Precision Progress: Empowering Autistic Minds Using Fine Motor Skills
Advisor: Bryan Meyerowitz
Internship Location: Boston University School of Medicine
Onsite Mentor: Jonathan Wisco
As of 2023, the CDC has reported over 75 million people across the world diagnosed with Autism Spectrum Disorder, a neurodevelopmental disorder characterized by problems with social interactions, cognitive/communication impairments, and repetitive patterns of behavior. With the prevalence of this disorder steadily increasing, individuals with autism notably struggle with their executive functions, high-level cognitive skills (e.g. problem solving, memory, planning), leading to difficulties with simple daily tasks and activities.
However, fine motor skills have been found to aid neurotypicals (those with typical neurological functioning, non-autistics) with their executive functioning. Accordingly, this project aims to determine if the utilization of fine motor skills can improve executive functioning in autistic individuals.
Data collection for this project, an experiment consisting of autistic and neurotypical (control) adult participants, will take place at the Boston University School of Medicine. Essentially, participants will be asked to complete three tasks (Task 1: test executive functioning; Task 2: test fine motor skills; Task 3: test executive functioning when participants use fine motor skills to complete task) while simultaneously wearing a functional Near Infrared Spectroscopy (fNIRS) headband (brain imaging device).
I expect all participants will score higher on the task in which they utilize their fine motor skills to complete the task, than the task in which they complete the task without using their fine motor skills.
Upon successful completion, this project could potentially encourage modes of therapy for autistic individuals that hone in on their fine motor skills as a means to improve their otherwise impaired executive functions, as well as provide significant insight into existing therapies/treatments for autistic people.
Project Blog
Post 1: A Crash Course in Autism
Abnormal growth of the brain. Difficulties with social interaction. Repetitive patterns of behavior. Communication and cognitive impairments.
These are all principal features of Autism Spectrum Disorder. And all problems that over 75 million people worldwide diagnosed with this neurodevelopmental disorder, as reported by the CDC in 2023, experience at some level or the other.
With autism affecting an estimated 1 in 36 children in the United States, and the prevalence of this disorder steadily increasing, autistic individuals notably struggle with their executive functions, high-level cognitive skills such as problem solving, memory, communication, attention, and planning, among various others. These executive function deficits, consistently linked to autism by numerous studies, lead to significant difficulties with simple daily tasks and activities for autistic individuals.
However, fine motor skills, which require individuals to use the small muscles in their hands and wrists to make precise movements (e.g. writing, coloring), have been found to aid neurotypicals (non-autistics, those with typical neurological functioning) with their executive functioning. Consequently, my project aims to determine if the utilization of fine motor skills can improve executive functioning in autistic individuals. I anticipate that all participants (both autistic and neurotypical) will perform better on the executive functioning task when using their fine motor skills.
While there is no definitive “cure” for autism, there are a variety of treatments and therapies to mitigate its symptoms and help autistic people live as normal a life as possible. This project may provide greater insight into existing treatments/therapies, as well as potentially encourage modes of therapy for autistic individuals that hone in on their fine motor skills as a means to improve their otherwise impaired executive functions.
Now to be able to create any viable solution, you must first fully understand the problem itself. Accordingly, this week, I delved into the 2007 novel New Developments in Autism, through which I gained a deeper understanding of the characteristics that define autism, although the definite etiology of the disorder remains uncertain. I specifically focused on Chapter 8 of the novel, “Executive Functions in Autism,” which detailed both the nature of executive dysfunction in autism and possible correlations between executive dysfunction and other core symptoms of autism, particularly repetitive behaviors and social impairments.
This week, I also researched the perception of autism and autistic individuals in contemporary society, finding that autism remains largely stigmatized, with many neurotypical adults and adolescents having misconceptions about autism and perceiving autistic adults much more negatively. Additionally, autistic individuals are often depicted in the media as emotionally distant, socially awkward, and intellectually challenged, a portrayal that not only misrepresents the disorder, but also fosters negative stereotypes that contribute to the stigmatization of autism as a whole.
This further highlights the present necessity for a wider variety of therapies and treatments for Autism Spectrum Disorder, in order to ensure the greatest possible quality of life for autistic individuals.
