Hindsight is 2020

This doc is a work in progress as I try to trackback the far -from-ordinary year we've been in. Most of the year ended up being dominated by this microscopic virus which suddenly changed all that we took for granted in the world around us letting us witness both the worst of times and the best of humankind. And if I don't talk about the political landscape - that's intentional. It's too emotion for the mind to handle.

January

Jan 1, 2020 was the dawn of a new decade, a year where this century would leave its teen years and enter into the heady years of the 20s. I even wrote a poem for 2020 and another one Daily Cal Renaissance Man for the Daily Cal.

I'd been very excited about the courses I was to take in Spring especially Human Happiness. I had heard Professor Dacher Keltner speak during my Golden Bear Orientation and had waited for the opportunity to take this course. I'd even done an interview with him for the Daily Cal (Towards a Life of Meaning). And what a terrific course it turned out to be. I was Back in Wheeler Hall, my fav lecture hall covering topics one does not associate with academics - awe, gratitude, empathy. I was in total awe. Even got a shoutout by Prof Keltner during one lecture which was thrilling.

Discussion sections were in Dwinelle Hall on Thursdays from 5 to 6pm. As I stepped out of Dwinelle Hall after the discussion section, I would be greeted by the music of the Campanile, playing its concert. It was truly Happiness happens at Six. It was going to be another great year.

I was taking a Business Class for the first time at Haas Business School.

I'd finished the CITI training required by the IRB for research with human subjects and joined Prof Harvey's Lab, Rhe Golden Bear Mood and Sleep Research Clinic as an RA. Back also at the RadMad Disability Lab, teaching the Autism Decal and being on the board of SpectrumAtCal.

February

My family and I, all came down with a bad case of the flu early Feb and were quite sick for over one after the other. One has to wonder if we had a version of covid that time itself.

Feb 3, I was invite to join the ASAN board.

My birthday falls in February. I got to both celebrate with the weekender team and also with my family at an SF restaurant. Little did I know that would be my last restaurant outing for the year.
The coronavirus had started making some waves and uneasiness was creeping into the air. At my SpectrumAtCal meetings one of the other board members mentioned how worried she was about her family and the situation in China. But it was still a far away event in the minds of people living here.

March

Mar 5: I presented live at UCSF CME 19th Annual Dev Disabilities Conf. A Growth Mindset - Reimagining Possibilities for Minimally Speaking Autistics . I remember being told to be very careful not to touch anything, shake hands and did not spend a moment longer than necessary at the conference site.

The coronavirus lockdown "Shelter-At-Home" went into full swing right after. Students were asked to go home and campuses started shutting down.

April

Education transitioned to a world of boxed figures on a laptop screen. Students and instructors both struggled to understand this new mode of instruction.

How did I cope?

By writing about the Pandemic for the Daily Cal. #1 A Chilling Waiting Game #2 The Real Social Distancing.
Discussing the impact of Covid-19 on the Disability Community at Crip Camp Conversations 3 (along with the late Stacey Park)

Cole (Current President of the student body, Spectrum and Cal) and I worked on interviewing candidates for the AY 20-21 board position including that of President. While I had never actively sought the role of President of Spectrum, I somehow I found myself as its first nonspeaking President for the upcoming year.

A silver lining: Carbon emissions dropped dramatically across the world. Animals were rediscovering terrain they had been driven out of before. Nature seemed to be coming alive.

May

May brought the "shelter-at-home" finals exams but no relief with respect to the coronavirus.
My grades: Still hanging onto that 4.0 GPA.

June

In the larger world Black Lives Matter movement gathered momentum with the protests against police brutality against Blacks. A memorial at the end of my street to the fallen bears testimony.

I found myself busy with other things too. I was attending the 13 week Virtual Crip Camp which was such an interesting experience each week. There were even after parties.

I was in a Stanford Neurodiversity Design Workshop.

I was part of a Supported Decision Making Focus group.

I kept writing for the Daily Cal: Fixed

July

Jul 17: I got the chance to co-moderate a conversation with the one and only Judy Heumann on AAC, disability policy, activism, and much more. AAC Users chat with Disability Rights Legend, Judy Heumann

Articles in the Daily Cal: #1Authentic Representation in Media #2 Superfest Shorts

July 26. Quite the biggest surprise of my life, I think. I got a mention on President Obama's Instagram, that too on the 30th anniversary of the Americans with Disabilities Act.

August

8/13: I presented at the UCSB Disability Studies Initiative Summer Speaker Series. My presentation titled Potential and Possibities through a Disability Justice Lens can be seen at the link.

