The team at NeuroNav had a birthday surprise for at the Team Meeting today.
it was "Hari Bingo"
A Bingo Surprise
IACC member
I got selected to be on the Interagency Autism Coordinating Committee as a non-federal member.
Excited at the opportunity to contribute towards lot of meaningful changes.
I got mentioned in a Time mag article and more
TIME Magazine (Sarah Kurchak), February 25, 2021
- ("In the interest of fairness, I did watch Music for the sake of this piece. I won’t evaluate it as representation, as I believe that non-speaking autistic people should be leading that conversation. (For more on the topic, I recommend starting with the short film produced by CommunicationFIRST and the essays by Mickayla and Hari Srinivasan.)")
The Independent (Helen Brown), February 25, 2021
- As the film’s final contributor, Hari Srinivasan, concludes: 'If you have a voice, you can use it to help bring dignity back for the members of the more marginalized autistics.' He says that we need to change the narrative around non-speaking autistics and improve visibility in society – and pop culture – so that more actors who might better fill a role like Music in Sia’s film can come to the fore and be seen, and I agree. It’s only those tired old stereotypes that deserve to be crushed.")
Canadian Broadcasting Corporation (Gloria Macarenko), February 18, 2021
- (non-transcripted radio clip) ("One of the big organizations, I believe they are called CommunicationFIRST, ... and they were completely ignored [by Sia]. ... That type of false promise is so damaging for trust in terms of a disability community or a minority community against a majority voice that is trying to talk over us." "As autistic AAC users like Cal Mongtomery, Damon Kirsebom, and Hari Srinivasan said in the film LISTEN, which was made in response to Sia's film, 'Ask nonspeaking autistics. Listen to nonspeaking autistics.'")
https://cute766.info/disability-visibility-project-montage/
Female Protective Effect in Autism
The "female protective effect" hypothesis in autism suggests that females have a biological or genetic protection against developing autism. This hypothesis is supported by the observation that autism is more commonly diagnosed in males than in females, with a widely reported ratio of approximately 4 males for every 1 female diagnosed with autism. While exact mechanisms behind this protective effect are still being studied, there are several theories, including genetic, hormonal, and neuroanatomical differences between males and females.
One significant area of research focuses on the role of genetic differences, particularly those related to the X chromosome. Because females have two X chromosomes (XX) while males have one X and one Y chromosome (XY), it's theorized that the presence of an additional X chromosome in females may offer some protection against the development of autism. Here's how the mechanism is thought to work:
References
One significant area of research focuses on the role of genetic differences, particularly those related to the X chromosome. Because females have two X chromosomes (XX) while males have one X and one Y chromosome (XY), it's theorized that the presence of an additional X chromosome in females may offer some protection against the development of autism. Here's how the mechanism is thought to work:
- X-Chromosome Inactivation: In females, one of the X chromosomes in each cell is randomly inactivated, which means that it does not express its genes. This process could potentially mitigate the impact of harmful mutations on the X chromosome, as there is a chance the mutated gene is on the inactivated X chromosome.
- Genetic Buffering: The presence of two X chromosomes in females provides a "genetic buffer" against mutations. If a gene related to autism is mutated on one X chromosome, the other X chromosome may carry a normal copy of the gene that can compensate for the mutation. In contrast, males, with only one X chromosome, do not have this potential buffering, making them more susceptible to the effects of mutations on the X chromosome.
- Single-Nucleotide Polymorphisms (SNPs): Research has identified certain SNPs that are associated with an increased risk of autism. Some of these SNPs are located on the X chromosome. The female protective effect could be related to how these SNPs are expressed or compensated for in females compared to males.
References
"Sex differences in autism spectrum disorder: evidence from a large sample of children and adolescents" by Loomes R, Hull L, Mandy WPL. (Journal of Autism and Developmental Disorders, 2017)
"The female protective effect in autism spectrum disorder is not mediated by a single genetic locus" by Werling DM, Geschwind DH. (Molecular Autism, 2015)
"The female protective effect in autism spectrum disorder is not mediated by a single genetic locus" by Werling DM, Geschwind DH. (Molecular Autism, 2015)
Reflections on Societal Stereotyping
So I had a veg La Ratatouille dish for lunch yesterday.
I've been curious about this dish ever since the Pixar movie from childhood. As I was munching, in my mind there was this imaginary "rat"-atouille in the corner of the table, hopping nervously on one foot and anxiously waiting to see if I (the food critic) like the dish. I wanted to assure "Rat"-atouille that the dish was as wholesome as imagined.
The movie had really caught my imagination as a child. There was this rat trying to overturn societal stereotypes as an outcast, a scavenger of society, someone to be avoided. It moves towards being recognized for its talent and the total opposite of societal perceptions.
