#also my sensory issues were having a field day today it was lovely /s it was Hell

[titan-god-helios]

my positivity posts are oftentimes for others, yes. of course they are. but they are also for me.

today i was really struggling with my symptoms - npd, autism, adhd - you name a symptom from them, i was probably struggling with it. it was Not fun to say the least.

i love my point of view on the world. i really do. i wouldn't change anything about my brain in terms of my neurodivergencies even if i could because it makes me who i am in part. but i do have rough days just like any other person with disabilities or even without. please don't feel alone if you have a bad day. shit hits the fan sometimes and that's okay. i'm with you, as are many others <3

[autistic-answers]

Hi. I'm a recently diagnosed 26-year old autistic woman. There seems to be pretty widespread agreement in the autistic community that it's bad to want a cure, but I kinda don't get it? As far as I can tell, autism only contributes negatives to my life. I would love to get rid of the sensory issues, the executive function issues, and the trouble understanding people. I get that it may be impractical to find a cure, but if it weren't, why is it bad to want one?

trigger warning for ableism, eugenics, genocide

I understand.

Autism is a real disability. Some things truly are harder for us. Some things we can’t do. It’s okay to be frustrated by this. Many autistic people sometimes wish that they were not autistic.

Let’s talk about how autism works for a minute. Autism is caused by a “supercharged brain,” with more neural connections and activity (at least, if I am interpreting the research correctly). It is hardwired into the structure of your brain.

You couldn’t remove autism from your brain without ripping it apart. There’s no one “autism part” of your brain. It’s everywhere. It’s deeply ingrained.

There are 2 types of autism cures that people talk about:

Fake “cures” sold by scammers (e.g. Miracle Mineral Solution), which may be useless, harmful, or potentially deadly

Eugenic cure (creating a test for autism, testing fetuses for autism, and aborting the fetuses that test positive)

(The eugenics movement around WWII posed two more solutions: forced sterilization of disabled people, or killing disabled people, which Hitler did. Nowadays we don’t see many people advocating for these.)

A world without autism would be a world in which you and I are either dead or never given a chance to live.

Realistically speaking... you were born autistic, and you will die autistic. There is no magic pill to ravage your brain and destroy its structure, as that would tend to kill you.

Will humans someday learn how to change the intricate structure of the brain without destroying it? Maybe. I’m not a scientist. But I don’t think we should pin our hopes on a possibility that is unlikely to happen in our lifetimes, and could be very dangerous.

Now let’s talk about attitudes about autism.

Society tends to see autism in a deeply negative light. This isn’t an accident; society is inherently ableist and we have groups like Autism Speaks working to keep it that way.

Ever heard of the social model of disability? It’s the idea that disability is caused by society, not by inability. I always like to describe it using my glasses.

My eyesight is not great. With my eyes, I can’t read clocks, signs, even these words on the screen. My eyes are less capable. There are things my eyes can’t do.

And you know what? None of that matters! I have these magical things called glasses. They level the playing field. I have exactly the same opportunities as my friends with 20/20 vision.

Poor vision is a difference in ability that society accommodates.

Autism is not.

What if nobody paid attention to your stimming because they considered it normal? What if the world was designed to eliminate painful sensory stimuli, and to provide opportunities for sensory seekers to get their needs met? What if meltdowns and shutdowns were seen as normal, and there were quiet rooms in every building where you could go to calm down? What if honesty about one’s feelings were more common? Autism might not be such a big deal then, huh?

The problem isn’t that you were born different. The problem is that society does not adequately support your differences. This lack of support is what defines a disability.

Besides, not all your differences are deficits. Some of these strengths may sound like you:

Enhanced pattern recognition

Focused special interests

Loyalty

Better observation skills

Helpfulness towards other

Superior long-term memory

...and that’s just the beginning. Check out this article for even more.

I’d also like you to read the article “How to Accept Your Autism.” Heck, bookmark it. You shouldn’t have to go through life hating the way you are. Autistic people can be wonderful, capable, caring people. Redefine what success means for you, and work towards goals that will improve your happiness.

(”Being more neurotypical” is a garbage goal. Please take out the trash. You are only going to be sadder if you spend your time comparing yourself to others.)

Here are some example goals that are really good for you:

Spend time with my special interest(s) each day

Hang out with people who make me happy

Eat more fruits and vegetables

Get better at recognizing sensory overload, and taking breaks to keep it from getting worse

Buying and using some great stim toys

Writing down 3 good things that happened today before going to bed

You are good enough the way you are. You are not bad for being autistic. Please stop looking down on yourself. You are worth so much more.

[wellinformedmama-blog]

Wait, what? (Vol. I)

One of the most confusing parts of parenthood is that we have to navigate several professional worlds outside our own to gain access to what our children may need: educational, medical, health, legal... it’s enough to make you go home and crack open a Bota Box.

