Saturday, August 26, 2017

What Charlottesville means to me in terms of White Privilege in the autistic community

The recent events in which white nationalist groups show up to protest in Charlottesville, Virginia armed with torches which resulted in the death of a 32-year old woman, has sparked a lot of emotion and conversations about racism in this country.  Like everyone else, I am shocked that an event in which Neo-nazi and white supremacy groups outwardly express their bigotry towards minorities would happen  in 2017.  I thought the days of  white supremacy, KKK, lynch mobs and overt racism were behind us and were solved by the civil rights movement.    It was hard to articulate my thoughts on this matter and it took awhile to compose a facebook status.    Then again I am not surprised that an event like Charlottesville took place since there still seems to be ambivalence of embracing differences in terms of racial, religious views,sexual orientation as well as disability that takes place in this country. These recent events in Charlottesville  has prompted me to think about how America in the 21st century still supports a structure that favors Anglo whites.  More specifically,  Charlottesville made me examine in how white privilege dominates the autism conversation and community.    It is with these thoughts which will shape the subject of this post.  I just want to issue a trigger warning since some parts of this post might come across as scathing and might make some readers uncomfortable or defensive.   In particular, the examination and questioning  of white privilege might make some of my white readers uncomfortable.  This is just an opinion piece from my perspective and observations.  It is not my intention to accuse whites as being racist. In my own life, I know a lot of white people who are all around good people.  This post is critiquing the power structure of white privilege and  not specific white individuals.
 Like everywhere else in society, white privilege is present and dominates the autism community.  This is prevalent in the fact that ethnic minority children tend to be overlooked for diagnosis and that white upper middle class families are more likely the ones to receive early diagnosis and services.   Getting a formal written diagnosis of autism is a privilege in of itself since it is the gateway to receiving services and supports.  This is due to the fact that Leo Kanner, the clinician who helped play a big role in the formulation of autism as a formal diagnosis category wrongly assumed that the disorder was more common in upper middle class white families.  The consequence of Kanner's actions is the reason why autism is a "whitewashed" disorder.  This attitude and belief still pervades today in the 21st century.  It also doesn't help that the media reinforces white privilege when it comes to autism by frequently portraying Caucasian male characters in film and television.    The structure of white privilege is very powerful because it affects the conversation and priorities on autism as well as whose stories or  narratives get told and recognized in the greater autistic community.

As a Japanese American autistic self advocate, I have noticed over the years that the majority of diagnosed autistic people are overwhelmingly white.  However, it wasn't until I got involved in self advocacy that I realized how rare and uncommon someone like myself was since there are not too many self advocates of color in general.  I also realized how extremely lucky I was to have received an early diagnosis since as I discussed earlier that autistic children of color rarely get an early diagnosis.  Going back to the relative absence of self advocates of color, it is hard for people like myself to get the recognition in the autistic self advocacy movement.  When you think about it, the most widely recognized autistic self advocates who are frequently asked to present at conferences are Caucasian and almost always come from privileged backgrounds and have advanced degrees.

A well known example of this is Temple Grandin.   While I admire Temple Grandin for setting the path  for other autistic self advocates, I find it problematic that the greater autism community treats her like an "autism Jesus" in which her teachings and views are equivalent to the holy bible on autism and  should be applied to all autistics.   As a result other autistic voices (particularly those of color) are often overlooked or not given much attention.  As Lydia Brown states in her post "Critiquing Temple Grandin," a large part of Grandin's widespread recognition is connected to her race and social class.   Echoing Ms. Brown's sentiments, Grandin grew up in a very wealthy background which afforded the privilege to get her where she is today.   Her  family was able to afford a nanny to work extensively with Temple to develop her social and self care skills (which can be equivalent to the 40 hour a week ABA that often is prescribed to autistic kids).   She also went to a prestigous boarding school (another luxury afforded to the most privileged families) where she met her science teacher who played a big role in Temple's decision to pursue a career path  in animal science.  Most families (especially ethnic minority families) are not able to afford some of the luxuries Temple was given.  Although my family's income was modest, there was no way that my parents could afford to send me to a boarding school or have a nanny due full time ABA with me.  In fact they did not want to go down the route of spending a lot of money doing  an  extensive therapy regiment on me because it was too expensive and too intrusive for us.    In sum,  the  overemphasis on white self advocates such as Temple Grandin prevents the voices  of autistic self advocates of color from getting recognition.

