [SLAM] free in another café in all of upper Manhattan or that there [SLAM]
won’t just [SLAM] be a different or worse issue wherever I wind up, or that I don’t
just end up going [SLAM] home, whereupon I have wasted my <i style="mso-bidi-font-style: normal;">whole</i> entire [SLAM] fucking afternoon in <i style="mso-bidi-font-style: normal;">transitioning</i>.</div>
<div class="MsoNormal">
<span style="mso-tab-count: 1;"> </span>-Putting
on/taking off boots, scarf, gloves, coat, hat, backpack, headphones</div>
<div class="MsoNormal">
<span style="mso-tab-count: 1;"> </span>-Make
sure I have keys and Metrocard and chapstick</div>
<div class="MsoNormal">
<span style="mso-tab-count: 1;"> </span>-Leaving/arriving/getting
on the train/getting off the train/coming in/negotiating
enough room to sit/sitting down/getting<span style="mso-tab-count: 1;"> </span>settled/unpacking/packing
up to leave</div>
<div class="MsoNormal">
<span style="mso-tab-count: 1;"> </span>-From
misery to misery, from getting nothing done to getting nothing done to getting
my focus shattered again and again and again until even though I’ve had
seven whole hours between waking up today and having to be at work, I<span style="mso-tab-count: 1;"> </span>have
nothing to show for it except for a headache that neither Advil nor<span style="mso-tab-count: 1;"> </span>alcohol
will relieve and wet jeans, cold feet, a short temper, exhaustion, and <span style="mso-tab-count: 1;"> </span>inability
to control my tone of voice which will now only be held against me,<span style="mso-tab-count: 1;"> </span>because
<i style="mso-bidi-font-style: normal;">I still have to go to work</i> after
this.</div>
<div class="MsoNormal">
[SLAM]</div>
<div class="MsoNormal">
Yes, I have ear[SLAM]plugs.<span style="mso-spacerun: yes;"> </span>Firing range grade earplugs, as it happens.<span style="mso-spacerun: yes;"> </span>They muffle the sound of [SLAM] the
continuous door-slamming somewhat, but not the physical sensation [SLAM] of it,
or the randomness, which are equally [SLAM] debilitating factors.</div>
<div class="MsoNormal">
My day is going to [SLAM] be ruined even though I have done
nothing wrong and made no mistakes here. </div>
<div class="MsoNormal">
[SLAM]</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We use this blog to talk about our problem-solving, our
resilience, our creativity, our self-accommodation and how those things make us
successful by our own standards, but, like, sometimes there’s just no way
around this:</div>
<div class="MsoNormal">
I need <i style="mso-bidi-font-style: normal;">you</i> to be
more careful.</div>
<div class="MsoNormal">
I need <i style="mso-bidi-font-style: normal;">you</i> to pay
more attention to the world around you and how it works.</div>
<div class="MsoNormal">
I need <i style="mso-bidi-font-style: normal;">you</i> to
watch your volume and where you are in space.</div>
<div class="MsoNormal">
I need <i style="mso-bidi-font-style: normal;">you</i> to stop
fucking with knobs on sound systems you don’t understand.</div>
<div class="MsoNormal">
I need <i>you</i> to stop slamming shit and breaking shit and
dropping shit and dragging furniture and not watching where you’re going.</div>
<div class="MsoNormal">
This cannot, <i style="mso-bidi-font-style: normal;">cannot</i>,
always be on me alone.<span style="mso-spacerun: yes;"> </span>That I can
do everything right, take <i style="mso-bidi-font-style: normal;">every</i>
precaution to protect myself, short of just never leaving my room (and <i style="mso-bidi-font-style: normal;">then</i> I would doubtless be told that I
was “letting my diagnosis limit me” or “using it as an excuse”), and still wind
up hurt, sick, melting down, my ability to function for the rest of the day or
the week ruined, not because of <i style="mso-bidi-font-style: normal;">my</i> [SLAM]
autism, but because <i style="mso-bidi-font-style: normal;">you</i> don’t [SLAM] have
any stakes in being more fucking careful about how you go stomping through the
world.<span style="mso-spacerun: yes;"> </span>It cannot just be my fault
for existing and, like, daring to think I might be able to do something <i style="mso-bidi-font-style: normal;">wild</i> like go out for coffee before work
without destroying myself.</div>
<div class="MsoNormal">
I say things like "of course we want better treatments for things like anxiety," but my anxiety or rigidity are not the problems here; they are instilled and necessitated by my need to protect myself from <i>your</i> chaos and noisemaking and unreliability. </div>
<div class="MsoNormal">
This is not just my inability to live [SLAM] in the world or
deal with other people; this is not just that it’s hard to live in a city
(although it is).<span style="mso-spacerun: yes;"> </span>This is a
function of how <i style="mso-bidi-font-style: normal;">you</i> treat the world
around [SLAM] you.<span style="mso-spacerun: yes;"> </span>[SLAM]</div>
<div class="MsoNormal">
And when I startle or yelp in pain, other people look at me
like <i style="mso-bidi-font-style: normal;">I’m</i> weird or frightening or
disturbing, if they don’t outright laugh at me.<span style="mso-spacerun: yes;"> </span>Somehow <i style="mso-bidi-font-style: normal;">I’m</i> the
one who’s defective when <i style="mso-bidi-font-style: normal;">your</i>
carelessness [SLAM] gets me hurt.</div>
<div class="MsoNormal">
I have to spend most of my days doing complex,
multi-variable calculations like this about how to get through a day; this
takes up an <i style="mso-bidi-font-style: normal;">unholy</i> proportion of the
mental bandwidth that I spend planning my life, and it is never, ever enough,
and you know what?</div>
<div class="MsoNormal">
At some [SLAM] point, it’s not me, it’s you.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-eP6Gr5RlwPA/WKXPTxgSqJI/AAAAAAAAAD4/EdX9L3EM5X4xZvokI8nEY0VO3ppJ7tiAACLcB/s1600/uncle%2Bsam.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="179" src="https://4.bp.blogspot.com/-eP6Gr5RlwPA/WKXPTxgSqJI/AAAAAAAAAD4/EdX9L3EM5X4xZvokI8nEY0VO3ppJ7tiAACLcB/s320/uncle%2Bsam.jpeg" width="320" /></a></div>
</div>
Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-2799087240760337340.post-11339170317873284482016-04-19T00:00:00.000-07:002016-06-14T12:29:41.077-07:00I am Inconvenient<div dir="ltr" style="text-align: left;" trbidi="on">
<a href="http://yesthattoo.blogspot.com/2013/01/inconvenient.html" target="_blank">Reprinted from Yes, That Too</a><br />
<br />
Gifted students are inconvenient. They get bored, sometimes hyper because of their boredom. They want to know <i>why</i> things
work, not just what you do. Or they are gifted in one specific area
that isn't covered much, and they drag that area into <i>everything</i>.<br />
<br />
Disabled students are inconvenient.<br />
<br />
How varies by disability.<br />
<br />
The student who uses a wheelchair takes up more space in the hall.<br />
<br />
The student who is blind needs braille textbooks, a screen reader, maybe both.<br />
<br />
Because
these disabilities are visible, are obvious, something is done (not
necessarily something good- exclusion is often the thing.)<br />
<br />
They
get their wheelchair, or they get their braille, or they get sent to a
special school where everyone is blind and everyone uses braille and
it's not even a special accommodation.<br />
<br />
You can't pretend it doesn't exist simply because it is <i>inconvenient</i> to deal with.<br />
<br />
You decide to do nothing about it, but you can't pretend it's not there.<br />
<br />
Autistic? Depressed? OCD?<br />
<br />
They don't want to deal with that.<br />
<br />
So it just doesn't exist.<br />
<br />
We don't have those problems here.<br />
<br />
They do, of course, but they pretend it's not there.<br />
<br />
With no obvious difference, nothing you can see that says there is something different, they can pretend.<br />
<br />
They can pretend that we are making things up.<br />
<br />
They can pretend that we are just being difficult.<br />
<br />
They can pretend that we are simply lazy.<br />
<br />
They can pretend that our <i>inconvenient behaviors</i> are there for any reason at all.<br />
<br />
So it is for a reason which makes it purely our fault.<br />
<br />
So it is for a reason that does not require accommodation or education, but shame and punishment.<br />
<br />
It exists, but they can pretend it doesn't.<br />
<br />
And
then we pretend it doesn't exist either, not wanting to face what they
dish out when we try to make them see what is in front of their eyes.<br />
<br />
Disability becomes an <i>inconvenient</i> part of ourselves that we would simply rather ignore, and then they have won. I refuse.<br />
<br />
I will be <i>inconvenient</i>, and they will just have to deal with it.</div>
Alyssahttp://www.blogger.com/profile/06413844178426365789noreply@blogger.com0tag:blogger.com,1999:blog-2799087240760337340.post-6477360309304291922016-03-24T12:02:00.003-07:002016-03-24T12:02:22.334-07:00Isn't it time to leave your comfort zone?<div dir="ltr" style="text-align: left;" trbidi="on">
Reprinted<a href="http://yesthattoo.blogspot.com/2016/03/isnt-it-time-to-leave-your-comfort-zone.html" target="_blank"> from Yes, That To</a>o because one of the other moderators totally said I should.<br />
<br />
I get asked this... sometimes. Most recently, I got asked this when I said I planned to stay in the same housing I'd had for undergrad through my doctoral program, since I'll be staying at the same university for it.<br />
<div>
<br /></div>
<div>
And yes, it is time to leave my comfort zone! I'm moving from mathematics, which has been a bit of a home to me since ever, and mechanical engineering, which I studied as an undergraduate, to neuroscience and computer engineering. That's a departure from my comfort zone. I'm walking a bit into the lion's den to be on a project designing technology <i>for</i> autistic people, likely working with parents and autism professionals in addition to my major professors. (I'm pretty sure I'm going to need to talk to parents and professionals, actually, since, as per usual, folks are thinking about <i>children</i> and since I'm apparently the autism expert on the team in addition to the technology and neuroscience know-how I'll be picking up during my studies.) That's an even bigger departure from my comfort zone.</div>
<div>
<br /></div>
<div>
My living arrangements are <i>not</i> the way it's time to leave my comfort zone. There's a few reasons for that.</div>
<div>
<br /></div>
<div>
Reason the first: Too many things changing at once is really hard for me! If I'd gotten into, say, MIT or Berkeley or some of the other schools I applied to, I'd have <i>had</i> to change my living arrangements in order to attend those schools. Since it would have been necessary, I'd have done it, but since it's <i>not</i> necessary, change for the sake of change and leaving my comfort zone is not going to be happening. I stick to changes that have good reasons, because change is hard.</div>
<div>
<br /></div>
<div>
Reason the second: My needs in terms of daily living might not be particularly complicated, but if they are not being met, <i>bad things happen</i>. I need easy access to food without needing to think much about how I'm getting said food or what I'm eating. That means I need a meal plan. My current housing comes with a meal plan, which is good. I <i>also</i> need to be able to avoid loud, bright places full of people. The main dining halls are definitely loud, bright places full of people, and we're not allowed to take our food out of the dining hall. Like many others, I know how to smuggle food out of the dining hall anyways, but when I am overloaded enough that I need to take my food out, the extra steps involved in doing so are going to be a problem. That means I should really be on a meal plan where I can take my food out of the dining hall. My current housing's meal plan allows this! So my current housing meets those needs, and finding other ways to meet those needs is effort that I don't need to make right now.</div>
<div>
<br /></div>
<div>
Reason the third: I don't drive. I passed my road test about two weeks ago now, so I legally <i>can </i>drive, but over in reality-land I <i>don't</i> drive. Driving tends to knock out my ability to speak, often for an hour or two after I'm done driving. (Even though I have no issues with going to class, work, or practice while non-speaking, I won't <i>knowingly do things that make me lose speech</i> for class, work, or practice.) Given that public transportation around the university is extant but not great, that means I should be living on campus. </div>
<div>
<br /></div>
<div>
In combination, these reasons mean I should stay put. It's actually tricky to find housing on campus as a graduate student, and the on campus options <i>for</i> graduate students don't come with meal plans <i>at all</i>. It's possible to buy individual meals at the main dining hall (or at my current housing, though we don't get to take food out when we're buying individual meals as non-residents,) but having that as "one more option" as opposed to "the default I don't need to think about" won't actually increase the probability of my eating meals. </div>
<div>
<br /></div>
<div>
So yes, I should leave my comfort zone sometimes. I should also think carefully and critically about when, where, and how I leave my comfort zone. </div>
</div>
Alyssahttp://www.blogger.com/profile/06413844178426365789noreply@blogger.com1tag:blogger.com,1999:blog-2799087240760337340.post-41599137650720255092015-09-20T16:18:00.002-07:002015-09-20T16:18:45.822-07:00Movement teachers: I am your dream student. I am your nightmare student. (Crosspost)<blockquote class="tr_bq">
<i>I highly doubt anyone who has or will endeavor to teach me movement things will ever read this, but on the off chance they do. It may also help someone else who is trying to teach sports or dance or other similar things to someone who does movement like I do. </i></blockquote>
Movement teachers: on the surface I am your dream student.<br />
<br />
I'll walk in. You'll show me basics. Or have someone show me basics. They will do them at the same time I do, so I can exactly follow. I'm echopraxic, you see. If I have someone to exactly follow? I can do that. I can make my body do exactly what they do--or as close to exactly as different builds allow.<br />
<br />
You will probably think that I am talented. I probably am not. I am echopraxic and I have a big library of movement to draw from. So as long as I have someone to follow I can look comfortable with the things.<br />
<br />
You may be tempted to skip steps. You may forget there's things I haven't learned. I know how to do a lot of things with my body because of years of dance, gymnastics, & team sports. This is why I can give you the impression I have an aptitude: because if it is on the ground or in the air I have probably done something similar. I've done gymnastics. I've spun a flag & marched at the same time. I've done some ridiculous number of styles of dance. I've played basketball on feet and on wheels. Whatever you're showing me, I'm sure to have a bit of muscle memory that relates enough that I can copy you or more advanced people.<br />
<br />
Here's where I'm your nightmare:<br />
<br />
I can only copy for a substantial amount of time. Yes, I can do exactly what someone else is doing while they do it. But until I've over learned the movement, I will be inconsistent. Things will be in the wrong place. Things will be in bafflingly wrong places the first 200 times I try to do the thing without mimicking. The next 200 times I have to talk myself through it. I may say one thing and do another. I will find new & exciting ways to do the wrong thing.<br />
<br />
Did you skip steps? Or forget that I hadn't learned a thing? This nightmare trait you can blame other movement instructors for, as it isn't a natural part of my makeup : I will still try to copy. I will still try to figure it out without asking. I may not know how to do the thing, but if you're asking me to I am going to think I'm supposed to. I know I haven't been taught it, but asking has rarely gone well. Clearly someone who knows what they're talking about thinks I already know it. Asking gets all sorts of belittling when you're asking about something 'easy' and can do things that are 'hard'. I do not need that in my life. It's easier to watch, copy, approximate. It may be more physically dangerous but I am more confident in my ability to avoid injury with my body than I am with instructors' ability to not be a jerk if I can't do something they forgot to teach me.<br />
<br />
It takes a very long time for me to get things consistently in my motor memory. I'll do it extremely well Monday. I'll do it extremely well Wednesday. Friday it'll be all wrong. My body forgets which way to go, or which foot I do things with, or what order things happen in. It doesn't just forget new things. It forgets old things. A couple years ago my body forgot how to do a backhandspring--something I've been doing well over half my life.<br />
<br />
And I am your surreal dream:<br />
<br />
I'll learn to approximate skills. They'll be okay if I talk myself through them. Or maybe I can't do the skills at all. And then for some reason I won't even attempt them for months. Suddenly I get the ball at that spot I can't shoot from, or that dance move will become relevant. Without hesitating, thinking, anything my body will do it. It may even do it flawlessly. And you'll be confused. You didn't think I was holding out on you but maybe I was.<br />
<br />
I was not holding out on you. My motor planning really works that way. Sometimes I have to hack it by putting myself in a position where doing something automatically is the easy option. Thinking about it hasn't worked, but letting natural movement suddenly lets my body do what it knows.<br />
<br />
I may lose skills or movement patterns that are easy, but not the more complicated ones. There may be rhyme and reason to this, but I haven't been able to find it & neither has anyone else. I can tell you why specific combinations of movements or individual skills are hard but not why I lose things.<br />
<br />
