In limbo
Mind and body trapped in ambivalence's sensation.
Can't move forward, can't step back,
Caught in a loop of indecision, what do I lack?
OCD
Compelled to do what can't be found
Repetitive acts, a daily grind
OCD consumes, hard to unwind.
Powerful urge, the need is great
To ease the mind, to alleviate
Thoughts plague, won't go away
OCD controls, no matter what I say
Constant struggle, day by day
To keep those obsessive compulsive behaviors at bay
Can’t give in
….Must break the spin
A Highly Sensitive Person
Constant Overload
Sensory overwhelmed, a feeling of prison
Trapped in my own mind, with no friends.
Poor somatosensory body mapping
A constant confusion, a foggy haze
I struggle to understand my own body
A feeling of being lost, in a daze
Words get stuck, inside my head
Apraxic, struggles to speak
A feeling of frustration, so very unique
As talking eludes me, instead
It can be a struggle, to navigate
This world that's full of sensation
I need to find a way
… with determination
A bundle of irrational worry
Each day i wake up with dread and hurry
Fears and doubts consume, a constant flurry
Hope still flickers in internal jury
Loneliness
Empty walls surround
One big vagary
Nothing standard, fractured light in a prism.
Can we conclude then, so far…..
… no evidence in any evidence really
….no clues. What’s going on in this gallery.
inexplicable me. I continue to be one big vagary.
Disheartened
Can the sun's rays chase the gray?
Grad School challenges run deep.
Disability already a minefield
Comorbidity of ADHD puts you at higher risk for Mental Health
This article on ADHD talks about research from Bath University in the UK.
Essentially it says
- Mental health risk higher in ADHD alone > Mental Health risk in Autism alone
- The risk is higher when there are co-morbidities (ie: Autism+ADHD)
Melancholy
A tempest tossed
A tempest tossed
In a world of noise and chaos,
My mind is a storm, a tempest tossed.
The overwhelming sensation,
Meltdown, a state of frustration.
My senses heightened,
Sounds and lights, so brightened.
A cacophony of noise,
A confusion that destroys.
A feeling of impending doom.
As I try to find an escape room.
But there is no escape,
From this overwhelming state.
I am trapped in my mind,
A prisoner of my own fate.
Is there a glimmer of hope,
A lifeline to help me cope.
To regain control, and continue on
But in the middle of the meltdown, all that is long gone.
Trapped in Turmoil
Trapped in Turmoil: SIB and Meltdown
In turmoil deep, the mind doth rage,
A tempest wild, within the cage.
A meltdown fierce, the self doth harm,
A trauma deep, the soul doth alarm.
With autism's veil, the mind doth cope,
But oft it strains, and seeks to elope.
In self-injury, it finds release,
But in the wake, a heart doth cease.
Oh autism, thy ways are hard,
For those who bear thy hidden card.
Urgent call for solutions anon,
And hold us close, with open mind.
#autismsolutions
-------------------------------------
A poem on self-injurious behavior which is a reality for many autistics and is terribly traumatizing and battering for both the autistics and others around. We need solutions urgently.
See this earlier post on SIB & Suicide Ideation in Autistics.
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!
This is so true. I saw my cohort in person for orientation and then I pretty much never saw them again. This was largely because I was living and working in another city and attending classes virtually. There just wasn't the same sense of shared space & time that college provided
Doomscrolling
Came across a new term, rather a term that's been around for a while.
Doomscrolling is the act of compulsively scrolling through negative news or social media feeds, often for hours at a time, despite feeling upset or stressed by the content. The term "doomscrolling" gained popularity during the COVID-19 pandemic, as people spent more time online and were inundated with a constant stream of alarming news about the virus and its effects. This behavior can lead to feelings of anxiety, hopelessness, and helplessness, as well as difficulty sleeping and concentrating
So it became this "vicious cycle in which users find themselves get stuck in a pattern of seeking negative information no matter how bad the news is."
Satici SA, Gocet Tekin E, Deniz ME, Satici B. Doomscrolling Scale: its Association with Personality Traits, Psychological Distress, Social Media Use, and Wellbeing. Appl Res Qual Life. 2022 Oct 19:1-15. doi: 10.1007/s11482-022-10110-7. Epub ahead of print. PMID: 36275044; PMCID: PMC9580444.