8/27: Just before college reopened I was in a Coronavirus Information Series with the Autism Society of America in a conversation with Chris Banks, President of ASA. College Advocacy and Beyond - Autism Society of America

I start an internship with NeuroNav.

Articles in the Daily Cal: #1ADA in Color , #2 Disability Visibility, ,

The fall semester at college was to be all online. To be frank, I was getting quite zoom fatigued already.

My fifth semester leading the Autism DeCal at UC Berkeley. All remote this time. The classes were to be 2 hours long. So more lecture content was introduced.

Even before its first formal board meeting, Spectrum at Cal was participating in the Mental Health Week events with 2 events of our own "Autistics Belong, An Intro to Spectrum" and "How to be an ally to Neurodivergents". More zoom meetings of course.

September

California went through another year of crazy wildfires. Last year we were only affected by the smoke with a blanket of toxic air descending on us form fires up north. This year fires were close to home - a lot of places within the Bay Area evacuated. And with it the toxic air.

Sep 9: Spectrum at Cal first Board Meeting for the semester.

I co-authored this section from the Stanford Rebuild Project Anxiety as Comorbidity in Neurodiversity which I had started towards the end of summer.

Invited to be part of a Delphi panel by AASPIRE for an AutPROM Toolbox - a set of Patient-Reported Outcome Measures that can be used to evaluate the effectiveness of services for autistic adults. What I enjoyed about this ex which ran through December was that it ran parallel to my Research Methods course which discussed the theoretical and statistical aspects of scale creation, so it was like seeing theory and real life application unfold at the same time. These are scales you read about in Psychology and I got see and comment on 50 of them.

DeStigmatizing Autism: Conversation with Berkeley Seniors on their "Spilling the Cha Podcast" - where Eli and I discuss Spectrum StudentOrg , the Autism Decal and living with Autism.
Articles in the Daily Californian: The Social Dilemma.

Articles in the NeuroNav Newsletter # Silver Linings & Creative Workarounds # NeuroNav Launches SDP, # Meet Your Navigator Sabrina Kappe # The Making of a Social Impact Organization

October:

SpectrumAtCal held its own Black Autistic Lives Matter event.

I presented at the Stanford Neurodiversity Summit. Hari As Possibility: College Track.
October is Disability Awareness Month and Daily Cal came out with their first every Disability Special Issue. Quite ironic given that UC Berkeley is considered the birthplace of the disability rights movement. But really it better late than never and I'm so happy I was able to really get this issue off the ground and play a huge role in it besides writing 2 pieces for it.

Articles in the Daily Californian #1 Born into the ADA. # This is our Campus too. Disability in Higher Ed #3 Blackness, Blindness and Audio Description.

Articles in NeuroNav Newsletter #1 Vote because you can, vote because you should #2 The Future of a very tall very Berry Hibiscus #3 Designing Tools & Training for Independent Faciltators

Somewhere in between were interesting academic courses, midterms and two projects.

November

The year seemed to be rushing towards an end even as the turmoil of the political landscape was mentally stressing and endlessly exhausting.

A busy month with three personal events and a video

Transitions to Adulthood - ASAN Gala Panel

Log Kya Kahenge (What will people say!) - Abelism in the South Asian Community
ACL Panel. A cross-group campus event.

A Video on Why I vote for Disability Rights CA.

A fever pitch buildup to the Elections.

Articles in the NeuroNav Newsletter #1 The Importance of Gratitude #2 Love Each Other and wear a Mask

Spectrum at Cal held its acceptance week with a Research Panel and a Policy Panel.

December

Dec 2: Prof. Victor Pineda said he'd nominated me to be on the Doha Debates show - how can you turn down a request like that. This year Doha Debates with host Nelufar Hedayat, was running a #DearWorldLive series addressing critical issues around the globe. The Disability Justice Special on Dear World Live was on Dec 2, UN International Persons with Disability Day. I was the student voice asking questions of the amazing Judy Heumann and Haben Girma

Doha Debates also asked me for a separate message for World Disability Day. Here is my message on Inclusion and Belonging.

Dec 3: The Opportunity of Education - Speaker at Neurodiversity: A Paradigm Shift, Conf by University College, Dublin, Ireland (video not up yet)

Two Projects due. For my stigma & prejudice class and one to be done all in R for my Statistics Class.

I'm super proud of all that SpectrumAtCal has been able to accomplish this semester despite it being a remote semester. We also kicked off a new Peer-to-Peer Mentorship program by partnering with WeEmbrace amongst other things.

Final exams: Yes!! with the 4.0 GPA intact. I love my courses at Cal.