We're back to why, if you are willing to work with me, I'm your dream student:<br />
<br />
I'm motivated. If I stick around long enough to master something that confused me, you are likely stuck with me. I don't stop doing things because they're hard; I was the kid who couldn't write my name. Who literally tripped on my own feet. Who couldn't organize movement well enough to get a book out of a desk without spilling its entire contents. Who couldn't kick the ball in kickball or serve in volleyball. Who only made the basketball team because it's no cut. Who got dropped from basic level tumbling classes until I spent a couple years with a book in the park painstakingly teaching myself cartwheels & walkovers, because no one else thought I could learn it. Who could not eat my food without also wearing it.<br />
<br />
None of that is exaggeration. I was born dyspraxic. I no longer function as dyspraxic. I <i>rewired my brain on my own</i>. You have not met motivation & stubbornness until you have met me. In my life as a movement teacher, I say "hard work beats talent because hard work shows up" and I will always show up. I may get frustrated, but I want to work through it. I've made "beating my coordination challenges into submission" a way of life, & I will continue showing up unless you make me unwelcome. In which case I will take my motivation, stubbornness, always trying to be better somewhere else. But "hard work beats talent because hard work shows up" applies on all sides here, & take it from me, beating talent with hard work starts as a nightmare but it turns into a pretty sweet dream.<br />
<br />
<blockquote class="tr_bq">
<i>This is cross posted from <a href="http://timetolisten.blogspot.com/">Radical Neurodivergence Speaking</a></i></blockquote>
Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com7tag:blogger.com,1999:blog-2799087240760337340.post-40675950889149869162015-07-23T11:09:00.000-07:002015-07-23T11:09:07.369-07:00Reclaiming the Dignity Lost In A Diagnosisby <a href="http://un-boxedbrain.blogspot.com.au/" target="_blank">Cas Faulds</a><br />
<br />
As an autistic person, I have multiple facets to my identity – just like everyone does. One of those facets is that I am also a parent. My son is autistic, and I know what it is like to sit with professionals and be told how limited your child is. I know what it is like to receive a diagnostic report that includes horribly negative words about deficits, and I know what it is like to have to explain that to other people in your child’s life including teachers and family members.<br />
<br />
So, based on that, I would like to offer some advice to parents who have gone through this process that I wish someone had given me when I was there.<br />
<br />
Take the diagnostic report, full of the language of the pathology paradigm, and reword it to reflect the neurodiversity paradigm. <br />
<br />
<b>How?</b><br />
<br />
The best way that I can explain this is to give you an example:<br />
<br />
From a report: <br />
<br />
<blockquote class="tr_bq">
X appears to have impairments in communication and social interactions. In addition, he was reported to have several restricted and repetitive behaviors. Specifically, he was noted to have difficulties engaging in a social conversation, high pitched vocal tone, impairments in use of eye contact, difficulties socializing and interacting with other children, and limited emotional reciprocity. He also collects rocks, has an inflexible adherence to routines, displays heightened sensitivities to light and loud noises, and finds it hard to cope with changes to his daily routine. </blockquote>
<br />
No, that doesn’t say anything positive at all!<br />
<br />
So, how can I reword this to say something positive?<br />
<br />
<blockquote class="tr_bq">
X has differences in his communication style and social interactions. He prefers to engage in behaviors that are comfortable for him. Specifically, these include conversations that remain on topic and relevant to him. He prefers not to make eye contact because it is uncomfortable for him, and he prefers interacting with children who are older or younger than him, rather than only interacting with his age mates who can be less predictable. He loves collecting rocks because he is interested in the different shapes and substances that rocks are composed of. X prefers predictability in his daily routine, and enjoys being in sensory friendly environments.</blockquote>
<br />
Why?<br />
<br />
Why should you do this? Why go to the effort of rewriting a professional report? Because you are going to have to introduce your child to teachers and therapists and you’re going to have to do that more than once. When you do, you want to do that from a place of strength rather than a place of weakness. You want to highlight your child’s unique potential rather than place limitations on them, and you don’t want to have to confront all those negative words every time you do this. This way, you have the words you need to ensure that your child receives the support that he/she needs without trading in his/her dignity.<br />
<br />
As an autistic person, I wish that my parents had accepted me for being me, rather than trying so hard to make me into their version of me. Their efforts to make me into their version of me were unsuccessful but it did result in me feeling as though there were things wrong with me. For my son, I want him to be able to be him, without having other people give him the message that there is something wrong with him. This way of introducing him to people who will work with him sets the tone from the beginning that you value I value my son for exactly who he is and I will not allow them to try to change him.Unknownnoreply@blogger.com25tag:blogger.com,1999:blog-2799087240760337340.post-72315379638199588132015-06-01T12:14:00.001-07:002015-06-01T12:23:37.695-07:00On Verbal SpeechBy <a href="http://kpaginatedthoughts.blogspot.com/" target="_blank">Kit Mead</a><br />
<br />
<br />
I worry about being taken seriously if I write about certain things non-anonymously. Today I decided to write about them. Verbal speech tends to be a pre-requisite of society, and what would people say outside the disabled community if they read this and know that speech isn't all that great for me?<br />
<br />
Anyone who has seen me talk out loud knows speech is not, perhaps, my first language. My first language was writing cat stories about a fictionalized version of my first kitten, Tabby, lost in a world of written words. I was in third grade and this is what I liked to do: Write and write and write. <br />
<br />
My speech works best when I can read off my laptop, or if I've typed it out in advance. It's why my conversations with friends about activism tend to be with my laptop open. I'm telling them about the posts I already wrote and quoting, and also paraphrasing with words that make me sound slightly angry. I don't have the access to prettier out-loud language. <br />
<br />
Okay, sometimes I actually am angry, but usually not as angry as I sound out loud. <br />
<br />
Someone once told me I was more expressive than this other autistic person they knew. I wish they knew that my real words come down on paper or Word documents. They spill out faster and with more clarity there than I could hope to achieve out loud unless I have prepared over and over again in advance. <br />
<br />
And I don't want to prepare over and over in advance unless I'm actually giving a presentation. Because I need people to accept me with my slightly stop-and-go conversations with words hacked into pieces and sometimes losing their meaning. I need people to know that I don't always mean what I say because I can't always have words out loud.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-2799087240760337340.post-88709969013611377902015-03-17T10:19:00.000-07:002015-03-17T22:17:50.490-07:00On Being An Unexpected Kinesthetic Learner<div class="MsoNormal">
I start to rediscover that I’m a kinesthetic learner, and
it’s odd.<span style="mso-spacerun: yes;"> </span>It’s so contrary to
everything I’ve ever been told about myself, and it feels <i style="mso-bidi-font-style: normal;">so</i> good.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When we started learning about multiple intelligences
theories, kids who were described as kinesthetic—as learning most naturally
through movement or action—were dancers, naturally talented athletes, the class
clowns, physical actors, the kids who could never sit still.<span style="mso-spacerun: yes;"> </span>Kids who were always in trouble for not
being able to stay in their seats, likely to pick up a diagnosis of ADHD
somewhere along the way.<span style="mso-spacerun: yes;">
</span>High-energy, daring, uninhibited, and loud.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And I was very quiet, very still, very inhibited.<span style="mso-spacerun: yes;"> </span>I was always in trouble in PE for not
knowing what in the world I was doing or being totally unable to keep up with
the rest of the class.<span style="mso-spacerun: yes;"> </span>I was badly
coordinated and nowhere near fast enough for any team sport.<span style="mso-spacerun: yes;"> </span>I never placed in any event in Field
Day.<span style="mso-spacerun: yes;"> </span>I failed out of gymnastics.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Kinesthetic learners were generally thought not to do well
in school because of their need for activity and movement.<span style="mso-spacerun: yes;"> </span>I sat quietly in class and got all A’s.
I had a photographic memory.<span style="mso-spacerun: yes;">
</span>Teachers were always scolding, “You can’t expect to only study the night
before and do well on this test!”<span style="mso-spacerun: yes;">
</span>But I could.<span style="mso-spacerun: yes;"> </span>I got into the
gifted class and kept my hands rolled up in my sleeves. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But all the while, I just ached to be taught how to do
things.<span style="mso-spacerun: yes;"> </span>I clawed my skin off from
having not enough to do with my hands.<span style="mso-spacerun: yes;">
</span>And I could feel the terrifying void that existed between the fact that
I knew about a lot of things, but I didn’t know how to do almost anything.<span style="mso-spacerun: yes;"> </span>The scrutiny of other people was
literally paralyzing.<span style="mso-spacerun: yes;"> </span>I resented
more than anything as a kid when we’d be told that we were going to learn how
to do a really cool thing, but then what we actually got was obviously a fake,
dumbed-down version, of making gingerbread houses or uncovering fossils.<span style="mso-spacerun: yes;"> </span>People told me a lot about how I was
never going to make it in the real world, but nobody seemed to want to teach me
anything real.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But writing is movement, too, and I was better at that than
most people.<span style="mso-spacerun: yes;"> </span>So is beading.<span style="mso-spacerun: yes;"> </span>So is loading electrophoresis gels, and my biology classmates marveled at my dexterity at that.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As a child, making tuna salad or cutting up fruit for
myself, people try to take knives away from me, sure that I’m going to cut
myself, but I never do.<span style="mso-spacerun: yes;"> </span>(<i style="mso-bidi-font-style: normal;">They</i> do.)<span style="mso-spacerun: yes;"> </span>I never fall on steep hills or icy sidewalks when adults are
sure I will.<span style="mso-spacerun: yes;"> </span>I never sprain an
ankle toe-walking.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I could feel that if I could know a thing in my body, in my
joints, in my bones, in how it behaved in my hands…anything I could make a
physical habit out of, was a thing I’d always be able to do, that I could never
really lose or forget, the way I’ve forgotten calculus almost entirely from
disuse, and chemistry, and how I’ve lost my photographic memory to other
cognitive demands.<span style="mso-spacerun: yes;"> </span>(That one makes
me mad.)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I start stealing opportunities to do that.<span style="mso-spacerun: yes;"> </span>Time without a well-meaning adult
hovering over my shoulder was time to steal fire.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We have typing class in 9<sup>th</sup> grade, and once I
start learning, my fingers twitch constantly, ghost-typing out any sequences
of overheard words against my thigh.<span style="mso-spacerun: yes;">
</span>I had no idea what was wrong with me, why I couldn’t stop.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was in high school, and may’ve been listening to a lecture
from my grandfather about the difference between people who work with their
minds and people who work with their hands, and thought silently, “If I don’t
work with my hands, I’ll go insane.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My acting teacher tells me to get my hands out of my
sleeves.<span style="mso-spacerun: yes;"> </span>I turn out to be good at
acting.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At a new job, I initially panic when I learn that my nightly
duties will involve moving pianos by myself.<span style="mso-spacerun: yes;"> </span>But I quickly get a sense of the individual moods and
idiosyncracies of the Hamburg, the New York Steinway, the Fazioli—their resistance
and center of gravity.<span style="mso-spacerun: yes;"> </span>They almost
have individual wills, like baby elephants.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I get told at a meet-up that I have very loud hands, and it
makes me so happy.</div>
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<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I start teaching myself a little ASL to make up for the
apocryphal childhood gesture language I was trained out of, that I have no
conscious memory of, and it feels like breathing air instead of doing
complicated sorcery.</div>
Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-2799087240760337340.post-7528394299181194312015-02-03T12:17:00.003-08:002015-02-03T12:17:58.542-08:00Do You Believe In Your Children?<div>
by <a href="https://unstrangemind.wordpress.com/" target="_blank">Sparrow Rose Jones</a></div>
<div>
<br /></div>
Sometimes a parent of an Autistic child will dismiss what I have to say about autism. One would think that 47 years of living Autistic would give me some measure of insight, but they say, "you're not like my child. You are so high functioning. You drive a car. You have university degrees. You write so clearly and articulately. My child's autism is severe. My child will never do those things. You're so functional, I can't even think of you as having autism at all." <br /><br />I've written a fair bit about how painful those kinds of statements are to me. I've talked about how dismissive it is of me, my experiences, my struggles, my failings and my accomplishments. Telling me I'm "not impaired enough" to even call myself autistic reduces me to a static snapshot of this moment in time -- worse, of someone else's perception of this moment in time. There is so much of me they cannot see in plain text on the internet. They have looked at one facet of me -- my facility with written communication -- and reduced my entire being to that single detail. <br /><br />But today I want to talk about how harmful those statements are to someone else. Yes, they are insensitive and hurtful to me, but what is infinitely more important is that they are damaging to the child to whom I am being compared.