The food critic being society that is so judgmental of disability or other marginalized groups. A part of us still anxiously waits for approval at every step though that should not be the case.
Another Birthday Rolls By
Many moons ago, I was 5 months.
Now, another birthday just rolls on by.
Enjoyed a veg La Ratatouille for birthday lunch with family at a French Restaurant in Berkeley. Been curious about this dish ever since the Pixar movie.
Got a lot of wishes on FB/ IG & Twitter
What really made my day was this Card from the Spectrum Board.
This is what Belonging starts to look like
Wanted to share this card that my peers (neurotypical & autistic) at Spectrum at Cal made for me for my birthday . What I really appreciated was that it was an acknowledgement of care from my peers who put in time and effort (instead of a facebook like) to organize and bring together this multi page card with thoughtful messages. That they cared enough to do that was just so so unexpected and deeply touching. I just loved it. Really the best bday card I have ever received.
This is what "Belonging" starts to look like!!
This is what "Belonging" starts to look like!!
Bias in Autism - Implicit and Explicit Bias.
Bias in autism can broadly be categorized into implicit (unconscious) and explicit (conscious) bias, both of which play significant roles in perpetuating inequality and discrimination. Implicit Bias refers to automatic and unconscious attitudes or stereotypes that influence behavior and decision-making, often to the detriment of autistic individuals by perpetuating stereotypes and inequities. Explicit Bias involves conscious and deliberate prejudices or discriminatory actions against autistic individuals, leading to overt discrimination, stigmatization, and exclusion. [Read more on Implicit and Explicit Bias]
PlainSpeak: Bias in autism can be divided into two main types: implicit (unconscious) and explicit (conscious) bias. Both play big roles in keeping unfair treatment and inequality going. Implicit Bias means having automatic, hidden thoughts or feelings about autism that affect actions and decisions without realizing it, often causing unfair treatment. Explicit Bias is when someone knowingly and openly has negative thoughts or treats autistic people unfairly, leading to clear acts of discrimination and exclusion [ Read more on Implicit & Explicit Bias - PlainSpeak Version]
A Boy Like Me
In Feb 2021, I wrote an article for Alice Wong's Disability Visibility Project (https://disabilityvisibilityproject.com/2021/02/06/a-boy-like-me/) that covers a number of issues around non-speaking autistics (text of the autism also at end of this post). It went onto having quite the impact.
1. TIME Magazine (Sarah Kurchak), February 25, 2021
("In the interest of fairness, I did watch Music for the sake of this piece. I won’t evaluate it as representation, as I believe that non-speaking autistic people should be leading that conversation. (For more on the topic, I recommend starting with the short film produced by CommunicationFIRST and the essays by Mickayla and Hari Srinivasan.)")
(non-transcripted radio clip)
A Boy Like Me.
Places it was mentioned
1. TIME Magazine (Sarah Kurchak), February 25, 2021
("In the interest of fairness, I did watch Music for the sake of this piece. I won’t evaluate it as representation, as I believe that non-speaking autistic people should be leading that conversation. (For more on the topic, I recommend starting with the short film produced by CommunicationFIRST and the essays by Mickayla and Hari Srinivasan.)")
2. The Independent (Helen Brown), February 25, 2021
As the film’s final contributor, Hari Srinivasan, concludes: 'If you have a voice, you can use it to help bring dignity back for the members of the more marginalized autistics.' He says that we need to change the narrative around non-speaking autistics and improve visibility in society – and pop culture – so that more actors who might better fill a role like Music in Sia’s film can come to the fore and be seen, and I agree. It’s only those tired old stereotypes that deserve to be crushed.")
3. Canadian Broadcasting Corporation (Gloria Macarenko), February 18, 2021
(non-transcripted radio clip)
("One of the big organizations, I believe they are called CommunicationFIRST, ... and they were completely ignored [by Sia]. ... That type of false promise is so damaging for trust in terms of a disability community or a minority community against a majority voice that is trying to talk over us." "As autistic AAC users like Cal Mongtomery, Damon Kirsebom, and Hari Srinivasan said in the film LISTEN, which was made in response to Sia's film, 'Ask nonspeaking autistics. Listen to nonspeaking autistics.'")
Full text of the article
A Boy Like Me.
by Hari Srinivasan
One morning in late November 2020, I woke up to find that my rather modest twitter account had somehow gained around 1500 followers overnight. The final exams were upon me and various projects and papers were coming due, so I was not quite “woke” to what was going on outside my academic bubble at UC Berkeley, at least not till the exams were out of the way.
