An Inquiry into Autism: The Path to a Deeper Understanding of Neurodiversity
Advisor: Mr. Betcher
Internship Location: Alexander Rose Elementary School (250 Roswell Dr, Milpitas, CA 95035)
Onsite Mentor: Robert Meehan
In a neurotypical society, autistic people may have a difficult time both fitting into social groups or living alone. A lot of people on the internet either misrepresent those with autism or convey myths about the condition, spreading misconceptions that negatively impact autistic people. This can make people misunderstand autism, and reinforce the discrimination against autistic people.
In my project, I aim to learn more about autism and utilize my research to reflect on how I view neurodiversity not only in my family but also in today’s society. Through volunteering in a special needs classroom, I will learn more about working with children with special needs and how to assist them in their education. In addition, I will also be conducting research on autism by reading different works on autism over the years and reading memoirs by autistic authors about their experiences in order to better understand the condition and how people viewed it over time. I will be journaling my reflections on my volunteering experience and my research on books on autism throughout the project weeks. Ultimately, I will be combining my volunteering experience with the findings of my research in order to compile a final product that reflects my understanding and views on autism.
Project Blog
Post 1: Blog 0: Introduction
Hi everyone! In my senior project, I will be learning more about autism through two different experiences: through research and also through volunteering.
The term “autism” has always been talked about in my family, making me aware of neurodiverse people early in life. Both my uncle and my parents were open to talking about the term with me, and I came to know a general idea of what autism was. When I first volunteered in a special needs classroom with our yearbook club, I got to interact with children that were different from me, and needed more help than me or my peers did. The teachers of that classroom were open to all questions by us volunteers and showed us ways we could assist the children’s learning. It was an engaging way to get to know the children and to learn more about neurodiversity in our school’s community. However, I feel like I still don’t have a full grasp of what autism is, and I want to learn more about it in order to discover what neurodiversity means to not only me, but also to my family.
My main goal in this project is to learn more about autism, and to create a reflection-synthesis final product. I will be reading and analyzing sources ranging from first hand accounts like memoirs to older textbooks that first tried to define what the condition is. In addition to research, I will be volunteering in a special needs classroom to learn more about autism in an in person setting and interviewing a professional that closely works with autistic children. Through my work, I hope to inform others about my journey and help them learn more about the importance of neurodiversity in our society and community.
Post 2: Blog 1: Don't Climb the Fence VS Let's Continue Walking
Hi everyone! This week was the first week of working on senior projects and it was my first week volunteering in the special needs classroom! Outside of volunteering, I read a few memoirs, specifically The Reason I Jump and Making Peace with Autism. I had planned to also read I Have Been Buried Under Years of Dust, but I needed more time to take notes on Making Peace with Autism, so I decided to finish I Have Been Buried Under Years of Dust over the weekend before week 2 starts.
It has been incredibly fun volunteering at Mr. Meehan’s special needs class. I got to meet all of his students and worked with a few of the students when they needed to do work. I spent a lot of this week observing the other teachers and how they interacted with students when the students were upset or needed a break. This week, I took away 3 main lessons: be firm with the students in order to encourage them to do things by themselves and in order for them to recognize their wrongdoings and how they can improve on their behavior; positioning your body in a way that stops children from repeatedly doing what they aren’t supposed to do or going to places they shouldn’t; finally, instead of just telling students what not to do, try telling students what they can do. Every day is a new day, and I learn something new about how to interact with each student when they are having a hard time through observing the other teachers.
The Reason I Jump was a unique book, in a way that each chapter started off with common questions about autism and the author Higashida spent the page answering that question. Higashida was around 13 years old when he wrote the book, and I loved how he described autism to non-autistic people. He would describe it in a way that allows the reader to immerse themselves in the shoes of autistic children and he would often reference a lot about nature and used a lot of metaphors. At the end of each chapter that inquires about the behavior of autistic people, he implores his audience to not give up on autistic children. He implores them to be kind, to be patient, and to try and be understanding. This memoir was extremely touching, and is beginner friendly to anyone who is curious about autism.
