Looking back to to this day
From 3 years back - Basketball Game at Haas Stadium, UC Berkeley
Not gone to any games at new school, but hope to in 2023.
Joy is the serenity that comes from acceptance and letting go
Contemplation, one line a day. #MentalHealth
BioMedical Research is IMPORTANT for Autism.
BioMedical Research is IMPORTANT for Autism.
I wish people stop conflating all Autism Biomedical Research as a cure; cure being something the disability rights movement has been against. Honestly no amount of biomedical research is going to reverse disability but it can go a long way in alleviating some of its more troubling symptoms and health issues.
Reality is that a majority of a the moderate-high support autistic individuals do have significant health issues, and other behavioral issues that significantly impact their quality of life.
WE NEED solutions, including BIOMEDICAL ones and TECH ones in addition to changes in SOCIETAL MINDSET that is the main focus of the neurodiversity movement to address these issues.
Shutting down all and any biomedical research is a disservice to the autism community.
SIB's are real. 20% of autistics have SIB. Why are we not looking at SIBs at a physiological level. SIBs leave you battered and traumatized from personal experience. It is something I don't want to live with and I would gladly welcome any research on it. It's not about a CURE, its helping me life a less stressful life - my "pursuit of happiness."
How can these autistics get to the level of demanding acceptance, inclusion in education and employment that the neurodiversity movement is asking for, if the very same group is denying the very things that gives them to the platform of equity.
Why can't I have both - the biology to help with my challenges and the accommodations/inclusion of neurodiversity.
Joy is the happiness that radiates from within and touches others
Contemplation, one line a day. #MentalHealth
Light Snowfall
Snowflakes dance in the air,
Falling softly, without a care.
But to college neuroscience I must go
Blood brain barriers and biophysiology today
I did not like walking in that cold
The cold bites, the wind moans.
Goosebumps, hard to withstand.
Though it's harsh, it's also grand.
Falling softly, without a care.
But to college neuroscience I must go
Blood brain barriers and biophysiology today
I did not like walking in that cold
The cold bites, the wind moans.
Goosebumps, hard to withstand.
Though it's harsh, it's also grand.
Snow today
Another round of snow today. Just a light snowfall like a constant drizzle of rain all day. Had to go to college anyway. Had to walk from the parking lot to class and then move from one building to next for the next class. It was gloomy at 4pm and quite cold at 36 F.
Thunderstorm Haikus
Not used to getting so many severe weather alerts on phone.
Severe Thunderstorm warning.... 60 mph wind gusts. Half Dollar size Hail... 1.25 inch. Damage to Vehicle is expected. Expect wind damage to roofs, siding and trees. For your protection move to an interior room on the lowest floor of a building.
Luckily it stopped at just heavy rains with thunder and lightning. We missed the 13mph twister that devastated 50 miles of Selma, Alabama located just south of where we are.
In the meantime, dry California, which is not used to rain, is getting battered with the relentless rain deluge, wind gusts, flooding, mudslides and sinkholes with seven consecutive storms starting just before the start of 2023. Flooding is inevitable when you get 1 month worth of rain falling in one day with a cumulative effect with storm after storm. The annual wildfires and the continued drought had left behind bare hills and parched soil, which aggravate the mudslides and floods.
Climate change in action.
Autistics must not Stim
Autistics and stims. Please rethink.
Autistics MUST NOT stim.
Please rethink….
Stimming serves a purpose, its true
A coping mechanism, a way to soothe.
Calming nerves, reorganizing thoughtsA brush with Somatosensory body remapping
Engaging in stims... is quite typical for neurotypicals!!
Society accepts these stims with ease
Oh, the irony!!
... nonstop clicking of TV remote
... mindless paper doodling
... obsessive loop of tik-tok and youtube shorts
... head buried in phone when walking - accidents waiting to happen.
So should autistics be allowed to stim mindlessly too?
Au contraire, it's not always a breeze.