<br /><br />A child -- any child, not just an Autistic one -- is a work in progress. By this I don't mean that they are a someday-person. Every child is real and authentic and fully human in this moment, perfect just as they are. But they are also a sort of seed of the adult they will hopefully grow to become. And, to extend this analogy, think for a moment about how plants grow. If you could only see the seeds and bulbs and spores and had no idea what plants they would become, wouldn't you think an iris bulb held so much more growth potential than a sunflower seed? Yet, given time, the sunflower will tower high above the iris blossom. Tiny acorns grow into massive oaks, but before oak trees scrape the sky, that even smaller bit of dandelion fluff will take over the entire meadow, filling it with sunny yellow flowers. <br /><br />The seed is not the plant. The child is not the adult. And children are such mysteries when compared to seeds. The experienced gardener knows how much harvest she will reap from a row of radish seeds, provided no accidents such as drought occur. A parent can give birth to a dozen children and still only have rough ideas of how that twelfth child will turn out, given no accidents that sway the course of the child's growth or cut it tragically short. Parents see things, many things, but not everything. <br /><br />My sister (who happens to not be Autistic) was very gifted with mathematics in her teens. There came a point, in middle school, when my father could no longer help her solve problems, despite his degrees in chemical engineering. My sister was calculating problems involving things such as trains traveling through spiral tunnels. It seemed obvious to all of us in the family that she was destined to be a scientist or mathematician when she grew up. Her aptitude in the STEM fields was tremendous. <br /><br />Imagine my parents' shock when my sister declared art history as her major in university. She went on to work for a non-profit protecting historical architecture before marrying and becoming a stay-at-home mom to two delightful little girls. She was an acorn that grew into a daffodil! I say that not to devalue what she has done. Hers is a well-lived and splendid life and daffodils have intrinsic value. But they are a shock when one expects an oak. <br /><br />Children are unpredictable. Their life trajectories are hugely unpredictable. And, in many ways, Autistic children are even more so. Although I believe that autism is nothing new and Autistic people have always been among us (though unrecognized and called by other names) a clear understanding of what autism is and what the autistic lifespan looks like is still to come. These are uncharted paths that are in the process of being discovered by researchers, by parents, by Autistic people ourselves. <br /><br />So . . . what is it that you are actually saying when you look at my life and say that I am not like your child? <br /><br />In a very real sense, you are saying that you don't believe in your child. You are saying that your child cannot grow to be what I am, do what I have done. You are signing off on a package that has not been delivered yet. You are dismissing your child's potential for amazing growth and change. You are not just reducing me to a static snapshot. You are doing the same to your child. <br /><br />Maybe you look at me driving long distances and then look at your 16-year-old who wants to drive but is not ready yet. You don't see that I was not ready to drive at age 16, either. I didn't get my license to drive until I was 25 years old. And even then, I was shaky and unsure whether I was making a wise decision or not. <br /><br />Maybe you look at me writing detailed descriptions of my inner thoughts and understanding and then look at your 14-year-old who is writing surface descriptions of things and can't even explain why she does the things she does. You don't see that I was not able to begin to explain my actions or seek help for internal suffering until my twenties -- and not really in any meaningful way until my thirties. You see my blossoms and don't recognize that they are late blooms. <br /><br />Maybe you look at me sitting in university lectures and passing exams and making the dean's list and then look at your 7-year-old who needs a one-on-one aide to be allowed to stay in a classroom at all. You don't see that I was hiding under the table and biting people in my first grade class and the teacher protested until I was removed from her classroom. I was still quicker with blows and bites than words at age 15. It has taken a long time and a lot of work to become a person who can deal with stress and conflict without exploding and lashing out. I dropped out of high school. I tried university at age 22 and had to drop out. I got my first university degree at age 40. I dropped out of graduate school. My trajectory has been anything but smooth. <br /><br />So if you really do think that I'm not like your child, you should stop and remember that I am decades older than your child. And you should stop and ask yourself why it upsets you that I do think I am like your child. <br /><br />I think I am like your child because I can see a kindred spirit in your child and because a doctor put the same word, autism, on my different way of interacting with the world as a doctor put on your child's ways. I think I am like your child because when I look at your beautiful child, I see a person but also a seed of the person to come after. I see potential in your child and I think it is magical and wonderful that your child is still being formed -- still forming herself. I see a million different paths your child's life could travel down and it is mysterious and I feel like holding my breath as I watch her grow. <br /><br />If you think I am not like your child, I ask you: do you believe in your child? Do you leave the possibilities open? Do you nurture your child so that he feels safe to grow into the adult he is germinating inside himself? <br /><br />If you believe in your child and you believe in your child's possible futures, I ask that you also believe me when I say that I am like your child. I am like your child and I think she is wonderful beyond the telling. Please, will you believe in her wonder and possibilities, too?Unknownnoreply@blogger.com25tag:blogger.com,1999:blog-2799087240760337340.post-60638144926448488732014-12-07T12:19:00.000-08:002014-12-07T12:28:19.849-08:00Ability is more than the sum of savant skills.<div class="MsoNormal">
A lot of the time, when I ask parents and teachers to
consider a neurodiversity perspective of autism, or to look for what their
children’s strengths may be and not only their deficits, people will retort,
“My child doesn’t have any savant skills!”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And so I wanted to address the relationships between what we
commonly think of as “savant skills,” and communication, expression, and the
deficit model of autism.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Autism is commonly conceived of only as a set of serious
deficits, except for when it confers spectacular, miraculous-seeming, but
isolated savant abilities or splinter skills.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is a problem.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
*</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was kind of already thinking about these things when I ran
across <a href="file:///Users/emilypaigeballou/Desktop/Reports%20from%20a%20Resident%20Alien%20-%20My%20Splinter%20Skill.html" target="_blank">this post</a>, about splinter skills as simply
very specialized expressions of things that are otherwise just called talents,
and<a href="http://www.traininautism.com/Mottron/2006%20Enhanced%20perceptual%20funct.%20JADD.pdf" target="_blank"> this paper</a>, which describes savant skills as specific
perceptual strengths for which the time and tools necessary for reinforcement
are available. (Note: the paper is in <i>very</i> dense, abstract, and academic language. It's a rewarding article to read, but it is not written in accessible language.)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve always presumed myself not to have a savant skill.<span style="mso-spacerun: yes;"> </span>I certainly don’t have any of the
stereotypical, conspicuous ones like card-counting, calendar calculation, or
photorealistic drawing. <span style="mso-spacerun: yes;"> </span>But I’m
not totally sure anymore that’s true.<span style="mso-spacerun: yes;">
</span>Or at least, what my actual core strength is, is fairly ultra-specific
and manifests in a relatively narrow band of tasks.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And I think it’s something related to perception and
filtering of information about time.<span style="mso-spacerun: yes;">
</span>(How’s that for obscure and specific?)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This thing about timing is something I feel like I’ve always
had as a primary perceptual bias. It’s an entirely non-verbal perception, and
yet it can have expression in verbal contexts.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Whether or not I have any way to express it, on the other
hand—to make it apparent as a strength at all—is incredibly context-specific.<span style="mso-spacerun: yes;"> </span>That’s happened twice—in scholar
bowl—where in my first student vs. faculty rounds in middle school, I was so
fast at pulling answers about subjects I’d never studied out of thin air and
hitting a buzzer that it had my teachers scrambling to discover how I was
cheating.<span style="mso-spacerun: yes;"> </span>And in stage management—what
I now do for a living.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
People are still surprised to hear that calling a show—that
is, the act of reciting from a script all the light, sound, and entrance cues
in a show so that they happen exactly when they should—is my favorite part, and
the easiest part to me.<span style="mso-spacerun: yes;"> </span>I was
confused the first time I was asked in an interview, with some skepticism,
whether I <i style="mso-bidi-font-style: normal;">like</i> calling shows.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I <i style="mso-bidi-font-style: normal;">love</i> it.<span style="mso-spacerun: yes;"> </span>Nothing else feels so mentally close to
flight.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And I was just good at those things, the first time.<span style="mso-spacerun: yes;"> </span>I got even better with practice, but
they were things that just intuitively clicked the first time I did them.<span style="mso-spacerun: yes;"> </span>But I was fairly old before I had any
way to demonstrate this as a pattern of skill, and even older before I had the
language or pattern of experience to recognize and identify it for what it is.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The counterintuitive part is that even though it’s a
strength, even though it’s an enhanced perception compared to what most people experience…it
can also be disabling.<span style="mso-spacerun: yes;"> </span>It’s intimately
involved somehow with why speech and initialization of movement are
difficult.<span style="mso-spacerun: yes;"> </span>It’s related to why participating
in group conversation is hard, because other people are using an entirely
different set of cues to direct and understand the flow of conversation.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s a major source of anxiety, because this thing that my
whole sense of the world is patterned on, is undermined and disrupted by most
other people most of the time.<span style="mso-spacerun: yes;"> </span>It’s
part of what makes transitions so hard to navigate for the same reason.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s the <i style="mso-bidi-font-style: normal;">very same</i>
trait that can be a strength or a disability depending on the context in which
it occurs, and sometimes even both at once.<span style="mso-spacerun: yes;"> </span>It’s the same trait that makes speech and gross motor
planning hard, as makes me able to run a complicated show practically as easily
as breathing, depending on my environment, the expectations of people around
me, and the tools I have access to. </div>
<div class="MsoNormal">
<br />
People who have a recognized savant ability or “splinter”
skill are only the ones who have a readily available medium for it. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What’s most alarming to me is how dependent on access to
technology and educational resources my chances of even getting to identify and
make use of this have been.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If I hadn’t had the language capability I do, if I hadn’t
been considered a gifted student, if my chances of going to college were undermined
instead of supported, if I hadn’t had access to theatrical training—all of
which could so easily have happened if I’d remained non-speaking.<span style="mso-spacerun: yes;"> </span>Or if I’d even been diagnosed correctly.<span style="mso-spacerun: yes;"> </span>I would likely have been denied access
to the very resources that are most necessary to expression of my most central
abilities, based only on prejudices about what my inabilities meant.<span style="mso-spacerun: yes;"> </span>(Which weren’t not there anyway, they
were just not acknowledged or presumed to be willful on my part.) </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There is no reason why acknowledging disabilities, deficits,
and need for supports should mean refusing to recognize strengths, or why
recognizing strengths should mean refusing to cope with deficits.<span style="mso-spacerun: yes;"> </span>Humans don’t have only intrinsic strengths
or savant skills or disabilities.<span style="mso-spacerun: yes;">
</span>Not only are none of those things mutually exclusive…they can actually
be intimately related.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It positively frightens me to think about how many kids
could be in a situation in which their strengths are denied because they don’t
fit a limited stereotype of what “savant” abilities look like.<span style="mso-spacerun: yes;"> </span>Where their families and teachers have
been taught to see only grave deficits as consequences of autism. <span style="mso-spacerun: yes;"> </span>Who haven’t been given any way to know or
communicate what tools they need or what kind of environment would best allow
them access to their abilities, which may not resemble what most people think
abilities look like at all.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
How many are being written off as being without abilities,
even without awareness, because they don’t have the medium they need for
expression? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I ask “What are this kid’s strengths?” the answer may
require looking for something that is also at the root of their disabilities.</div>
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<br /></div>
<div class="MsoNormal">
I want to be totally clear:<span style="mso-spacerun: yes;"> </span>I’m not saying that all autistic kids have some hidden,
magical savant skill, but that people are in danger of having their abilities
and competencies ignored when they don’t <i>look like</i> what people think savant
skills look like, and believe that a limited repertoire of savant skills are
the only true abilities that an autistic person could have. </div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-yn7de6xoehc/VIS1po4csaI/AAAAAAAAAC0/XNbg40iXZ1c/s1600/headset.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-yn7de6xoehc/VIS1po4csaI/AAAAAAAAAC0/XNbg40iXZ1c/s1600/headset.JPG" height="240" width="320" /></a></div>
<div class="MsoNormal" style="text-align: center;">
[Image is of a Clear-Com headset sitting on top of a stage manager's calling script, with lots of cues and timing notes written in.]</div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2799087240760337340.post-23125699574282066152014-10-29T09:25:00.001-07:002014-11-02T09:46:00.609-08:00Small things matter: hunger, meltdowns, and coping skillsBy <a href="http://restlesshands42.wordpress.com/" target="_blank">Aiyana Bailin</a><br />
<br />
Let me preface this by saying that I don't have a formal ASD diagnosis (just various mental illness labels), and am unsure whether or not I'd qualify for one. What I can say is that, throughout my life, I have had various small but very significant gaps in what is considered "normal" functioning for someone of my age group. Many of them are common among autistic people. Some of them were easily overcome or managed, others not so much.<br />
<br />
I want to talk here about one that caused me quite a bit of grief before I learned how to cope with it, but which was actually quite easily accommodated once I understood it.<br />
<br />
I'll begin by noting that I struggle with eating sometimes. My appetite varies wildly according to numerous factors from stress level to time of the month, and I can easily forget to eat altogether for the better part of a day, or more. I've been known to faint before realizing I was hungry.<br />
<br />
I was lucky to grow up with a mother who put food in front of me three times a day, so I ate quite regularly as a child. The downside was that, when I became a teenager and began spending more time out of the house, I didn't yet have the ability to notice for myself when I needed to eat or take appropriate steps to acquire food before I collapsed.<br />
<br />
And here we run into the real problem, which is that sometimes, when I haven't eaten recently enough, and especially in the morning before my first meal, I cannot function. I don't mean I am grumpy or groggy or poor at making decisions. I mean that, intellectually and emotionally, I revert to essentially the same level as a tired toddler. I can't make the simplest choices. I burst into tears at minor frustrations and then can't stop crying. I'm very nearly helpless, particularly if anyone asks me to do or think about anything that I can't do on autopilot.<br />
<br />
My mother and I really discovered this shortcoming on my college tour trip. We had stayed overnight at a hostel, and in the morning we dressed and set out to find a place to eat breakfast. My mother asked me what I wanted. I wasn't sure. She questioned further, trying to get a better idea or a decision. I became mildly hysterical. I have a vague memory of standing on a sidewalk in tears, wailing "I don't know! I don't know!" over and over while my mother looked on in shock and confusion at her college-bound, nearly-adult daughter going entirely to pieces over the question "what do you want for breakfast?" I was completely out of control in what I now recognize as a meltdown.<br />
<br />
Somehow, Mom got me calmed down and into a cafe, and I managed to order something. Within minutes of starting to eat, it felt like I returned to awareness after having been only dimly conscious of myself. I still felt shaky, but I was suddenly rational again, able to control my emotions, to think, to focus. The feeling of panic and overwhelm was gone.<br />
<br />
"I think," I said, eventually, "it may be best if, in the future, you don't ask me any questions until I've had something to eat. You can choose for me next time, ok?"<br />
<br />
"That sounds like a very good idea," said my mother, who was a bit emotionally exhausted herself by the ordeal.<br />
<br />
It wasn't quite as easy as that. She's forgotten this rule sometimes, and I'm usually in no condition to remind her of it when that happens. Sometimes she doesn't know I haven't eaten recently until I melt down over something minor and she thinks to ask. Sometimes there are questions she needs an answer to before breakfast. Often, I'm fine up to a point-- I can answer certain questions better than others, or I wake up energized and am ok for a while before the need to eat sets in. Then it takes everyone, myself included, by total surprise when I suddenly break down.<br />
<br />
I've become more adept at managing this over the years. I make breakfast plans the night before. I warn lovers and traveling companions about the hazards of questioning me before I've eaten or at least drunk something with calories in it. If we plan to dine out for breakfast (not a common occurrence), I eat a granola bar before leaving home.<br />
<br />