Post 2: Who, When, Where, What, and How?
Welcome back to Week 2 of my blog! I thought I’d start off with a little pop quiz. What are the six basic steps of the Scientific Method? If you know the answer, great, shout it out! If you know the answer, but you don’t test well, I’m sure you "knew it all along." And if you’re sitting there thinking "What’s the Scientific Method?" this is for you:
These are the six basic steps of the Scientific Method, an empirical method that has characterized the development of science since the 17th century, at least, according to my first grade teacher. So naturally, for this project, how could I not follow the Scientific Method? Having covered the motivations behind this project, as well as the questions asked and predictions made, last week, today I’ll be giving you a brief overview of the methodology of this project, i.e., step 4, the experiment itself.
So I’m just going to skip the whole Institutional Review Board (IRB) approval process, because that was probably one of the longest six months of my life. (What is research if not slow, tedious, but incredibly rewarding in the end?) Instead, I’ll get right to where we are now: the recruitment phase.
Participant Recruitment
With a goal of 50 total participants (ages 18-30), we are currently working to recruit 25 autistic participants from Northeast Arc, a nonprofit organization located in greater Boston that provides services and support to autistic individuals, and 25 neurotypical participants from the Boston University student body.
Data Collection
The next phase of the study following participant recruitment is data collection; this consists of the experiment task administration to the participants, which will be spearheaded by my external advisor, Dr. Jonathan Wisco, in either the Northeast Arc Center for Linking Lives or at the Boston University School of Medicine.
Essentially, as part of the experiment, participants will be asked to complete three separate tasks. The first task is meant to test participants’ executive functioning skills, more specifically their problem solving skills; participants will be shown images of bead patterns, each with a missing sequence, and then prompted to verbally indicate the correct missing sequence from four presented options.
The second task is meant to test participants’ fine motor skills; in this examination, participants will be prompted to simply string multiple beads in no particular order.
The third task is a combined version of the first two tasks, meant to test participants’ executive functioning (problem solving) skills while they are completing the task using their fine motor skills; once again, participants will be shown images of bead patterns, each with a missing sequence, and then prompted to manually string the beads in the correct pattern with the missing sequence included.
Additionally, participant brain activity will be simultaneously measured during the data collection process. During each task, participants will be wearing a functional Near Infrared Spectroscopy (fNIRS) headband, as pictured below, a noninvasive neuroimaging device that measures and records brain activity in the form of blood oxygen levels.
So there you have it, the methodology of a likely year-long research process condensed to just a few hundred words. As I previously mentioned, research takes time --- it’s an extensive process. And I am beyond thrilled to have you all to accompany me as I journey through it.
Post 3: Rise of the Research-A-Holics
And we’re back! I know you guys must have been on the edge of your seats for the past week, waiting for my next blog post. Ok that might be a tad of an overstatement, but either way I hope you aren’t sick of me yet (especially since it’s only week three, and I’ve got around nine of these left). So let’s get right to it. Today, we’ll be diving into the foundation and core of every scientific question, hypothesis, and study: the research.
As I mentioned in my very first blog post, to be able to create any viable solution, you must first fully understand the problem itself. And how can we truly understand the problem? By studying the work of the many scientists before us. In other words, through research. So without further ado, what can I say except - lights, camera, research!
For the past couple of weeks, I’ve been reading the 2007 novel New Developments in Autism, and I thought I’d give you all a brief summary of the section that is most relevant to my project: Chapter 8, Executive Functions in Autism.
The novel defines executive functioning as a “cognitive construct used to describe goal-directed, future-oriented behavior” (e.g. problem solving, planning, working memory etc…); executive functions are thought to be mediated by the frontal lobe (more specifically, the prefrontal cortex).
Furthermore, executive dysfunction has been found in individuals with autism, across many ages and functioning levels, as demonstrated by a variety of instruments utilized to measure executive functioning. These instruments include the Wisconsin Card Sorting Test (WCST), a measure of cognitive flexibility, and the Tower of Hanoi, a test of planning, both tests autistic individuals have been found to consistently struggle with.