Here’s a handy primer of jargon and acronyms (we special ed teachers especially LOVE jargon, and I apologize on my people’s behalf). Bookmark this one and remember that language should NEVER be a barrier in your involvement in decision making for your child. An additional rule of thumb: please never be afraid to ask what something means. You don’t look dumb and you aren’t bothering anyone; you sound mature and curious. Promise.

THE WELL INFORMED MAMA’S GLOSSARY, VOL. I (504 – A)

504 Plan: Section 504 is a federal law that prohibits discrimination and provides for accommodations for any documented disability which affects a life function. Sometimes this is a very good idea, indeed; sometimes, it’s a consolation prize when a Team decides against an IEP. It does not have the “specialized instruction required” piece of an IEP. As in: “Johnny’s 504 gives him extended time on assessments because of his processing speed.”

AAC: Augmentative and Alternative Communication – This includes any alternative means to oral communication, namely speech devices (aligning visuals to “speak” from a computer, often handheld) and PECS (picture communication – more to follow on that one for sure). We see this most often in autism and in apraxia. This is a huge topic but please remember that taking away someone’s “talker” (speech device) is the same as covering a speaking person’s mouth with tape. Not OK. As in: “My son used his AAC device to request he stay home from school and watch Octonauts.”

ABA: Applied Behavior Analysis - An evidence based, systematic, frequent therapy that individuals with autism (or anyone who wants to modify behavior or increase communication) may access. The “client” is exposed to programs that build tolerance, add desirable behaviors, or decrease unsafe or nonfunctional behaviors, for example. It’s the only recognized “treatment” for autism and is mandated by law to be covered by insurance (thanks, Autism Speaks). As in: “Sorry I can’t make it to playgroup, we have ABA today. And tomorrow. And the next day.”

ABS: Adaptive Behavior Scale - aka “The Vineland” - This is the assessment your Early Intervention specialist busts out to rank and file your baby; a necessary evil I suppose. They use observation, interaction using specifically mapped out questions/tasks, and talking to mom and dad to score your little one in four “domains” (skill areas): Communication, Daily Living Skills, Socialization, and Motor Skills. As in: “Bobby didn’t qualify for EI this year because her scores on the ABS were typical.”

Accommodations: A change in the way something is presented (presentation, time or setting, response) that does not change the intention of what is being taught. In other words, it changes how we teach, not what we teach. Good accommodations level the playing field and are NOT an advantage. Some are universal (or should be) and some need to be in an IEP or 504 plan. As in: “If these gen ed teachers don’t give Sally her accommodations on her quiz again, I’m going to lose my shit.” 

Advocate: 1. One who does her homework in order to be the voice of someone she loves. 2. Someone we pay when we are too exhausted or enraged to carry on effectively. As in: “That girl advocates like a mother.”

ADHD: Attention Deficit Hyperactivity Disorder – this used to be either ADD or ADHD; now it’s all officially ADHD and then you get a “type” as a bonus prize – hyperactive, inattentive, or combined. In Massachusetts, for example, ADHD is actually listed under health impairment on the IEP as a disability category, and you really want a pediatrician or psychologist to deliver this diagnosis even with school-based testing (more on that later). Kids with ADHD are among my favorite humans: buzzy, busy, dreamy, kinetic, original. They need help. That’s fine, but you’ll often find they’re brilliant, too. As in: “That kid with ADHD in Sally’s class sits on a yoga ball instead of a chair.”

APE: Adapted Physical Education – Adapted or modified PE/gym, including the use of assistive equipment or a different curriculum, so that a student with a gross motor disability or a developmental delay can take PE. There are different levels of qualifications to teach APE and how it all works varies from state to state. I’m learning more about this myself right now. As in: “We may need to put APE in his IEP.”

Apraxia: Apraxia of Speech – This is a disorder in which the brain sends incomplete signals to the mechanical parts of the body that “do the talking.” Apraxia has no bearing on cognitive capacity (intelligence) so always assume competence when interacting with a person with apraxia. Some will move on from apraxia with intensive speech therapy; some will not. Many will end up seeking AAC. As in: “A child with apraxia still has something to say.”

Articulation: aka “artic” – The understandability or clarity of speech. Completely separate from receptive language. May include consonant confusion, dropped syllables, lisps, or mumbling. Many kids with speech delays who learn to speak later than is typical, and kids with frequent ear infections, have artic issues. As in: “Henry’s articulation is a mess, but his vocab is on point.”