SIB and Suicide Ideation
- 30% of autistics have Self-Injurious Behaviors (Soke et al., 2016)
Isn't this worth finding REAL solutions to, through autism research.
At the end of the day we also need to remember that psychotropic drugs only help to manage symptoms or dampen behavioral symptoms. So what is also needed is biomedical research into underlying issues at a physiological level that translate into affordable mainstream healthcare - its that research into gut issues, sleep issues, auto-immune issues, neuro-inflammation, movement issues etc - these are real issues that many autistics are facing - cuz if we get to the bottom of those, maybe we can reduce SIB by that much.
Insights on the Complexity of Mental Health & Disability
I was a speaker on this panel by UC Davis Mind Institute on mental health on Aug 6
Stress and Sleep - Project
My semester long project for Psych 102 - done entirely in R.
https://drive.google.com/file/d/10gyJE_BRbPnxoryNV0D2Fv0TNSS7Z8In/view?usp=sharing
Abstract:
Existing research has demonstrated a strong correlation between stress levels and sleep quality. The current study further investigated this negative correlation between sleep and stress and in addition, examined the interaction of stress caused by the current coronavirus pandemic on sleep. As expected, the first hypothesis was met, in that stress negatively predicts sleep. The data in the study showed a strong, statistically significant relationship between stress and sleep, along with strong statistical power. The second hypothesis attempted to look at the interaction role of the COVID-19 pandemic, whereby the relationship between stress and sleep was stronger (a steeper negative slope) for participants who report that a greater degree of their stress was related to the pandemic. The data collected in the study seemed to suggest that there was a reverse main effect of the pandemic; that is to say, sleep increased as a result of the pandemic, but this was not statistically signficant. In addition, the actual interaction of the pandemic stress on sleep in the current study was also not statistically significant. Recent studies such as that by Katuna and Lau (2020), have however suggested that the relaxed schedule of the pandemic lockdown have allowed for longer sleep times though there were limits to actual sleep quality due to a lack of sleep buildup from decreased physical activity.
# Introduction
Research on stress and its impact on sleep has been ongoing for a while now and the strong negative relationship between them is well established. For instance, it has been found that insomniacs had overactive cortisol levels, which is a measure of hormonal stress; cortisol levels were especially elevated at the time of sleep onset (Vgontzas et al., 2001). To underscore the importance of sleep, lack of REM sleep which helps delete the emotional component of memory is thought to contribute to PTSD (van der Helm et al., 2011). REM sleep also serves a number of functions such as housecleaning extraneous memories accumulated during the day (Crick & Mitchenson, 1983). Given the crucial role of sleep for both forgetting and learning (Walker, 2009), the role of stress as a predictor is an important factor. The current study attempted to further confirm this negative correlation between sleep and stress.In addition, this study also investigated the impact of stress caused by the current COVID-19 pandemic on sleep. Existing research, though recent due to the newness of the pandemic itself, is steadily growing. Unlike natural disasters like earthquakes and hurricanes, which tend to be localized events, the pandemic has been an unprecedented prolonged and ongoing stress event at a global level with the associated stresses over finances, employment, income, food insecurity, access to medical care, social isolation, as well as challenges of juggling family and work obligations (Morin & Carrier, 2020). Such intense and prolonged stress is bound to have an impact on sleep, especially, “at a time when healthy sleep is particularly important to cope adaptively with this crisis and uncertainty about the future” (Morrin & Carrier, 2020).
A September 2020 study by Katuna and Lau looked at the impact of COVID-19 from a sleep health perspective. They point to data such as that from the National Alliance on Mental Illness of New York City, which showed a 60% increase in calls relating to stress since the pandemic related lockdown was initiated.
At the same time, Katuna and Lau (2020) point to the more relaxed schedule of the lockdown which actually allows for, “longer sleep opportunities and total sleep time.” While it may not make much of an impact on those who enjoyed good sleep earlier, it may benefit those who had been sleep deprived due to the nature of their occupation and time spent in commuting. They do highlight however that there is less actual sleep pressure built up during the day due to the lack of physical activity which can limit improvements to actual sleep quality.
This study thus investigated both the main effect of stress on sleep as well as the interaction effect of stress induced by the pandemic on sleep.
Hypothesis 1: I hypothesize that people sleep less and stress predicts that.