Wisconsin Card Sorting Test [participants are presented with a series of cards containing stimuli that vary along several dimensions, including shape, color, and form - they are asked to sort the cards by matching the stimulus cards with a key card that has the same characteristic (e.g. shape)]
Tower of Hanoi [three pegs/towers with disks placed one over the other - participants must move the stack to another peg (only one disk can be moved at a time, and no disk can be placed on top of the smaller disk)]
Additionally, the chapter touches on the correlations between executive dysfunction and core symptoms of autism, beginning with early social impairments and continuing throughout childhood and adulthood; notably, as expressed in the novel, studies have suggested executive dysfunction to be a causative factor behind the stereotyped, repetitive behaviors of autistic individuals.
So essentially, not only do executive function deficits lead to significant difficulties with simple daily tasks for those with autism, but they also greatly contribute to the reduced overall social functioning for these individuals.
That pretty much wraps up my post for the week. I hope you all learned a little bit more about autism and executive functioning, and also have a greater understanding of why I chose to pursue this particular project.
I’ll now leave you with a quote from one of the greats. Just a little something to think about while you’re on the edge of your seats, waiting for my next blog post.
“If we knew what it was we were doing, it would not be called research, would it?” - Albert Einstein.
Post 4: Great Expectations
Welcome back! Is it week four already? Time certainly flies when you’re immersed in the world of research. Ok that’s a lie…not that I don’t absolutely love doing research (regardless of how many days, weeks, months, or…years? it takes) So naturally, I thought I’d start off with a couple of brief updates on my project.
As I previously mentioned during week two, we are currently in the recruitment phase of the study. This week, I will be meeting with Tim Brown, the Chief Innovation and Strategy Officer at Northeast Arc, a Boston-based nonprofit organization that provides services and support to autistic individuals. Tim and I will be working to arrange the distribution of our recruitment fliers to Northeast Arc members, so we can complete study recruitment and begin data collection.
Now, since I’ve already shed some light on the specific tasks participants must complete as part of the project/data collection, today I thought I’d delve deeper into my expected results.
*DISCLAIMER* The information below does include mentions of statistical analyses. But bear with me, because data analysis is (unfortunately, for me) a crucial part of every research study.
Essentially, my project, which aims to determine if the utilization of fine motor skills can improve executive functioning (EF) in autistic individuals, can be broken down into four key hypotheses:
HYPOTHESIS #1
“All participants (autistic and neurotypical) will score higher on task 3, which requires them to use their fine motor skills to complete a cognitive test, than task 1 which requires them to complete a cognitive test without using their fine motor skills.”
Analysis
We will conduct a 1 sample-t-test to compare the mean task scores for each of the three tasks performed by individual participants (IV = type of task (1, 2, or 3); DV = task score).
HYPOTHESIS #2
“There will be greater prefrontal cortex activity when participants are completing task 1 (cognitive test without fine motor), as opposed to task 3 (cognitive test using fine motor).”
The reasoning behind this anticipated result is that when participants are not relying on their fine motor skills (in addition to their EF skills) to complete a task, they are purely relying on their EF skills, which are all concentrated in the prefrontal cortex, as shown below.
This would result in increased prefrontal cortex activity during task 1 (cognitive test without fine motor).
Analysis
We will conduct a 1 sample t-test to compare the mean Blood Oxygenation Level Dependency (BOLD) signals (recorded by the fNIRS neuroimaging device/headband) during each of the three tasks performed by individual participants (IV = type of task; DV = BOLD signal measured as percent change).
HYPOTHESIS #3
“Neurotypical participants will score higher overall on all three tasks as opposed to autistic participants (since autistic individuals already struggle with both EF and fine motor skills).”
Analysis
We will conduct a one-way Multivariate Analysis of Variance (MANOVA) test to determine if neurotypical participants performed better on all three tasks than autistic participants (IV#1 = autistic or neurotypical; IV#2 = type of task; DV = task score).
HYPOTHESIS #4
“When performing each of the three tasks, there will be increased prefrontal cortex activity in autistic participants than in neurotypical participants.”
The reasoning behind this expected result is that researchers have found autistic individuals to exhibit greater and more variable/random brain activity than neurotypicals when completing simple tasks.