Over the years, my primary tactic has become a lot simpler. Now there is always some kind of snack food on my bedside table. Usually, I admit, something with a fair bit of sugar in it-- a single-serve packet of cookies, for example, or a candy bar-- something I'm not likely to turn down even if I don't feel the least bit hungry. So I get some sugar into my bloodstream before I even get out of bed, and I find it helps me be more alert and functional in general (I've been tested for hypoglycemia, by the way, and I don't have it-- or any number of other metabolic abnormalities that have been suggested. Ultimately, though, in this case it hasn't been a diagnosis that made the difference, just finding a coping strategy). I'm sure plenty of people, including my mother, would disagree with me from a nutritional standpoint, but it works for me. And some days, it truly makes a world of difference.<br />
<br />
Small things matter. Individualized coping strategies matter. Identifying needs and triggers can mean the difference between a horrible day for everyone and the complete opposite. It does no good to blame someone for going to pieces when they can't handle something, and it doesn't really matter why they can't handle it, either-- you just have to accept that they can't and work from there. Abilities can vary a lot with context. This story is the very simplified version-- lots of ups, downs, and variations actually occurred before this all ran smoothly. And my coping strategies still fail me at times, particularly if something interrupts my regular routine. But such failures happen less often now than they used to. Years of practice helped. Hang in there. Keep trying things until you find what works for you.<br />
<br />
<br />
<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-2799087240760337340.post-74461981100388150652014-08-10T16:40:00.001-07:002014-08-10T16:40:10.166-07:00The Unrecovered (response to the New York Times's "The Kids Who Beat Autism")<div class="MsoNormal">
I have had a lot of reaction in the past couple of days to
that Times Magazine article concerning “The Kids Who Beat Autism.”<span style="mso-spacerun: yes;"> </span>Here’s about all I have left.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The parents, the teachers, the therapists and researchers
without a clue who are celebrating “recovery” because in their heads they’re
defining autism as a fixed set of permanent inabilities—</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-Are not the people doing the work of passing, and are not
going to be the ones to find out first-hand just how long it isn’t actually
sustainable.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-Are not the people who get told we’re too articulate to be
autistic but have to ration our hours of speech per day.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-Are not the developmentally disabled women who suffer a
sexual abuse rate of over 90%, no thanks to the compliance training that
teaches that allowing others to control our bodies is desirable behavior.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-Are not the kids pulling themselves through school without
disability accommodations.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-Are not the kids getting their supports pulled out from
under them when they lose a diagnosis.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-Are not the kids getting chided and belittled because their
challenges and oddity are now seen as choices of defiance or misbehavior.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-Are not the people being lied to about who they are.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-Are not the people who are going to wake up one day 20
years from now with no idea who they are or how they got there.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-Are not the people who will spend a year and a half having
a meltdown with no idea of what’s happening or why.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-Are not the kids being taught that accepting yourself as
you really are and as you really work, would be the worst possible thing.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-Or that the “best outcome” possible for you is to spend the
rest of your life pretending to be something you’re not.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-Are not the people who are going to have to re-learn where
they belong in space and time and how to live there.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-They will not be the people giving these kids a community and
a support system years from now.<span style="mso-spacerun: yes;">
</span>They will not be the ones who know what to do when they start having
breakdowns and burnouts.</div>
<div class="MsoNormal">
They will not be the ones supporting their kids in learning
self-acceptance when all their passing skills fail because they are actually
incompatible with functioning in the long term.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We will.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
They will not be the people there to pick up the pieces.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We will.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There is, indeed, hope for the kids featured in this
article, for joy and authenticity.<span style="mso-spacerun: yes;">
</span>This article could’ve come with a spoiler alert; we know the end of this
story.<span style="mso-spacerun: yes;"> </span>We know it many times over.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s just not that these kids live out their lives as
non-autistic people.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
(Crossposted from <a href="http://chavisory.wordpress.com/" target="_blank">Chavisory's Notebook</a>.)</div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-2799087240760337340.post-85542222960550217732014-07-28T22:55:00.001-07:002014-07-28T23:12:29.163-07:00I am autisticWe Are Like Your Child is pleased to host a guest post from Heather E. Johnson today! Heather blogs at <a href="http://heathr.wordpress.com/" target="_blank">And here are my words...</a><br />
<br />
*<br />
<div style="font-family: 'Lucida Grande', Verdana, Arial, sans-serif; font-size: 12px; line-height: 21.600000381469727px; margin: 10px auto; padding: 0px; text-align: justify;">
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><u><b>I am autistic</b></u></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">okay, that may be a “duH” thing to write as a
headline but it seems many of my Facebook friends fail to remember that. I
don’t know how. I exhibit many of the symptoms. It seems to be that it is
because I type well.</span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: 'Lucida Grande'; font-size: 12pt; line-height: 21.6pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: 'Lucida Grande'; font-size: 12pt; line-height: 21.6pt;">Well, I don’t recall that being listed <a href="http://www.dsm5.org/Documents/Autism%20Spectrum%20Disorder%20Fact%20Sheet.pdf" target="_blank">as a thing</a></span><span class="apple-converted-space" style="font-family: 'Lucida Grande'; font-size: 12pt; line-height: 21.6pt;"> </span><span style="font-family: 'Lucida Grande'; font-size: 12pt; line-height: 21.6pt;">when the changes were being made.</span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><span style="color: windowtext; text-decoration: none; text-underline: none;"><a href="http://www.donotlink.com/oO0" target="_blank">Here</a></span><span class="apple-converted-space"> </span>is the DSM-V diagnostic criteria on
severity and levels. I know I should be shot for using an Autism Speaks source
but they were the top search engine return that fit my need!<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">Okay, so based on this new criteria, here is how I
was recently re-labeled. (recently as in days ago). I use excerpts from the
cited website above and from my doctor’s notes on his findings. (I always get a
page by page copy of my medical records to keep on hand. They have come in
handy, in particular for cases such as this evaluation.<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">“Persistent deficits in social communication and
social interaction across multiple contexts, as manifested by the following,
currently or by history:<o:p></o:p></span><br />
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">Deficits in social-emotional reciprocity, ranging,
for example, from abnormal social approach and failure of normal back-and-forth
conversation; to reduced sharing of interests, emotions, or affect; to failure
to initiate or respond to social interactions.”<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><span style="color: #674ea7;">From my doctor’s notes:</span><span class="apple-converted-space"> </span>” Ms. Johnson shows deficits in
social-emotional reciprocity. She fails in social approach (based on documented
medical records from birth to present day) and failure of back and forth
conversation. She often stares in a state that makes her look like she’s
daydreaming while someone is talking with her, including this physician during
our interviews. She reports that she “zones out” when trying to converse with
others after her interest in what that person has to say wanes. Ms. Johnson
does seem to have improved in recent years in her desire to initiate and
respond to social interactions but has not been able to follow through except
in online contexts.”<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">”Deficits in nonverbal communicative
behaviors used for social interaction, ranging, for example, from poorly
integrated verbal and nonverbal communication; to abnormalities in eye contact
and body language or deficits in understanding and use of gestures; to a total
lack of facial expressions and nonverbal communication.”<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span>
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><span style="color: #674ea7;">From my doctor’s notes:</span><span class="apple-converted-space"> </span>“Ms. Johnson has deficits noted in her
medical records which were provided to this physician and covered from birth to
present day. She does not consistently and successfully use nonverbal
communicative behaviors in social interaction. As observed by this physician,
she presents with a total lack of facial expressions at times and does not seem
to understand nonverbal communications used in many contexts. She probably
succeeds more in her online social interactions because nonverbal communication
is not used in that form. She makes minimal eye contact with others, as
observed by this physician, and often uses a coping skill of looking at a
person’s nose rather than their eyes.”<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">“Deficits in developing, maintaining, and
understanding relationships, ranging, for example, from difficulties adjusting
behavior to suit various social contexts; to difficulties in sharing
imaginative play or in making friends; to absence of interest in peers.”<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><span style="color: #674ea7;">From my doctor’s notes:</span><span class="apple-converted-space"> </span>“Ms. Johnson is an adult at present
and some of the observations come from her previous medical records and some
from this physician’s personal observation. Ms. Johnson states she can only
recall two incidents where she initiated “making friends” with another person.
A first grade teacher provided a report to a military physician in 1984 that
Ms. Johnson, as a seven year old, “does not seem to play well with others and
prefers to play alone or alongside her classmates. This is not developmentally
where she should be.” Ms. Johnson stated that she lost contact with her sister
for 10 years and only realized she missed this sister when she came into
contact with her again online last year. Ms. Johnson further stated that she
has always felt “if my friends were out of sight, they were out of mind” and
she does not actively seek to stay engage in her relationships. She waits for
her friends to call her or message her on Facebook, a social media website. The
only exception seems to be her biological father.”<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">“Restricted, repetitive patterns of behavior,
interests, or activities, as manifested by at least two of the following,
currently or by history<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">Stereotyped or repetitive motor movements, use of
objects, or speech” and<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">“Insistence on sameness, inflexible adherence to
routines, or ritualized patterns or verbal nonverbal behavior"<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><span style="color: #674ea7;">From my doctor’s notes:</span><span class="apple-converted-space"> </span>“Ms. Johnson does present with
repetitive motor movements also known as “stimming”. She moves her hands in a
manner that could be described as “flapping” or “trying to clap with one hand
only” while waving the arms around. Ms. Johnson does carry a co-occuring
diagnosis of Obsessive Compulsive Disorder and therefore also shows repetitive
patterns of behavior, interests and activities as a part of that condition. It
is unclear which diagnosis is the cause of that behavior at present. Nor is it
clear at present which disorder causes the inflexible adherence to routines and
ritualized patterns. For instance, she does things so that they are done an
even number of times, often repeating phrases so that a phrase is said an even
number of times. She once refused to sit in an office when it had three chairs
instead of an even number of chairs.“<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">"Highly restricted, fixated interests that are
abnormal in intensity or focus”<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><span style="color: #674ea7;">From my doctor’s notes:</span> “Ms. Johnson has a varied
amount of interests and states that she “collects” interests to obsess about.
However, this physician has noted that her interests are abnormal in intensity
and focus both from observation and in documented history. Ms. Johnson reports
that she “cycles” through her interests. She will spend days or weeks focused
on one interest and then move to the next and so on until she is back into the
original interest. This method of cycling is part of a ritualized behavior as
she starts with the same interest and moves to the next interest in the same
pattern each time.”<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">“Hyper- or hyporeactivity to sensory input or
unusual interests in sensory aspects of the environment”<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><span style="color: #674ea7;">From my doctor’s notes:</span> “Ms. Johnson has both
observed and documented in history of hyper and hyporeactivity to various
sensory input. She has exhibited a high pain tolerance in documented history.
There is documentation that she has failed to wear weather-appropriate clothing
when allowed to dress herself as a child. She reports that presently she often
leaves the house without a coat even during winter months. Again, with her OCD
diagnosis, it is difficult to distinguish the behaviors between autism and the
OCD. She reports that she routinely spends time sniffing the air while taking a
tour of her home, to check for smells of something burning. She often touches
the walls as well to make sure they are not hot. Ms. Johnson does exhibit an
unusual fascination with visual stimulation. She has documented history of poor
visualization skills and this may account for her fascination.”<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">“<strong><span style="font-family: "Lucida Grande";">Severity
is based on social communication impairments and restricted, repetitive
patterns of behavior</span></strong><span class="apple-converted-space"> </span>“<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">“Level 3</span><span style="font-family: 'Lucida Grande'; font-size: 12pt; line-height: 21.6pt;">Requiring very substantial support"</span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">Severe deficits in verbal and nonverbal social
communication skills cause severe impairments in functioning, very limited
initiation of social interactions, and minimal response to social overtures
from others<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">Inflexibility of behavior, extreme difficulty coping
with change, or other restricted/repetitive behaviors markedly interfere with
functioning in all spheres. Great distress/difficulty changing focus or
action.”<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><span style="color: #674ea7;">From my doctor’s notes:</span><span class="apple-converted-space"> </span>“While Ms. Johnson is able to
verbalize her communication, it does appear to come at a cost to her. As
the first hour-long interview came to a close, Ms. Johnson appeared more tired
and less aware of surroundings than when first started. She was confused and
was unable to navigate her way back to the exit on her own and required
assistance in finding her way. Ms. Johnson reported on the second interview
that she found it hard to “function at all” after the first interview was
conducted and she returned home. When functioning does become difficult, she
prefers to go to her bed and retreat from the world around her. Ms. Johnson
receives daily care from up to three caretakers in a given day. It is this
physician’s belief that if Ms. Johnson did not receive such substantial support
as she does from caretakers, friends and family members, she would
ultimately be institutionalized or at the minimal, in an assisted living
facility or group home. She is unable to act on a prescribed budget and make
sure her expenses are paid in a timely fashion, she is unable to remember to
eat on her own, or to take in liquids. She is unable to leave the house on her
own much of the time, requiring an escort. Ms. Johnson has many physical,
biological, and neurological conditions that contribute to her depressed
functional abilities; however, it is this physician’s opinion, based on
observation, interviews with patient and others, documented history, documented
testing and results, that Ms. Johnson should carry the diagnosis of Autism
Spectrum Disorder, specifically, Level 3.”<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<br /></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">So, what does this mean? Well, it means, dear
concerned parent of a child with autism, I am not “high functioning autistic”.