Making Peace with Autism is written from the perspective of the mother of an autistic child. We follow the journey of the mother from her pregnancy all the way until her child becomes a teen. She talks about the struggles she had, the worries, and her brutally honest thoughts. When it is appropriate, she reflects and sets up a list of resources, creative ideas, and actions that she took to familiarize her son into unfamiliar environments, put her son in a better schooling environment, drafting up IEPs that will benefit her autistic son, and more. It is hard not to immerse yourself into the scenes that the author describes: her frustration when her son is not improving in the way she wants him to, the concern where her son shuts down when placed in an integration program, and the joy when things turn out well. This book tackles the emotions of being a parent to an autistic child well and not only encourages and motivates parents and caretakers to do the same, but also helps provide lessons, resources, and alternative solutions to help with the growth of her audiences’ autistic children.
This week I was able to tackle two of my main questions: what do people who have autism hope that others will understand about their lives and how can understanding autism change one’s view on neurodiversity and society? In the two books that I read this week, I briefly touched upon the question “what is autism” but I aim to do more research on that with the books I plan to read next week. I gained invaluable experience in Mr. Meehan’s class this week and I am excited to continue learning about working with autistic children in the following weeks.
Thank you for reading, and until next week!
Post 3: Blog 2: Power in Words and People (For Better or For Worse)
Hi everyone! This week, I continued volunteering in the morning and started my research on the history of autism by reading the books Understanding the Nature of Autism and Asperger’s Disorder and The Social, Cultural, and Political Discourses of Autism. A recurring theme in this week’s reading was that professionals hold a lot of power, as their word can prescribe medication and direct parents to programs that steer the course of a child’s life.
To start off, in Mr. Meehan’s class, I’m still observing the other teachers on how they work with and interact with the students. On top of that, I’m learning more about each student by the day, whether it is through observing or through some of the teachers sharing information about their habits with me. This week, I definitely feel like I’ve been relying a lot on information that I’ve read and accumulated, and not much on integrating myself into the class enough. Reading only took me so far this week, and in the following weeks, I aim to have a better sleep schedule so I can fully immerse myself in the classroom! I’ve also realized that I’ve only been working with a select few students, and although some students are harder to work with, I still want to be able to learn how to work with them and get to know them better as well. In the coming weeks, I hope to be a better aid to the class and to work with other students!
In this week’s reading, I learned a lot about the early diagnosis and prognosis of autism and Asperger’s disorder. In the 1960s, a lot of the fancy machines (e.g. MRI) that we use to observe the brain have not been created and used yet. Dr. Ritvo, a passionate and enthusiastic researcher, describes his journey in finding the differences between the development of neurotypical children and children with autism/Aperger’s. It was amazing to read how Dr. Ritvo took a lot of time to get to know autistic children and parents, observed them, created educated guesses in how autistic and neurotypical peers differed, and carried out small, ethical experiments. Quite a few of his experiments yielded differences between the two groups, such as observing the REM sleep in autistic and neurotypical children.
I’ve also started reading about the social discourse on autism. One idea that I see pop up in the first few chapters of The Social, Cultural, and Political Discourses of Autism is that the classification of conditions often is followed by stigma. The authors also constantly remind the readers that words have power. In the beginning chapters, they mention that they refrain from using person first language (e.g. person with autism) because they believe that just saying “autistic person” recognizes the autism as part of a person’s identity. They gave a really good example with the word “creative”: do we say “person with creativity” or do we say “creative person” when we describe someone? I really liked this example as it illustrates well that the way we say things can be perceived in a more positive light and others in a more undesirable tone (e.g. person with autism makes it sound like there is something wrong with them and overall has a bit more of a negative tone to it).
This week, I was able to add more detail to my notes for the following questions: what is autism and how has the perception and understanding of autism changed? I’m planning to read more on the history of autism over the weekend and next week; there is still more to learn and read about! The actions that professionals take after receiving a child’s autism diagnosis has changed quite a bit from the start until now. It is a relief that children today are no longer receiving seizure medication immediately after diagnosis is received, instead teams are built to address each child’s needs, growth, and improvement.
Thank you for reading, and until next week!
Post 4: Blog 3: The Social Box That Traps Neurodiversity
Hi everyone! Early this week, I realized that I had a really ambitious book list where I aimed to read 3 books a week, and I realized this week that I couldn’t keep up. Instead of cutting it down, I decided to prioritize the books that were suggested to me or the books that I wanted to tackle first in the next few weeks and skim through the rest of the books in my later weeks. I adjusted my reading schedule to read 2 books a week instead of 3, which is still pretty ambitious but it’s more doable.