Analysis
We will conduct a one-way MANOVA test to determine if autistic participants have higher mean BOLD signals than neurotypical participants when completing the 3 tasks (IV#1 = autistic or neurotypical; IV#2 = type of task; DV = BOLD signal measured as percent change).
So there you have it. My four “great expectations” for this project. I may ultimately find them to be true, or, who knows, the results might not even turn out as I anticipated.
A great novelist expressed it best though, in a statement I personally believe every scientist and researcher should hold themselves to ---
“I must be taken as I have been made. The success is not mine, the failure is not mine, but the two together make me.” - Charles Dickens, Great Expectations
Post 5: It’s All About Remediation
Hello and welcome back! I hope you all have been enjoying my weekly musings, because I’ve certainly been enjoying writing them. Now, as you know, the primary purpose of my project is to determine if the utilization of fine motor skills can improve executive functioning (EF) in individuals with autism. Today, we’ll be delving back into the research, more specifically, a different, tried and true approach towards improving cognitive (including EF) functioning: cognitive remediation.
Let’s define it
In a broader sense, cognitive remediation (CR) is a systematic approach to teaching individuals to overcome cognitive deficits arising from brain dysfunction. Accordingly, typical targets of CR include memory, attention, motivation, language, and, of course, executive functions. Defined more specifically, CR is behavioral interventions that help improve cognitive functioning through the use of repetitive exercises and positive reinforcers, such as praise and/or tokens for participation and increased attention span.
CR is essentially an umbrella term for psychological interventions that use cognitive training exercises to remedy difficulties in social cognition and neuropsychological functioning; as such, the term includes cognitive training, cognitive enhancement therapy, and cognitive rehabilitation.
One example of CR is shown below. The intervention is divided into modules, each meant to target different skills/deficits, through a variety of exercises, for improvement.
Some history and relevant applications
The use of cognitive training and subsequent CR interventions were originally developed for use in brain lesions, then broadened to be used for patients with schizophrenia, and later further adapted for patients with anorexia nervosa.
However, in more recent years, an increasing number of studies have been conducted on the use of CR interventions with regard to autistic individuals, who, as I’ve previously mentioned, are known to face struggles with cognitive functioning, which includes executive dysfunction. Findings from these studies have indicated that CR can be effective in improving cognitive functioning, not limited to but including executive functioning, in autistic individuals.
So what’s the catch?
While shown to be effective, there exist a variety of barriers for the translation of CR interventions from purely empirical study to the clinical setting. Notably, given the numerous forms of CR, it is difficult to discern which particular CR intervention would be ideal and most effective for a particular autistic individual. Additionally, researchers have reported potential issues with accessibility and cost in relation to CR treatments/therapies.
Consequently, it is essential that we continue to explore other methods to help remediate these cognitive deficits; this is precisely my goal with this project, which, hopefully, may encourage modes of therapy for autistic individuals that hone in on their fine motor skills as a means to improve their otherwise impaired executive functions. But hey, that still remains to be seen. One of the most wonderful aspects of the field of science is that it is truly dynamic; there is always room for improvement, innovation, and discovery. All we have to do is keep an open mind and be willing to learn.
“The measure of intelligence is the ability to change.” - Albert Einstein
Post 6: Let’s Go Mainstream
Hello, hello, and welcome back! I can’t believe we’re already halfway through this incredible journey of a project. I know my last few posts have been a little heavy on the scientific and technical, so today, I’ll be shifting towards a different, fascinating aspect of my project: the portrayal of autism and autistic individuals in mainstream/popular media.
As I mentioned earlier in week 1, the perception of autism in contemporary society is directly linked to the depiction of autistic individuals in the media, which has a significant influence on societal beliefs and people’s attitudes towards others.
Although now featured more prominently in mainstream media, autistic individuals are often negatively represented, leading to public misconceptions about the disorder and fostering negative stereotypes that contribute to the stigmatization of autism as a whole. Accordingly, in an Australian study with 1297 autistic people and parents/carers of autistic people, autistic adults reported feeling socially isolated and even reluctant to leave their houses due to concern about how they will be treated, while parents/carers reported negative reactions when in the community with their family.