It turned out that I had been mentioned in a conversation by Julia Bascom, the executive director of the Autistic Self Advocacy Network (or ASAN) of which I am also a board member. The conversation had been about a trailer released by the Australian music artist, Sia, for a musical titled “Music,” which featured a nonspeaking autistic character, also named Music. The twitter furor was over the fact that a non-disabled person, specifically a non-autistic, had been cast in that role of a nonspeaking autistic character. And it seems, the movie has received a Golden Globe nomination.
There was all kinds of wrong in the above scenario and for me almost a sense of deja vu. It immediately brought to mind the 2005 documentary, “A Girl Like Me,” by Kiri Davis that we had seen in my Stigma and Prejudice class at UC Berkeley. The point of the documentary was the lack of authentic representation of Black girls in the media, including even their hair and facial features. After all, the media often shapes how we view ourselves and how others around us view and esteem our place in society. When there is lack of representation or improper representation, it directly feeds into the internalization of stigma, where your membership in a group is the very cause of your negative self-esteem, feelings of inferiority and even feelings of self-hatred. In fact, in a 1940 study by Kenneth and Mamie Clark studying self-perception of race, Black girls had identified White dolls as preferred and good, while Black dolls were less preferred and associated with bad. That study went onto becoming part of the testimony used in the 1954 Brown v. Board of Education Supreme Court ruling.
Growing up, I too have wondered on the lines of “A Boy Like Me.” Where was this boy I could look up to and emulate from in books, in movies, and on TV? Someone who had to navigate the world of limited spoken communication skills and perhaps brown too? Did a boy like me even go to college and dare to dream of accomplishing great things? Where was this boy like me? I only saw Stephen Hawking on the one end and then Sheldon Cooper of the Big Bang Theory on the other.
When they did include a nonspeaking autistic character in a movie, it usually traumatized me. The focus was invariably a meltdown by the autistic accompanied by a helpless looking able bodied person that the audience sympathized with and rooted for. The meltdown was the entertainment value which gained brownie points and built character for the long-suffering caretaker.
So the fundamental question remains – do meltdowns, whether it is due to sensory overstimulation or any other reason, define the entirety of the nonspeaking autistic who is still a living, breathing and thinking individual? If such sensationalized scenes are the only images being flashed over and over, in movie after movie, what impression is being cemented about the members of this group to the rest of society? What kind of opportunities can this group hope to have if society deems them incapable or is even fearful of them at the door itself? Will they ever be allowed to be included and visible in mainstream society? What about the potential internalized harm and trauma of this stigma for members of this group?
The fact of the matter is that many nonspeaking autistics can be contributing members of society too, and go onto accomplishing much, for those who desire and are given the right opportunities to do so. Negative and fearful stereotypes result in gatekeeping of both opportunities and acceptance. Besides, the worth of an individual should not be based on their ability to contribute. Some autistics simply can’t due to the nature of their disability and that’s ok. The point being that every human life (abled or degrees of disabled) has value and this is the message that needs to be portrayed in plot lines of movies and TV. One of the things that stood out to me in my Stigma class was how continued and frequent exposure to exemplars of the category would help reduce and replace that automaticity of connection which in turn would reduce prejudice. Which basically means nonspeaking characters in plot lines need to be shown as being creative, being innovative, being involved in the community, going to college, working in new innovative and non-traditional ways, and doing great things; with all of these images presented continually and frequently in order to change mindsets.
I’m one of those nonspeaking autistics or minimally speaking autistics. I can maybe speak a dozen “want phrases” and repeat or read out a few other phrases after much practice but holding down a full length meaningful conversation using “speech” is still a work in progress for me. I would very much like to recite my poetry in my own voice and get to some basic talking conversational skills, so I keep practicing. Having to type every thought can be time consuming and exhausting, devices can be unpredictable, they are not readily accessible the way your tongue is and batteries die. Then there is my body which itself can often feel like a car with a loose steering wheel, I never quite know which way it will decide to go with a brain-body disconnect, oral-motor apraxia, repetitive body movements and sensory dysregulation issues. Meltdowns are part of my existence, and I have struggled with them.
But I’m also a student at UC Berkeley, excelling at academics and I get to do many things including being a student journalist and being part of research labs and advocacy. And get this: I teach a class on autism as a student instructor, which is a societal oxymoron, as teaching and nonspeaking autistics are not thought possible together. Me as a teacher – well, that thought startles me all the time too and seems almost unreal and temporary, an internalized cognitive dissonance, as maybe I am still caught up in my own internalization of stigma built up over the years in the special education system where negative stereotypes are often perpetuated, whether knowingly or unknowingly.