This week I did volunteer work in the morning as usual and moved on to read a memoir Different, Not Less by Chloé Hayden and started reading more into Hans Asperger in the book Asperger’s Children. I also had an interview with a board member from Association for Autism and Neurodiversity (AANE) and I learned a lot more about her views and her organization’s stance on autism and neurodiversity as a whole. A big theme I took away was the fact that we as a society try to put everyone in a box of social acceptability, where we condemn differences that stray away from “normality.” I’m also starting to learn more on Hans Asperger and how we portray him today greatly differs from what he actually did.
In this week’s reading, I learned more about Hayden’s life, where she describes her struggles as a chronically ill, autistic, and ADHD person in today’s society. She shares with her audience the judgments that she got from her society, her school, and even from her coworkers or staff members when she is acting or presenting, respectively. She expands more to generalize society, where differences and quirks in children are seen as acceptable, but as we grow older, our differences make us stand out and our quirks go from being odd to unacceptable. She talks about the detrimental role of masking for autistic individuals, where they hide their stimming, their quirks, and their likes just to fit in with the people that society wants them to become. Hayden talks about the role that masking had on her declining mental health in not just herself, but to many other autistic people in the world.
While speaking with the board member of AANE, she has given me a lot of insight on her views on neurodiversity and autism, as well as the actions that AANE does to advocate for autism. She shares that labels such as “high-functioning” and “low-functioning” are terms that were first used by professionals to help refer to autistic people to other professionals. Over time there were a lot of misunderstandings that were developed, leading to traits and more to be dismissed. She also adds that labels are an oversimplification of dynamic strengths and needs, and often it really depends on the environment that autistic people are in. Some may feel safe enough in their environment to stim, while others are not. Throughout the interview, she emphasizes the impact of language. The language that we use when we refer to autistic people and the medical classifications that developed over time have developed to become incredibly ableist, putting down autistic individuals and hindering their ability to thrive in society.
Lastly, although I’ve only read a few chapters on Hans Asperger, I think it is despicable that the usage of “high-functioning” and “low-functioning” continued to persist in our society for so long. Asperger’s first usage of these terms was to differentiate between children that he thought were capable of conforming to society and following the Nazi regime well and children that were unable to. Now what would happen to these children that were unable to conform to society? Many were mass euthanized in their beds or were sent to another facility to be killed. I think this story differentiates vastly from how we view him in society: one of the bigger pioneers that advocated and shared a lot more about autistic children. We don’t often see this darker side.
Thank you for reading, and until next week!
Post 5: Blog 4: Graham Crackers and Airheads Sour Strips
Hi everyone! I don’t have much of an update this week, as I spent a lot of it being sick. I continued reading Asperger’s Children and learned more about the origins of autism.
I returned to volunteering today and the class had a different seating chart. It was hard for a few to adjust in the beginning, and by lunch time, a couple students returned to their old seats. A few students had a hard time doing work today, and often this is where I’m unsure on how to get them to do work other than being persistent. I often still observe how other teachers handle this so I can better work with these students if they have another hard day. Today was group speech day, where the speech teachers visit the class and lead a fun activity for the class. Through this session, we learned that one student enjoys eating graham crackers, which was exciting to find out! For another student, he was encouraged to try a sour candy and it was really cute to watch how his face revealed how he didn’t like the candy, but he returned to point for more. I watched the speech teacher teach him where to find candy on his talker, and repeatedly teach him where to find it, before rewarding him with the candy when he got it right. It was adorable seeing these two students trying new foods and end up liking them!
While continuing to read Asperger’s Children, I found out that a Jewish couple working under Asperger’s facility actually had a big part to play in discovering the key behaviors of autism. They separately wrote about it and compared these behaviors but they did not put a name on them. It wasn’t until they both fled to America and worked under Leo Kanner (full circle!) that Asperger read these reports, and published his interpretations and put a name to the set of common behaviors: autism.