In a 2023 paper on the portrayal of autism in mainstream media, Mittman et al. found that the stigmatization of autism is most prominent in movies and television, often with a negative tone and stereotypical portrayal of autistic individuals (e.g. emotionally distant, socially awkward).
Savantism (a rare condition where an autistic individual is exceptionally apt in one domain, such as art or mathematics, despite significant social or intellectual impairment) continues to be overrepresented in the media as well, leading to the belief that most people with autism have extraordinary skills. However, this is not accurate, as less than 10% of people with autism actually display savant skills.
For instance, in the movie Rain Man, the main character, Raymond Babbitt, is an autistic savant who can perform complex mathematical calculations in seconds.
This further reinforces the stereotype that all autistic individuals possess extraordinary abilities and creates unrealistic expectations and perceptions of autism.
However, in more recent years, there has been an increase in positive representation of autism in the media. The TV show Atypical positively portrays Sam Gardner, an autistic teenager, as a multi-dimensional character with a wide range of interests and abilities.
Studies have found that internal monologues, as used in Atypical, are also useful in providing greater insight into the point-of-view of autistic characters, and that having a main character with autism leads to a more positive perception of the disorder.
Portrayals of autism and autistic individuals in the media are continuing to increase and largely remain problematic, which calls attention to the necessity of more autistic individuals included in the content creation process, to ensure that the representation of autism is both authentic and respectful.
This approach can not only lead to more accurate and positive depictions of autism, but also help educate the public, raise awareness, and break down the stigma surrounding autism and autistic people.
“Sometimes it is the people no one can imagine anything of who do the things no one can imagine.” - Alan Turing
Post 7: A Trip Down Memory Lane
Hi everyone! Good news. My week 7 blog post is finally here. More good news. Today, we’ll be continuing down the spiral of non-scientific research, specifically into the history of autism, as we aim further to understand the disorder as a whole.
The 20th century was truly a significant century for autism, often understood to be a “twentieth-century disorder.” Not only were there notable clinical advances in the recognition, labeling, identification, and classification of autism, but there was also the rise of pharmacology for treatment and the increased role of psychiatry for identifying and managing autism.
Early History
The term “autism” was first coined in 1911 by Swiss psychiatrist Eugen Bleuler to describe a group of symptoms he observed in patients with schizophrenia. However, it was the work of two pioneering individuals that actually distinguished autism as a distinct concept:
In 1943, Leo Kanner published a paper describing the behavior he had observed in 11 children (need for sameness, aloneness, obsessions), and introducing the world to “early infantile autism.” At the time, it was common for children exhibiting the types of behaviors Kanner had observed to be classified as schizophrenic; thus, Kanner’s work greatly helped distinguish autism as a separate condition.
Simultaneously, German pediatrician Hans Asperger was writing in parallel with Kanner about the characteristics of children in similar ways. Asperger observed the behavior of four boys, as shown below, who he believed were facing challenges in forming friendships, displayed a general lack of empathy towards others, had clumsy movements, and expressed difficulties with communication. It was also Asperger who noted that children with this syndrome could potentially flourish, and in some cases show signs of genius (i.e. savantism), as well as that autism may exist on a continuum.
Furthermore, while Kanner argued that no single factor could explain the behaviors consistent with autism, a largely influential, problematic theory in the 1960s (long since discredited) was that autism was associated with a certain parenting style, with a cold and unavailable mother leading the child to shut down emotionally. This theory, referred to as the “refrigerator mother,” resulted in many mothers feeling responsible for their child’s condition.
Diagnosis
After decades of advancements in the field of child psychiatry, both scientific and sociopolitical, the Diagnostic and Statistical Manual of Mental Disorders (DSM)-III, published in 1980, recognized autism as a distinct conceptual category.
At this point in the 20th century, the notion of autism spectrum disorder was coined and these triad of impairments, all core characteristics of autism, became part of common clinical discourse:
- Impairments in communication
- Impairments in social interaction
- Restrictive repetitive patterns of behavior
The subsequent 1994 DSM-IV included Asperger’s Syndrome, viewed as distinct to autism; those with Asperger’s Syndrome were seen as having normal or higher levels of intellectual ability.