Another example in which I believe white privilege infiltrates the autism community, is that the most well known and largest autism charity  Autism Speaks was started by  Bob and Suzanne Wright who also come from a very privileged background as being former news anchors on NBC.    Being former TV news anchors affords them the privilege of being connected to Hollywood as well as celebrities.     The backing of celebrities allowed Autism Speaks to have so much influence on how autism is discussed in the greater society and why they were allowed to perpetuate negative messages about the condition for so long.  Most importantly, they played a big role in how funding was allocated for autism research in terms of finding causes and cures and early intervention.    As a consequence of this, there is relatively little research that is adequately addressing the needs of autistic adults.  Autism Speaks does relatively little to address the priorities and needs of the autistic community.  I feel that they don't do enough to address disparities in autism diagnosis among ethnic minority groups as well as addressing cultural gaps and barriers to getting the right services and accommodations.  This is why there are smaller disability rights groups that exist because I feel Autism Speaks is too busy hosting expensive Galas and national walks.  In sum, the reason why I believe Autism Speaks grew up to be a very powerful organization is because of its roots in white privilege.

The events of Charlottesville has made me examine the power structure of white privilege in the very community that plays a big role in my life: the autism community.   Although the reference to Charlottesville might not make sense to some readers ,  I just wanted to get people to think more deeply how the autism community is geared and tends to favor upper middle class white families.  We need to be better at  recognizing and addressing cultural barriers that so often effect ethnic minority families in obtaining a diagnosis as well as services and supports for their kids.  The best way to this is that we need to reach out to these families and educate them on the signs of autism as well as resources that are available in the community.  The good news is that  there are organizations and projects going on that are attempting to address these issues.    Most importantly, there needs to be more resources to empower and develop autistic self advocates of color.  By having more autistic self advocates of color will send the message to society that autism is not exclusive to Caucasian Americans.    Lastly, I want  whites to act as allies and to use their privilege to address inequality and prejudice both in and outside the autism community.   Like I mentioned earlier, I know plenty of whites who  are empathetic and want to help  close the racial gap that is currently present in the autism community.    If we work together, we can accomplish our goals on equality faster.  I hope this post has opened people's eyes on the inequality that still exists in the neurodivergent community.

Some Helpful Articles that address the race problem in autism :

  • "Autism's Race Problem" -Pacific Standard

  • "Autistic Girls of Color: Missing from Media Narrative"- Leanne Libas

Image: The first Anthology consisting of autistic writers of Color produced by the Autism Women's Network

Monday, August 14, 2017

Communication Challenges as a Verbal Individual on the Spectrum

In thinking of other topics I could write about on this blog,  the list is endless.  However, I want to discuss a topic I feel that is applicable to a lot of people across the spectrum.  It is about communication challenges and trying to articulate complex feelings.  Although I have normal verbal abilities and can participate in a back and forth conversation most of the time,  I still have communication challenges in which speaking can be hard sometimes.  It tends to occur when I try to communicate deep personal feelings or desires but do not have the right words (or word choice) to verbally convey what I want to say without people misunderstanding or wrongly misinterpreting my intentions.    It also doesn't help that when you are tired and exhausted (as I am currently feeling as I am writing this post), getting the words out is even harder.   

Going back to my previous statement of  not having the right word choice in communicating my thoughts,  I had personal experiences that resulted in me being frustrated or misunderstood in conversations between my parents, therapist and others close to me as a result of this discrepancy between the thoughts in my head and what comes out of my mouth.   On the other side, people would often be perplexed because they don't understand what I am saying.  There are multiple ways to combine words to communicate a single thought.  Because of this, the words come out jumbled and mixed which makes it hard to verbally form a coherent sentence.

Anticipatory anxiety about how the other person would react if I share my thoughts is another factor that can effect my verbal communicative abilities.  "What if he/she doesn't get it?" or "What would other people think if I share my personal thoughts?" are thoughts that swirl around in my head when I am about to enter an intense conversation.  These invasive thoughts due to anxiety prevent me from thinking clearly on communicating my thoughts that I end up pausing or stumbling in the middle of the conversation figuring out what I should say next. 

In general, when the anxiety or figuring out how to verbally communicate intimate and emotional thoughts becomes too much I either try to abruptly change the subject or reply "I don't know."  Luckily, the people close to me  recognize when I am using these tactics as avoidance and don't take "I don't know" as an answer or move on to another topic without allowing me to accurately express my thoughts. I like that the people around me don't take what I say at face value and always take the time to allow me to accurately articulate my thoughts into words.

This is why I communicate better by writing, emailing or texting.  As other autistic advocates share, writing is a lot easier because it allows for more time and flexibility to effectively get the words out.  When I am allowed more time to process what I want to say, it removes some of the anticipatory anxiety that can become a barrier to my communicative abilities.  I find that blogging has allowed me to fully express my inner thoughts, desires and emotions that would be too difficult to talk about verbally since I have the time to think about what I want to say and to make sure the words I use will accurately communicate my message in  a way that others will understand. 