Because of Asperger’s development of the terms “high-functioning” and “low-functioning” persisting into society, it perpetuates the idea that “higher-functioning” individuals needs can be invalidated because they can pass as “normal” while “lower-functioning” individuals are denied access to meetings about themselves because they are “incapable.” Therefore, the usage of verbiage today is very important: changing autism from a condition to an identity can turn the term to be more positive rather than negative, instead of asking why an autistic person won’t do something, maybe asking what barriers are in the way, and so much more. There is so much more to improve in our verbiage and our attitude in order to make life easier for our autistic peers.
It was a short one this time, but thank you for reading, and until next week!
Post 6: Blog 5: Nazi Influence on How We View Autism Today
Hi everyone! This week I focused on really finishing Asperger’s Children, and as I continued reading this week, I found some parallels between Nazi society and society today. This week I’ve also started on a progressive outline to start drafting out what my final draft looks like.
In the Nazi society, I’ve realized that there was a lot of emphasis on sameness. Everyone was required to be “normal” and had to strictly adhere to Nazi ideologies. Children that were discovered to be unable to conform to Nazi standards were taken away from their families and were sent to facilities. We all know what happens in those facilities: they somehow end up dead one way or another if they were unable to “rehabilitate” to follow Nazi regime. Though our society today does not require us to strictly adhere to any particular ideologies, our society strictly emphasizes the idea of children growing out of their “quirks” to become “normal” or “neurotypical.” Those who are unable to “grow out of their quirks,” are considered to be “abnormal” or “childish” and often, many autistic individuals are hit with these remarks due to some being unable to conform into this social standard. Our society seems to be discreetly ableist and I believe that it does originate from the type of society that autism was first discovered in and who it was discovered by: Asperger.
In order to try and dismantle the ableism that many autistic people may face in society, changing our language is first, as mentioned in the prior weeks. As we start to change our verbiage and how we refer to autistic individuals, we slowly change our mindsets; however, that alone may not be enough. A lot of the time, autistic individuals are often excluded from meetings that determine the course of their life. Some may argue that some autistic individuals are unable to make their own decisions for reasons such as being nonverbal, and it is the stigma and often ignorance that is often perpetuated in society. By being inclusive to autistic individuals and allowing them on panels to make big decisions about their own life, we are able to tackle the social stigmas one by one.
Through a combination of my interview, my readings, and my volunteering experience, I have learned a lot about autism so far. Starting from this week, I will be working on my outline in hopes to structure my thoughts better for my paper! I’m excited to move from reading to writing!
Thank you for reading, and until next week!
Post 7: Blog 6: Patience is a Virtue
Hi everyone! This week I started working on the first part of my progressive outline and decided to split my paper into four main parts, based on my four main questions. Based on the question, I organized my interview response, my daily journaling, and my notes from reading into broad ideas that I aim to tackle more in depth when I start the second part of my progressive outline. Through what I’ve laid out so far, I am going to start doing some more research on two other essential people in the history of autism (Leo Kanner and Grunya Sukhareva), the current state of autism research and genetics, and the difference between stimming and fidgeting.
Patience is really an important virtue to have, and on special occasions, we may see success. This week, I got to work with one particular student during science and it really tested how patient I was willing to be. I’ve noticed how he sometimes doesn’t participate in the activities that the class does in science and instead plays with his toys, so I was determined to work with him. On a particular day, we had the opportunity to read magazines, so I took two random animal magazines and held them in front of him so that he could choose which one he liked better. It took a while for him to respond and choose since he liked playing with his car, and although taking his car might be a way to get him to respond quicker, I chose to be a little more patient and repeatedly addressed his name and asked him to choose a magazine.
After much repetition, he chose a praying mantis magazine and I began reading the magazine to him. A lot of the time, he seemed to be looking around and seemingly not engaging when I read to him. After a couple pages of not engaging, when there was a question to count the amount of legs that the praying mantis had, I pointed to one of the legs and the student started pointing at all the legs. We repeated this with the antennas and as I continued to read, he would occasionally point at parts of the praying mantis that he found interesting. It took a lot of repetition for him to look at the magazine and eventually engage in reading, but I had a lot of fun working with this student. A bonus in my head was that by the end of science, I realized he hadn’t taken off his socks or shoes, which is a usual habit for him whenever he enters the classroom. A goal for him was to have him sit on a chair for longer periods of time and also try not to take off his socks and shoes immediately upon arriving at the classroom, and I think we’re starting to achieve that goal little by little! Success is often different for each person and in the classroom, it’s often a lovely and exciting experience to witness.