21st Century
However, the most recent 2013 DSM-5 saw the removal of Asperger’s Syndrome as a distinct classification; while DSM-5 maintained the notion of the spectrum, Asperger’s Syndrome was subsumed under the general category of Autism Spectrum Disorder. Furthermore, the criteria for diagnosing autism also shifted with the DSM-5, with a movement away from a triad of impairments to a dyad of impairments. There were now just two domains of difficulties:
- Social communication
- Restrictive and repetitive patterns of behavior
So there you have it. The history of autism in a nutshell. Stay tuned as we continue to delve into the extensive research, both past and present, surrounding Autism Spectrum Disorder.
“You have to know the past to understand the present.” - Carl Sagan
Post 8: Precision Progress
Hello, hello and welcome back to week 8 of my senior project! Today’s post is going to be a little short, but hopefully pretty informative. Now, as I’ve repeatedly mentioned, autistic people greatly struggle with their executive functioning (I know, here I go again), which is why the primary focus of this study is the improvement of these individuals’ executive functioning (via fine motor skills).
But why fine motor skills? Well, for starters, fine motor skills have been found to contribute to/correlate with higher academic achievement and task performance in neurotypical children. Studies have also found there to be a significant association between fine motor skills and social competence and maturity in children, with fine motor skills as a potential impact factor to improve children’s social growth; a notable symptom, or characteristic, of autism is social skill deficits (difficulties with social communication, interaction, overall functioning, etc…).
Additionally, tactile forms of cognitive remediation (which, if you remember from week 5, is a systematic approach/intervention to teaching individuals to overcome cognitive deficits arising from brain dysfunction) that require physical mobilization of the hands and fingers have been described with positive results with regard to executive functioning. This further suggests that the use of fine motor skills may benefit the improvement of both social and non-social cognition for autistic people.
Ultimately, given the need for more literature on the link between fine motor skills and executive functions, more specifically in relation to Autism Spectrum Disorder and adults (with current research predominantly focused on children), it is worthwhile to explore if fine motor skills can help improve the executive functioning of autistic adults, i.e. my project in a nutshell.
“If you want to change the world, pick up your pen and write.” - Martin Luther
Post 9: Autism and a Multicultural World
Welcome back to week 9 (I can’t believe it’s been nine weeks already - I guess time flies when you’re having fun)! Who’s ready to continue venturing further down the spiral of the non-scientific? I, for one, definitely am. Now, if you haven’t already deduced this from the title, today we’ll be delving into perspectives on Autism Spectrum Disorder from the various (non-western) cultures of the world, or in other words…the multiculturalist perspective.
Cultural context has a significant effect on the implications and interpretations of an autism diagnosis. There are differential effects of culture on social acceptance and the understanding and provision of services for autistic individuals; certain behaviors exhibited by individuals with autism may also have differing cultural interpretations.
For instance, while the tendency of autistic people to not make direct eye contact with parents/caregivers may be viewed as unusual in Western cultures, it may be interpreted as polite and respectful in certain Eastern cultures, such as in China and South Korea. On the other hand, poor communication, a notable characteristic exhibited by those with the disorder, is likely to be problematic in all cultures.
Why does this matter?
Studies have consistently highlighted the need for greater cross-cultural work/research in order to gain a more in-depth understanding of Autism Spectrum Disorder as a whole. Accordingly, a 2013 review on Korean culture and autism argued that culturally informed research on autism is vital for increasing awareness of the importance of early intervention and the need for educational and psychological services in countries like South Korea, a country in which autism can be stigmatized and left undiagnosed or misdiagnosed.
Another 2012 paper proposed that cross-cultural community-based research studies or studies of subcultures within a single community can advance knowledge of interactions among genetic, environmental and cultural factors on the expression of autism. If it is possible to adequately ascertain whether there are real prevalence differences between cultures or real differences in severity, this could lead to the identification of potentially protective environmental factors.