Not that I find it to be an insult, mind you. There’s nothing wrong with being
labeled as such, despite what some of these parents seem to think. It means I
am more like your ‘severely autistic’ child than you think. In fact, I bet your
child and I carry the same diagnosis.<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<br /></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">I want to take this moment to also point out how
unfair you are to your child. I am now 37 years old. How old is your child?
Five? Three? And you want to compare his current functioning level to mine?? I
have had YEARS of maturing and growing and learning.. decades! Our arc of
maturity may be longer than a neurotypical person’s but that by no means should
suggest we ever STOP.<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">I work with my sons’ therapist all the time. When
he notices we are attempting to teach one of my son’s a skill that I have yet
to acquire, I teach myself first and then my child. Much like a parent who
doesn’t “get math” will first try to understand his or her child’s homework
assignment and then assist that child with a problem. So, I am always
improving. Always adapting. So will your child. Please, though, stop comparing
your children to the autistic adults you come across.<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">Please, stop accusing us of being “high
functioning’ as a way to mean that we’re not “as autistic” as your children
are. Please, stop believing that even if we are not as severely autistic as
your child is, that we do not know some of the things your child experiences or
that you cannot learn from us.<o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">Oh, don’t get me wrong. There are some autistic
adults that are as “bad” as these parents I’m currently talking to. It’s okay
to say that parenting a child on the spectrum is HARD. Why? Because parenting a
child, period, is hard. I don’t know any different though as both my sons have
a form of autism. However, I recently adopted a 17 year old male who does not
have autism. And in the 3 weeks he has lived in our home, he has become a
member of this family, and I treat him like I do any of my sons. Just because
he’s neurotypical doesn’t mean he’s any harder to deal with than my other
children. I love them equally.<span class="apple-converted-space"> </span><span class="wp-smileyemojiemoji-bigsmile">:D</span><o:p></o:p></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><span class="wp-smileyemojiemoji-bigsmile"><br /></span></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">Seriously tho, folks. Stop it. Just stop it. Stop
assuming you know my severity level because I can type 108 wpm, on average,
sustained over a five minute timed test.<o:p></o:p></span><br />
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;"><br /></span></div>
<div style="line-height: 21.6pt; text-align: justify;">
<span style="font-family: "Lucida Grande"; font-size: 12.0pt;">As my father pointed out yesterday… I may have
much knowledge gained from memorizing books but it doesn’t mean I can apply it
effectively. Just because I can type doesn’t mean I can talk. Just because I
can type, doesn’t mean I don’t also wear adults diapers (because I do). Just
because I can type, doesn’t mean I’m able to, on my own, pay my bills on the
day they due (not because of lack of money but because of lack of thought).
Just because I can type, doesn’t mean I can get organized and clean my house on
my own. Just because I can type, doesn’t mean I don’t have executive function
issues. Just because I can type, doesn’t mean that my autism is any less
pervasive than your child’s autism. Just because I can type, doesn’t mean I
don’t have challenges that come with autism. I have overcome many of them and
some I overcome daily in order to interact with you. Why? Because I do care
about your children. I care about my own children. I want their world to be a
more accepting and less judgmental place when they grow up and enter it.<o:p></o:p></span></div>
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Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-2799087240760337340.post-65346872765458453422014-05-28T22:54:00.001-07:002014-05-28T22:57:44.091-07:00You, yes you, need Autistic friends.<span style="font-size: xx-small;"><i>Intended audience: parents of Autistic kids. Though obviously everyone needs Autistic friends.</i></span><br />
<br />
<span style="font-size: small;">So your child was just diagnosed with autism. Breathe. Breathe deeper. Relax. It'll all be ok. But you have some work to do.</span><br />
<br />
The <i>first thing</i>
you need to do isn't find therapists. It isn't commiserate with other
parents. It isn't become an AAC expert (though all of these things have
their place!). It's something not in the autism introduction packet: you
need to connect on a human level with adults like your child. You need
to go make some Autistic friends.<br />
<br />
I don't mean a
mentoring relationship, though those are extremely important and I am a
big fan of mentoring (and mentoring your child & being friends with
you are not mutually exclusive). I definitely don't mean "translate my
child to me" (which is not a friend thing particularly). I mean find
local Autistic adults with whom you have common interests and connect as
equal human adult people.<br />
<br />
There are a whole lot of reasons this is the best thing you can do for your child:<br />
<br />
First,
and possibly most importantly but mileage varies: your child is
noticing things. If you go through a mourning phase, or a difficult
adjustment phase, your child will notice and possibly blame himself.
Your child may not have the vocabulary for it, but at some point he will
figure out that he isn't the son you planned for and dreamed of, and he
might blame himself for that. We figure it out when we're a
disappointment, even if you do your best to hide that you're having a
hard time. Many Autistic children get in our heads, accurately or not,
that our parents only tolerate us because they're stuck with us.<br />
<br />
Your
child needs to see you choosing to be around people whose minds work
like his. It's much harder to think your parents hate you and hate your
brain when they seek out the company of people who think like you.
Seeing the adults who are dearest to you--and like all children,
Autistic youth default to loving their parents--seeing them find someone
who reminds you of you? That's supremely important. Do not
underestimate the effect this can have, just knowing that your parents
would choose to be around you even if they weren't "stuck" with you.<br />
<br />
Another
reason: many disabled children never meet an adult with their
disability. You might be surprised, and a bit saddened, at the
conclusions we come to. Some folks come to the vague idea that we'll
outgrow our disabilities (and when there's no sign of that, we're
reminded that we're disappointing, because you can bet we're getting
that message from <i>someone</i> in our lives). Or, I have friends who
concluded that their disabilities were fatal. That's a recipe for severe
anxiety, thinking that you're dying but you feel fine and no one has
felt the need to talk to you about your inevitable demise. We need
adults like us; this anxiety is completely unnecessary. <br />
<br />
Your
child also needs role models. She may not be able to fill your shoes,
or Uncle Bob's or Auntie Bev's or her teacher's or those of any adult in
her immediate sphere. But my shoes may fit, or those of another adult
Autistic. All children need people in their lives who they can
realistically emulate, & Autistic children are no different. I was
pretty young when I knew the adult-woman things being modeled for me
were just not going to happen ever--and alternatives were never
presented. I was surrounded by folks who were similar to each other and
not much at all like me. This is stressful. Making your own make is
hard, and it's harder when everything you do is wrong (the premise of
somewhere between many and most autism therapies, and a message also
sent by peers, random strangers in the store, other adults, etc). Once
again, anxiety. It's easier to believe you aren't Doing It Wrong when
you know happy adults who took similar trails. Knowing options for the
future? Seeing unconventional but fulfilling adulthoods? So important.<br />
<br />
If
you have culturally connected Autistic friends, your child also will
have a head start on a connection to the community. As he grows older,
he will have a life apart from your family. This is a good thing and an
essential part of growing up. The Autistic community is his birthright.
We as a general rule (can't speak for everyone) welcome friendly
parents, but your child is one of us. It's wonderful but also
overwhelming and scary to discover a place where you're "normal" when
you've never been, especially all alone. Even good overwhelm is
unpleasant when it gets too big. You can make this less of a shock by
having Autistic friends. "I'm not alone" doesn't have to be an adulthood
revelation; it can be a given. Your child deserves to grow up knowing
that he <i>isn't</i> alone, that there's a whole community that will
embrace him because he's one of ours. The gift of growing up with this
knowledge? I cannot imagine it having anything but good effects.<br />
<br />
Also, we're awesome. Autistic people are loyal and hilarious, among other things. We're <i>good friends</i>.
We might provide insight to things about your kid that you never
thought of, completely on accident. Your way of looking at the world may
accidentally clarify things for us, too. But in my experience, Autistic
people are the funniest people on earth, and the most dedicated to
making sense and to fixing things that are not right (admittedly, my
sample might be skewed, but I also have a very large sample size).
That's how the people I hang out with roll. Making friends with us isn't
just good for your child. We're good for you, too, and you can be good
for us. A true friendship is a mutually beneficial relationship. We have
a lot to offer each other.<br />
<br />
So breathe, put down the
pamphlets about all the different therapies, breathe again, and look in
your networks for some Autistic connection. It'll make your life, your
child's life, and some local Autistic's life, better.<br />
<br />
<i><span style="font-size: x-small;">Crossposted from <a href="http://timetolisten.blogspot.com/" target="_blank">Radical Neurodivergence Speaking</a></span></i><a href="http://timetolisten.blogspot.com/" target="_blank"> Radical Neurodivergence Speaking</a>Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com3tag:blogger.com,1999:blog-2799087240760337340.post-46181422129230781662014-05-11T19:00:00.000-07:002014-05-11T19:00:00.577-07:00A checklist for identifying sources of aggression<div class="MsoNormal">
One of the most frequent and difficult parental concerns
that we see in the autism community is that of aggressive behavior on the part
of a child or teenager.<span style="mso-spacerun: yes;"> </span>Caring
parents are often frustrated at not being able to discern the source of their
child’s distress, or worry that while they can handle the physical outbursts of
a small child, they won’t know what to do when a child is older and larger.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Several of us at We Are Like Your Child have personal
experience with anger and aggression, or with children who do.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The following is a checklist of questions to address when
trying to identify the source of and alleviate aggression on the part of an
autistic child or adult.<span style="mso-spacerun: yes;"> </span>It does
not necessarily include every possibility, but is a preliminary checklist of,
in our experience, some major primary issues that are likely to be related to behavior
observed as aggression on the part of an autistic person.<span style="mso-spacerun: yes;"> </span>(To some extent, many of these issues
can be related to self-injury as well.)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
These are presented in no rigid order of likelihood or
importance—they are all important factors to consider and investigate, and may affect different
individuals in different ways and different combinations.</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><br /></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">1.</b><span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">Make
sure that they are not being abused or mistreated in any way</b>—At home, at
school, in therapy or other activities…by parents, by teachers, by classmates,
by siblings (including what might seem like “normal” taunting)…physically,
sexually, emotionally or psychologically.</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><br /></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">1a.</b><span style="mso-spacerun: yes;"> </span>If they are being subjected to therapy
intended to normalize their appearance, behavior, or mannerisms, to extinguish
stimming, or ensure compliance or indistinguishability, they are being abused.</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><br /></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">1b.</b><span style="mso-spacerun: yes;"> </span>Do teachers at school engage in group
punishment for the misbehavior of individual students?<span style="mso-spacerun: yes;"> </span>If so, it can feel like there’s no
point to behaving well or not lashing out, since they’ll be punished anyway for
what they didn’t do.<span style="mso-spacerun: yes;"> </span>Extreme
anxiety can also result from feeling like you can’t ever know what the right
thing to do is, since punishment is seemingly random.</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><br /></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">2.</b><span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">Do
they have a reliable and safe mode of communication?</b><span style="mso-spacerun: yes;"> </span>If not, what is being done to address
that?</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><br /></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">2a.</b><span style="mso-spacerun: yes;"> </span>Is gaining speech being prioritized
over developing a mode of communication that works better for them?</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><br /></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">3.</b><span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">Is
their communication, in whatever form it occurs, being acknowledged as such and
honored?</b><span style="mso-spacerun: yes;"> </span>Do people take
seriously what they say, in whatever way they are able to say it?<span style="mso-spacerun: yes;"> </span>Can they get their needs met by
non-aggressive means?</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><br /></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">4.</b><span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">Is
their competence being presumed?</b><span style="mso-spacerun: yes;">
</span>Is their autonomy and right to self-direction being honored to the
greatest extent possible?<span style="mso-spacerun: yes;"> </span>Is their
right to bodily autonomy or personal space being violated?<span style="mso-spacerun: yes;"> </span>Are they being forced, pushed, tricked,
or coerced into activities or modes of social interaction that they are not
ready for?<span style="mso-spacerun: yes;"> </span>Are they being put into
situations where they feel unsupported or unsafe?<span style="mso-spacerun: yes;"> </span>Are they being allowed to do academic work at their level of
capability?<span style="mso-spacerun: yes;"> </span>Are their strengths being recognized and supported?<span style="mso-spacerun: yes;"> </span>Are they trusted to know and assert
their own limits?<span style="mso-spacerun: yes;"> </span>Are they being
included to the greatest extent possible in plans regarding their welfare, education,
and activities?</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><br /></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">5.</b><span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">Is
something wrong in their sensory environment</b>, whether at home or at
school?<span style="mso-spacerun: yes;"> </span>Is their home or classroom
environment too loud, chaotic, claustrophobic, or unpredictable?<span style="mso-spacerun: yes;"> </span>Are they trapped in an environment with
other kids they find overwhelming, hostile, or threatening?</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><br /></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">5a.</b><span style="mso-spacerun: yes;"> </span>If they are intense sensory seekers in
any way (and remember that someone can be sensory-defensive in some regards,
and also sensory-seeking in others), do they have an outlet for intensive
physical input and focus, such as a martial art, sport, hiking, swimming, or
horseback riding? </div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><br /></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">6.</b><span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">Are
they allowed to say ‘no’ and have it mean something?</b><span style="mso-spacerun: yes;"> </span>This does not mean that they never have
to do something they don’t want to do (like go to the doctor or dentist), but
if the matter at hand is not a matter of life, health, or immediate safety, are
they allowed to refuse activities or situations that they find uncomfortable or
have no interest in?</div>
<div class="MsoNormal">
If an unpleasant situation is truly unavoidable, is
everything possible being done to identify and address their discomfort?</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><br /></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">7.</b><span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">Is
sadness, grief, or anxiety being expressed as anger or irritability?</b><span style="mso-spacerun: yes;"> </span>(This is VERY common in autistic
people.)<span style="mso-spacerun: yes;"> </span>Have they experienced a
loss of a family member, friend or favorite classmate, pet, or member of their
support staff recently?</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><br /></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">8.</b><span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">Have
their plans, routines, or need for ritualization been disrupted?</b><span style="mso-spacerun: yes;"> </span>Has something changed recently in their
environment, family life, or social milieu? </div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><br /></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">9.</b><span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">Have