Dec 22: I play host with guest, ASA CEO, Chris Banks for Autism Society of America's Coronavirus Information Series Year End Recap.

Covid: US/World , Cases 18.3K/77.9 Deaths 323K/1.71M

The elections are over but why still so much uncertainty.

Mentally it has been a rough year. I have felt that I may have regressed in some areas that are more obvious and in ways I am not quite able to define.

In a way I'm glad I had a lot of activities and work to mentally occupy my mind, there have been some amazing silver linings for me this year, so I can't say that 2020 has been a total wash.

A Chat with Chris Banks of Autism Society

From:

https://extendatouch.com/blog/1225-2/?category_name=autism

Text reads

CORONAVIRUS INFORMATION SERIES: An exceptional interview about Hari Srinivasan

Watch this captivating and inspiring interview: https://bit.ly/3aOijEx CORONAVIRUS INFORMATION SERIES: An exceptional interview hosted by Self-Advocate and Activist, Hari Srinivasin and Autism Society CEO, Christopher Banks.

Hari Srinivasan is a minimally-speaking autistic who types to communicate. He learned to type and communicate only at age 13.

The ability to communicate opened up access to mainstream education and he graduated as valedictorian from his high school.

Srinivasan is currently pursuing psychology at UC Berkeley with a minor in Disability Studies. Visit Autism Society of America for more information: https://www.autism-society.org/

In Search of My Promised Land

An early holiday gift from my dad with this message.

"A Gift to the Greatest Son who is finding his own Promised Land"

Can't wait to start reading.

ASAN Year End

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.

ASA Coronavirus Information Series Year End Impact

I played Host with guest, ASA CEO, Chris Banks

Event Recording at

https://www.facebook.com/AutismSociety/videos/420452235766313

Neuro Nav

NeuroNav is in the Self-Determination Space. Got to do an internship there from end Jul 2020

Reflections https://www.neuronav.org/post/reflections-on-2020-goals-for-2021

Party with a Plan https://www.neuronav.org/post/party-with-a-plan

https://www.neuronav.org/post/creative-workarounds-and-silver-linings

Impact of Parental Training and Race on Services Negotiated at an IEP

This was an research paper written for my Psych 167AC Stigma and Prejudice Course with Prof Mendoza-Denton.

(NOTE: The data itself is all made up - that was the point of the project but all the lit review and findings very much reflect reality of the ground situation for many families with autism)

Impact of Parental Training and Race on Services Negotiated at an IEP

With a diagnosis rate of 1:54 children, Autism Spectrum Disorder or ASD, has of late become the most rapidly diagnosed neurodevelopmental disorder. As a result, an increasing number of children are entering the special education system. While free public education for non-disabled school age children in the United States has been around for more than a century, the inclusion of disabled students is fairly recent with the 1975 Individuals with Disabilities Education Act, or IDEA (DREDF, 2014). IDEA stipulates that students be included in the public education system with related services, “if students require them in order to benefit from specially designed instruction,” (DREDF, 2014). Given that autism is a spectrum disorder and can vary widely in how it affects a specific individual, there is no uniform set of services that can be applied across the board. Thus the type and hours of services a child actually receives is negotiated at the IEP (Individual Education Plan) meetings between the school district and the parents of the child. The only redress to IEP disagreements is through mediation and lawsuits which can be intimidating for parents who enter the system with little to no knowledge of disability education.

Parallelly, Correll et al. (2002), points to societal judgements made about the Black community; that they are somehow less deserving. Goff et al. (2014) highlights racial bias in that Black children are thought to be less innocent than their White counterparts. What this racial bias translates to is substantial delays in the diagnosis of ASD for Black children, after the parents initially expressed concerns about the child’s development, despite the parents having health insurance (Costantino et al., 2020). Delays in the referral process and lack of timely ASD diagnosis often meant missing the crucial early years of services that could potentially lead to better outcomes (Dababnah et al., 2018). Non-White parents were often told that it was not ASD or given other diagnoses (Martinez et al., 2018). The 2020 Obeid et al., study further demonstrated implicit racial bias in ASD identification and stigma. In the study, White participants were more likely to diagnose Black children with conduct disorder and White children with ASD while the reverse was true for Black participants. In addition, Black parents themselves would delay in reporting ASD symptoms, mistaking it for disruptive behaviors, compared to White parents, even if the symptoms were more severe (Donohue et al., 2017).

Hypothesis: Parents who undergo IEP training will get more hours of services for their autistic child from the public school district as compared to parents who don’t, and the service hours are moderated by race, such that White parents will receive more services for their autistic child than Black parents.