Cultural Perspectives
Studies conducted in non-Western cultures, such as in India and Japan, have indicated a significant time lag between the age of initial parental concern and age of autism diagnosis; a study conducted with parents of autistic children in India found a wide age range at which a diagnosis was first made (15 months to 228 months), indicating the likelihood that a high proportion of individuals with autism in the country remain undiagnosed.
Furthermore, a 2012 paper on autism research in South Korea and South Africa, reported that autism is underdiagnosed in the two countries and contended that this could partially be the result of parents engaging in less help-seeking behavior than that which occurs in other cultures. Similarly, a 2013 study reported South Korean mothers’ resistance to accept a diagnosis of autism for their child. Essentially, within certain communities, perceived social stigma and fear may be great enough to discourage any form of disclosure of a child’s special needs to health professionals. This constitutes a problem as if parents are not willing to seek or disclose a diagnosis of autism then there is little pressure on the government or private sector to build the necessary services for these autistic individuals.
This notion was echoed by a 2020 qualitative study under the New York City (NYC) Korean Community Autism Project, which confirmed that discomfort, stigma, and discrimination are prevailing community attitudes towards autism and developmental disorders in the Korean-American community. These community beliefs in turn affect families’ and professionals’ understanding of autism and their care for children diagnosed with the disorder.
Perceived stigma remains prevalent in a variety of other global cultures as well. Mak and Kwok (2010) reported that in Hong Kong parents often feel there is a family stigma if a child is diagnosed with autism, while the internalization of stigma within families who had a child with autism was also reported to be severe. Additionally, Asian/Pacific Islander and African American parents were less likely than Caucasian parents to agree with teachers that their child’s behavior was indicative of an underlying disorder, indicating a lack of acceptance of a label of developmental disorder for the child.
In Conclusion…
Awareness of autism within the health profession is generally high in Western cultures, with autism research heavily skewed towards western high-income countries, as stated by a 2023 paper on a conceptual framework for understanding the cultural and contextual factors on autism worldwide. Culturally appropriate screening and diagnostic instruments for autism are also lacking in most low and middle income settings where the majority of the global autism population resides.
Ultimately, there is a need for greater autism research to be conducted in non-western cultures, as further research will lead to improved understanding of the universality of autism, the causes, and how to best improve the outcomes for individuals affected.
“Strength lies in differences, not in similarities.” - Stephen R. Covey
Post 10: Stigma, Stigma, and…Stigma
Well, here we are, week 10. I have some bad news -- we’re almost at the end of our journey together. But don’t worry there’s also some good news -- you’ll be getting to see my senior project presentation pretty soon. Now today, if you haven’t already guessed (from my super vague title), we’ll be continuing down the spiral of the non-scientific, as we discuss the stigma surrounding Autism Spectrum Disorder and experienced by those diagnosed.
As stated by a 2022 narrative review paper on understanding stigma in autism, autistic people can experience loneliness and fewer friendships compared to their neurotypical peers, fewer friendships in adolescence compared with peers with other special educational needs, have more difficulties with education and employment, experience poor social integration, and face high rates of bullying. These factors are all associated with a reduced quality of life. And while these experiences have been attributed to autistic traits, there is a significant impact of negative societal responses to autistic people (i.e. stigma) on these outcomes.
The experience of stigma has been reported by both autistic adolescents and adults across a variety of research. Notably, a 2022 systematic review on autistic people’s experiences of stigma found that autistic individuals are aware of being stereotyped, judged, and discriminated against by others. Autistic people also show signs of internalizing stigma, making them more vulnerable to low self-worth and poorer mental health, with these individuals describing the stigma associated with autism as “destructive.”
Influential Factors
Poorer public and professional knowledge of autism often correlates with less positive attitudes and increased stigma; negative stereotyping and public misinformation (e.g. autistic people do not show affection or attachments) can be greatly harmful as well.
Furthermore, autistic people’s struggles with social communication are often physically expressed, whether through unusual patterns of eye contact, reduced facial expressions and sharing of emotions, limited gesture use, or restricted and repetitive behaviors (stimming).
These visible autistic traits may in turn lead to negative attitudes during first impression formation; when researchers assessed first impressions, neurotypical individuals were found to perceive autistic people as less attractive, more submissive, and more awkward than their neurotypical counterparts.