The other, though less annoying, stereotype of the nonspeaking autistic is the large headphones that we all apparently must wear. There is no factoring in of individual differences or situational differences. The message being sent is that you can whisk away sensory differences by plopping noise-cancelling headphones on a nonspeaking autistic’s ears. Problem solved and a pat on the back! Unfortunately, it doesn’t work that way as some sudden sounds can end up being magnified. Let me illustrate with an example. In all earnestness I wore headphones to my first college football game to help dampen out the crowd noise. Then came the cannon shot, fired in celebration right after a touchdown, which ended up magnified in my headphones. I got the fright of my life, my heart was racing so fast I thought I would just keel over and my eardrums would burst as I raced out of the stadium in agitated alarm. As I heard and read later, noise cancelling works by phase cancelling the peaks and valleys of regular repeated sound waves, but are less effective with sudden unexpected peaks, the cannon shot in this case, which I’m guessing sounded even louder in contrast to the other dampened noises.
Coming back to Sia’s movie, while I have not seen the film, the reviews I read are troubling as the film seems to reinforce societal negative stereotypes about autism, agency, disability as a burden, and about “sending the more difficult autistics away” to a facility, at the convenience of the caretaker, where they can be tucked out of sight and out of mind of society and rendered invisible. The film features not one but three entertainment-value meltdowns. BUT OF COURSE (sarcasm intended)! For me, it will be another traumatizing movie featuring plot lines to avoid.
What is also worrying about Sia’s film is the apparent use of restraints, which is very reminiscent of the residential Judge Rotenberg Center where GED devices (for electric skin shocks) were routinely being used as aversives in behavior therapy. In fact, getting congress on board to urge the FDA to finalize its rule on banning these electric shock devices by the JRC was one of the issues my 2019 ASAN cohort (at the Autism Campus Inclusion) lobbied for in Capitol Hill. While the FDA did finally finalize its rule towards banning these specific electric shock devices last year, it does not preclude other forms of punishments, harsh aversives, or restraints by the JRC or any facility. In fact, another legislation my ASAN cohort had lobbied for at Capitol Hill was KASSA (Keeping All Students Safe Act) which would hold schools accountable. With respect to Sia’s movie, ASAN, Alliance Against Seclusion and Restraint and CommunicationFIrst, the only nonprofit organization dedicated to protecting the civil rights of people who do not rely on “speaking” to communicate, issued a joint statement calling the portrayal of restraints as dangerous as such media portrayal by a Golden Globe nominated movie would help normalize the use of restraints against the disabled in the public psyche.
The disability community has long argued for positive and proper representation of disability in the media. Check out the Ford Foundation white paper on authentic and positive representation by legendary disability rights activist, Judy Heumann. Representation was also a much discussed topic in the events organized around the celebrations leading up to the 30th anniversary of the Americans with Disabilities Act last year (here is one review I wrote for the Daily Californian).
The essence of authentic representation is that a disabled character in a movie plot be played by a person who actually has that disability, just as a White person can’t be an authentic representation of a Black person. It is the whole idea and hope for “A Boy Like Me.”
When the trailer for Sia’s musical came out, there was much outrage amongst the disability and autistic community in that an autistic should have been used to play the nonspeaking role. There were even news articles and interviews with some autistics apparently saying they were available and would have easily played that role if only they had been called by Sia.
Let’s pause a little here – we know that autism is such a wide spectrum where the lived experiences of a speaking autistic can be different from that of a non-speaker, each individual with their unique level of support needs in other areas. For instance, using AAC (augmentative alternative communication technology) is by no means as simple as is portrayed in the media with the stereotype of a limited set of icons on an iPad screen that apparently takes care of every possible communication need of a human across every scenario. Our emotional bandwidth itself is reduced to just a few emotion icons much like Facebook. You have to turn the device on, get to the correct app, clear the screen and hope the app does not freeze on you at a critical moment. The reality is that it’s not always available or accessible, or just plain difficult to navigate, so that is a whole set of additional issues to contend with along with other autism issues, topped off by anxiety in having to manage all these in a real time conversation even as the other person is staring impatiently at you for a quick response not realizing that AAC is never going to match the speed or ease of talking. The point being, how does that former autistic become an authentic representation of the latter nonspeaking autistic? How is that “A Boy Like Me?” Aren’t we just being a little ableist here?
I don’t know if there are many nonspeaking autistic actors out there. For instance, I may be a good writer and storyteller but would make for a terrible actor. Other intersectional identities, abilities and interests may mean that not every nonspeaking autistic actor is a match for every role that comes up.