ASD: Autism Spectrum Disorder(s) - This the formal name for an autism diagnosis in the official medical handbook DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition), which saw big changes in 2013. (For the record, I take issue with “disorder,” but I’ll get into that later.) It covers a wide range of presentations of autism, a developmental and neurological difference, that used to be differentiated into categories like PDD-NOS (Pervasive Developmental Delay - Not Otherwise Specified in very young children) and Asperger’s (now classified as “high functioning autism” - also problematic, but that’s that). Side note – autistic is not a dirty word or dehumanizing descriptor, and one instance where people-first language is not a must. As in: “My ASD/autistic kiddo ate a vegetable this one time.” Now, importantly, in education, autism does not apply as a disability category if a child’s educational performance is adversely affected primarily because the child has an emotional disturbance, but a mental illness can be co-morbid with autism. (Confused? That’s OK. I got you. Stay tuned.)

ASL: American Sign Language - its own language and culture for a subset of deaf Americans; the signs are also used by some in the nonverbal community to communicate, and sometimes simplified for little ones. Signing in infancy and toddlerhood can help prompt language later on. As in: “Noah signs ‘more’ when we tickle him because he is an adorable baby-god.”

Asperger’s Syndrome: The name for a specific type of autism that medical professionals now call “high functioning autism.” This one is chock full of problematic assumptions about really cool, deeply neurodiverse and aware individuals. Many are verbal, but not all, and many feel challenged by social nuances or other communication demands. It may also encompass sensory sensitivities or executive functioning deficits. Or not. Many proudly call themselves “Aspies” and were diagnosed prior to the 2013 DSM-5 update. As in: “Will Big Bang Theory ever tell us outright if Sheldon has Asperger’s?”

AT: Assistive Technology - Any tool, electronic device or hardware, or any software, that helps a student access learning by removing barriers to access. Assistive tech includes communication devices, speech to text and text to speech programs, word prediction software, simply using a Chromebook to type, using an iPad or other tablet to submit work, audiobooks from Learning Ally, and much more. The possibilities are exciting, and can be a little tricky, too. You can request an AT evaluation from a public school just like any other assessment (tip: say eval and not consult). As in: “Hank’s plan has assistive tech. He needs to turn in his worksheets digitally or no one can read his handwriting.”

Auditory Processing Disorder: FYI, nobody really says “APD,” they say “auditory processing.” May also be called “Central Auditory Processing Disorder,” and then we do frequently use CAPD as an acronym. Anyhoo, this is a hearing issue that affects the way kids experience the world and learn, because it makes processing auditory information very challenging. They can hear, but have trouble telling the difference between sounds. Requires speech therapy and sometimes seeing an audiologist for medical intervention. Can frequently be mislabeled as ADHD. As in: “Billy’s not being fresh; he’s not following the conversation because he has auditory processing disorder.”

To be continued…

[soyosauce]

Suppressing Society In The Fortunate Fall

“In print news your job is to know things about others, you peer out at the world through an arrow slit. In telepresence you are known. If I'd still been writing for a newspaper—if there still were newspapers—I could have forgotten...”

In 1996 Raphael Carter wrote The Fortunate Fall. For perspective, Neuromancer came out only 12 years previous and this book is already placed squarely in post-cyberpunk. Normally I'd scoff a little at that..but I have to say that is more of an acknowledgment of this work than the post-modern call to kill the genre from the onset of its birth (by the very people who wrote in the field no less). For reference, Trouble and her Friends came out only 2 years previous and I would not call that post-cyberpunk. It's also very hard to review because of the structure and the end of the book.

Maya tells her story as though the reader is an audience consuming a story by her with prior knowledge of an important historical event, or at least an extremely newsworthy one; to the point that it seems assumed the general populace or consumer of this knows of it, at least. And they are getting the "real" truth by reading it rather than getting it in another, futuristic format like moistdisk, opticube, dryROM, where the whole truth was not disclosed to the consumer.

“...you can't just break through a person's defenses like that; the defenses are a part of the person, they are the person. It's our nature to have hidden depths. It's like...skinning a frog and saying, 'Now I understand this frog, because I've seen what's inside it.' But when you skin it, it dies. You haven't understood a frog, you've understood a corpse.”  In the 24th-century Maya is what is called a "telepresence." She is cyberized to not only report the news but to almost become the news. All of her is broadcasted; her thoughts, memories, feelings—all of it goes out and is consumed by the audience. Because of this massive sensory output, all telepresence have a screener; post-production happens on the fly as it goes out over the net. Only the memories and thoughts that play well with the story actually ever make it to the audience. The screener, however, consumes all of it.

When Maya's screener falls in love with her after imbibing essentially everything (emotions, both past and present memories, etc.) about her while broadcasting a story to the world, things start to really get interesting. 

“You think we have a connection because of all the things you've sucked out of my mind by screening, but that isn't real. Trust comes when you've worked with someone for years; it doesn't speed up just because you can think fast, and it doesn't materialize when you stick a cable in someone's head. What you get from screening me isn't friendship, it's data. We're strangers.”