Autistic people have also recognized stereotyped or repetitive motor behaviors to be negatively judged by neurotypicals, reporting that some even associate autism with violent acts (which only prompts greater stigmatization).
The Impact
The stigma surrounding autism has a significant impact on the overall well-being of autistic people, more specifically the mental health and physical health, as stigma can lead to reduced access to quality healthcare, and social connectedness to both their local and wider communities (and resulting social isolation) of these individuals.
This stigma is also linked to “camouflaging,” in which some autistic people dampen down or mask their autistic traits to try and appear more neurotypical, or in other words, to “fit in;” however, camouflaging certain behaviors is mentally taxing and may also delay diagnosis and access to support for autistic individuals.
Embracing Neurodiversity
A sentiment echoed by a multitude of researchers, this stigma may be best mitigated by a fundamental shift in the societal perception of autism. The neurodiversity movement celebrates autism for the differences it brings to society, and for being an integral part of autistic individuals’ identities. Essentially, neurodiversity is the recognition of the range of natural diversity found within human development.
Having views aligned with the neurodiversity model is associated with lower stigma toward autistic people, while autistic identification is positively related to positive self-esteem, as well as lower levels of depression and anxiety; the neurodiversity movement aligns with the ownership that many autistic people have taken of language used to describe them.
Ultimately, the neurodiversity movement has great potential to improve the public and professional understanding of autism, while also fostering a culture where autistic people are able to take pride in and express their true selves. (Fun Fact: Did you know April is Autism Acceptance Month?)
“It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences.” - Audre Lorde
Post 11: So How Does It End?
Hi everyone! Drumroll please……it’s Senior Project Presentation week! Are you guys excited for the presentations on Saturday? I definitely am. But enough about what lies ahead. Let’s talk about what I’m doing right now.
Now if there’s one thing you should know about the research process, it’s that it is long. And slow. I mean, I started designing and putting together this study last summer, and finally got IRB approval this January. And presently, we’ve only just entered the recruitment phase of the study.
As I previously mentioned, we are aiming to recruit 50 total participants. Our strategy, however, is to over recruit for participants; that way, we are more certain to hit our target (it’s always better to have more than less participants), and we are also prepared in the case that a participant drops out of the study.
We are recruiting (self-reported) neurotypical adults aged 18-30 from the Boston University student body, including undergraduate, medical, and graduate students. We are recruiting high-functioning autistic adults aged 18-30 (self-sufficient, able to make decisions for themselves and consent on their own) through Northeast Arc, a nonprofit organization that provides services and support to autistic individuals.
By the end of May, we will have full access to the functional Near Infrared Spectroscopy (fNIRS) headband for the purpose of our study; once we have the brain-imaging device, we will begin the task administration and data collection phase with our recruited participants, which will run throughout the summer.
So there you have it, a brief update on where I stand with my project, just a small piece in an ongoing research study, just a small piece in the global quest to improve the quality of life for the millions across the world diagnosed with Autism Spectrum Disorder.
“We have to be part of something larger than ourselves, because our dreams are often bigger than our lifetimes.” - Rosalie Bertell
Post 12: Goodbye and Hello
Well, after three months of blood, sweat, and tears (Don’t mind me, I can be a tad bit dramatic), week 12 we’re finally here. It has truly been a pleasure having you all as my incredible audience and companions throughout this journey that is the Senior Project.
To all those who came out and watched my presentation on Saturday, thank you. I hope you had a wonderful time (and I hope it was certainly entertaining for you). And to all those who read my blog, followed my progress, and immersed themselves in my project, thank you.
There is a silver lining though. This is not truly the end of my research. As I mentioned last week, my project is only a small part, or, I guess, a tiny glimpse, of a much larger, much more consequential research study. So do not fear, the end is, in fact, not near. If you want to know how my study turns out (hopefully successful), feel free to reach out to me, and I would be more than happy to give you additional updates and information.
I’ll now leave you with a quote (I know, it’s the last time I’ll do this, feel free to take a moment).
“It’s time to say goodbye, but I think goodbyes are sad and I’d much rather say hello. Hello to a new adventure.” - Ernie Harwell