It was a short one this week, thank you for reading, and until next week!
Post 8: Blog 7: The Ideological Effect on Autism
Hi everyone! This week, I focused on Part 2 of my progressive outline, where I started adding all my evidence from my readings to support my answers. Since I took notes directly on PDFs, I am simultaneously filtering between information that I need to support my responses and information that is interesting, but doesn’t really answer my main questions. Additionally, after finishing Part 1 of my progressive outline, I decided that instead of reading more books, I was going to do more research on certain areas that I think many of the books that I have already read did not cover.
For example, I wanted to do more research on the phases of autism, and study how and why we made these shifts from autism. Why and how did we start to view autism in a more positive light? Was it because of the increase in research on autistic children and individuals? Was it because we started to get an increase of advocates that started to speak on their experiences? Having read a book written by a passionate researcher who studied autism from the 1940s all the way into the 2000s, Dr. Ritvo really highlighted the practices and diagnostics he conducted to study what made autistic children different from other children. I definitely will refer to his work when trying to figure out how our understanding of autism shifts. One of the pioneers in the autism and science field is Temple Grandin. She is most well known for coming up with a more humane way of caring for livestock and speaking about her experiences as an autistic person. I plan on watching a few of her interviews to not only hear about her experiences and what autism means to her, but to also hear about whether the perspectives of autism have changed between the 1940s and 1980s (when Grandin’s first book came out).
As I continue to filter through my notes to add to my outline, I discover that a lot of information on our society is complex and stem from different ideologies and theories, all of which greatly affect how we view autism over time: fascism in Germany and Austria, neoliberalism in America and the UK, using the Medical Model of Disabilities, and so much more. With much deliberation, I have decided to focus specifically on these three ideologies and theories, as they were the most prominent in shaping how we view autism. Fascism shaped society to alienate those who were different from us; neoliberalism shaped society to believe that we are responsible for our health, that we can only adopt the “sick role” if we are striving to recover and if one’s illness has no way definite path of full recovery, they are stigmatized; finally the Medical Model of Disabilities shaped society to believe that disabilities stems from the person and that there is a treatment or cure that can be used or developed to “fix” themselves. All of these ideologies circle back to fitting into society, being normal, and any person that is abnormal is pointed out to be fit under a classification and are to be rehabilitated to fit into society.
Thank you for reading, and until next week!
Post 9: Blog 8: Filtering Through Information
Hi everyone! This week, I focused on finishing and finalizing Part 2 of my progressive outline for review. As mentioned last week, a lot of the notes I took and highlights I made during my readings contained important and interesting information, however a lot of it is not directly answering my research questions.
Going into my project, I knew I was going to be encountering a lot of information and a lot of moving parts about our society, autism, and neurodiversity. Everything is so complex, and there is not one root reason or ideology that can be identified as the sole cause of such distaste of those who are not “normal” or conforming to the norm. It is influenced by many, many different reasons and I decided to focus only on three main ones that stood out to me.
In the beginning of the week, I felt overwhelmed by what I wanted to include in my project; I added many more topics to my outline that I did not have in Part 1, and though I said I would filter through information last week, I still added quite a lot of notes that may or may not be relevant to my questions. After meeting with Mr. Betcher, we decided that before I move on to Part 3 of my progressive outline—where I start cutting down evidence I don’t need and actually synthesizing evidence together—I should write my responses to each of my questions. By doing this, I can clarify what notes and evidence is substantial to my project and what is not by seeing if the evidence is relevant to the answers I give to each question.
I wrapped up this week by reflecting on my answers to the project and my own experiences in volunteering. As next week rolls around, I’m going to start synthesizing my sources together and cutting down on information I don’t need. By the end of the week, I aim to start working on a draft of my final paper.
Thank you for reading, and until next week!
Post 10: Blog 9: The Infuriating Example of Today's Perception
Hi everyone! This week, I focused on cutting down evidence that I didn’t need for my paper, drafting my own responses to my questions, and getting started on the first draft of my paper. Additionally, I also read some articles on a recent conference that Robert F. Kennedy has spoken at, and what he has to say is a bit infuriating… in my humble opinion!