they had a full medical checkup and blood panels recently?</b><span style="mso-spacerun: yes;"> </span>Is it possible that they’re in pain or
discomfort from a treatable medical condition or food allergy/sensitivity that
they lack verbal means to communicate?<span style="mso-spacerun: yes;">
</span>(Even in verbal individuals, alexythymia, body awareness issues, effects
of compliance training, and atypical pain perception can make communication
about illness or pain difficult.) <span style="mso-spacerun: yes;"> </span>Nutritional,
dietary, and metabolic issues can also wreak havoc with our ability to
self-regulate.</div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><br /></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">10.</b><span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">Are
they being allowed sufficient down time and privacy?</b><span style="mso-spacerun: yes;"> </span>Or does their school and therapy
schedule mean that they’re working the equivalent of two full-time jobs?<span style="mso-spacerun: yes;"> </span>Is their ability to multi-task or
process being overwhelmed?<span style="mso-spacerun: yes;"> </span>We are
very vulnerable to sensory, information, and emotional overload.<span style="mso-spacerun: yes;"> </span>Do they have truly free time to spend
as they choose or be alone?<span style="mso-spacerun: yes;"> </span>Do
they have a space that is their own?</div>
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<br /></div>
<div class="MsoNormal">
Finally,
something that we very strongly recommend, if you are looking for further
guidance or input, is to find an autistic adult or mentor local to you, who can
meet you and your child, observe their environment and interactions, and give
feedback on what kinds of changes or interventions might be helpful.</div>
Unknownnoreply@blogger.com44tag:blogger.com,1999:blog-2799087240760337340.post-17119763385093405012014-05-05T12:30:00.001-07:002014-05-05T12:30:17.943-07:00I Am a Pushmi Pullyu<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-69u74P-vv0E/U2flctS0aFI/AAAAAAAAABU/hfh95nSU74E/s1600/pushmipullyu_scaled.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-69u74P-vv0E/U2flctS0aFI/AAAAAAAAABU/hfh95nSU74E/s1600/pushmipullyu_scaled.JPG" height="320" width="318" /></a></div>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
[image description: a pen-and-ink drawing of an animal that looks like the front half of two llamas, attached to one another at the waist. This is the "Pushmi Pullyu" creature from the Doctor Dolittle stories, an animal that gets nowhere because it wants to go in two directions at once.]<br />
<br />
<br />
<br />
<br />
<br />
<br />
Like the famous creature from Doctor Dolittle stories, the Pushmi Pullyu, I am pulled in two different directions and, as a result, have a hard time getting anywhere at all. I have two strongly conflicting elements to my nature and only as I approach fifty years of age am I beginning to understand both elements enough to start finding a balance between them.<br />
<br />
One half of me is an extravert. Yes, you heard that right. I am an Autistic extravert, the creature some would assure you doesn't exist. The official definition of an extravert is someone who gets their "juice" from being around people. I do love to spend time alone -- reading, writing, drawing, composing. Most extraverts are not "allergic" to spending time alone. But I deeply crave the company of people, their smiles, their thoughts, their play. I love group activities like dancing and drum circles. I love community events, especially colorful ones like Rainbow Gatherings and pagan festivals. I crave a large and diverse circle of friends. I want to be in the thick of things.<br />
<br />
The other half of me is both sensory defensive and has C-PTSD. That half can't bear to be around people in numbers of more than 2 or 3 or for very long at a time. Bright lights, flashing lights, temperature highs and lows, strong smells, high-pitched noises, unexpected touch, rapid movement (think gaggles of children racing back and forth) are just unbearable for me. Crowds are a sensory nightmare. I simultaneously crave the press and chaos of a crowd and recoil in horror when I actually experience it. As a small child, I wanted to play with the other children but most often ended up hiding under the table from all their dashing about and squealing and stressful unpredictability.<br />
<br />
On top of the sensory issues, years of brutal bullying and abuse have left me jumpy, suspicious, afraid of people, untrusting. I have a deep hunger to be part of a family, a circle of friends, a community, but when I find myself in the midst of people, I freak out, I snap, I react, I run away and hide. I just can't handle being around people and the sensory issues and C-PTSD build on each other in an ever-cycling feedback loop.<br />
<br />
For years, these two halves of me were at war, just like the two halves of the Pushmi Pullyu battle over which direction to take. It didn't help that others would say things like, "toughen up," and "just give yourself time and you'll get used to it." I blamed myself for my dual nature and took it as a sign of weakness and inadequacy. If only I could just toughen up and stop being troubled by my senses! Or, conversely, if only I could drain away this childish need for others and be strong and adult enough to be truly happy alone!<br />
<br />
But I wouldn't allow one half or the other to win and so I was living in a war zone. And every stress that came from forcing myself to endure emotional and sensory distress, waiting to "toughen up" and get used to it, added to the invisible wall between me and community. I began to live vicariously through movies and television shows. The Big Chill. Northern Exposure. Buffy the Vampire Slayer. I drank up those scenes of community, togetherness, chosen family. I hungered deeply for that sort of connection myself, but whenever I tried to find it, I would just end up a trembling ball of anxiety and tears.<br />
<br />
Admitting that I am a Pushmi Pullyu was at least half the road to recovery for me. I am working on the emotional issues, but the sensory issues will not go away -- they are neurological and hard-wired into who I am. I will always be a person who needs quiet, gentle, short contact with only a few people at a time. My goal now is seeking balance -- finding a middle path between the crowds I wish for and the solitude my nervous system requires.<br />
<br />
It's a delicate balancing act and one I'm still working on. I wish I had known and understood these dynamics when I was a child. As a child, I was a bit like the "painted bird" -- the bird who is painted a different color from the rest of the flock. The painted bird has a strong instinct to fly with the flock but the flock does not recognize it as one of their own, so they peck and peck at it, even unto death. The poor painted bird just keeps flying back for more because it needs the flock and it doesn't understand why everyone keeps pecking it. It dies confused and bloodied, still struggling to rejoin the others.<br />
<br />
That was me as a child, striving again and again to be part of the community that was bullying and torturing me so harshly. No matter how hard they pecked me, I still kept trying to be one of them. The end result of years of this dynamic is Complex Post-Traumatic Stress Disorder: I have been "shell shocked" by bullying that sometimes became so violent that my life was at risk. And still, all I wanted was to belong.<br />
<br />
There are many children out there like me. If you are parenting a painted bird child never say anything that could lead them to feel the blame for the abuse they are getting. I was told that I was bringing the abuse on myself and that belief was every bit as harmful to me -- a harm that still lingers with me today -- as the abuse itself. Protect your little painted bird. People will say "it's just good fun. All kids go through bullying. Yours just needs to toughen up a little." Say, "no! My beautiful, gentle child does not need to become tough and hard." and do everything you can to protect your child and find a safe place for them to grow and flourish.<br />
<br />
And if your child also has sensory issues that are also causing them to be a Pushmi Pullyu -- eager to participate but melting down from sensory onslaught when they do, gently begin to explain to them, in ways they can understand at whatever age they may be, the idea of seeking balance. Help them to learn that they can't have everything or be everything but that they can find their own middle path that lets them get the most they can of as much as they can. Help them to learn to stand strong against those who would push with threats or guilt to try to force them to step out of balance with themselves. I have learned to say no when I need to protect myself and your child can learn it, too. (And hopefully your child will not require the nearly 50 years it has taken me to learn it!)<br />
<br />
A Pushmi Pullyu is not an easy creature to be, but when the two front ends learn to co-operate, the Pushmi Pullyu can get twice as much accomplished. Being of two, conflicting natures has been stressful for me, but as I learn to find that place of balance -- a place that no one else can prescribe for me; I have to find it on my own and trust my own process -- I am coming to love the insights I gain from living with two halves pulling in opposite directions. I am coming to value who I am and where it has brought me in life.<br />
<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/17863514145708324012noreply@blogger.com5tag:blogger.com,1999:blog-2799087240760337340.post-87915830696779582602014-03-27T14:46:00.000-07:002014-03-27T14:49:36.758-07:00Night-blooming Flowers: Sudden skill acquisition and extreme context-dependence<div class="MsoNormal">
There was a graphic that went completely viral in both the
autism parent and theater communities of Facebook a while ago, which makes
occasional reappearances. It’s a
performance report note from the stage manager of a popular children’s
show. In one matinee performance,
there had been some chattering from the audience at one
point. Afterward, the stage
manager had learned from one of the teachers what the source of the commotion
had been: an autistic little boy,
who had, as far as anyone knew, never spoken before, had suddenly started
talking to the teacher sitting next to him all about what he was seeing. No one had even thought that he knew
his teacher’s name.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A couple of parents who commented were skeptical of the
account.<span style="mso-spacerun: yes;"> </span>While I resented the
incident being passed around as inspiration porn by many, it was entirely possible, I argued, that
under new and unique circumstances, a kid had displayed an ability for language
that he’d never demonstrated before. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was indignantly lectured by one mother about how autism is
a neurobiological condition that can’t be cured by the magic of theater.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But being able to do something suddenly for the first time,
or under specific circumstances, or gain in speech abilities, isn’t recovery
from autism; it’s a really common experience, if not usually that dramatic.
Autistic people can possess extreme sensitivity to environmental detail,
patterning, and circumstance, and it can affect our abilities in any given
moment.<span style="mso-spacerun: yes;"> </span>Hadn’t they ever had
something similar happen?<span style="mso-spacerun: yes;"> </span>Was this
really not a thing that non-autistic people experienced?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
They didn’t know what I was talking about.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
*</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We do gain skills
without necessarily being drilled or pushed, just in ways that might not be
apparent to observers.<span style="mso-spacerun: yes;"> </span>Just
because progress or learning aren’t being displayed to others does not mean
they aren’t happening.<span style="mso-spacerun: yes;"> </span>An ability
probably wasn’t learned or gained at the moment it was first displayed, but has
been “under construction,” internally, for a long time.<span style="mso-spacerun: yes;"> </span>Things that are intuitive and easy to
typical people can require long periods of interior fermentation and
distillation in order to develop, and then for us to feel safe or comfortable enough
to use them.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then seemingly suddenly, when the time or circumstances
are right, there they are, like a night-blooming flower.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That uncertainty about whether they will ever show
themselves doesn’t make it a miracle when they do; it means it took the time or
circumstances it took for that to happen.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve also said before that I feel that very few of my
autistic traits are, themselves, positive or negative.<span style="mso-spacerun: yes;"> </span>They’re all double-edged swords.<span style="mso-spacerun: yes;"> </span>Disabling or painful in one context,
necessary or pleasurable in a different context.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Amanda Baggs has characterized autism not as a specific set
of permanent deficits, <a href="http://youneedacat.tumblr.com/post/50454065068/about-the-way-autistic-people-put-our-skills-into" target="_blank">but as a particular way that the brain allocates cognitive resources</a>.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That an autistic person might suddenly display an ability
they’d never outwardly demonstrated before, or be able to do something under
extremely specific circumstances or specific kinds of stress that they can’t do
under typical, everyday circumstances, is neither magic nor miraculous.<span style="mso-spacerun: yes;"> </span>It’s a common aspect of being autistic,
and it’s one of my favorite parts.<span style="mso-spacerun: yes;">
</span>It’s part of how being autistic <i style="mso-bidi-font-style: normal;">works</i>
that distinct skills can develop at atypical times, and seemingly in isolation
from other aspects of development, or are usable in extremely specific contexts
when they aren’t normally.</div>
<div class="MsoNormal">
Part of presuming competence is maintaining awareness that
just because a skill has never manifested itself yet, does not mean that it
never will.<span style="mso-spacerun: yes;"> </span>And that just because
someone might, in fact, never gain some particular skill, does not mean that
they won’t gain others.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
*</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Once, in the first summer I lived in my apartment, I planted
some pots of morning glories out on my fire escape, where they could trail up
the railings. I saw their long, spiraling
buds form, and anticipated their blooming.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then something strange started happening.<span style="mso-spacerun: yes;"> </span>I would get home from work in the
afternoons, and the buds that had looked healthy and ready to burst that
morning would be withered and dead looking.<span style="mso-spacerun: yes;"> </span>I thought that somehow they were dying before they ever
bloomed.<span style="mso-spacerun: yes;"> </span>I couldn’t figure out
what could be happening to them.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On a rare day off, I went to take a book and cup of coffee
out to the fire escape to enjoy the mid-morning sun. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
All the morning glories were in gorgeous, bright pink
bloom.<span style="mso-spacerun: yes;"> </span>I realized they must only
open their buds at a certain angle or intensity of sunlight.<span style="mso-spacerun: yes;"> </span>Once they did, the flowers only lasted
for few hours before wilting.<span style="mso-spacerun: yes;"> </span>Nothing
was wrong with the plants.<span style="mso-spacerun: yes;"> </span>That
was just what they did.<span style="mso-spacerun: yes;"> </span>They
weren’t the same as marigolds or tulips.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-Moonflowers bloom only at night.</div>
<div class="MsoNormal">
-Four o’clocks bloom only in shade or late afternoon; you can trick them with
an umbrella.</div>
<div class="MsoNormal">
-Nasturtiums flower only in arid conditions; they never will if they get too
much water.</div>
<div class="MsoNormal">
-Giant corpse blossoms can bloom only once every several years, or even several
decades.<span style="mso-spacerun: yes;"> </span>That doesn’t mean they
don’t, just because someone could watch one for years and never see it happen.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
-The seeds of some native prairie plants can germinate only after
exposure to the intense heat of a wildfire.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As a kid, I didn’t pick up bike riding at the same age as
everyone else I knew.<span style="mso-spacerun: yes;"> </span>It just
didn’t work for me the way it apparently did for everyone else, and I couldn’t
stay upright without training wheels for much longer than was socially
acceptable.<span style="mso-spacerun: yes;"> </span>Discouraged and embarrassed,
I gave up and threw my bike into a corner of the garage.<span style="mso-spacerun: yes;"> </span>Months or years went by, and I didn’t
look at it or touch it or attempt to practice.<span style="mso-spacerun: yes;"> </span>I couldn’t ride a bike.<span style="mso-spacerun: yes;"> </span>That was it.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then one day when I was 8 or 9, I just felt like I probably
could.<span style="mso-spacerun: yes;"> </span>I dug my bike out of the
garage and on the very first try, started riding in perfect circles around the
driveway.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For a long time, I couldn’t summon the coordination
necessary to blow my nose.<span style="mso-spacerun: yes;"> </span>Then
one day I just could.<span style="mso-spacerun: yes;"> </span>I was
17.<span style="mso-spacerun: yes;"> </span>(I was driving before
that.<span style="mso-spacerun: yes;"> </span>I could drive before I could
blow my nose.)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One day I just understood how to make my bed.<span style="mso-spacerun: yes;"> </span>I was 31.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Gain in abilities, even when sudden and seemingly
inexplicable, is not recovery from autism; the fact that we learn very
differently from other people is intrinsic to autism, and one of those
differences seems to be, very commonly, that immense periods of internal