I recognize that there are no easy or quick solutions when it comes to actors as you have to match up many things. But we can try to involve non-speaking autistics in other parts of media representation about them, even if there are not sufficient numbers of nonspeaking autistic actors to make it to the front of the camera at the moment. For example, in animated movies, I would like to see more non-meltdown focused plot lines. The representation must be both authentic and positive. How about turning some of these perceived negatives into positives? Maybe that heightened sensory perception can be used to sense clues and solve crimes in a detective story for instance, whether as a main or supporting character. And as soon as I wrote that sentence, my mind started thinking of many positive plot lines.
The disability rights movement has been about speaking “with” the marginalized group by being their ally, and not “for” them by removing agency. What I would like to see from my speaking autistic allies is outrage against such plot lines and stereotyping and helping build better technology that can make communication itself more accessible.
But at a more fundamental level, I would like to see much more outrage by my speaking autistic allies at the invisibility of nonspeakers in mainstream society. I believe this invisibility starts with the use of functioning labels. By labels I refer to the very stigmatizing and dehumanizing functioning label of low functioning. Being branded low sets you up for low educational expectations, low societal expectations and gatekeeping from the get go, it sets you up for lifelong failure. No one willingly labels themselves as low, it is others doing so.
“Low” becomes a self-fulfilling prophecy as shown in the Rosenthal & Jacobson study way back in 1968 – someone’s expectation about a person or group leads to the fulfillment of those expectations. When teachers were told a certain group of (randomly selected) students would do better, they did end up doing better; the better performance was attributed to the teacher’s behavior. By extension, if a teacher is given a child with the “low” prefix, unconscious bias will translate to lower expectations for the rest of that individual’s life.
In addition, terms like “low” will cause an almost priming effect as shown by Higgins, Rhône’s, & Jones (1977). In that study, one group of participants were exposed to, or primed with, negative words like, “reckless and stubborn,” while the other group was primed with positive words like, “adventurous and persistent.” They were then asked their interpretation of a person after reading a rather ambiguous description of him. The positively primed group had a positive image and vice versa. Similarly, in the 1966 Bargh, Chen & Burrows study, when participants were primed with “elderly words” they walked slower after leaving the experiment.
The point: labels influence outcomes!
Remember “high” is a problem too as it is a relative term, its presence implies some sort of superiority and its absence indicates its opposite, which is “low.” So we must get rid of both labels. We need to be autistics together, neurodivergent together, disabled together, humans together.
Clinicians, educators, scholars and therapists still routinely use these functioning labels. If you have a voice, you can use it to help bring dignity back for the members of the more marginalized autistics. Use the power of social media to spread the message. Interrupt the usage of the functioning labels when you hear it and encourage the alternative terminology of “support needs.” And let’s change the plot lines and the narratives around nonspeaking autistics so more and more are allowed to be visible in society and avail of opportunities in all kinds of areas. Then we will truly see more and more nonspeaking autistic actors who will be able to provide us with more positive and authentic representations.
We need to open opportunities for all of us to be included and belong in society. Langston Hughes had said, “I, too, am America;” to which I will add, “I, too, am human!”
One morning in late November 2020, I woke up to find that my rather modest twitter account had somehow gained around 1500 followers overnight. The final exams were upon me and various projects and papers were coming due, so I was not quite “woke” to what was going on outside my academic bubble at UC Berkeley, at least not till the exams were out of the way.
It turned out that I had been mentioned in a conversation by Julia Bascom, the executive director of the Autistic Self Advocacy Network (or ASAN) of which I am also a board member. The conversation had been about a trailer released by the Australian music artist, Sia, for a musical titled “Music,” which featured a nonspeaking autistic character, also named Music. The twitter furor was over the fact that a non-disabled person, specifically a non-autistic, had been cast in that role of a nonspeaking autistic character. And it seems, the movie has received a Golden Globe nomination.
There was all kinds of wrong in the above scenario and for me almost a sense of deja vu. It immediately brought to mind the 2005 documentary, “A Girl Like Me,” by Kiri Davis that we had seen in my Stigma and Prejudice class at UC Berkeley. The point of the documentary was the lack of authentic representation of Black girls in the media, including even their hair and facial features. After all, the media often shapes how we view ourselves and how others around us view and esteem our place in society. When there is lack of representation or improper representation, it directly feeds into the internalization of stigma, where your membership in a group is the very cause of your negative self-esteem, feelings of inferiority and even feelings of self-hatred. In fact, in a 1940 study by Kenneth and Mamie Clark studying self-perception of race, Black girls had identified White dolls as preferred and good, while Black dolls were less preferred and associated with bad. That study went onto becoming part of the testimony used in the 1954 Brown v. Board of Education Supreme Court ruling.