I wanted to write a post about my personal challenges with  verbal communication to get people to understand that  communication difficulties are not exclusive to those on the spectrum who are nonverbal or have limited verbal abilities. So-called "high-functioning" individuals on the spectrum have these issues also.  In fact, communication challenges is a core feature of autism spectrum disorders.  Just because on the surface I have normal verbal abilities doesn't mean what I say always reflects how I am thinking or feeling inside.  I also wanted to share my experience in case other individuals on the spectrum run into these challenges in their day-to-day lives.


Sunday, August 6, 2017

My review of the Emoji movie and what it can teach us about the idea of normal

Last weekend, I went to see the Emoji Movie.    Despite its extremely low scores on movie review sites such as Rotten Tomatoes (it has a 1 star rating), I decided to bite the bullet since I am a fan of both animated films as well as emojis.   I don't go by ratings and reviews when I decide if a movie is worth seeing  but more about the aesthetics or genre of the film.    Overall, the movie was surprisingly good.  I was shocked about the deep messages embedded in the film which I am about to explain in more detail below.

To give you a brief overview of the plot,  the film takes place inside the phone of a 14-year old teen boy named Alex and the city of Textropolis (where all the emojis live).  The film is taken from the perspective of Gene who is suppose to be a"meh" emoji but ends up making up more than one emotional expression.  He aspires to be a working emoji in which his expression is used in text messages.  However, an incident happens on his first day on the job which resulted  in making the wrong emotion.  This incident made him a "laughing stock" among the other emojis who ultimately ostracize Gene.  Gene soon becomes ashamed of who he is and wants to go to the cloud to get reprogrammed so he can function normally.  He enlists two friends who accompany him: High-Five a handshapped laid back emoji with an Australian accent (who wants to be a "favorite" or frequently used emoji) as well as a gothic  code breaker named Jail-Break.  The three of them journey through the dimensions and worlds of the various apps that occupy Alex's phone to get to the cloud. Throughout the journey, Gene begans to realize the innate gifts of his idiosyncracies (the ability to make multiple emotional expressions)  with the assistance of Jailbreak.  His quirks is what ultimately saves the rest of the emojis from a threat that affects the entire phone.

I personally enjoyed the movie because of its overlying central message of embracing differences and that everyone has their place in society.    As someone on the autism spectrum who is programmed differently from everyone else, this message spoke volumes to me.  Growing up, I was made to feel that my different way of looking at things was not valued and that if I were to have friends and live a good life then I must conform and be like "everybody else."  Gene was made to feel ashamed of his natural ability of making several different emotions because emojis were only programmed to make one expression.  In the beginning of the movie, you can sense the other emojis' negative reactions towards him (ignoring him, making fun of him etc.).  I loved that he eventually finds two friends who embraced his differences and helped him appreciate his idiosyncratic way on looking at the world.   In my own life, I am lucky to have supportive family and friends who are helping me get to a place of acceptance and see the good of my autism.  However, the character I admired was Jailbreak who played the biggest role in getting Gene to see the good of his unique abilities.  She is also different and views herself as an "outcast" in the emoji city of Textropolis.  In my own life, Jailbreak reminds me of one of my friends who is on the autism spectrum who embraces my unique abilities and gets me to see the "good" of my abilities.  The emoji movie did a great job by emphasizing a supportive community and that you don't get to the point of acceptance without help and assistance from others.

Another central message of the film that I admire and can tie into neurodiversity is that everyone has their place and can contribute to society.  This was evident in the ending of the movie.  Gene realizes that his unique ability to make several emotions has value and ends up saving everyone in Textropolis.  How this ties into autism, is that autistic people have unique talents that can be valuable contributions to society.  Too often these abilities are overlooked and as a result there is a huge unemployment rate among the autistic population.  I liked that Gene was given a second chance of getting his emotional expressions used  as a text message and ultimately was successful.  In my own life, I liked that my current workplace gave me a chance and opportunity at being a behavioral aide despite knowing about my autism diagnosis. They saw that I had a unique perspective and saw my autism a valuable contribution in getting to help kids.  I loved that the emoji movie really delved into this topic of value and worth in those who are not considered "normal" or "different."

In sum, the Emoji Movie is probably one of  the few animated films for children that has invaluable lessons alongside other films like Inside Out, Finding Dory and Zootopia. It teaches children to accept and embrace people who are different.  But more importantly,  the emoji movie makes us challenge the idea of "normal."  I like that we are heading in a positive direction and that more people are challenging the prescribed and arbitrary "rules" of society.    Being "normal" and "like everyone else" can prevent us from being creative and finding new solutions to current problems.  This is what I took away from seeing the Emoji Movie.    On the surface it might look like a cheesy kids movie, but it has some insightful powerful messages that  even adults can takeaway.   If anyone wants to see another powerful animation and cares about neurodiversity, then I recommend this film.