processing, combined with specific circumstances, can be necessary before a
skill can be externalized.</div>
<div class="MsoNormal">
<br /></div>
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<div class="MsoNormal">
There’s nothing wrong with that, nor is there anything
particularly miraculous about it.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-kuGOXYyTCgA/UzSZEYpjuTI/AAAAAAAAACY/m7x2m1d_eP8/s1600/moonflower.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-kuGOXYyTCgA/UzSZEYpjuTI/AAAAAAAAACY/m7x2m1d_eP8/s1600/moonflower.jpg" height="240" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
Unknownnoreply@blogger.com14tag:blogger.com,1999:blog-2799087240760337340.post-65428934659341732562014-03-05T00:00:00.000-08:002014-03-05T00:00:16.752-08:00Writing to ask for a job<div dir="ltr" style="text-align: left;" trbidi="on">
Yeah, I know, even the neurotypical folk don't <i>like</i> doing this. I'm fairly sure that hours spent staring at a blank word document because I don't even know how to start, followed by staring at the scaffold someone gave me having no clue how to build on it, then finally getting somewhere when a friend who gets my cognitive issues asked me questions one by one to help me build on it and then walking me through editing is more than most people need.<br />
<br />
Qualitative differences, they are a thing. Also, "I have a cognitive issue that means I can't actually do this independently" is different from "I really don't like doing this."<br />
<br />
But with help, I got it done-ish (yay!) and my friend was cool with my putting the results of the help here, so here it is.<br />
<br />
First off, here's the scaffold that's pretty much what he gave me.<br />
<br />
<blockquote class="tr_bq">
my name is flap<br />
you do research<br />
it's actually a lot like the research I wrote my final paper on.<br />
I want do research.<br />
I have done research before in US.<br />
Hire me.</blockquote>
<br />
Then he asked me a pile of questions that he knew could get me to elaborate. It's still not really a letter, but there's content now!<br />
<br />
my name is Alyssa.<br />
<br />
<blockquote class="tr_bq">
you do research and development of dye-sensitized solar cells.</blockquote>
<blockquote class="tr_bq">
it's actually a lot like the research I wrote my final paper on: quantum-dot sensitized solar cells. It uses similar properties, just using a different tiny particle.I talked about improving the efficiency of quantum dot sensitized solar cells.A lot of the research in the quantum dot ones uses the research on dye ones as a starting point!but not everything is the same. dye likes high temp, not so much quantum dots. </blockquote>
<blockquote class="tr_bq">
I want do research. SCIENCE! I want to do nanotechnology research long-term, and this is pretty much doing nanotechnology research now.<br />
I've been interested in nanotechnology since I was ten or so, reading Science News. Took longer to figure out that I can do nanotechnology research myself, but yay cool thing!<br />
Making solar cells better is specifically important because saving the environment is important.<br />
Combining "important research" and "this is just REALLY COOL" makes a good combination as far as things I want to do go. </blockquote>
<blockquote class="tr_bq">
I have done research before in US. I worked on making gold-coated liposomes. I worked under [professor] in mechanical engineering @ [school] and [another professor] in chemical engineering @ [school]. </blockquote>
<blockquote class="tr_bq">
I applied for and got a small grant from the universities undergraduate research initiative.Another undergrad is currently working on the project while I'm away.<br />
We took pictures using an electron microscope and we do seem to have shells.<br />
Um... the shells are applicable to a bunch of things potentially, including targetted cancer treatment. </blockquote>
<blockquote class="tr_bq">
I've done research before and was good at it, see above.<br />
I can read a lot and there's a lot of reading involved in doing science. I am good at numbers and computers and following written directions, and I have experience in writing the directions for experiments as well </blockquote>
<blockquote class="tr_bq">
Science is a thing I'm generally good at.<br />
Complementary language abilities is a thing, but [current program] might get pissy at me for pointing it out. (Both of us can read the relevant stuff in English or in Chinese, but English is my native language and Chinese is his, so that's potentially useful? Hire me.</blockquote>
<br />
Finally, he helped me connect and edit stuff. This is the step where I came closest to doing it myself, but I did need some help.<br />
<br />
<blockquote class="tr_bq">
Dear Professor Wang,<br />
I am writing to ask about doing research in your lab this semester regarding your work in dye-sensitized solar cells. It's in a similar area to my final paper topic from your class, improved efficiency for quantum-dot sensitized solar cells, and much of the reasearch I looked at mentioned relationships between the two. I'm interested in research within nanotechnology, and have done research before at [school] under [professor] (Mechanical Engineering) and [other professor] (Chemical Engineering.) There, I worked on growing a gold nanolayer onto liposomes and successfully applied for the undergraduate research initiative grant. The early results have been promising and I have been asked to return to their lab upon my return to [location of school]. As an experienced research assistant, I think I could be helpful in your work on nanocrystals and their applications. The fact that I am bilingual in English and Chinese may prove useful in that I can read research in either language. I hope to hear back from you soon about this research opportunity and am happy to provide references upon request.<br />
Best,<br />
Alyssa [last name]</blockquote>
The last step was to translate it into Chinese... that never actually happened... but my program made the contacts and found me another person to do research under, who I'm meeting with tomorrow compared to my writing this and about a week ago compared to when this posts.<br />
<br />
Language proficiency is not the reason this didn't get translated, by the way. I'm not 100% sure what the reason set was, but language proficiency is not the issue. I've <a href="http://yesthattoo.blogspot.com/2012/10/blog-post.html" target="_blank">translated tougher stuff before</a>, and I've <a href="http://yesthattoo.blogspot.com/2014/03/blog-post.html" target="_blank">written tougher stuff directly in Chinese</a> as well.</div>
Alyssahttp://www.blogger.com/profile/06413844178426365789noreply@blogger.com4tag:blogger.com,1999:blog-2799087240760337340.post-241538826625692622014-03-01T00:00:00.000-08:002014-03-01T00:00:15.199-08:00Languaging Differently<div dir="ltr" style="text-align: left;" trbidi="on">
Reprint from <a href="http://yesthattoo.blogspot.com/2013/11/languaging-differently_9336.html" target="_blank">Yes, That Too</a>, closely related to the previous post here.<br />
<br />
This is a thing I was thinking about, after my fun times with my teachers saying I don't use formal enough language when I write and speak in Chinese class. I'm actually way more formal in my writing and oral reports for Chinese than I ever was in classes conducted in English, since our classes have basically been “here have more formal words and here's how to use them” for the last few years. That said, I'm still nowhere near as formal in my speech as my classmates. I've been studying the language for sometimes <i>twice as long</i>, and I'm definitely more fluid with the words I'm comfortable with, but formality? Ha. That's basically not a thing.<br />
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
And here's what I realized:</div>
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
People still think I'm a good tutor and a good teacher. They do. In fact, what they usually say is that my explanation was the first one that made sense to them. Now, what's different about the way I explain stuff? Oh, wait. It's that lack of formal language again, isn't it? Yes, that's right, the <i>same thing</i> I'm getting in trouble with in my Chinese classes, the <i>same thing</i> that's gotten my essays marked down since at least the seventh grade? <i>It's what makes me a good teacher.</i></div>
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
Now why are we trying to change the weird language usage that makes me a better teacher? What is the <i>advantage</i> of changing it?</div>
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
I've heard several things from teachers who are trying to change it.</div>
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
“No one will take you seriously if you write like that.”</div>
<div style="margin-bottom: 0in;">
“It's not formal enough.”</div>
<div style="margin-bottom: 0in;">
“You need to learn to code-switch.”<br />“The words you're using are too simple.”</div>
<div style="margin-bottom: 0in;">
“Your sentences are too simple.”</div>
<div style="margin-bottom: 0in;">
“What will you do when you're writing about complicated things?”</div>
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
Here's the thing. I <i>have</i> written about complicated things. I've used the technical terms when they make more sense, and I've used simple words when they are better words, and it works. Isn't the sign of a good teacher that they can take a complicated thing and make it simpler? Make it make <i>sense</i>? It seems to me that using simpler words to the extent that we can is a better idea, if the goal is to make people understand instead of being to show off how much you know.</div>
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
My sentences aren't always simple. Sometimes they are. I don't understand why complicated is an end in it's own right, so “too simple” is something I'm just going to keep throwing out.</div>
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
I do have some ability to code-switch. It's not much of a much, but it exists. I need a <i>reason</i> to use this ability, though. I'm not going to tire myself out code-switching for no good reason.</div>
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
Formality is a social expectation. It really is. As such, if it has negligible effect (or maybe even helps) with functionality, fine, I'll go with it. When it <i>actively impedes</i> function, that's not cool. In this case, demanding formality does, in fact, actively impede function. It does this in multiple ways.</div>
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
One is that it makes it harder for me to communicate the meaning I want to communicate. Sometimes that's because the more formal word doesn't have the same shade of meaning the less formal one does. Sometimes that's because I just can't think of the more formal one. Sometimes it's because nitpicking my vocabulary slows down my ability to come up with sentences to the point that my brain is way ahead of my speaking or writing and then I lose track of what I'm thinking. This leads to The Sads.</div>
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
The other time formality causes a problem is when I'm teaching. A good teacher explains things in ways that their students will understand. That's not the same thing as explaining in the most formal way possible. In fact, my experience as a tutor and teacher tells me that those things are often opposites. The simplest, most conversational explanation is the one that my students tend to understand. At that point, yes, formality is impeding function. That means formality needs to go away.</div>
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
Finally, the first reason. “No one will take you seriously if you write like that.” Is this <i>my</i> problem? I'd argue that it's other people having a problem with the packaging of an idea and therefore ignoring the idea itself. I'd also argue that it's a load of nonsense. If it were true, I wouldn't have readers who take my writing seriously. I certainly wouldn't have had a <a href="http://yesthattoo.blogspot.com/2013/01/do-you-have-child-with-autism.html" target="_blank">blog post of mine</a> cited in an <a href="http://dsq-sds.org/article/view/3708/3226" target="_blank">academic journal</a>. I wouldn't be presenting at conferences and workshops. I wouldn't be getting pieces <a href="http://fytbook.tumblr.com/" target="_blank">accepted</a> in <a href="http://criptiques.com/" target="_blank">books</a>. I <i>am</i> getting taken seriously while writing like this. I'm getting taken seriously by people who realize that not everyone is going to write the exact same way, and that that's fine. I'm getting taken seriously by people who care more about ideas being communicated than they do about how smart I can make myself sound while in the writing.</div>
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
I really don't care how smart I can make myself sound in the writing. It's not the point. I care how well I can get the idea across. If my natural mode of speech and writing is one that works well for teaching beginners (I'm going to take beginners words for it over that of “experts” who might say it doesn't work,) I'm hanging on to that. I don't <i>want </i>to be the person who learns the fancy codes and finds that they've lost their personal voice. I don't <i>want</i> to be the person who needs to be re-taught to use words people know.</div>
<div style="margin-bottom: 0in;">
</div>
<div style="margin-bottom: 0in;">
If the way my brain tends to bounce off jargon-heavy and meaning-light writing makes it harder for me to write that way and then I keep writing to explain, I'm honestly OK with that. (I'm fine with technical terms, but when they are strung together in ways that don't mean much or when the terms themselves are too broad, my mind starts bouncing. Academic papers tend to be bad, even when I understand the concepts. Being written by someone whose first language isn't English is generally OK- some of their issues are similar to my own, even. Not always picking the word that best suits the situation, even if the meaning is right? They'll do that, and I'll do that.)</div>
</div>
Alyssahttp://www.blogger.com/profile/06413844178426365789noreply@blogger.com3tag:blogger.com,1999:blog-2799087240760337340.post-66760426863629667712014-02-26T00:00:00.000-08:002014-02-26T01:34:50.895-08:00But I can't do the thing!<div dir="ltr" style="text-align: left;" trbidi="on">
Yes, another reprint from <a href="http://yesthattoo.blogspot.com/2013/10/but-i-cant-do-thing.html" target="_blank">Yes, That Too.</a><br />
<strong><br /></strong>
<strong>Trigger Warning: Heck if I know but it's the product of me being triggered so... school stuff, generally?</strong><br />
<br />
My study abroad program has language utilization reports they want us to do. I can tell from the descriptions they've given that they think these are supposed to be easy. Like, 5 minutes of a multi-day orientation was given to this and I said then that I didn't think the questions were accessible to me. It got brushed off, because I don't know. Maybe because they can't understand how such a thing would be brain-breaking. But it is.<br />
<br />
No, asking me what a language interaction I had trouble with in the last two weeks and what resources I think I need to solve it isn't going to get you anywhere. It's just not. There is an assumption that I'll remember an interaction like that. I actually probably would, if I got reminded of the interaction, but... the question they asked is one that brain-blanks me, not one that brings up information. So I'm not going to have an interaction. If we're lucky, I'll come up with a vague general thing that I remember a teacher told me I had a problem with. In this case, what I could come up with was a teacher telling me that the language I was using is too informal. Which, um. Yeah.<br />
<br />
That's something people have been complaining about in my English essays since at least the seventh grade. I got marked down on my MCAS essay that year for overly simplistic language. I remember that. No, I don't know what <em>linguistic </em>resources will let me fix it. Frankly, I've got a <a href="http://yesthattoo.blogspot.com/2013/11/languaging-differently_9336.html" target="_blank">wee bit of a moral issue with the idea that it needs fixed</a>, since the point of language is to say stuff and people writing the way they want me to be able to tend to break my brain too. I'm actually OK with technical terms as long as they are technical terms as opposed to wide-broad-not-actually-meaning-anything buzzwords. I'm OK with complex ideas. I'm OK with complex sentences for complex ideas, generally, but when people start making stuff more complicated in the name of formal it tends to make my brain hurt.<br />
<br />
And of course, I think a good teacher is someone who can make complicated stuff understandable, not make complicated stuff sound more complicated. So yeah. Just a wee bit of a moral issue with that. Also the fact that I prefer to be able to understand my own writing, and yes, when I give in and write in the extra-complicated-formal-academic voice that people like to praise I can find myself not understanding my own writing later. Not worth it. Really not.<br />
<br />
So that's the issue that I can remember, and it's not one that I'm entirely comfortable with the idea of solving.<br />
<br />
Plus the other questions don't get along any better with my brain than that one does.<br />
<br />
And I just sent them an email saying this stuff doesn't work well with my brain. That's scary because this is a heavy-duty smart-people impressive-people-doing-impressive-things program and I'm going in and saying that yeah, the thing that you wrote to be a simple easy data collection thing is actually one of the hardest things you're asking me to do because it is breaking my brain. That's scary to admit. It's risking becoming Not A Really Real Person in their eyes and that is scary. It is a lot of scary. And yeah. Help. Except don't, because I can't deal with people right now. No, really. If we are friends on Facebook: DO NOT MESSAGE ME ABOUT THIS. IF I WANT TO TALK TO YOU ABOUT IT, I WILL START THE CONVERSATION. NO EXCEPTIONS.</div>
Alyssahttp://www.blogger.com/profile/06413844178426365789noreply@blogger.com1tag:blogger.com,1999:blog-2799087240760337340.post-72793902565831810302014-02-22T00:00:00.000-08:002014-02-22T00:00:10.031-08:00Communication, Difficult<div dir="ltr" style="text-align: left;" trbidi="on">
<a href="http://yesthattoo.blogspot.com/2013/01/communicating.html" target="_blank">Reprinted from Yes, That Too</a><br />
<br />
<div style="margin-bottom: 0.2in;">
Unless more thAutcast questions get
asked where I want to answer them long-form, this is it for those.