Growing up, I too have wondered on the lines of “A Boy Like Me.” Where was this boy I could look up to and emulate from in books, in movies, and on TV? Someone who had to navigate the world of limited spoken communication skills and perhaps brown too? Did a boy like me even go to college and dare to dream of accomplishing great things? Where was this boy like me? I only saw Stephen Hawking on the one end and then Sheldon Cooper of the Big Bang Theory on the other.
When they did include a nonspeaking autistic character in a movie, it usually traumatized me. The focus was invariably a meltdown by the autistic accompanied by a helpless looking able bodied person that the audience sympathized with and rooted for. The meltdown was the entertainment value which gained brownie points and built character for the long-suffering caretaker.
So the fundamental question remains – do meltdowns, whether it is due to sensory overstimulation or any other reason, define the entirety of the nonspeaking autistic who is still a living, breathing and thinking individual? If such sensationalized scenes are the only images being flashed over and over, in movie after movie, what impression is being cemented about the members of this group to the rest of society? What kind of opportunities can this group hope to have if society deems them incapable or is even fearful of them at the door itself? Will they ever be allowed to be included and visible in mainstream society? What about the potential internalized harm and trauma of this stigma for members of this group?
The fact of the matter is that many nonspeaking autistics can be contributing members of society too, and go onto accomplishing much, for those who desire and are given the right opportunities to do so. Negative and fearful stereotypes result in gatekeeping of both opportunities and acceptance. Besides, the worth of an individual should not be based on their ability to contribute. Some autistics simply can’t due to the nature of their disability and that’s ok. The point being that every human life (abled or degrees of disabled) has value and this is the message that needs to be portrayed in plot lines of movies and TV. One of the things that stood out to me in my Stigma class was how continued and frequent exposure to exemplars of the category would help reduce and replace that automaticity of connection which in turn would reduce prejudice. Which basically means nonspeaking characters in plot lines need to be shown as being creative, being innovative, being involved in the community, going to college, working in new innovative and non-traditional ways, and doing great things; with all of these images presented continually and frequently in order to change mindsets.
I’m one of those nonspeaking autistics or minimally speaking autistics. I can maybe speak a dozen “want phrases” and repeat or read out a few other phrases after much practice but holding down a full length meaningful conversation using “speech” is still a work in progress for me. I would very much like to recite my poetry in my own voice and get to some basic talking conversational skills, so I keep practicing. Having to type every thought can be time consuming and exhausting, devices can be unpredictable, they are not readily accessible the way your tongue is and batteries die. Then there is my body which itself can often feel like a car with a loose steering wheel, I never quite know which way it will decide to go with a brain-body disconnect, oral-motor apraxia, repetitive body movements and sensory dysregulation issues. Meltdowns are part of my existence, and I have struggled with them.
But I’m also a student at UC Berkeley, excelling at academics and I get to do many things including being a student journalist and being part of research labs and advocacy. And get this: I teach a class on autism as a student instructor, which is a societal oxymoron, as teaching and nonspeaking autistics are not thought possible together. Me as a teacher – well, that thought startles me all the time too and seems almost unreal and temporary, an internalized cognitive dissonance, as maybe I am still caught up in my own internalization of stigma built up over the years in the special education system where negative stereotypes are often perpetuated, whether knowingly or unknowingly.
The other, though less annoying, stereotype of the nonspeaking autistic is the large headphones that we all apparently must wear. There is no factoring in of individual differences or situational differences. The message being sent is that you can whisk away sensory differences by plopping noise-cancelling headphones on a nonspeaking autistic’s ears. Problem solved and a pat on the back! Unfortunately, it doesn’t work that way as some sudden sounds can end up being magnified. Let me illustrate with an example. In all earnestness I wore headphones to my first college football game to help dampen out the crowd noise. Then came the cannon shot, fired in celebration right after a touchdown, which ended up magnified in my headphones. I got the fright of my life, my heart was racing so fast I thought I would just keel over and my eardrums would burst as I raced out of the stadium in agitated alarm. As I heard and read later, noise cancelling works by phase cancelling the peaks and valleys of regular repeated sound waves, but are less effective with sudden unexpected peaks, the cannon shot in this case, which I’m guessing sounded even louder in contrast to the other dampened noises.
Coming back to Sia’s movie, while I have not seen the film, the reviews I read are troubling as the film seems to reinforce societal negative stereotypes about autism, agency, disability as a burden, and about “sending the more difficult autistics away” to a facility, at the convenience of the caretaker, where they can be tucked out of sight and out of mind of society and rendered invisible. The film features not one but three entertainment-value meltdowns. BUT OF COURSE (sarcasm intended)! For me, it will be another traumatizing movie featuring plot lines to avoid.