Stimming is exhausting, Energy consuming
A switch on repeat, an obsessive desire.
Runaway motor movements. No pause or stop
Maddening. All consuming. Overwhelming
Autistics and stims. Please rethink.
Some stimming can be beneficial, it's true.
But cross a threshold, and it becomes OCD,
The cutoff is something you need to determine.
Find balance in stimming, it's key,
To regulate emotions and bring inner peace.
Elusive Sleep
13% of autistics have sleep issues compared to just 3.7% in the general population (Burman et al., 2023). Sleep disturbances may be around initiating sleep, parasomnias, maintaining sleep, frequent nighttime awakening, unable to go back to sleep, daytime fatigue. Sleep disturbances worsen other challenges associates with autism and adds to anxiety and impulsivity.
We urgently need research that leads to translatable solutions.
Elusive Sleep.
Eyes wide open, mind in a haze
Sleep does not come, no matter how I try
Tossing and turning, pacing the floor
Thoughts racing, as the night goes on
A battle lost, sleep remains gone
The night seems endless, my mind won't compose
The hours pass, and the night wears thin
But sleep remains elusive, just won't restart
Frustration and exhaustion sink deep,
I try to relax, but my body is tense
Dreams elude me, as the night wears on
A prisoner of my thoughts, until the dawn
I'm trapped in a cycle I can't win
A new day awaits, but for now, I cannot cope.
Birth of a Star - a moment of Awe
Saw this James Webb telescope photo on FB today. My small moment of awe for today.
Birth of a Star - A Moment of Awe
In the vast expanse of space
brilliant light begins to trace.
Swirling clouds of gas and dust
birth of a star, a cosmic spark,
work of art, moment of awe
beacon of trust, a new sun born
power and heat, through space and time
At the speed of light
Illuminates the darkness, divine
reminder of the mysteries yet to unfold.
find our place, in the cosmic light
Academic Reading
Question I was asked.
Are you able to read with your eyes or do you use a reader or other device?Print vs e-copy
My fine motor means I don't have good control with turning pages, one page at a time. So I do prefer a pdf or e-copy. Advantage of electronic, you can zoom in, which is useful for those tiny numbers/labels in graphs or diagrams.
The actual reader does not matter. Use any text-speech software/reader that works for you.
For my laptop, I use Natural Reader, which can both read out PDFs as well as act as a text-speech voice for conversations; necessary for someone with very limited talking ability like me.
If you know of other text-speech or reader software for laptop/iPad/phone, please drop a comment below.
To use or not use a Reader
Using the actual reader is context dependent and mood dependent for me.
Text Heavy Material
Readers handle most text-based social science/humanities materials well.
For text heavy material, text-speech software is definitely useful in unexpected ways.
For instance, Disability Studies scholars like to use complex, almost convoluted language, which is ironical as it then becomes inaccessible to the very disabled population being discussed. In some of these papers, it can take many paras/pages to get to the point of what they are really talking about. Which can be a very impatient reading experience for someone like me. So you can let the text-speech just go on in the background and your mind will pick up the important points of what's said somewhere in there without having to listen to every word.
Science/Math Books
While text to speech software is great with humanities and a majority of social sciences, they are not as good with science/math textbooks. It can only be a supplement at best for science.
1. Mangles and Winces.
While text to speech software is great with humanities and a majority of social sciences, they are not as good with science/math textbooks. It can only be a supplement at best for science.
1. Mangles and Winces.
Calcium ions Ca+2 is "ca two plus," (which sounds like someone is choking) or "California two plus"
Na+ is "nah plus;" someone just negating their 'no' with a plus.
2. Images
2. Images
And when the text to speech encounters diagrams it wants to just rattle off any readable labels it finds, sometimes in random order, and may even skip some, which is very confusing. Not all labels are readable either.
You want to spend just that little extra time on diagrams and graphs and that needs to be done visually.