Last such question is <a href="https://www.facebook.com/thautcast/posts/471968596194089" target="_blank">here.</a></div>
<blockquote style="line-height: 0.18in;">
<span style="color: #333333;"><span style="font-family: lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: x-small;"><span style="background: #ffffff;">Learning
how to communicate effectively is difficult for most autistic people.
Please tell how you learned one important lesson about communication.
Explain what you learned, how you learned it, and what difference
that has made in your life. </span></span></span></span></blockquote>
I learned to talk early, with basic but grammatically correct
<i>sentences</i> at six months. I'm hyperlexic, just a bit. By
just a bit, I mean that I was shocked to find out that most people
edit their papers heavily before they turn them in? I've not edited
any of my posts here except for vocab fixes on the Chinese language
ones, adding relevant links to a few, and adding more examples to my
<a href="http://yesthattoo.blogspot.com/2012/05/functioning-labels.html" target="_blank">Functioning
Labels</a> post at one point.<br />
<br />
The thing is, those are all typed.<br />
I
do have communication issues, they just aren't the ones you might
assume.<br />
Sarcasm is a problem. I can use it. I am, in fact, very
good at <i>using</i> sarcasm, satire, irony, and all the rest. I
am not so good at detecting, well, any of them. I need sarcasm tags
in <i>face to face conversations</i>.<br />
Body language is a problem.
I can't read most people's, and they can't read mine.<br />
<br />
Euphemisms
and white lies are problems. I don't know how or when to use them,
nor do I really understand why we use them. I don't always pick up on
them when other people use them.<br />
The hardest thing, the thing that
took the longest to figure out, though, wasn't sarcasm or body
language or tone or euphemisms or white lies. There are ways to
accommodate all of them, mostly by way of giving people warning that
I don't get them. I also give people warning that I am kind of
face-blind. By kind of, I mean I didn't realize how face-blind I
really am until I took one of the quizzes. I got to keep skin tone
and eye color, but just losing hair and height was enough that I only
recognized about ONE celebrity <i>where I know who they are and
thought I knew what they looked like</i> in EIGHT.<br />
<br />
The
hardest one to figure out was the times that I would find myself with
many things I wanted to say tumbling around in my head, unable to get
any of them out. None.<br />
I had things I wanted to say, and I
couldn't say them.<br />
It took until a few months ago to figure out
what was going on.<br />
Apparently I lose speech under stress.<br />
I can
still type fine, though.<br />
<br />
Realizing that I lose speech sometimes
and finding a way around it was my biggest challenge in
communication, and it's not one that people would expect me to have.
I match up so well with the idea people have in their heads of the
"<a href="http://yesthattoo.blogspot.com/2012/09/the-high-functioning-blogger.html" target="_blank">high
functioning blogger</a>" in terms of how much I get done, and
then they find out things like "I melt down on a regular basis"
and "I lose speech at least temporarily on a regular basis"
and "I have pretty significant sensory processing issues"
and "I actually stim basically all the time and not worrying
about it is <i>how</i> I can get all the stuff done that I do."
It's actually pretty funny to watch someone realize just how like
their kids I really am, or just how like them I really am, or just
how much <i>I really am Autistic and I really am Disabled.</i> The
fact that I have found ways to accommodate myself and manage don't
make me any less either of those things, nor does the fact that I am
also gifted.</div>
Alyssahttp://www.blogger.com/profile/06413844178426365789noreply@blogger.com4tag:blogger.com,1999:blog-2799087240760337340.post-74891826813806862382014-02-19T00:00:00.000-08:002014-02-19T00:00:06.039-08:00Teaching Us To Be Silent<div dir="ltr" style="text-align: left;" trbidi="on">
<div style="margin-bottom: 0in;">
<a href="http://yesthattoo.blogspot.com/2012/12/teaching-us-to-be-silent.html" target="_blank">Reprint from Yes, That Too.</a><b><a href="http://yesthattoo.blogspot.com/2012/12/teaching-us-to-be-silent.html" target="_blank"> </a></b><br />
<br />
<b>Trigger Warning: Abuse</b> </div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
They teach us how to ask nicely, but not when it's time to <i>demand</i><span style="font-style: normal;">.</span></div>
<div style="margin-bottom: 0in;">
<span style="font-style: normal;">They
teach us how to engage, but not how, when, or why to disengage.</span></div>
<div style="margin-bottom: 0in;">
<span style="font-style: normal;">They
teach us how they </span><i>wished</i><span style="font-style: normal;">
social interaction worked, but not how it really does.</span></div>
<div style="margin-bottom: 0in;">
<span style="font-style: normal;">They
teach us how to accept, but not to decline.</span></div>
<div style="margin-bottom: 0in;">
<span style="font-style: normal;">They
teach us how not to offend, but not when we need to offend.</span></div>
<div style="margin-bottom: 0in;">
<span style="font-style: normal;">They
teach us how to act the same, but not that we shouldn't need to.</span></div>
<div style="margin-bottom: 0in;">
<span style="font-style: normal;">They
teach us how to fit in, but not how to stand apart.</span></div>
<div style="margin-bottom: 0in;">
<span style="font-style: normal;">They
teach us to be kind, but not how to respond when others aren't.</span></div>
<div style="margin-bottom: 0in;">
<span style="font-style: normal;">They
teach us how to accept, but not when to reject.</span></div>
<div style="margin-bottom: 0in;">
<span style="font-style: normal;">They
teach us the rules, but not when to break them.</span></div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
<span style="font-style: normal;">That's
how they teach us to be silent. That's how they teach us to accept
whatever abuse they may give. That's how we learn we are broken and
wrong, because we are expected to engage all the time, more than even
they are, and we simply can not do it.</span></div>
<div style="margin-bottom: 0in;">
<span style="font-style: normal;">That's what's wrong with our therapy; that's what's wrong with social skills training.</span></div>
<div style="margin-bottom: 0in;">
<span style="font-style: normal;">They are not teaching us the way people really act, but how to be invisible. </span><br />
<br />
<span style="font-style: normal;">That's not to say that all social skills classes <i>have</i> to be bad. It's a great idea when done right. It's just that almost no one does it right. Teach us <i>when</i>
to swear. Teach us what white lies are for and when to use them. Teach
us about euphemisms. Teach us how to politely decline invitations [and how to do so rudely when polite is getting ignored.] Teach
us how to say no. Teach us when to <i>demand</i>, and how to ask
questions that aren't really questions. If you're going to do it to us,
teach us how to do it back, and teach us to know when you are doing it. </span><br />
<br />
<span style="font-style: normal;">But
they don't really want to do that. They want us to be easy to handle,
easy to manage. If we can not be normal, they want us to be invisible.
They teach us to be silent, turning a wonderful idea for helping us
navigate the world into a tool to help them manage us. </span><br />
<span style="font-style: normal;">_____________________________________________________________________</span><br />
<span style="font-style: normal;">These lessons? Make it <i>harder</i> for your child to gain the skills you say you want them to have.</span></div>
</div>
Alyssahttp://www.blogger.com/profile/06413844178426365789noreply@blogger.com5tag:blogger.com,1999:blog-2799087240760337340.post-48633219455171365362014-01-12T10:37:00.002-08:002014-01-12T10:37:14.250-08:00Transitions: a problem experienced by both autistic adults and autistic children<br />
This blogger can happily say with openness, that transitions are really hard.<br />
<br />
Each every spatial change of scenery, each change of expectations, each evolution in standards for performance, all of these things cause a lot of extra stress for Autistic people.<br />
<br />
A good way to deal with transitions is to be willing to go really slowly during the beginning of one's adaptation.<br />
<br />
Another good way to deal with transitions is to try to find activities to engage in that help to refamiliarize.<br />
<br />
Some Autistic people are not satisfied by many transition rituals used in broader society, thus we sometimes carry more spread out anxiety.<br />
<br />
Anxiety and adjustment to a new place or location or situation requires constant alteration of sensory expectations.<br />
<br />
We have to get used to new levels of background loudness, to new formulae of action to help satisfy our various needs at various times.<br />
<br />
These sensory and social readjustments seem to happen much slower for people on the spectrum.<br />
<br />
I say this in order to describe the troubling difficulties of this author in transitioning out of undergraduate and into adulthood (with all the responsibilities that come with that).<br />
<br />
Thus, it is rational for autistics who are transitioning to try to keep certain things fairly similar to how they were.<br />
<br />
If the location has to change, then make some of the foods stay the same. If the clothing has to change, make other things seem familiar.<br />
<br />
Some of the most intense Autistic anxiety arrives when many changes have to be adjusted to and there is no clear way for things to remain *thinkable*. And when I say thinkable, I mean the details of one's life being able to be predicted, expected, knowable. <br /><br /> <br />
Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-2799087240760337340.post-80596417542026015572014-01-09T20:30:00.002-08:002014-01-09T20:30:56.567-08:00"If you can't get your financial aid set up, how are you smart enough for college?": an illustration of twice exceptionality.This post is going to be detailing how my strengths and weaknesses interact to make a tragicomedy of errors in regards to going to university. These events are all true, all really happened, and all happened in the past few months-most in the past week.<br />
<br />
It starts last school year, when I applied to a dual enrollment program with a university and a community college in my city. They advertise it as an easier and cheaper way to do school-you can do your lower division courses at the community college at community college prices and take your upper level courses at the university. Best of both worlds!<br />
<br />
And your financial aid? Because if you are exploring this option, money is clearly an issue? It's so easy, it will be disbursed in a lump sum still, through the institution that you're at the most!<br />
<br />
Hahahaha no that is not how it works.<br />
<br />
Making financial aid actually work? Has been a baffling process that I have no faith actually worked. There are never ending streams of one more things and paperworks and new tidbits of info that might make sense to someone but certainly aren't intuitive to me.<br />
<br />
So this term, less than a week old, has had my aid bounce back and forth between institutions, varied from "not enough for even part time at the community college" to "totally set for the term" to in between (I do not know where it is at right now, my last phone call was 3 hours ago. Supposedly it is fixed).<br />
<br />
You know that way people have of telling you that what they're telling you is simple, and if you don't understand you just cannot possibly expect to function in any domain? But without using those words? Did you know there are a lot of ways of indicating this? I do! It has been my last week.<br />
<br />
Things that I was supposed to understand and didn't:<br />
<br />
-You need to do a new co enrollment agreement every term, even if you are not switching your home institution.<br />
<br />
-Your home institution just means the place where you get your financial aid. Or maybe it means something more significant. Maybe it just means the place where you take the most credits. Oh but what those credits are matters too. But you definitely have to be 3/4 time there or your aid will be effected. You might also be selling them your soul and leasing it back from them. No one could really tell me the significance.<br />
<br />
-Regardless of how many hours you are taking, you are shit outta luck if you're trying to collect financial aid all through the community college and are taking 300 level or above courses at the university. Even if the ratio is 10:4. That is not my ratio, but if it was I'd be somewhat screwed. There is no reason for this except "we're a community college". Unless it has to do with that soul thing. Maybe they can't own the parts that have taken upper division courses?<br />
<br />
-That last thing? For some reason this is so patently obvious to everyone else that it took 8 phone calls for it to occur to anyone.<br />
<br />
-The online paperwork for the university only has "I am not doing co-enrollment this term" and "I am done registering at the community college" as options because if you are getting your aid through said college, you have to go get their form. Not the university's form.<br />
<br />
So this whole process has been really daunting, to the point where I was trying to figure out how little nutrition I could get by on for a term to avoid picking up the phone and finding out yet another teensy weensy self evident little detail that actually totally changes everything.<br />
<br />
And yes, more than one financial aid person has asked me if I am sure I am ready for university.<br />
<br />
Well. Academics are not everything even a little, but they're what you're talking about when you are talking about university. I got a 3.7 GPA last term. My in major GPA is a 3.5 or so, in the other potential major (double majoring ftw) is a 4.0.<br />
<br />
My brain may not understand the financial aid nonsense. But the things I do understand? Well, I've had profs just go with it when I assert that the minutia in one of my areas of abilities is what it is, because they aren't convinced that they understand but they trust that I do. There are all sorts of things I grok deeply even though they aren't on the syllabus of any course I have taken, because I get interested and then I go deep with my investigations. Or at least as deep as I can until I run into a paywall, a language wall, or having to do 700 pieces of paperwork and deal with a few dozen "one more thing" details.<br />
<br />
This is how twice exceptionality manifests for me. I can do the work, understand the work, but the process to pay for the privilege of doing the work is as mystifying to me as the minutiae of, oh, how epilepsy drugs work is to everyone else.<br />
<br />
I can't just apply the part of my brain that's really good at patterns or details to doing beaurocracy. That isn't possible. It's not just about being smart. It's about having the abilities called for by the task. Those are not abilities I have, even if I do have more than I need in other areas. It's not like a computer, where you can allocate memory to different partitions. The processing power is all decided all ready. If I could move it around, I wouldn't be twice exceptional. I probably wouldn't even be particularly once exceptional.<br />
<br />
"Are you prepared academically for the university?" is the wrong question here. "What supports do you need to make the process as painless as possible?" would be the right one. Both my gifts and my deficits are relevant to the issue.<br />
<br />
That's how twice exceptionality works: gifts matter. Deficits matter. What the person wants matters. Not what the weakest deficits allow. No. What I can do with my strongest strengths, with support for even my most dire weakness, that matters.<br />
<br />
...which is why I cried with relief when someone at one of the offices sat on the phone with me and went through every detail I needed, including waiting for me to do the things I could do on the computer right that second. Proper support happened. Now I can do things I am actually good at. Neurodivergent Khttp://www.blogger.com/profile/02815685510033244185noreply@blogger.com3