What is also worrying about Sia’s film is the apparent use of restraints, which is very reminiscent of the residential Judge Rotenberg Center where GED devices (for electric skin shocks) were routinely being used as aversives in behavior therapy. In fact, getting congress on board to urge the FDA to finalize its rule on banning these electric shock devices by the JRC was one of the issues my 2019 ASAN cohort (at the Autism Campus Inclusion) lobbied for in Capitol Hill. While the FDA did finally finalize its rule towards banning these specific electric shock devices last year, it does not preclude other forms of punishments, harsh aversives, or restraints by the JRC or any facility. In fact, another legislation my ASAN cohort had lobbied for at Capitol Hill was KASSA (Keeping All Students Safe Act) which would hold schools accountable. With respect to Sia’s movie, ASAN, Alliance Against Seclusion and Restraint and CommunicationFIrst, the only nonprofit organization dedicated to protecting the civil rights of people who do not rely on “speaking” to communicate, issued a joint statement calling the portrayal of restraints as dangerous as such media portrayal by a Golden Globe nominated movie would help normalize the use of restraints against the disabled in the public psyche.
The disability community has long argued for positive and proper representation of disability in the media. Check out the Ford Foundation white paper on authentic and positive representation by legendary disability rights activist, Judy Heumann. Representation was also a much discussed topic in the events organized around the celebrations leading up to the 30th anniversary of the Americans with Disabilities Act last year (here is one review I wrote for the Daily Californian).
The essence of authentic representation is that a disabled character in a movie plot be played by a person who actually has that disability, just as a White person can’t be an authentic representation of a Black person. It is the whole idea and hope for “A Boy Like Me.”
When the trailer for Sia’s musical came out, there was much outrage amongst the disability and autistic community in that an autistic should have been used to play the nonspeaking role. There were even news articles and interviews with some autistics apparently saying they were available and would have easily played that role if only they had been called by Sia.
Let’s pause a little here – we know that autism is such a wide spectrum where the lived experiences of a speaking autistic can be different from that of a non-speaker, each individual with their unique level of support needs in other areas. For instance, using AAC (augmentative alternative communication technology) is by no means as simple as is portrayed in the media with the stereotype of a limited set of icons on an iPad screen that apparently takes care of every possible communication need of a human across every scenario. Our emotional bandwidth itself is reduced to just a few emotion icons much like Facebook. You have to turn the device on, get to the correct app, clear the screen and hope the app does not freeze on you at a critical moment. The reality is that it’s not always available or accessible, or just plain difficult to navigate, so that is a whole set of additional issues to contend with along with other autism issues, topped off by anxiety in having to manage all these in a real time conversation even as the other person is staring impatiently at you for a quick response not realizing that AAC is never going to match the speed or ease of talking. The point being, how does that former autistic become an authentic representation of the latter nonspeaking autistic? How is that “A Boy Like Me?” Aren’t we just being a little ableist here?
I don’t know if there are many nonspeaking autistic actors out there. For instance, I may be a good writer and storyteller but would make for a terrible actor. Other intersectional identities, abilities and interests may mean that not every nonspeaking autistic actor is a match for every role that comes up.
I recognize that there are no easy or quick solutions when it comes to actors as you have to match up many things. But we can try to involve non-speaking autistics in other parts of media representation about them, even if there are not sufficient numbers of nonspeaking autistic actors to make it to the front of the camera at the moment. For example, in animated movies, I would like to see more non-meltdown focused plot lines. The representation must be both authentic and positive. How about turning some of these perceived negatives into positives? Maybe that heightened sensory perception can be used to sense clues and solve crimes in a detective story for instance, whether as a main or supporting character. And as soon as I wrote that sentence, my mind started thinking of many positive plot lines.
The disability rights movement has been about speaking “with” the marginalized group by being their ally, and not “for” them by removing agency. What I would like to see from my speaking autistic allies is outrage against such plot lines and stereotyping and helping build better technology that can make communication itself more accessible.
But at a more fundamental level, I would like to see much more outrage by my speaking autistic allies at the invisibility of nonspeakers in mainstream society. I believe this invisibility starts with the use of functioning labels. By labels I refer to the very stigmatizing and dehumanizing functioning label of low functioning. Being branded low sets you up for low educational expectations, low societal expectations and gatekeeping from the get go, it sets you up for lifelong failure. No one willingly labels themselves as low, it is others doing so.
