- Hari Srinivasan
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.
Regressive Autism
PlainSpeak for Lay Reader
Regressive autism, also called late-onset or acquired autism, is when a child starts losing skills they had developed, particularly in talking and interacting with others. This usually happens between 15 and 30 months old. Initially, these children might seem to be developing typically, but then they start having trouble communicating, become less social, avoid eye contact, and may show repetitive behaviors like hand-flapping or lining up toys. This change can be very upsetting for both the child and their family.
Possible Explanations for Regressive Autism
Genetic Factors: Some kids may be more likely to develop regressive autism if there is a history of autism or similar conditions in their family. This suggests that genetics might play a role.
Environmental Triggers: Certain environmental factors, such as exposure to toxins or infections, might trigger autism in children who are already at risk because of their genetics. However, the exact links are not yet clear.
Immune System Issues: Some children with regressive autism have abnormal immune responses. This means their bodies might react differently to infections or other immune challenges, which could be linked to the regression of skills.
Brain Changes: Changes in brain development and how brain cells connect with each other are being studied to understand why some children lose skills. These changes can affect how the brain processes information.
Mitochondrial Dysfunction: Mitochondria are parts of cells that produce energy. Problems with mitochondria might affect brain development and function, which could contribute to autism symptoms.
Neuronal Pruning: During normal brain development, the brain removes excess neurons and connections to work more efficiently, a process called pruning. In autism, this pruning process might not work properly. Too much pruning can lead to losing important connections, while too little can result in too many connections, both of which can disrupt normal brain function and contribute to the loss of skills seen in regressive autism.
These explanations are still being researched, and scientists are working to better understand the causes and find effective ways to support children with regressive autism and their families
2 versions of this post
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.
=======
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.
Loneliness
Factoring in disability, tends to, I think, further intensift that loneliness because as a disabled person you already were existing on the fringe socially to begin with.
Good insight from Nikka
Image Description: Blue background with text that reads: So many [grad students] feel lonely at different times and in different ways. You’re making such a big leap from undergrad where everyone is basically in rhythm with one another, to graduate school where everyone is out of sync and working solo. It's a Lot!
Responses
A book of Awe
Finally..... my copy arrived. Amazon lost my original order, this is a 2nd one.
Dacher's work is the definitive research on awe.
And my undergrad research was on awe.
Looking forward to reading.
Email please
I loved this social media post as it so relevant to autism and with the idea of Crip Time. What is Crip Time
==========
Before you summon me to a meeting or ask to get on a quick call, please please see if we can have it over email or chat (text) or a google doc?
To those who ask if I can do speaking engagements, why can’t I do calls (legitimate question) – I script my webinars & talks in advance, practise intensely and even then its nerve wracking, but I do it because I can reach a larger audience.
Picture below is that of a kindred spirit
A Brief History of the DSM and Autism
Autism Lexicon [Measures] - DSM
A Brief History of the DSM and Autism
The Diagnostic and Statistical Manual of Mental Disorders (DSM) is a critical tool used by mental health professionals worldwide to diagnose and classify mental disorders.
The Modern Era: DSM-5
DSM-5 (2013): The most recent edition introduced significant changes to the diagnosis of autism. Key updates include:
Autism Spectrum Disorder (ASD): The DSM-5 combined the previously separate diagnoses of Autistic Disorder, Asperger's Disorder, Childhood Disintegrative Disorder, and PDD-NOS into a single diagnosis: Autism Spectrum Disorder (ASD). This change reflects the understanding that these conditions are part of a single continuum with varying degrees of severity.
Two Domains: The DSM-5 criteria for ASD are based on two domains instead of three. These are:
Social Communication and Interaction: Persistent deficits in social communication and social interaction across multiple contexts.
Restricted, Repetitive Patterns of Behavior, Interests, or Activities: This includes repetitive movements, insistence on sameness, highly restricted interests, and hyper- or hypo-reactivity to sensory input.
Severity Levels: The DSM-5 includes severity levels to indicate the level of support needed: Level 1 (requiring support), Level 2 (requiring substantial support), and Level 3 (requiring very substantial support).
Specifiers and Comorbidities: The DSM-5 allows for specifiers to provide additional detail about the presentation of ASD, such as the presence of intellectual or language impairments, and acknowledges common comorbidities like anxiety, depression, and ADHD.
Refining the Diagnosis: DSM-IV and DSM-IV-TR
DSM-IV (1994): This edition further refined the classification of autism under Pervasive Developmental Disorders, which included Autistic Disorder, Asperger's Disorder, Rett's Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). This allowed for greater differentiation among various forms of autism.
DSM-IV-TR (2000): The text revision did not significantly change the criteria but provided updated information and clarified diagnostic guidelines.
The Emergence of Autism: DSM-III and DSM-III-R
DSM-III (1980): This edition marked a significant shift by introducing "Infantile Autism" as a distinct category under Pervasive Developmental Disorders (PDD). This was the first time autism was recognized as separate from schizophrenia.
DSM-III-R (1987): The revised edition expanded the criteria and changed the term to "Autistic Disorder," providing more specific diagnostic criteria and acknowledging a broader range of symptoms.
The Early Years: DSM-I and DSM-II
DSM-I (1952): The first edition of the DSM did not include autism. At the time, autism was not widely recognized as a distinct condition.
DSM-II (1968): The second edition included a diagnosis of "schizophrenic reaction, childhood type," reflecting the early belief that autism was related to childhood schizophrenia.
Subscribe to:
Posts (Atom)