When using a reader with science and math, you may need the book in front of you when trying to read it and follow along and wince every time it messes up.
Maybe there are solutions out there that I'm yet unaware of. If you know of any, please leave a comment.
Speed of Reader Output
In general I find that the text-voice-output is too slow.
In general I find that the text-voice-output is too slow.
I like to play my read-aloud voice software anywhere from 3-5x (or greater) speed as I still find that my mind is racing faster than it, and I get impatient with its slowness (ADHD factor?).
So sometimes it just easier for me to quickly visually scan the page (with my eyes) rather than wait for the voice to play catch up. I do tend to read fast.
Is 3x-5x (or more) reader speed too fast?
I've been told in the past that a faster (3-5x) voice-speed was "too fast" for me to be able to learn.
Au contraire!
When I went to the PD Soros conference in New York last fall, I met another PD Soros fellow at Harvard Law who is also blind. His screen reader plays at 5x speed or more. He explained that he was hearing at the speed of reading with the eyes. That is his ears were acting like his eyes. Apparently, that is perfectly normal in the blind community.
I was rather relieved to know that my asking for a faster text-voice speed is not so unusual after all. And maybe reading much faster like visual scanning is not unusual either. I know my sensory system is all over the place, maybe my senses are compensating too.
Optimize Input-Output Time
While not every autistic is the same, I think it's worth exploring what makes for a more effective learning style for each person. Think of how can you optimize input-output balance with respect to time.
A slower output (due to oral motor apraxia, fine motor and other issues) does not have to translate into slower input (absorption of cognitive material). I think that's how I've been able to manage academics time-wise. My output is clumsy and slow but my input is pretty fast. Which is probably the reverse for NT peers. They type away at enviable speeds.
A slower output (due to oral motor apraxia, fine motor and other issues) does not have to translate into slower input (absorption of cognitive material). I think that's how I've been able to manage academics time-wise. My output is clumsy and slow but my input is pretty fast. Which is probably the reverse for NT peers. They type away at enviable speeds.
Focus & Attention
A caveat of course is that my ADHD and OCD's means I do tend to get easily distracted; makes me concerned as I may miss things that are important. When something interests me, I will hear every word and see every pixel and grain. But how can I listen/read/attend if a variety of OCDs is for instance, keeping my focus on that piece of lint on a student's jacket that is five feet away and which needs to be removed immediately; or my ADHD that keeps my mind keep flitting from one thought to next.
Some fellow PhD grad students mentioned recently that they like to listen to brown noise/ pink noise while they study for focus. While I've heard of white noise (which I don't like as I find it adds to more static-noises in my head), this brown and pink noise is new to me. I think its worth exploring though.
Context and Mood dependent
Autism does not look the same every hour and every day. It's not predictable what the next hour will look like. Sometimes I'm more visual, other days I'm more auditory and some days I need both. Sometimes my mind is tired and sluggish and in a brain fog mode. Lots of causes - maybe a barometric pressure change, med effects, weather, you body just not there. There are days, not much sinks in visually. A text-speech reader of books is definitely helpful in those times as a supplement to tired eyes and tired brain. It's one more modality of input which can definitely help. A slower reader speed can potentially help those times.
Context and Mood dependent
Autism does not look the same every hour and every day. It's not predictable what the next hour will look like. Sometimes I'm more visual, other days I'm more auditory and some days I need both. Sometimes my mind is tired and sluggish and in a brain fog mode. Lots of causes - maybe a barometric pressure change, med effects, weather, you body just not there. There are days, not much sinks in visually. A text-speech reader of books is definitely helpful in those times as a supplement to tired eyes and tired brain. It's one more modality of input which can definitely help. A slower reader speed can potentially help those times.
Tweak what works for you for each situation, each hour, each day.
There is a lot of tweaking and fine-tuning involved.
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Tell me more about your learning style. What works. What does not. What tools do you use? What tools do you need? What more can be done?Comment below or use the anonymous google form.
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