“Low” becomes a self-fulfilling prophecy as shown in the Rosenthal & Jacobson study way back in 1968 – someone’s expectation about a person or group leads to the fulfillment of those expectations. When teachers were told a certain group of (randomly selected) students would do better, they did end up doing better; the better performance was attributed to the teacher’s behavior. By extension, if a teacher is given a child with the “low” prefix, unconscious bias will translate to lower expectations for the rest of that individual’s life.
In addition, terms like “low” will cause an almost priming effect as shown by Higgins, Rhône’s, & Jones (1977). In that study, one group of participants were exposed to, or primed with, negative words like, “reckless and stubborn,” while the other group was primed with positive words like, “adventurous and persistent.” They were then asked their interpretation of a person after reading a rather ambiguous description of him. The positively primed group had a positive image and vice versa. Similarly, in the 1966 Bargh, Chen & Burrows study, when participants were primed with “elderly words” they walked slower after leaving the experiment.
The point: labels influence outcomes!
Remember “high” is a problem too as it is a relative term, its presence implies some sort of superiority and its absence indicates its opposite, which is “low.” So we must get rid of both labels. We need to be autistics together, neurodivergent together, disabled together, humans together.
Clinicians, educators, scholars and therapists still routinely use these functioning labels. If you have a voice, you can use it to help bring dignity back for the members of the more marginalized autistics. Use the power of social media to spread the message. Interrupt the usage of the functioning labels when you hear it and encourage the alternative terminology of “support needs.” And let’s change the plot lines and the narratives around nonspeaking autistics so more and more are allowed to be visible in society and avail of opportunities in all kinds of areas. Then we will truly see more and more nonspeaking autistic actors who will be able to provide us with more positive and authentic representations.
We need to open opportunities for all of us to be included and belong in society. Langston Hughes had said, “I, too, am America;” to which I will add, “I, too, am human!”
SDP v the Traditional System
An interview with the very knowledgable Will Sanford on SDP v Traditional System (2 parts)
The Happiness Advantage
I'm reading "The Happiness Advantage" by Shawn Achor and wanted to pen my thoughts on it as I read along. And I'm taking the Happiness Advantage DeCal.
Watch this space for updates as I read more
Introduction:
I would title this Waiting to be Happy, which kind of reminded me in a strange way of Samuel Beckett's Waiting for Godot. Essentially Acher says we are living milestone to milestone, in the false sense of belief that next milestone will bring us happiness. We think happiness follows success but the reality is the opposite.
Discovering the Happiness Advantage
In this chapter the author writes of how he saw Harvard as a privilege that can open doors, yet many students lose sight of that, complaining incessantly about the workload. In contrast are the children of Soweto township, a majority of whom loved schoolwork, as many were the first in their family to even get schooling.
I can personally relate. Berkeley is a privilege that I truly cherish and appreciate. The privilege comes with workload, but isn't that to be expected if you go to a top university. I was starved of education till age 12. I was in a special education classroom that still taught me kindergarten level skills even at age 12. It was never expected I would get exposure to mainstream academics, get a high school diploma, let alone a college education. College, and that too Berkeley is a privilege, which adds to my self-esteem, my self-confidence, my dignity. It will open different doors, that are closed in special education. So workload is just a one part of the glorious education. Education itself is a privilege. For this starving mind, the search for knowledge can never end.
Berkeley is my magical place, my Hogwarts and a bonus is that it is the birthplace of the Disability Rights Movement. I look beyond the workload to appreciate the high quality of teaching and the way it expands my perspectives in my world view, how it helps me grow personally, and how it nudges me in my future life towards working on social justice issues and hopefully making into reality positive societal changes too.
I liked how Acher termed Positive Psychology as "what makes people thrive and excel" rather than bringing the focus on the unhappy and bringing them back to normal.
I also feel for instance that Autism/Disability is treated as a deficit model which is very devaluing to the autistic. Team meetings during my elementary years of ABA therapy for instance was invariably dominated with a litany of all that I WOULD NOT or COULD NOT do. Wouldn't it be nice if the child, (who is usually present in these meetings to demonstrate said lack of skill) could also hear a litany of what they CAN DO as well. There are going to be areas that we may never catch up on or never learn. Yet in other areas we may just outstrip our NT peers. It is going to be hard to be average.
A parallel to Acher's "Cult of the Average" in the autism space is meeting the milestone of "age-appropriate behavior," which in itself is a moving target as society shifts attitudes.
As Acher's points out we are starved of happiness since we are so focused on the negatives whether it's from external news or internal ourselves. Our brains have been crammed with facts and theory but not how to "maximize the brain's potential to find meaning and happiness".
7 principles
- Happiness Advantage
- Fulcrum & Lever
- Tetris Effect
- Falling Up
- Zorro Circle
- 20 second rule
- Social Investment
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