Method

The sample size was 100 parents (either father or mother) of children with a clinical ASD diagnosis of elementary age, attending a special education program in the United States. 50 of the parents were Black and 50 were White. Each racial group was further divided into two groups, the experimental condition attending a one day training on special education laws, legal rights and the IEP process. The control groups did not receive this IEP training.

The study uses a 2 x 2 design. The first factor of parental training was manipulated with two levels, training or no training. The second factor of race, had two levels, Black or White. The dependent variable in this study was the number of hours per week of related services negotiated at the child’s IEP meeting between the school district and the parents following the training (or control). Related services refer to additional services on top of what is provided to all students in a special education classroom. These include 1:1 support hours, speech therapy hours, occupational therapy hours, behavioral therapy hours etc. Aggregated data for the four levels were analyzed.

Results

Descriptive statistics of aggregated (fake) data for each of the four profiles are summarized in the table below. The mean for the different profiles is also represented in graphical form below.

Discussion

The data from the study supports the hypotheses. The above graph clearly demonstrates a main effect of parental training level, such that a IEP training is positively correlated to more service hours that are negotiated with the school districts at IEP meetings, independent of race There is a second main effect of race, such that the school district provides more service hours to White children rather than Black children. In addition, as is evident by the differing slopes of the two lines representing race in the graph, there is an interaction effect or a joint effect that cannot be explained away by each main effect in isolation. Thus while parental training leads to better outcomes in terms of service hours, this effect is moderated by race, such that being White leads to better outcomes than being Black.

Though it is not designed to be so, in reality the IEP has become an exercise in skill and artful negotiation. On the one side are school districts which are historically underfunded and under-resourced so will watch every dollar that needs to be spent despite laws that insist on appropriate supports to enhance inclusion. Part of the issue is the ongoing stigma around disability itself, that it would be a waste to spend resources on kids who would not improve anyway. On the other hand are the needs of autistic children; effective and timely delivery of support services can positively impact their outcomes further on in their lives.

The results of this study are therefore not surprising. A working knowledge of and training of their child’s rights under IDEA and understanding the IEP process gives parents the confidence to act as an equal amongst the professionals, educators and other experts that dominate the IEP table. Trained parents can argue for and justify the need for services. For the same reasons, trained parents are better equipped to go to mediation or sue in order to resolve IEP disagreements.

The other main effect of race has historically been an issue across the board as discussed earlier in the introduction section, and it is not surprising that this is the case when it comes to services received by Black children than White children. Black children may be seen as less deserving of services and more so if they have a disability which already has a lot of historical stigma attached to it. So while the trained Black parent is able to obtain more services than a non-trained parent (irrespective of race), the effect is dampened by the race factor. That is to say, for the Black parents, the gap in services has not closed due to the fact of training alone.

This study has major limitations. Outcomes cannot be limited to just two factors as there can be other extraneous issues that come into play. For instance, funding for school districts is often linked to property taxes and poorer neighborhoods housing minorities may be even more resource constrained. The severity of ASD and other comorbid diagnosis and conditions have also not been factored in.

A future direction would be to further examine this interaction effect and also examine the effects of severity of ASD, and resultant outcomes in terms of services received.

References

Constantino, J. N., Abbacchi, A. M., Saulnier, C., Klaiman, C., Mandell, D. S., Yi Zhang, Hawks, Z., Bates, J., Klin, A., Shattuck, P., Molholm, S., Fitzgerald, R., Roux, A., Lowe, J. K., & Geschwind, D. H. (2020). Timing of the Diagnosis of Autism in African American Children. Pediatrics, 146(3), 1–9. https://doi.org/10.1542/peds.2019-3629

Correll, J., Park, B., Judd, C., & Wittenbrink, B. (2002). The police officer's dilemma: Using ethnicity to disambiguate potentially threatening individuals. Journal of Personality and Social Psychology, 83(6), 1314-1329.

Dababnah, S., Shaia, W. E., Campion, K., & Nichols, H. M. (2018). “We Had to Keep Pushing”: Caregivers’ Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care. Intellectual & Developmental Disabilities, 56(5), 321–336. https://doi.org/10.1352/1934-9556-56.5.321

Donohue, M. R., Childs, A. W., Richards, M., & Robins, D. L. (2019). Race influences parent report of concerns about symptoms of autism spectrum disorder. Autism: The International Journal of Research & Practice, 23(1), 100.

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A work in Progress when it come to the Disability Community

“As a disabled autistic, I have often wondered about the conversations on inclusion, access and civil rights that still seem to be a work in progress when it comes to the disability community.”

-Hari Srinivasan

“This is Our Campus Too”, The Daily Californian