To briefly summarize, RFK believes that autism is a type of illness due to the “epidemic” of children being diagnosed with autism. He aims to work with the NIH to collect and analyze our populations’ health records and discover the “environmental toxin [that] is to blame” (Stein and Worth) to identify the cause of autism. As I read through multiple articles of his conference, I find them incredibly frustrating, but when I take a step back to reflect on what I’ve learned and what I see currently, I can see a lot of the ideologies that I’ve read about reflected in RFK as he gives his opinion on autism.
RFK’s view on autism as an illness reflects the influence of the medical model on society, treating anything that isn’t socially normal as a disease or illness that must and can be cured. But why would RFK think that, especially as many professionals claim that the “epidemic” of autistic children is due to the fact that our society is getting better at recognizing the signs and diagnosing children from an early age? RFK takes advantage of the gap that there isn’t much science and genetics supporting the reason why autism develops in some people and not in others. Additionally, he probably looks back at the past and sees that there were less people diagnosed with autism, and thinks that whatever we did in the past was helpful in “mitigating” autism (which is so untrue), which is why he is investigating “environmental toxins” that could be to blame.
When describing autistic children and what they cannot do (e.g. unable to throw a baseball, go to the bathroom on their own, etc.), it’s so frustrating to hear how RFK completely invalidates the whole autism community and throws all autistic people into this one stereotype. Again, autism is a spectrum, and nobody is going to be the same: some autistic individuals may be able to do certain things that maybe others on the spectrum cannot do, and it shows that generalization can do more harm than good. This mindset reflects the neoliberalism view, as he seems to only see autistic individuals who are incapable of fitting in and unable to function in society on their own. Additionally, there are cuts to Medicaid and closing of Administration for Community Living, two programs that specifically assist those with autism. Neoliberalism showing through at its finest.
However, even with all this thinking, I don’t think I can understand how RFK comes to the conclusions that he does, even with professionals opposing his statement. There is so much nuance from everything he said at the conference, down to his main supporters, and it is so interesting to see how many of the ideologies that I've read about are becoming more prominent in society (especially after this conference). I think RFK' conference will become an example in my paper of how some people in modern day perceive autistic individuals.
Thank you for reading, and until next week!
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Post 11: Blog 10: The Project Ends, But My Journey Won't
Hi everyone! Ten weeks seems to have gone by very quickly!
I started working on my final paper this week, and even as I continued writing, I had to cut down some topics that I just didn’t have to write about. I really wanted to include so much more in my paper but the time restraints really made me cut down a lot of what I wanted to say, which was a bit saddening and frustrating. Writing the paper that was a culmination of all my research, volunteering, and thoughts is quite a lot. A lot of the time, I couldn’t find the words to express all my feelings and I definitely feel like I repeated a lot of phrases.
However, as the senior project comes to a close, I find myself reflecting on everything, and it seems we as a society have a lot to do. Even if it seems we move in a positive direction for autism, for neurodiversity, sometimes politics makes us take many giant steps back, making our hard work seem so… worthless? It is important that we continue to aid our peers that experience hardships navigating our society, and to continue supporting advocates and self-advocates alike. There is always more we can do to support, so let us take the time to understand, educate ourselves and the people around us, so that we can continue moving forward again.
I spent my last week of volunteering like any other week, and I must admit, I will miss working with these batch of students. I remember my first few weeks were filled with confusion and uncertainty as I wasn’t sure if what I was doing would actually support the students. I learned a lot by watching teachers work with the students, but I’ve also learned so much by working with the students as well. Ten weeks with the students allowed me to get to know each of them and I’ve watched several of them overcome their comfort to try something new.
Volunteering was really always the highlight of my day, even if the day was difficult! My favorite moments will always be when any of the kids are smiling, when they are proud of themselves, and when they reach little milestones. Their road in this neurotypical society may not be easy, but I can only hope that in their future, there will be kind people that are willing to help navigate through the barriers that society may have in store for them.
I’m extremely thankful to all the teachers and students that have guided me on this learning journey, and it can be rest assured that this journey will not be ending like this project is.
Thank you for reading my blogs until the end, and as always, thank you for reading!