Hypothesis 2: I hypothesize that there is an interaction, whereby the relationship between stress and sleep is stronger (a steeper negative slope), for participants who report that a greater degree of their stress is related to the COVID-19 pandemic.
# Methods
## Participants
Data was downloaded from Qualtrics survey software in the form of a .csv file and read into R to collect information on participants.`r nrow(responsedata)` participants were recruited through Academic Prolific. Participants were limited to those living in the United States, age range from `r min(responsedata$agr)` to `r max(responsedata$agr)`, with a mean age of `r mean(responsedata$agr)` years, and standard deviation of `r sd(responsedata$agr)`. `r sum(responsedata$gdr == 1)` were female, `r sum(responsedata$gdr == 2)` were male and `r sum(responsedata$gdr == 3)` identified as non-binary or other.
## Material
Data was collected via a Qualtrics survey. The survey was intentionally kept very simple and short to encourage maximum participation.Two existing scales were used. The first was the single item Sleep Quality Index (Snyder et al., 2018). The SQI is a 11-point likert scale and scores 0 as terrible sleep, 1-3 as poor sleep, 4-6 as fair sleep, 7-9 as good sleep and 10 as excellent sleep. In filling out the SQI, participants were asked to consider other components of sleep such as the hours of sleep, frequency of nighttime waking, ease of falling asleep, how refreshing their sleep was and, "how often they woke up earlier than they had to in the morning" (Synder et al., 2018).
Despite being a single item measure, the SQI has been found to show both validity and reliability, relative to the longer sleep questionnaires used in depression and insomnia patients (Synder et al., 2018).
The other established scale that was used was the four item Perceived Stress Scale (PSS-4) which asks for thoughts and feelings over the last month (Cohen et al., 1983). The PSS-4 uses a five-point likert scale with zero being never and four being most often. Individual line items ask, “In the last month, how often have you felt, #1 that you were unable to control the important things in your life, #2 confident about your ability to handle your personal problems, #3 that things were going your way, and #4 difficulties were piling up so high you could not overcome them" (Cohen et al., 1983). As per the scale requirements, items two and three were reverse coded, and individual scores were added up for a single score; the highest possible score of 16 indicating the maximum stress.
The PSS-4 is a well established scale that has been around for a few decades. Initially developed as a 14 item scale (PSS-14), shorter subsequent versions (PSS-10 and PSS-4) were later introduced.
An additional single item measure, "pandemic stress score;" was added to the survey in the form of a five-point likert question; namely - "How much of your stress is related to the pandemic?." The scoring was zero for "none of my stress," to four being, "all of my stress." This measure was used for lack of an existing measure as the pandemic itself is a recent global phenomena. As a result, this measure has not passed any test of validity or reliability.
The resultant survey contained a total of 8 questions, including two questions on demographics of age and gender (male, female, other).
## Procedure
This was an observational study with all data for the study collected over a twenty four hour period through Prolific Academic and with the use of the Qualtrics survey describe above.The dependent variable in this study was sleep quality which was measured by the single item SQI.
The independent variable in this study was stress, which was measured in two ways. One was via the four item PSS-4. The second was the single item "Pandemic Stress Score," created for this survey as described above.
# Data Cleaning
Some data cleaning was required. The Qualtrics survey software automatically scores data using a 1-5 score, with 1 being the lowest score and 5 being the highest. However, the two established scales used in this study, the SQI and PSS-4, use a 0-4 score, with zero being the lowest score and four the highest. Data for all three variables was therefore adjusted by one to bring them all to a 0-4 scale. A total for the PSS-4 scale was generated after reverse-coding items two and three as per the scale instructions.# Descriptives
## Means and Standard Deviations
Descriptive statistics for the variables are summarized and reported in the table below.## Tests for Normality
The Shapiro-Wilk test was run on all variables to check for normality and ggplot was used to create histograms to visually check for skewness. The R output for the Shapiro-Wilk is given below.## Test for Scale Reliability
Cronbach's Alpha was calculated for the PSS-4 scale and the R-output displayed below. Cronbach's Alpha was not calculated for the other two measures, SQI and Pandemic Stress Score, as both are single item measures.# Data analysis Plan
R [@R-base] and Papaja [@R-papaja] were used for all the analyses.To test the first hypothesis, a multiple regression type of analysis was run, which would indicate if stress (as measured by PSS-4) predicts sleep (SQI score).