Through her perspective we learn of the world, we learn she's a criminal and has a suppressor chip in her head that stops her from feeling any strong emotions for other people, and that she's got a criminal record for this. Ostensibly, she doesn't feel the same as everyone else around her but always seems more human (or humanized by the narrative); often reading as very endearing to me because she's got this disconnect with herself and others that are all too relatable in this day and age. Also of note, cognitive dissonance is exceptionally well executed throughout this fiction.

Maya's recounting is largely of her big break, the scoop of a lifetime, the last whale to ever exist, if it's real; and whether it's true or not, because of the nature of how the narrative is structured, makes a compelling read that ends up being largely subjective to the reader.

Dissidents like Maya, as we learn, are literally suppressed with chips and the state is cold, fascist, and mechanical; evocative of late 80's fearfulness of technology but also clearly evocative of Nazi Germany and fascism, in general.  This future has the cyberpunk action you'd expect sure, but the technical aspects are really well done compared to most first wave cyberpunk; Raphael seems to have had a better understanding of technology, took the first wave template, and used it to great effect here. This world is very rich. Personality and technology aside, the plausibility of it is scary because of the bigotry so rampant these days. This nihilistic future the genre often depicts also has, this time, a laser focus. An unabashed, condemnation brought with an intensity and precision I've rarely read. The cultural psyche in which the major population has in their minds regarding their view of individual citizens gender identity and proclivity toward tribalism is still reflective of where we are today.

“The mind has doors...even as the body does. And when you drill new holes, you tap old hungers.” The prose are beautiful from the very first page to the end of the book. There are multiple themes reminiscent of 1st wave that is done so much better. Technology keeping us further apart yet connecting us, what that would do to our relationships is eerily on point for a book that predates my own ability to get Internet access.  It's a short read, it's compelling and relevant. It's also worth noting this was the first and only debut of the author who refused to be associated with any gender at the time of writing. Part of what makes Maya's story so riveting is, perhaps, this earnest expression of self in the text. There is no clear villain in the story. Maya herself is never untarnished and sometimes exemplifies the biases that a population internalizes, made even more complicated because of by her own omission, she is the one recanting her story, without the benefits of future technology where people may know the truth of things because they would also have the context of her emotions, feeling them as they consumed the story.

“...it changes the central fact of the human condition: that each of us lives behind one set of eyes, and not another; that our own pain is an agony, and another's pain only an abstraction we believe in by an act of faith. It makes impossible all the sins of locality, all the errors that arise from being prisoned in one body and no other--as racism, sexism, classism, and of course and especially nationalism.”

The intersectional characters explore and bring out different aspects of Maya and the technology too, is a vehicle for her exploration, limiting her and governing her. Effecting her years later from its inception. Her own will is literally stifled when she is a camera and therefore the lens from which people perceive the entirety of the story though, so much so that at one point, the audience will not even allow her to blink because they are captivated by what she sees.

“I'd caught what cameras call an updraft: just as the viewers got over the first rush of interest, others smelled the excitement and tuned in. The surprise of the newcomers strengthened the scent, attracting still more people, in a spiral that could make the feedback escalate out of control. Wave upon wave of astonishment crashed through me. I tried to look down, but the curiosity of millions forced my head back up. I stood there staring at the whale like someone forced to look into the sun, unable to turn away, though my mind cringed from the sight and my eyes were burning. It was not just an updraft, but riptide: feedback so strong that it flooded out my own emotions and derailed my thoughts. The audience grew so large and so greedy that it wouldn't even let me blink.” The actual historical truth and alteration of media coverage and news is on trial via the actual job of being a telepresence and what it entails and is demanded by the population. Hint: it's not to be a well-educated population so that they can make proper decisions voting anymore (nor is it now, any longer). Its fascinating and the relationship to our media is very well articulated in a very nuanced and deft commentary on a lot of broad sociological issues.  This book came across to me as very thoughtful, often insightful; always beautiful, filled with prose. The Summer Prince was a similar read for me, I know I will reread this quite a few times. Check out some of the lifts from the book I took to see if it's your style, for me it was well beyond what I was hoping for. 

“Feel no regret for roses, autumn too has its delights...How could she say that? Didn't she see that for us there could never be autumn, that we could never sit, as anyone else could sit, beside the fire all day on Sundays in November; that September's leaves, that fall for man and beast alike, were not our leaves to walk in; that October storms would never find us sharing an umbrella? The love of spring had thrived on wine and candles; now in the August of our lives, we needed newspapers and comfortable chairs. But it was impossible. No autumn--only a cold wind that blew through our summer, freezing the leaves in their places before they could motley and fall.”