To test the second hypothesis, a regression interaction model was run, to see if the relationship between sleep (SQI score) and stress (PSS-4) was especially strong if people reported that their stress is mainly related to COVID-19 (Pandemic Stress Score).
A power analysis was also run to check for effect size and power for this study.
## Libraries
The following libraries were used for the analyses:## Analysis 1: Multiple Regression Interaction
The R-output of the multiple regression interaction analysis is displayed below.## Analysis 2: Power Analysis and Effect Size
The R-output for the Power analysis is displayed below.# Data Visualization
## Plot 1: Normalcy and Skewness of the Data Variables.
Data for all three variables was also visualized in the form of histograms below.## Plot 2: A look at interaction
The output of the multiple regression interaction is further represented pictorally in Plot 1 below.# Results
The pictoral visualizations of the data (the SQI sleep score, the PSS-4 score, and Pandemic Stress Score) in the form of the histograms in Plot 1 appeared to approximate normal distributions visually. The Shapiro-Wilk test had however indicated that all three variables differ from the normal. Attempts to transform the data using log or squareroot seemed to only skew the data, so no transformation was done on the data as regressions can typically handle some level of assumption violations.Cronbach's alpha for the PSS-4 scale for this study was 0.79 which meets the acceptable threshold of 0.70 for scale reliability. This measure indicates the degree to which the set of items in the scale co-vary, relative to their sum score.
The Power analysis revealed a large effect size of 0.38 (as it above the threshold of 0.3) showing a strong relationship between the variables. The study also had strong power at 0.99, indicating that if this study was run multiple times, a statistically significant difference would be obtained 99% of the time.
Descriptive Statistics were summarized in the table in the Descriptives section. Means for the three variables PSS Score, Pandemic Stress Score and SQI score were 7.73, 1.86 and 6.53 respectively and the standard deviations 3.10, 0.91 and 6.00 respectively.
Running multiple regression interaction analysis on the data indicated that if there was no stress (PSS score or Pandemic stress score), then Sleep Quality would score at 8.89 which is ranked as "good" on the SQI scale (a score of 7 to 9 indicates good sleep quality on the SQI scale). This relationship is also evident in the Plot 2 above.
The analysis also revealed a main effect of the PSS stress score on sleep quality. That is, for every one unit increase in PSS score, the sleep quality score will decrease by 0.29. The p-value for this variable shows that there is a statistically significant relationship, such that a higher PSS score predicts lower sleep quality. The second main effect of this study seems to indicate that for every one unit increase in Pandemic stress score, the sleep quality would in fact increase by 0.29; however this relationship is not statistically significant. The model fit indicates that the PSS stress and Pandemic stress together account for 27.5% of the variation in sleep. However the interaction between PSS and Pandemic scores is not statistically significant.
# Discussion
The first hypothesis was met in that stress negatively predicts sleep. The data in the study, as is evident in Plot 2 showed a strong relationship. There is strong statistical power and effect size. The relationship between stress and sleep is a well established relationship and therefore the results were not surprising.The second hypothesis had attempted to look at the interaction role of the stress due to the COVID-19 pandemic, whereby the relationship between stress and sleep is stronger (a steeper negative slope) for participants who report that a greater degree of their stress was related to the pandemic. While the raw data seems to suggest that there was a reverse main effect of the pandemic; that is to say, sleep increased as a result of the pandemic, this relationship was not statistically significant. Recent studies such as that by Katuna and Lau (2020), have shown that the relaxed schedule of the pandemic lockdown have in fact allowed for longer sleep times though there were limits to actual sleep quality due to a lack of sleep buildup from reduced physical exercise.
The interaction of the pandemic on sleep in the current study however was not statistically significant either. This may be due to the nature of the survey question itself, which unlike the PSS and SQI, is not a scale that has statistical validity or reliability.
A future direction would be to explore this idea further with a scale that passed tests of validity and reliability and truly measures the impact of a global ongoing pandemic specific stress on sleep versus localized stress events such as an earthquake or other natural disasters.
Collaborating on Anxiety in Neurodiversity
Over the summer, I was part of a Stanford Rebuilt Project - NDGifts (Neuro diversity, Giving Individuals full team success.). It was a collaborative effort by around 72 people from across the world. It is the idea of helping employers better understand ND so that ND folks also become part of the employment landscape. I wrote the section on Anxiety as Comorbidity of the 81 page report.
Launch Event on 9/3/20 (From 0:52 mins) - on Youtube
Link to the Report: My section starts on Page 50
I actually heard about this project from another recent Berkeley graduate, Cole, who is also part of this project. It’s been an unusual summer sitting at home, with rampant cabin fever.
There were many areas that Tiffany laid out that we could get involved in and frankly I was feeling a little overwhelmed at the beginning. I already deal with a lot of anxiety and this summer of pandemic has not been kind to many of us autistics in some ways and it has felt very oppressive and suffocating.
So I thought, why not take on the topic of anxiety as a co-morbidity and write on it. Writing can be cathartic and therapeutic as well as informational for others, and I have written on mental health in autism before.
Other topics I was interested in writing about was how neurodiversity is defined, how it is represented in the media and the whole special education system which is a mess with gatekeeping at every level. Had lots of thoughts on many of these things. Of course it's absolutely unrealistic to take on writing so many. So I focused on the anxiety part. But was able to add inputs to other different areas in the meetings.
Tiffany was also super helpful in funneling a lot of research articles my way as I was trying to set up the remote login to the Berkeley library system to access research materials. So that was super helpful.
Sometimes the hardest part is to get started and Nicole was really great on that and she outlined a nice framework to work within. It was great working with Nicole.
So the section is a combination of literature review of existing research and incorporating personal experiences to give it a human angle, that there are real people at the end of it reflecting liv’d experiences.
I think mental health is something that people have not quite understood, a kind of fuzzy logic. Sometimes it seems like the newest buzzword, to be used almost like a fashion accessory, which saddens me as it dilutes the needs of those who really have to liv with it.
Everyone also seems to assume that Mental health is a stand alone condition. So if you have autism, it must preclude anxiety. I think what we are trying to say is that anxiety is a very real thing, a very real co-existing condition, a very real comorbidity of neurodivergence.
If you think about it, Mental health is inevitable after years of feeling different, that you don’t belong, and being excluded. The nature of the neurodiversity itself, whether it's autism or ADHD or dyslexia or dysgraphia, can itself be a source of anxiety as can environmental factors and societal attitudes. We go into explaining these in the report. It does not matter if the disability is very visible like in my case or invisible as in the case of many others, each has different anxieties around it.
I have both learned from and enjoyed writing this section as well as reviewing and providing feedback to other sections.
I think one of the surprising ironies of this pandemic, or rather its bright lights, is that zoom has been able to connect us to people from around the world. It was amazing to hear different perspectives across times zones and across continents. So we were zooming and working off the same google drive and it did not matter that we were literally crossing physical oceans.
As an autistic I have a huge personal stake in seeing improvements across the board for our community. I tentatively attended the first meeting and found an important area was being targeted, getting employers to understand what neurodiversity was about.
You see, you can implement all kinds of laws to mandate equitable access to employment, but laws will not translate to anything as long as employers feel uncertain and uncomfortable about what they are dealing with.
It's no use just telling employers that they need to be doing this for the greater good because everyone needs to be included. They will always find a workaround to not go into unknown employee territory if they don’t understand what accommodations can look like or that there can actually be advantages to them. Neurodiversity is a huge spectrum which can make it seem overwhelming but it can also be a spectrum of un thought of skill sets that can be harnessed.
I had another stake in this project in that some faces in the neurodiversity populations such as autistics with higher support needs, are less visible even to general society, and therefore less visible to employers as well. For instance, I’m not the image of what you imagine a college going autistic would look like. But why should individuals like me be a rarity in the college world and hence the employment world. I wanted to give a voice to this population as well, that we exist and have skills to contribute too. And we can create win-win situations.
It stands to reason therefore that as potential employers learn about neurodiversity, they will become more amenable to including all of neurodiversity in the employment arena. We can help employers get over this fear of the unknown and find out that perhaps we are all not so different after all. I believe this project is a step in expanding understanding and kind of demystifying neurodiversity.
Simple really, from my point of view as an autistic. All of us, whether abled or disabled want to be contributing members of society. We all need to wake up to something meaningful every day.